Greetings!

This year brings new changes. Since the world has evolved to the point where most anyone can access the Internet, we have made the decision to go to an all-Internet format. This will allow us a great savings of both time and money, and allows you, the reader, instant access to the information you want. Better yet, you can now get our book The PTC Primer for free.

We understand that not everyone has convenient access to a computer in their home, or often, doesn't know how to get to a web page. However, virtually every public library has internet access, along with a willing librarian who can assist those who are not internet capable. Also, many times family members or friends have internet access. The savings in time and money allows us to continue to accomplish our goal: to inform and educate those involved with PTC in a prompt and compassionate manner.

So... from here on out, you'll find all the details you need on our web site. We still plan to do a newsletter once a year updating you on the latest information. Past newsletters will be available also. Our book The PTC Primer is ready for your reading pleasure, and you can add your name to our growing database of PTC members. Last of all, you can email me with any questions you may have unanswered, and I'll try to get you what you need.

Plan to check us out periodically; we will keep you up-to-date about PTC.

Thank you...
Sondra Johnson
email: ptcduncan@juno.com

 

To those individuals and groups who have sent in donations, we thank you. It is because of you that all of our work exists. Our organization is entirely non-profit. All research, writing, phone calls and web site time are donated; the money you thoughtfully have given has gone directly for printing, postage and Internet costs. Your gift offers needed information to people who live with this disease.

Once again, a special note of thanks to the Lions Club in Tionesta, Pennsylvania. Their generous donations have allowed us to give this information to you. Their goal is to save sight. Their assistance has allowed us to help save yours.

 

The PTC Support Network
Supporting research, treatment and medical care in partnership with people who live with this disease.
Disclaimer: Contents of this newsletter are for informational purposes only. Research, treatments, and
medications discussed should be discussed with your physician.
© 1996 PTC Support Network

 

 

 

Newsletter Table of Contents

The PTC Database.... What is it for?

PTC - THE 'INVISIBLE DISEASE'

Pregnancy and PTC: Two Physicians Speak Up....

Medical versus Personal Experience- Looking at PTC From Both Sides of the Fence

PTC Research: An On-Going Study

Related Support Groups And Web Sites

PTC People Speak UP

 

 

The PTC Database.... What is it for?

As of September 2001, we have a listing of over 1000 people with PTC in our database. Joining is free. This started out as our mailing list for our newsletters.

Why do we still keep it? For the benefit of specific members needs, and as a potential source of candidates for future PTC research. What we do NOT do with it is give out information to anyone for commercial or non-PTC purposes. (Your name, address, etc. are safe with us, folks.)

Examples of how we have used this database:
· one woman wanted to know if we had any PTC people in her land of Australia (we've got several); we sent her info on fellow sufferers 'down under.'
· a mother with a young son who has PTC wanted to know if we knew of any other young boys with PTC; we sent her the names of two others moms in the same boat
· a fellow PTC'er wondered if she was the only one in Atlanta with this condition; we sent her the name of someone else.

So, join our database! It doesn't cost you a thing, we'll keep your information safe and sound, and we'll only use it for good things. To add your name and info, go to the Add Me To The PTC Database web page and send us your info.

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PTC - The 'INVISIBLE DISEASE'

by Jennifer Duncan

All chronic and painful diseases are difficult to live with. They forever change the lives of those living with the disease. Pseudotumor Cerebri is no different. What is different about PTC, however, is that the symptoms and results of this disease are most often invisible- or not apparent to others.

I look like a I'm healthy middle aged woman. Others cannot 'see' my constant headaches, or 'see' the fluctuating pressure in my head, or 'see' my chronic back pain, neck pain, shoulder pain, etc. They cannot see the inflammation of the arachnoid layer of my brain and spinal cord. They cannot see the inflammation or 'blow-outs' of my internal LP shunt. People have a very difficult time understanding what they cannot see.

We hear from PTC support network members all the time who tell us that family, friends, even doctors have told them that their pain and their problems related to PTC are "all in their heads". Well, it is true that PTC is a brain disease, and the brain is in fact located in the head. However, not even Stephen King could imagine the pain associated with high pressure headaches, low pressure headaches, spinal taps gone wrong, meningitis, inflammation, blockages of shunts, etc....

Pain is real, and PTC is a very painful and very real disease.

The very name of our disease does not help our cause of eliciting understanding either. Pseudo directly translates to "fake". I don't think that Dr. Nonne was thinking of the emotional ramifications of naming a disease "fake" when he named our disease in 1904 . Actually, he named the disease Pseudotumor Cerebri because our disease has all of the symptoms of a brain tumor; however, no tumor is present.

I'm sure it made sense to him at the time, but it's hard to explain to our loved ones that our disease is not fake.

Our goal in this article, which addresses the concerns of our many frustrated members, is two-fold. We wanted to:

1. validate your feelings of frustration and let you know this is a common problem, and
2. help you educate your loved ones about PTC, thereby gaining understanding and empathy.
   

I decided to elicit the help of my personal therapist: Mary Jo Meyers, Ph.D., LPCC in tackling these objectives. When I discussed with Mary Jo possible ways of gathering understanding and compassion from our family, friends and physicians, she reminded me once again of the life lesson: · You cannot control or change what other people do or how they act.

You can only control how you let their responses affect you.

We who are living with PTC can educate those in our lives with the facts about PTC. I would encourage all support people in the lives of PTC patients to read our book The PTC Primer, read our network newsletters, go online to some of the PTC chat rooms, or search out related web sites to learn all they can about PTC. I would hope that this information will affirm some empathy and compassion for those of us living with PTC.

However, the fact is not everyone is capable of showing compassion. Sadly, many people must firsthand experience pain in order to have empathy for others in pain, or have firsthand experience of surgery to understand the arduous road of recovery. We cannot MAKE these people understand about us, about the disease and ramifications of PTC, or about our pain and suffering.

Instead, we can learn to be our own allies, learn to treat ourselves compassionately and with loving kindness. The following are some very basic ideas of self-care but are essential to living well with PTC. Isn't that what we all hope for?

• Choose health professionals whom we can trust and who respect us.
• Eat nutritiously.
• Exercise as much as we are physically able, find exercises that work with our unique abilities.
• Get appropriate rest.
• Do healing emotional and spiritual work to cultivate gratitude and joy in our life.
• Accept ourselves and our life with PTC. Deal with our limitations and build on our abilities.
  

Our life is happening now. When we are sick we often act as if our "real life" has stopped and will not resume again until we are better. Make the very most of the life we are living. Now.

Supportive people are important in our lives. Loneliness itself can be a breeding ground for physical and emotional discomfort. If you do not feel supported by the people currently in your life, then widen your circle of friends and support. This can be a significant part of your healing process, and will help you learn how to live well with PTC.

(Special thanks to Mary Jo Myers, Ph.D, LPCC for her input on this topic and for quotes from her book: "Healing Inner Work For Body and Soul" used in this article.)

If you are interested in ordering a copy of "Healing Inner Work For Body and Soul" which our network highly recommends as a practical tool for emotional/spiritual work, send USD $23.00 including shipping and handling to:
Mary Jo Myers, PhD
7467 E. Main Street
Reynoldsburg OH 43068

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Pregnancy and PTC: Two Physicians Speak Up....

