Chapter Five - Resources
Organizations
Places to get PTC information:
· Natl. Network of Libraries of Medicine 1-800-338-7657
· Natl. Institute of Neuro. Disorders 1-800-352-9424.
National Organization for Rare Disorders, Inc. (NORD)
PO Box 8923, 100 Rt. 37
New Fairfield, CT 06812-1783
(203) 746-6518
www.rarediseases.org
email: orphan@rarediseases.org
"Dedicated to Helping People with Orphan Diseases-- more than 5000 of these illnesses afflicting approximately 20 million Americans-- is a clearinghouse for information, refers people to representative groups. Also monitors implementation of Orphan Drug Act which encourages pharmaceutical companies to research and develop new therapies for treatment of rare disorders. An orphan disease afflicts fewer than 200,000 people.
National Eye Institute, Information Office
Building 31, Room 6A32
Bethesda, MD 20892
(301) 496-5248
www.nei.nih.gov
National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS)
9000 Rockville Pike
Bethesda, MD 20892
(301) 496-5751
www.ninds.nih.gov
email: ninds@iqsolutions.com
Note: you can call this department for information on any clinical trials or PTC research being conducted in the US.
Your local chapter of the Lions Club
The Lions Clubs across America are long-time supporters of saving and improving vision. Your local group may be able to assist you in getting glasses, be able to perform vision checks, etc.
Social Security Administration
http://www.ssa.gov
1-800-772-1213
Obtain information about receiving disability and the American Disabilities Act.
National Chronic Pain Outreach Association
7979 Old Georgetown Road, Su. 100
Bethesda, MD 20814-2429
301-652-4948
Information clearinghouse regarding pain. Prints Lifeline, a quarterly newsletter. Offers referrals to chronic pain support groups, pain management specialists and pain clinics.
Resourceful Woman
Health Resource Center for Women with Disabilities
Rehabilitation Institute of Chicago
345 East Superior St. 1st Floor
Chicago, IL 60611
312-908-7997
Newsletter, resources, healthcare and advocacy for women with disabilities.
Common Journeys of Living with Pain and Chronic Illness
PO Box 17003
Minneapolis, MN 55417
A newsletter where people share their personal experiences. For a copy, send $5.00 and a self-addressed envelope. They are also looking for personal essays with a 1200 word limit.
Having problems with pulsatile tinnitus (constant ringing or noise in head)? Here are a couple of resources about this condition:
The Ear Foundation publishes a newsletter about ear conditions. Contact them at 2000 Church St. Box 11, Nashville, TN 37236 800-545-HEAR
The Vestibular Disorders Association offers a reprint of "Common Questions About Tinnitus". They can be reached at PO Box 4467, Portland, OR 97208 503-229-7705
Comfort Corner
products available that might make your day a little easier
· Ms. Wilkins of Eugene, Oregon was having a heck of a time trying to keep track of changes in her health condition. She wanted to keep track of the total picture- medicine taken, how well and long she slept, physical symptoms and problems, changes in the weather, exercise, food eaten, etc. She designed and created a soft-cover personal health journal named the Memory Minder. This 5 1/2" x 8 1/2" spiral-bound journal provides an easy-to-use checklist with space for brief notes. A line drawing of a human body can have areas highlighted or circled to mark pain and discomfort. The back of the journal features a section to record your medical history, questions for doctor appointments, test results, and a vinyl pocket to hold insurance cards, notes, etc. Used on a daily basis, each Memory Minder will last for about three months.
The benefit of using Memory Minder is a clear look at your complete health picture over a period of time. Does weather aggravate your condition? Do the foods you eat have any impact on how you feel? Are you getting adequate rest? Is your new medication really helping? A recorded journal can give you a perspective that benefits you and your physician.
Order a copy with either a red or navy blue cover (please specify) for $12.95 plus $1.90 for shipping and handling. Send your check or money order to Memory Minder, P.O. Box 23108, Eugene, OR 97402-0425
· Dr. Emmett Miller is president of SOURCE Cassette Learning System, Inc. Dr. Miller believes that "whatever the physical problem, the healing process begins with the mind with the thoughts, the images and the beliefs that are held there." Twenty years ago, Dr. Emmett Miller began producing experiential tapes for his patients to manage stress. Today he offers dozens of tapes, videos and books that aid better health and healing. Several good examples are:
- Change the Channel on Pain
- Healing Journey
- Headache Relief
- Images for Optimal Health
- A Time to Heal (videocassette)
Prices range from $8.95 to $24.95. To request a free catalog, call 1-800-52-TAPES.
Recommended Reading
"More Than Meets The Eye" is the title of a wonderfully inspirational book written by Joan Brock and Derek Gill. The story is of Joan's life and how at age 32 she was diagnosed at the University of Iowa Hospital as having macular degeneration which caused her to go blind quickly. Her physician was Dr. James Corbett, a neuro-ophthalmologist (who many of us know as one of this country's experts on PTC).
Just a few years after going blind, Joan lost her husband to a long battle of cancer. Her courage in the face of incredible adversity and tragedy is truly inspiring.
Note: Readers Digest Condensed books has this book in large print- check your local library!
The book "Coping With Lupus," by Robert H Phillips, PHD. The similarities of the effects of lupus and pseudotumor cerebri offer good reading for dealing with the emotional aspects of day-to-day life.
A new booklet, "Living Well with Chronic Illness," written by Gayle Hiess of Mendocino, CA is available for only $2.00 per copy. The author explores the many bewildering and painful issues in accepting and living with chronic illness.
Gayle has also published a full-length book for those living with chronic pain and illness titled, "Finding the Way Home: A Compassionate Approach to Illness." Gayle herself is a "wounded healer." Since 1984 she has been living with Sjogren's syndrome, a painful and debilitating illness (all PTC people can relate to that last phrase!).
The book is based on personal experiences in addition to hundreds of others who live with illness. Looking at illness from the inside out, Ms. Heiss reveals distinctions which are profoundly important to those who are ill.