Pregnancy is a frequent concern with women who suffer with PTC. Early information regarding pregnancy and PTC has been incomplete and contradictory. We asked two experienced neuro ophthalmologists for the latest information. Their comments follow:

Dr. Susan Benes, Neuro Ophthalmologist at Ohio State University, Columbus, Ohio:

"Many patients are just fine through their pregnancies. Actually, getting pregnant can sometimes be a problem, but the younger and the more recent the PTC, the easier the pregnancy is to begin. Then, watch the weight and try for a limit of 22 pounds weight gain so there is no net gain. Breast-feeding is fine, but although the diamox seems to be safe (1 reported case of a birth defect, which might have been totally unrelated), it may not be a good idea for breast-feeding. This is a topic of mixed reviews.

"Headaches are worse with any hormone manipulation ,such as fertility drugs and birth control pills, in people who have migraines. Since migraines are common (10+% of kids and 25-40% of adults,) it is only logical that people with PTC can also have migraines. Oddly, it seems that PTC changes the hormones enough that there is often a 180 degree change in the pattern of headaches from the norm. For example, many of my miserable patients pre-pregnancy seem to feel great with fewer headaches while pregnant. Why? Because they are happy and exhausted physically and sleep better? Some of the patients with LP or VP shunts notice a worsening of the headaches as they get bigger (as the intra-abdominal pressures rise, causing more back pressure up the tube), and one of my patients had her LP shunt fall totally out of its normal space. This shunt ended up wound up in her belly at the time of the C-section.

"The Ob/Gyn docs help decide about the C-section vs. vaginal route. If the PTC is poorly controlled with bad papilledema and venous engorgement in the eyes already, then the breath-holding and pushing of labor can cause hemorrhages. But if the ICP is controlled and there is no papilledema at the time of term, then labor and delivery are OK. Another factor is the anesthesia. If there is already tubing in the LP space, the anesthesiologists are more reluctant to do epidurals and find another space. But that varies.

"With visual loss, I personally would do things in this order:

(1) treat a pregnant lady like any other, with a lumbar puncture followed by diamox or neptazane (fewer side-effects)

(2) then try multiple spinal taps (LPs) and/or short courses of steroids (these are actually good toward the end of pregnancy if there is concern about the baby's readiness for birth. Premies are often treated with steroids to get their lungs"ready" for birth. In addition, there are a significant number of women who have Lupus or other auto-immune diseases, including Graves' disease or myasthenia gravis, and the steroids are used for them.

(3) then I would personally want an optic nerve sheath decompression if I were still losing vision, rather than an LP shunt, unless my pressure (OP) were 500 plus, because I personally do poorly with in-dwelling objects.

(4) but if the pressures are that high, then the LP shunt is a good option for at least 50% of the patients. The other 50% have the complications of persistent headache, over-filtration (low-pressure), under-filtration (kinks, clogs, movement, etc..), infection, chronic inflammation. etc. So, the PTC person may be like any other lady with PTC in most ways. There are some people who only have PTC during pregnancies and are fine otherwise."

 

Dr. Deborah I Friedman, Neuro Ophthalmologist at SUNY
Upstate University, Syracuse, New York:

I have Pseudotumor Cerebri: Is it safe for me to Have a Baby??
"IN short,yes! Many patients ask me about this, having been told that they should never get pregnant, that pregnancy will worsen their PTC, or that they should terminate their pregnancy if they have PTC. Although there is never a guarantee, most women with PTC are easily treated during their pregnancy.

Let's take a look at what we know about PTC and pregnancy:

"The only study in the medical literature that looked at PTC in pregnancy showed no increase compared to women of similar age and number of previous pregnancies. However, about 15% of women of women with PTC seek medical attention for symptoms during pregnancy, or to relate their onset of symptoms to a prior pregnancy. Weight gain, fluid retention and hormonal fluctuations are common to both conditions. Most develop symptoms during the first trimester. Some women relapse with later pregnancies. PTC in most patients can be managed during pregnancy with minimal treatment. There is no known problem with fertility treatments in PTC patients. The prenatal vitamins should be checked for their Vitamin A content.

"I generally advise discontinuing all medications possible and treating with occasional lumbar punctures if needed. Weight Gain should be limited to 20lbs. Acetazolamide ( Diamox ) can be used after 20 weeks if necessary, but Thiazide diuretics should be avoided. Since the most worrisome feature of PTC is visual loss, patients should be followed throughout their pregnancy by an Ophthalmalogist or Neuro-Ophthalmalogist to monitor their vision, including visual field testing. In a stable patient with no visual loss, visits every 2-3 months are usually adequate.

"Patients should call their doctor immediately if they detect any change in their vision between visits. If there is visual loss, corticosteriods or a surgical procedure is performed to relieve the increased pressure. Depending on the expertise in the area, either optic nerve sheath decompression or lumboperitoneal shunting is acceptable. Optic nerve sheath decompression usually requires less anaesthesia time, always a consideration during pregnancy.

"Medical treatment of chronic headaches from PTC is particularly challenging during pregnancy. Analgesic rebound headache occurs in PTC patients, and some women have worsening of previous headaches related to hormonal changes. Thus, not all headaches in pregnant PTC patients are caused by increased intracranial pressure. I instruct patients to submit a diet and symptom journal and recommend a low Tyramine diet. Most of the medications that are used for headache prevention are not recommended during pregnancy. The safest analgesics are Merperidine or Acetaminophen with Codeine, but neither is appropriate for frequent use. Occasional lumbar punctures can often ease headache symptoms. Surgery is not appropriate for the treatment of headache alone.

"The prognosis for PTC in pregnancy is excellent for both mother and baby. Some patients may continue to have symptoms after delivery, but others will have remission or a fluctuating course. Women with PTC who are considering starting a family should be advised to plan each pregnancy, in order to adjust medications in advance and arrange appropriate monitoring by the Neurologist and Ophthalmalogist. Communication between the doctors treating the PTC and the Obstetrician throughout the course of the pregnancy is critical, although PTC does not generally place a woman at 'high risk'.

"The increased intracranial pressure occurring during labor is transient and not harmful. A Caesarean section is NOT required and no special precautions are necessary for anaesthetic agents at the time of delivery".

(For more information, refer to Dr. Friedman's article The management of pseudotumor cerebri during pregnancy. Headache 2000;20:495-497)

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Medical versus Personal Experience-
Looking at PTC From Both Sides of the Fence

Comments from PAMELA SNOOK
(Pam is a PTC patient who is also an experienced nurse. She's worked in public health and spent 17 years in critical care nursing, mostly in cardiac and trauma. As a result, she has worked a lot with head injuries, brain tumors and strokes.)

regarding narcotic use: "The difficulty I'm seeing with the narcotics is that the medical complications occurring are worse than some of the pain disorders. Renal failure is only one of them. It seems that a pain doc may sometimes go overboard on oxycontin and oxycodone. Methadone is being used in higher doses now for pain here than for heroin withdrawal. And, the folks on them keep admitting to the hospital with narcotic related disorders. The other part is the behavior that was previously associated with addicts is sometimes the same. . Aside from renal disease, the reduced bowel motility seems to result in numerous related hospitalizations that would not have occurred otherwise."

regarding protein and PTC: "What I'm told is happening is that the protein clogs up the arachnoids which makes it impossible for me to reabsorb the cerebral spinal fluid. This is the same mechanism that causes PTC in people with MS and Lupus. I probably have the secondary form that you hear mentioned because I chronically run a high protein. In my case the thought is that it is from an earlier case of transverse myelitis."

regarding doctor's attitudes with PTC: "I'm concerned with the rather cavalier attitude that is displayed by so many physicians once the PTC diagnosis is made. These symptoms are not ignored when they aren't chronic and their clients aren't treated this way with diagnosis of other conditions or a brain tumor, but the problem is still basically the same. It's just that one is chronic and the other is acute with an end. Why is this?"

regarding spinal taps: "There is more than one way to measure pressure during a spinal tap. The old way was with mm/hg or mercury. This was a two digit number- to convert it to the 3 digit number you multiplied to two digit number by 11.6,13.6, or some such prime number to get the mm/h20 which was the three digit number. As the years went on and electronic monitoring became popular, often times the 2 digit number was used instead for measuring for mm/H20.
"It is very rare for anyone to use the old method anymore. So, in that case, you take the 2 digit number and multiply it by 10 to get the 3 digit number-that's the conversion factors. Basically, anything over 20 is troublesome. The low numbers are rarely significant. They are usually the result of probe or needle positioning. However; many of these values are evaluated by trends over time, and the therapeutic modalities involved. So if your meds are working, you should have a closer to normal reading. And, if you normally run 39 or more, you probably don't want the pressure to drop below 20 in one fell swoop. You would get a spinal headache with this type of change.
"According to the Merck normal is 100-200. The two digit numbers can be be in reference to two things. The three digit system refers to mm H20 as the measurement. The two digit refers to mm/hg, or mercury. You multiply the mm/hg by 13.6 (I think that's the number) and you get mm H20. This is a very old way of figuring spinal pressure. However; in many cases the doctor will just drop the third digit, and is referring to mm h20. This is because you get used to using monitoring equipment over the past few years which reads out with 1-20 as the norms. (As in ICP monitoring). I can't remember the exact number for mercury reading and, it would be real unusual for a doc to be referring to the old method, unless they were like a bio chemist or an older physician. Any way, when I get down to 19 or 190 I feel good. If I get much lower, I talk like a drunk. And, the spelling is worse, and I have a lot of trouble concentrating. One doctor thought this was because I had probably become accustomed to very high pressure over a long period of time, and that the lower pressures maybe stretched things a bit. Who knows? I begin to feel bad around 270 or 300. I've had one spinal done where I was 340-and that was a good day. Go figure. My heart rate does go down to normal when my pressures are lower, and my blood pressure is better, too."

regarding meds: "Diamox and ASA (aspirin) shouldn't be taken together WITHOUT THE PERMISSION OF YOUR DOC. The number one symptom that we probably wouldn't even notice that we would have problems recognizing as the main symptom of too much of the "acid" involved is ringing in your ears. (Mine ring all of the time it seems.) However; with the permission of your doctor you can take advil/celebrex, vioxx or some other NSAID. Some of these are prescription. However,they can interact with other health problems that you may have. Usually advil is okay.
"The reason you don't take the aspirin with the diamox is because of the chance that you can become acid toxic. Both medications can cause acidosis (usually your body says at a certain pH and the acidosis can cause problems with your kidneys) As far as taking ibuprophen or tylenol, both should be fine; although high doses of ibuprophen might make the indigestion worse. You might be better off taking something like naproxin or aleve for inflammation. I was on Diamox for almost 1 year. I really had bad heartburn and yucko stuff going on, so the doctor told me to take Pepcid AC - it REALLY WORKED. Also, I noticed that when I was smoking, the tingling was much worse."

regarding exercise: "As far as the tiredness goes, any sort of exercise will increase your energy levels, so don't shy away from exercise if you have enough energy to get started. The Diamox must do something to control appetite because I've been off of it for about 2 months and have noticed some weight gain."

regarding ICP monitoring: "I'm going to compare it to the ekg monitoring that is over the bed of a patient on tv. That is simplistic, I know. Anyway-there is a drain or device of some type inserted into the skull that continuously measures Intracranial pressure-i.e. icp monitor. This allows the caregiver to know when the pressure is going up after a procedure or head injury. By determining what the level is, they can then treat the elevated pressures as they occur. Also, the monitoring device is sometimes attached to a drain that allows for lab testing of the cerebrospinal fluid as well as drainage after a procedure. I've never had anyone complain about the device itself being painful. They usually complain of various problems associated with their illness, and not the device itself."

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PTC Research: An On-Going Study

(Editor note: this was an update sent to us about the following study dated 8/4/00)
Dear Sondra,
Our study (see below) is still in progress and we are still looking for volunteers---to date we have approximately fifteen participants, which is well short of our goal. What we have found though, is that more than 80% of our participants have shown to have an underlying clotting defect---that is, that they have a problem in forming too many clots or not being able to dissolve existing ones. This was the underlying hypothesis for our study and we are very excited about the results. Unfortunately, the study is still too small for us to make any concrete conclusions and we would highly appreciate it if you could mention our study in your next newsletter and indicate that volunteers are still needed. The blood work and consultation are free of charge and as I indicated previously, we are finding significant clotting abnormalities in a majority of our participants.
Sincerely,
Srinivas Iyengar M.D.
email: srinivasiyengar@hotmail.com

A clinical research study at the Jewish Hospital Cholesterol Center,
3200 Burnet Avenue, Cincinnati, OH, 45229.
Phone 513-585-7800, Fax 513-585-7950,
email: glueckch@healthall.com.
Our hypothesis is that patients with PTC might suffer from an underlying clotting "defect"---that is, that the body is either making too many clots, or cannot get rid of existing ones, or has a combination of the two.
Purpose: Our specific aim is to assess major thrombophilic and hypofibrinolytic pathoetiologies of pseudotumor cerebri ('benign' intracranial hypertension). Our second specific aim is to determine whether treatment of the intracranial hypertension with Diamox will produce symptomatic relief. We postulate that when exogenous thrombophilic factors (estrogen-containing oral contraceptives, estrogens, corticosteroids) are superimposed on heritable thrombophilic and/or hypofibrinolytic coagulation disorders, multiple ischemic cerebral strokes occur. We postulate that as these strokes resolve, they leave a residual effect of increased intracranial pressure, either by virtue of reduced cerebral clearance of cerebrospinal fluid (CSF), or increased production of CSF, or both. We expect that most patients seen by ophthalmologists with pseudotumor cerebri can be shown to have a coagulation disorder as the pathoetiology, particularly when exogenous estrogens are superimposed on a coagulation disorder.
Significance in Relationship to Human Health: Recently, it has been realized that sequelae of ischemic stroke, particularly those ischemic strokes mediated by coagulation disorders, may be pseudotumor cerebri (intracranial hypertension).1-8 The major initial clinical symptom of intracranial hypertension is intractable headache. The longer term optic pathology resulting from intracranial hypertension includes papilledema and progressive loss of visual acuity.1-8 We have recently studied two young women who sustained ischemic stroke after thrombophilic oral contraceptives were superimposed on heritable thrombophilia (protein S deficiency, heterozygosity for the prothrombin gene), with subsequent development of intractable headache, and eventual diagnosis of pseudotumor cerebri.
Most cases of pseudotumor cerebri are seen by ophthalmologists, some by neurologists, and some by family physicians/internists. Historically, because pseudotumor cerebri has been considered largely "idiopathic", no concerted effort has been made to assess the interactions of coagulation disorders, exogenous thrombophilic vectors, ischemic stroke, and pseudotumor cerebri. The diagnosis is important for the following reasons:1. It allows safe, successful treatment of the intracranial hypertension with Diamox. 2. It protects the eyes. 3. It facilitates preventive measures to protect against other venous thrombosis (thrombophlebitis, pulmonary emboli, stroke, etc).

Method of Study: Patients: We plan to study 30 new patients seen by ophthalmologists because of pseudotumor cerebri, irrespective of whether they had overt ischemic strokes. Separately, we plan to study 30 new patients with intractable headache after ischemic strokes which occurred while taking oral contraceptives or exogenous estrogen supplementation.

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Related Support Groups And Web Sites

Support Groups

The American Chronic Pain Association (ACPA) is a non-profit, tax exempt organization with more than 800 chapters in the United States, Canada, Australia, New Zealand, Mexico, England, Ireland, Scotland and Russia. Our purpose is to provide a support system for those suffering with chronic pain through education and self-help group activities. We seek to get members out of the patient role and back to being a person.
Groups are open to all persons suffering with chronic pain, regardless of their race, creed or chronic pain. Non professionals may do therapy of any kind during group meetings and groups are not affiliated with any hospital or other such institution.
PO Box 850, Rocklin, CA 95677
Phone: (916) 632-0922
Fax: (916) 632-3208
E-Mail: ACPA@pacbell.net

Pain Net, Inc. was developed by physicians, educators, and business professionals, to provide educational and support services to physicians, and other health care professionals throughout the nation. Pain Net, Inc.'s services in the arena of pain medicine / management, and functional restoration include: Credentialing by Procedure, Educational Programs, Managed Care, Patient & Physician Advocacy, Practice Development, and Quality Assurance.
http://www.painnet.com/
"The philosophy, that you have to learn to live with pain is one, that I will never understand or advocate. Pain Net, Inc. physicians know there are often positive alternatives, which invalidate such a philosophy. The goal at Pain Net, Inc. is to educate the providers to access these positive state of the art, diagnostic, therapeutic, medical options and make them available to patients who are in need." W. David Leak, M.D., D.A.B.P.M. Chairman & C.E.O., Pain Net, Inc.

 

PTC-Related Web Sites
(For listings of additional web sites not listed here, check out the Related Web Sites web page)

"Anyone considering a gastric bypass- there is a wonderful site called obesityhelp.com that goes in to detail about the different types of weight loss surgery, has a list of insurance that have been known to cover, and talks about what ins need to cover it" http://webeye.ophth.uiowa.edu/dept/IIH/pc_index.HTM

E-Medicine website has interactive pictures of what PTC looks like in the eye- and you can move your mouse around to interact with the picture. http://www.emedicine.com/NEURO/topic329.htm

http://www.painnet.com/

www.invisibledisabilities.com

http://www.geocities.com/elfsmommy/index.html

http://www.angelfire.com/ok/PTCSupportNetwork/

http://webeye.ophth.uiowa.edu/dept/iih/pc_index.htm

http://yoursurgery.com/data/Procedures/hydrocephalus/p_hydrocephalus.htm

Cool Internet support group ongoing web site- http://www.geocities.com/elfsmommy/index.html

Websites that explain shunts.
1. http://www.yoursurgery.com/data/Procedures/hydrocephalus/p_hydrocephalus.cfm
2. ("Here's a site for an article for MEDSCAPE. If you aren't registered at MEDSCAPE, then go to www.medscape.com and register. It's free. You do need to approach it from the sign in page. It looks like the article was in Volume 7, number 4 in 1999. Use key words pseudo-tumor cerebri or VP shunt"). www.medscape.com/AANS/NF/1999/V07.n04/nf0704.10zema/nfo704.10.zema-01.html "Seven-Year Clinical Experience with the Codman Hakim Programmable Valve"
3. http://www.jnjgateway.com/gateway_global/user/gateway.cfm?jnjgateway= contentDetail&m

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PTC People Speak Up

(Editor's note: As I talk to people with PTC and monitor PTC email support groups, fellow sufferers give out excellent advice and information. Below is a compilation of tips and details that will surely help you in your daily life.)

Regarding PTC and pregnancy:

"I have had PTC for four years now and we just had our first baby in December. I have an LP shunt also. I was followed as a high risk pregnancy. I was fortunate not to have any complications. Every now and then she would get on my shunt and my pressure would rise, but it never lasted for more than 24 hours. I also was not allowed to have a spinal or epidural. If I would have had a c-section, I was told that they would have to put me completely under. I was told that there was no risk to the baby, just the possibility that I could have a relapse or that my shunt would break and I would have to undergo surgery after delivery. It was well worth those chances. My neuro-surgeon worked with my OB and my eye doctor, everything was fine. I also suffer from depression (no wonder with this darn disease :-) I took Paxil during my whole pregnancy. You should do whatever is best for you, if you feel you can handle having a baby right now, then do it and be happy with the decision you made."

"I was first diagnosed almost 4 years ago now when I was 6 months pregnant at the time. I had lost almost all of my vision and had Optic Sheath Fenestrations on both of my eyes, a course of LP's, was started on a treatment of steroids and later the Diamox. There was great concern about the continuation of the pregnancy and I was pushed to have the baby delivered immediately (which I flatly refused). My baby was fine, and my vision improved. My second pregnancy went rather smoothly despite the doctor's dire predictions and my baby is now almost 5 weeks old."

"Weight was an issue at one time, but I NEVER had one problem w/ PTC during any of my pregnancies."

"Thanks to some wonderful tips on the birth control pills by some of you here, I've done great. I called my gynecologist about a month ago and requested she put me on the lowest dose of estrogen that she could. I have been virtually headache free and functionally almost normally since the day after my first dose. Regarding those who had said their docs had taken them off birth control... That wasn't an option for me."

 

Regarding PTC symptoms:

"The weight issue is SO frequently used by doctors who do not understand the condition, but many of us have found that when we lost weight, the PTC got worse - just like it did with you!"

"I had the same thing happen to me when I lost 65 lbs. The weight loss seemed to make it worse & my pressure just went up & the Diamox quit working. I am happy about the loss but it can not be the scapegoat here."

"My PTC flairs up big time when it rains.I feel the increase in pressure about 24 hrs before it begins raining and it usually begins to decrease the day after the sun comes out. Even since getting my shunt, I have had this problem."

"My neurosurgeon told me to get a Medical Alert ID stating that I have PTC and that I have a shunt on the left side. I think it is a good idea that people with ptc who don't have a shunt also get one in case of a car accident. Trauma to the head can increase the head pressure but if a MD in the ER does not know your history and does not see the increase on MRI / CT scan, they may not do a LP and drain fluid which maybe needed to be drained."

"I've been seeing a chiropractor for almost a year now and it's been wonderful. He does cranio sacral therapy on my head and it has alleviated a lot of my headaches."

"I've discovered in the past few months, some things that have helped me a tremendous amount. I joined a gym, lost weight and changed my diet by eliminating all dairy and wheat (I've always eaten healthy)."

"My PTC pressure climbs and it doesn't go back to normal for a long time after a plane ride."

"I noticed that patients with PTC complain of pain in the neck, lower back, hips, and legs. I recently started seeing a chiropractic neurologist. She treats neurological disorders through the use of chiropractic. She found that my sacrum was stuck. The sacrum is a series of vertebrae at the base of the spine that are fused together. When it moves, it moves the spinal fluid in the spinal canal. It also is the home of the nerves, which go to the hips. My doc loosened mine and I saw results immediately. My head aches less. My blind spots shrunk over 50% after my second visit. My dizziness is minimal. My life is bearable. She said that there are only 500 chiro-neuros in the US. If you would like to contact her about chiropractic PTC treatments or a chiro-neuro near you, contact her via email at newlifechi88@cs.com."

"Several of us with PTC have this same rash. It really makes me wonder. My rash is on the inside of my upper legs. It doesn't bother me much, just sometimes it itches or gets a little irritated."

"You said your rash was itchy - so was mine. It nearly drove me mad. Nothing worked. I tried lotions, creams, oatmeal baths, you name it."

"We got a lab study of my hormone levels checked the other day. Get a load of this... I am pre-puberty. My FSH level & LH level did NOT register!!!"

"I've dropped 45 pounds in the last 5 months and am now having symptoms of the pressure being up again: nausea, sensitive to noises, noises/sounds in ears and head, and overall fatigue and lots of confusion; vision problems too. I hate this illness!! I do not have the time or energy to deal w/ it right now. From examining the recurrences that i've had, the one prevailing factor that is evident in each case is stress and depression."

"If the headache goes away when you lay flat for a while or decreases in intensity, then it is a low pressure headache from spinal fluid leaking until the needle insertion hole fills in. If you continue to have the headache and laying down does not affect the intensity, then it sounds like it is still PTC related."

"Also, regarding your rain question, the rain definitely affects my headaches!!! I have severe headaches when the barometric pressure changes (which happens when it rains). My h/a's are super bad about 1 - 2 days before a several-day rain and 1/2 day to 24 hours before smaller storms. I can predict the rain with my head..."

"I would make sure to get a potassium level checked, even on Diamox (especially if on Lasix - and for the last year, I was on them both at the same time). My level got as low as 1.9 which is VERY low (they had to put off my shunt revision when it was that low until they could pump some potassium in me, which for those who don't know, burns your veins worse than any medication I have ever had in my IV). Some MDs think that Diamox does not throw your potassium level too much and do not do regular checks; I disagree with this practice and think everyone needs this level checked w/ any diuretic until the MD knows how you react to it. Potassium is important in heart functioning and so much more with your daily body functioning."

"When my PTC was first beginning, I had numbness and some pain all down my arms and in my neck, etc, bad enough that they thought I was having a stroke at first. Doctors all act like it is completely uncommon to PTC, but almost everybody has experienced something like it. It would make sense to me that if our spinal column and skull are so full of fluid that there is this tremendous pressure then wouldn't it be putting pressure on everything surrounding it from your head clear to your tailbone? Wouldn't that mean any nerves at all that are around the spine and head would be under pressure. I mean if it can put enough pressure on your optic nerve to make you go blind, it would make sense that it could put enough pressure on other nerves to make you go numb"

"I do have numbness in the whole left side of my left leg and foot. I also have horrible muscle spasms and am unable to walk more than around the house. I went to an Orthopedic specialist last Wednesday and he took x-rays and said it is not the bones."

"I have noticed myself making mistakes that I never made before. I was very detail oriented, awesome at spelling and grammar. Literature has always been my strong point. Now I have to regarding-read things 3 and 4 times and I still find mistakes. I have to have friends read them because I can't seem to catch everything"

"I also have developed a speech problem. I say the wrong word at an inappropriate time. It's almost as if the synapses are not completing or getting crossed. I describe it as thinking of a circle clearly in my mind but not be able to recall the word "circle". I usually would replace it with a similar word like "square." I slur my words sometimes which never happened prior to PTC. My neuro says these are side effects of the PTC."

"I have to agree with the sight problem being worse on the left side mine is too. As for what the left side of the brain does, the halves or hemispheres of your brain are pretty much mirror images when it comes to neurological function. The left side controls the right side of your body and there right side controls the left. According to my neurologist, the only problems other than the obvious side effects from ptc that you might experience neurologically is possible a loss of words. The vocal part of your brain is in the front part to the side, near your temples. And if pressure is too great on these areas, you might experience some problems with speech or finding the right words when you are talking. I have experienced some of this and it is strange. You know you have the word somewhere, but it just won't come to you. He told me this is a rare side effect, but it can happen.
"I always thought it was strange also that most people in the group talk about their left eye being the worst. My left eye has always been the worst."

"I have lost a total of 39 pounds since the end of August when the ophthalmalogist said he thought I might have PTC, and he said weight loss is known to help. (I actually feel worse after I drop pounds. I'm convinced it releases toxins and estrogen stored in fat that my body has to sluff off)."

"Some may say sodium is not the problem. But my Doctor here at the time told me to cut all extra sodium out. It helped me. I can tell when I have had to much or just a little sodium because I get headaches or migraines. I had them so bad when I was first told I had PTC that the only relief I had was to sleep."

"Does anyone else suffer from the bizarre cravings for pickels and olives??" My husband is an RN and he thinks it's due to the fact that I have so much fluid in my head, that my body craves salty foods- to get my body to also swell up and even out the pressure....

 

Regarding treatments and procedures

"I have taken narcotics for over 10 years for headaches (since 1989) and taken them daily for at least 4 years (since diagnosed w/ PTC). Believe it or not, Ibuprofen and aspirin, Tylenol, etc can also give just as bad rebound headaches as narcotics if used more than three days per week.Since being diagnosed with PTC and finding out what was causing the daily headaches, my primary MD (she monitors and controls my pain meds) felt that since PTC is a chronic condition and I was using so many different narcotics every day, she wanted me on one long term narcotic, like what they use for cancer patients or AIDS patients. This is why she has put me on the Morphine.

"I used to use a LOT of Stadol. Since getting off the Stadol, I have found that my concentration has improved. I function much better on Morphine than I EVER did when I was taking a few different types of pain meds. I currently take a time released form....MS Contin - 90 mg in the morning and at night and I take regular instant release Morphine in the form of 30 mg 4 times during the day for "break thru" pain. This totals 300 mg of Morphine per day. I have tried the following before coming to this regimen: Lorcet 10/650, Demerol 150mg, Toradol 60 mg Injections, Fiorinal, Stadol 2-4 mg, Codeine/Tylenol #4, Percocet/Percodan, Tylox, Vicodin (which is the same as Lorcet), etc. As I said, for me, Morphine in the long lasting form controls my pain best and allows me to concentrate at both work and at home."

"I found craniosacral helps me. Dr. John Upledger of Palm Beach Gardens, FL is the osteopath credited with developing it. It is a very light touch that opens and balances between the cranium and sacral . from head to tail bone. Massage therapists, physical therapists, chiropractors or osteopaths are most likely to have taken the training. My therapist works on different sections of my head and especially stimulates the nerve at the top of my head, which causes CSF absorption.
"When we first started, the occipital region of my head was too tender to touch or adjust. Today (about 8 weeks into therapy), I was able to handle that area adjusted. I have heat rushes, which are healing releases, and my scalp tingles with oxygenation often after a treatment. Between deep lymph drainage and cranio sacral, I almost never have a stiff neck anymore. I still have migraines triggered from fluorescent and sunlight, but on most days I don't have the constant HA either. I find sinus congestion or flu or cold bring on HA and make it more difficult to get rid of them . but my predominant state is pain free! This is without diamox or other prescription diuretics and without any surgical interventions."

"The programmable shunt is a Codman-Hakim valve made by Johnson & Johnson. It has 18 different settings from 30 to 200mm. It is programmed from outside the body with a device that is magnetic. It takes about 5-10 seconds to program & then verify by x-ray or fluoroscopy. This valve is only FDA approved for use in the V.P. shunts but is used in Lumbar-Peritoneal & Lumbar-Pleural shunts. Many Dr.'s won't attempt it, but is done."

"I am on Topamax and love it. It is a seizure medication, but it help reduce my overall pain and headaches. I have lost 50 60 lbs since starting on this med. It has helped me loose weight w/o me doing any exercise at all. It was put on the market for seizures, then got approved for pain disorders and Migraines / various headaches. A side-effect was that soooo many people were losing weight at a good speed (not too fast) from it that it has since been approved for weight loss. It is fairly new to the market. The GOOD thing is it does NOT have the negative side effects that most seizure meds have such as disorientation, vomiting, fatigue, etc. if your MD weans you up on the dose slowly."

"I had the Optic Nerve Decompression on both eyes at the same time in November 1999. Next month will be one year. I was going blind because of the PTC pressure on my optic nerve. God sent my neuro-ophthalmalogist along just in time. He saved my eyesight and has restored it almost 100%. I had a check up this week and we are going to start weaning me off Diamox. I would repeat it again if I had too. All I can say is that I have had excellent results with the surgery and I would recommend it to anyone that needs it."

"Between January 1998 and July 1999 I'd already had 16 or more spinals. I was having many problems with my back hurting so bad I couldn't work or drive. All I could do was lay flat. I was told that I had so much scar tissue in my back from spinals that it was pressing on the nerves in my hips. I saw the Neuro-ophthalmalogist the end of August 1999. We talked about the optic nerve sheath decompression. We scheduled surgery for the next week. I had the surgery and it went great. I healed fast and my vision came back. I highly recommend the optic nerve sheath decompression to anyone because it does work."

"Last month I had a lumbar Monitor placed in my spinal area to make sure that a shunt was what i need----and when I went to sleep my pressure went up considerably, The neuro said this was very normal in PTC patients. After 48 hours of monitoring I was told that I would need a lp shunt."

"My neuro is having me get a MRV, this is done in an mri machine & it shows the VEINS of the head only. We chose this over an MRA which shows only the arteries. No dyes are used for this procedure. In an article by a Dr Glueck, he states that some women acquired PTC because of a hypercoaguable state of their blood. This is when your blood gets too thick & therefore it doesn't drain properly out of the veins in your head & then spinal fluid gets affected. He said birth control pills can cause this hypercoaguable state & then cause the PTC. The MRV imaging the venous system of the head would also show if there is a cerebral venous thrombosis."

"The Lumbar monitor was like a catheter that they place in your Lumbar area and then hook it up to computers to measure your CFS over a period of time---then if they want or feel the need to, as in my case they did --they can begin to drain the fluid off you, It was like having a shunt on the outside of me for a day---the fluid goes in a bag that u carry around with you."

"I am on the Neurontin as well and my memory is terrible lately.... It is so embarrassing when I am in the middle of a sentence or story and I go totally BLANK. Then other people around me will tell me that it is normal, not to worry that they do that all the time..except that they don't.....not to this extreme, anyway. I asked my Neuro about the severe memory loss and he blamed it on the Neurontin"

"I spoke to my doctor about Topamax, he stressed that it was important not to mix this with Diamox. Just a heads up to anyone."

"The Topamax will surely decrease your appetite and also help with pain and headaches or Migraines. I have Migraines and mixed h/a's in addition to the ptc h/a's. Topamax for me has been a life saver. It is a drug you need to ween up on SLOWLY. I started on 50 mg a day for a week, then 50 mg twice a day, then 100 mg in AM & 50 in PM, then kept increasing it by 50 mg a week until I reached the dose I am at which is 400 mg per day (200 twice a day, and they do make 200 mg pills). If you do go on it slowly, it does not have bad side effects. If you start on too high a dose too fast, it can cause problems that most seizure meds do (it is a seizure med) EX - poor coordination, memory problems, poor concentration."

"About opthodynometry(sp)- They check your pressure through your optic nerve. This is to be done by a neuro-opth but is accurate. It can be done without a spinal. It is controversial whether it is exactly accurate. but my eye doc and the article say that they did do a study of the people who did a tap and the eye thingy and pressure was the same. My eye doc said it is about as accurate as you can get!"

"Hi, is it possibly Fiorinal w/ Codeine that you are on? That is what they finally put me on and it works pretty good for the headaches, and does not have bad side effects."

"Keep in mind that it takes Diamox 4-6 weeks to really start working good, according to my doctors. I have been on Diamox for close to two years now. The side effects continue to improve with time. I can almost taste some kinds of soda again. The tingling is almost non-existent now. I still get tired, but not as bad as before. I still get cold all the time, but I have learned to dress accordingly. All in all I guess I am saying I have adjusted to living with the effects from the Diamox and they get much better with time."

"I've been taking Diamox for almost 10 years. I'm now down to 1500mg Diamox Sequel. I take it at bedtime. I have no problems anymore. I've never had surgery or a shunt. I used to have a very hard time with Diamox. .tired, tingling, taste loss, etc. One suggestion. . . see if your doctor will let you take the Sequels. I did SO much better with those."

"Diamox Sequels are time release capsules so you only have to take 1 or 2 a day instead of 4 or 8. I have been on sequels for a year now and I did much better once they switched me. I think it helps the medicine go into your system at the right times and you don't have to remember when to take them and worry about missing pills and getting headaches etc. Now I am down to 1 sequel a day 500mg plus the Neurontin. It is really helping me maintain a nice balance right now with very few headaches."

"I'm having the bypass done strictly because of the ptc. I am overweight, however. When they form the new pouch with staples, the old stomach stays as is...the intestine is rerouted so it empties the new stomach. Hernias at the incision line are one of the biggest complications. One of the best websites I have seen, as far as thorough information is, www.surgcliniccentar.com. It from an obesity surgery center in Arkansas, but it is quite complete. Anyone who is interested in the surgery should do LOTS of research and self educating, as with a shunt surgery or any other kind of surgery.."

"My doctor told me that the LP has smaller life span than the VP and more than likely a revision would be needed in the future. He said that their was less of a risk for meningitis with the LP immediately following surgery but it could happen so I was to plan on being in the hospital for a minimum of 3 days. The LP was also less invasive and recovery would be faster. He stated that the VP had a much higher life expectancy and the chance of revision would be less. However, the meningitis risk was greater as well as developing a subdural hematoma. The surgery would be longer and more invasive because of the extra tubing involved. He also stated that with VP surgery, the doctor has to hit that ventricle the first time."

"A LP shunt will empty into the stomach. A real small tubing will go into the spinal canal, then to the side to a valve, and to the stomach cavity. I have a LP Shunt and have had it for going on 12 years now."

"In your operation, did they just make slits in the Optic Nerve Sheath for the fluid to drain out or did they actually cut a small window in the nerve sheath. Do you know? That is the basic difference I have heard between the two surgeries. With mine they cut out a small window, not sure what size, in each nerve sheath. The window is supposedly bigger so it doesn't grow back together as easily as the little slits would. My doctor did say that less than 1% of patients do have it grow back and have to repeat the surgery. At the time, out of 350-360 patients he had only had to do a repeat surgery on 3 or 4 people max."

"The shunt will empty into the periotoneal cavity, which is the area near the abdomen. The shunt does NOT empty directly into the stomach (it would cause upset tummy's w/ the CSF, etc). The fluid was not able to be absorbed by the ventricles in the brain/spinal cord, so they regarding-route the fluid by the shunt tube and bring it from the lower spine (in a lumbar shunt) to the periotoneal cavity and it empties in that area (yes, it just empties into the area where your lower intestines and lower part of the stomach are)...and then the cells and blood vessels absorb the CSF that the brain/spine could not absorb."

"I did notice that I sunburned really fast when on Diamox (even faster than normal) and just felt fatigued really fast. So be careful in the sun while on diamox."

"After I had been on Diamox for about 18 months I was able to taste Sprite and cream soda, but not colas. However, the tingling did get better after just a few months. Not being able to taste soda was a blessing in disguise because I lost about 10lbs when I stopped drinking it!"

"The Neurosurgeon I went to wanted to do an LP shunt. I had the shunt ( simple tube, no valves ) inserted in Feb 2000. Because of severe headaches, and no improvement in the Papilledema, it was 'revised' in May 2000. Since then - on the whole - it has been working. My eyes are better, and the headaches are down to a manageable level. Although they are still pretty much constant, they are low-grade, and they can be controlled with OTC painkillers."

"The Neurosurgeon that I go to now prefers to do VP shunts - he places then stereotactically ( using specialized x-ray equipment ) so the small ventricles is not an issue. He finds them to be more successful in the long-term, and also with the programmable valve, they are more manageable without further surgery."

"I chose not to go with the frequent spinals, because they offered me no relief. My ophthalmalogist stressed that spinals do not solve the problem and creates another with scar tissue, etc.. The shunt that you are describing is called a ventricular peritoneal shunt (vp) shunt. I had mine placed on Nov, 27,2000. I was in the hospital for 2 days. It was actually one of the easiest surgeries I have recovered from. My shunt is the Codman Hakim programmable. So far it has been revised three times. The first setting was too low (100) They raised it to 150 then lowered it to 140 and now it is set at 130. Other than the this little lump in your head you would not even be aware that the shunt is there. Life goes on as normal - in fact much better."

"I won't let anybody but my neurosurgeon do a blind tap on my shunt. You can have your shunt tapped under fluoroscopy. I had this done during my cisternogram. You get to see your shunt on a TV monitor and watch the whole procedure. This way, they can avoid the tubing. My doc's favorite line is "If you have a tap done under flouro, it should only be done once because everything is right before your eyes. If the radiologist can't tap you, than he/she is in the wrong profession."

"I have the programmable shunt- Codman hakim. I have had it revised three times since my surgery. It's the most amazing thing. It only takes about 30 seconds to revise. They take an Xray to see where it is set. Then they put this magnetic device right over the top of the shunt. It resets the the dial in the shunt. then they rexray to make sure the dial is set correctly. I have some of the x rays showing the shunt and the tubing in my head and neck. I have had no problem with the magnetic scan doors at stores and at airports - have been through both since the surgery."

"Regarding Acetazolamide, diamox sequels and depression-..if you review the side effects of diamox or diamox sequels it will tell you that depression is a symptom of diamox."

"There are also other alternatives to Diamox besides Lasix ( which can result in your feeling tired ) - like Neptazane."

"Yes, it is possible to have the visual loss without the papilledema present. I'm on of those rare cases. I have some damage to my optic nerves, but according to my neuro opth, it's very minimal. I also have that pain that you speak of, when my pressure is higher. It feels like someone is sticking hot needles in my eyeballs."

"Tips for lumbar punctures: These are just a few things that I picked up extra to what the docs told me.
- A particularly astute doctor (Far and few between) realized that I only ever got pain when when I wasn't at a right angle to the bed. Get your back at right angles to the bed. Be careful that if the bed dips when you are laid at the edge of it, you adjust your position to make sure that you are at right angles.
- Take a premed. I always take diazapam and tamazapam. This helps you to relax. which is important. When you tense up the muscles around your vertabrae contract. This makes it harder for the doc to get the needle in between the gap in your vertabrae.
- Get the doc to use the narrowest needle possible. It might take a little longer to drain any fluid if they need to, but I've had far few painful lp's with the narrow needle.
- Observe any post lp procedure that they tell you. The low pressure headaches are mad, bad and ugly. I have only ever had one1 and that was when a just-qualified doc drained too much fluid from me. If you feel any pain tell them to stop immediately. There is no need for pain. You should be able to have an lp without hardly being able to feel it. A good, patient doc should be able to achieve this."

"I am surprised that your doctor couldn't find heartburn on the Diamox side effects. My doctor showed me in the book that it said heartburn is a side effect"

"The ICP monitoring was something of an experience. It means Intracranial Pressure monitoring. It involved me having a local anaesthetic and a hole being drilled through my skull, then a screw was fixed into the hole with wires attached to a monitor. I had to keep the monitor on for 24 hours, and it constantly gave the pressure readings inside my skull. Mine were up and down all the time, when I slept it really shot up and when I coughed or blew my nose the pressure was very high. This enabled the doctors to see that a shunt would not be suitable for me due to the constant changes in my pressure readings. It sounds a lot worse than it is. I never felt a thing only a weird sensation from the drill, I did however have a really bad headache the day after."

 

Regarding work issues/disability

"Regarding the Soc. Security disability process: To qualify for benefits, they look at the combination of impairments. All of your medical problems and how they all together, both physical & mental, affect your work ability, your age, your past education, and most of all, your past work. If you did a sedentary job, such as a desk job that did not require much lifting, standing, etc. chances are they will say you can go back to that type of work.
"For the first time you file the claim, it is an initial claim. If you are denied, you have 60 days to file an appeal; If you do refile in this time period, your claim then becomes a reconsideration. A different medical disability specialist and a different doctor review the file. If you are denied again, you must file another appeal. At this level, you will usually see an administrative law judge / hearings officer. IF YOUR CLAIM IS DENIED AT THE INITIAL LEVEL OR RECON LEVEL & YOU DO NOT FILE AN APPEAL WITHIN THE TIME FRAME MENTIONED IN THE DECISION LETTERS, YOU WILL HAVE TO START THE WHOLE PROCESS ALL OVER AGAIN AS AN INITIAL CLAIM. IF YOU EVER ARE APPROVED, $$ WISE, YOU WILL NOT BE ABLE TO GO BACK TO THE DATE OF THE CLAIM THAT YOU NEGLECTED TO FILE THE APPEAL!!!!! IF DENIED, YOU ALWAYS FILE YOUR APPEAL AT THE LOCAL SOCIAL SECURITY OFFICE WHERE YOU LIVE. So, the actual collection of medical records and decision will be done by a State agency but you will begin your claim and end your process in the local Federal Social Security office."
"Regarding vision, the Listings Book states that your vision must be (Visual Acuity) 20/200 BEST CORRECTED (glasses, etc) in the good eye and the medical records must indicate WHY your vision is that bad (include the papilledema, damage to the optic nerve, pressure levels on the eye, physical findings). SS is BIG on laboratory findings and physical findings to support the medical evidence. So make sure your MD puts the info in the notes / your medical records. A lot of MDs will leave this info out b/c they know it and don't feel they have to include it in their notes. Ask your MD to see your records and see what they say. Explain the importance for the excessive documentation if you are applying for SSD / SSI. Sometimes, when someone has lots of problems, SS just orders an exam b/c it is easier than trying to get records from all 10 of their specialists."

"FMLA or Family Medical Leave Act is not just for pregnancy, but for any and all illnesses. It is also used for person(s) who do not have the time to take off for illness that are chronic, or surgery's that will require a series of month(s) for recovery. The time frame is 12 weeks. I have been under it before for my surgeries w/ shunts & revisions. I was out for about 6+ months and went under this.You are entitled to 12 weeks per year, and your year does not start in January, but when you begin the leave. I started my leave March 2000, so on March 22, 2001, I will be entitled to this leave again. You must sign a form and provide medical documentation that you are going on FMLA for this leave to officially take effect. If they do not give you that form to sign, even if you are out a while, you have not begun using these days. These days must be documented on your timesheet and an up-to-date balance must be kept. What it does is it lets you take leave, even as leave w/o pay and not use your sick leave or vacation time. My illness was considered "Chronic" by the MD that completed my FMLA form so I was given the type where my leave can be taken anytime at intervals and does not have to be used all at once. Your MD has to complete a FMLA form for this type of leave.'

"Have you ever had a confidential interview with Human Resources about requesting accommodations for Americans with Disabilities? They give you paperwork for your physician to fill out. He has to verify that you are indeed capable of doing your job with these small adjustments. The process is supposed to be confidential through HR, and it is a legal provision that is supposed to be protected."

 

Regarding this and that

"There is an article in 6/12/01 Family Circle regarding PAF,which is Patient Advocate Foundation. They help people when they are having problems with insurance companies or claim denials; and they have case managers who coordinate appeals.Their web site is www.patientadvocate.org"

" I have something to share. There is simple product that works fantastic on most of my headaches: Migraine Ice Pads. They can be purchased at Walgreens, KMart or Drugstore.com. Mentholatum makes them and if you go to their web site (Mentholatum.com) they have coupons for $2 off most of the time. There are also coupons in the packages. They are worth every penny ($6 - $8)." Tip - use the temple pads given free with the forehead pads under your eyes or sinus area when the swelling makes your nose feel stuffy."

"Life insurance companies here in Ireland are reluctant to give life insurance with a diagnosis of ptc even with a neurosurgeon's letter to say it is not a life threatening disorder. Are there similar problems in the US and if so how can we overcome them?"
"Ditto- I was turned down in 1985 for the same. The only way I can get life insurance is thru an employer when the physical is waived at the initiation of contracts."

"The head of my bed is slightly raised and that seems to help me sleep. I also use ice on my head at night."

"For all of you out there with chronic ear pain, I just learned something new. There is a small nerve at the base of the skull which can make you feel as if your ear hurts. I have been walking around for 6 years with problems with my right ear. Pain. Well, I just found out that it is not the ear, but instead it is this nerve at the base of your skull. Got a shot for it, and feel great-, no more ear problem!"

"I wanted to let everyone in Utah know that in Salt Lake City there is a PTC Support group. We meet 2 times a year and is held at the John A. Moran Eye Center. It's a great opportunity to learn and meet lots of new people."

"Over here in the Netherlands we are practically doing the same as you girls are doing over in the US. The illness isn't been taking serious by the doctors here yet, they still call it Benign. Some figures amongst our little group:
34.1% had no overweight at the time they got ill
9.8 % experienced a big grow of weight before/during the illness
The rest of the group had overweight (29.3%) and had overweight with an increase of weight (26.8%).
A couple of weeks ago we had the pleasure of meeting someone from Belgium who is suffering from ptc. She was strictly forbidden to drink coffee and cola (even the light products) because there are three components in it which stimulate the production of csf. Is that known to you?"

"I weigh myself morning and night almost every day. I want to know I'm staying within no more than a 2-pound weight gain. Dr. Friedman's article on orthostatic edema mentions anything over 2 pounds is fluid retention. Also lying with knees bent is ideal for wicking water away. I always stay propped at a 30 degree angle from the hips up. I read an article that said this 30 degree angle keeps CSF lowest. DEEP LYMPH DRAINAGE:I found a massage therapist trained in deep lymph drainage. For the first 6 weeks I went weekly and she taught both me and my husband how to keep my lymph drained. Now I go once a month for upkeep. I have an article "Is human cerebrospinal fluid reabsorbed by lymph? Lymph drainage therapy (LDT) and manual drainage of the central nervous system" by Bruno Chikly, MD (France) which was reprinted from AAO Journal, Vol. 8, No. 4, Winter 1998. It supports the notion that deep lymph helps drain CSF. This has been a key part of pain control for me. DIET I have lost 38 pounds since August. I take 400 mcg chromium picolinate every day after I exercise on my rebounder for 2-6 minutes. I do skip this on really sick days. I try to walk each noon for 20 minutes. I follow a no salt, diet with very low carbohydrates. I eat lots of skinny vegetables and protein. Minimal fruit. No juice or soda. I eat as many naturally diuretic foods as possible (parsley, grapes, asparagus, cantaloupe, broccoli, cabbage, lemon juice). I drink coffee, which is a diuretic and great pain medicine, but try to limit myself to 1/2 cup of coffee a day in am, and then if needed for fighting HA. It is a tyramine NO NO- I cheat! I drink at least 1-2 quarts of water a day in addition to herbal tea. Because diuretics cause potassium loss, I take 600 mg of potassium each day. I like to lie down for 10-15 minutes every 2-3 hours. This seems to help keep things draining. The three things to release endorphins to fight pain are exercise, relaxation, or warm milk. Exercise keeps me loosened, which is less painful. Fluorescent lights, in one particular store, has forced me to shop elsewhere. If I am in that store more than 10 minutes I become clammy and feel faint."

(A participant in Dr. Glueck's study) " I just got back from Cincinnati, Ohio. They are running a study there on PTC. They took a history, did a quick physical, and drew blood for testing. This doctor believes that some people have PTC caused by blood clotting that occurred from Pregnancy, Birth control pills or other things. It takes three weeks for the blood results to come back; they are testing for genes and stuff, then after a reevaluation a blood thinner is administered, and will fix the clot, allowing your fluid to drain You know it's interesting talking about clotting. Aspirin is a blood thinner. Unfortunately you can't take it with Diamox because the mix can be fatal, they interact. Before I knew that I took it once or twice for my headache and it helped more than anything. Usually doctors scoff when I say certain things or ask me again to verify what I said. He didn't; also he conceded that Diamox does not help most and that frequent spinal taps had too many drawbacks. The web site is www.health-alliance.com if you type in the search word Pseudotumor Cerebri, then all info will pop up."

"The drug company has approved my application to receive free Diamox Sequels-please let people know this help is available."

"Cucumbers are also a natural diuretic. I love to eat them sliced by themselves and I do notice the effect."

 

Regarding experiences with doctors

"The ER doctor first started telling me that I was just being a " baby" and I had to learn to deal with pain. Then he said that I had to prove to him from now on that I really and truly have headaches. SO, I had him read the report from the spinal tap. My opening pressure was 540....Needless to say he did some fast apologizing about how rotten he treated me. He said that they get a lot of " pretend headaches" and he wasn't sure about me for the last 2 years. I wanted to SLUG him right in the nose!! Then he admitted to me that he didn't know what PTC was but said that 540 was HIGH."

"My Primary care physician told me that I was depressed at first. Then it was depression and migraines. Then he told me to see a psychiatrist. The psychiatrist said that it sounded like more of a medical problem. SO I ended up back to where I started AGAIN. Then the PCP gave me every migraine medicine available. NO LUCK. Headaches getting worse and having them everyday. NO RELIEF! Then came the dizziness, the passing out, the ringing whooshing in the ears. The blurry and double vision and SEVERE NAUSEA. PCP claimed that it was just migraines. And that I just couldn't handle pain. Then he told me that I was addicted to pain medicine and refused to give me anything to help manage this horrible disease. I finally had to make another appointment and literally BEG him to do a lumbar puncture. I think he agreed to do the procedure just to shut me up and prove that there was nothing wrong with me. After all that , I win (?)".

"My son has had 6 lumbar taps in 7 months, if I stayed with the same doctor he would of had a total of 10 in 12 months, before other options would of been discussed. He still has high pressure, and it comes back within 10 days of a tap, he has a constant ache now in his lower back, please make sure your docs appreciate your need for a "quality of life",.."

"Of course I got one doc who tried to tell me that PTC could not be diagnosed without Papillidema. I just smiled and told her to tell that to all the people I know who have PTC with no eye involvement. She did finally admit that there are cases that differ from the "textbook" description."

"I am just glad I have this new neurosurgeon. He said "Treating PTC is nothing like what they teach you in medical school. Once you have treated many cases, you learn that you do not follow the book on this disorder. Shunts also don't work like they are said to." He also said that many of his patients have gotten to the point that he has to go in and take out the shunt b/c they no longer have the ptc symptoms like they did when they first came to him."

"...It was a real struggle for her to get a diagnosis, but was good to know that there was something really wrong, and it was not all "in her head." Pardon the expression. But they tried to tell her it was just stress and tried to blow it off, and then she finds out it is this ptc. Yes - the biggest problem in this condition is that it is an invisible one, and no-one can understand what you are going through."

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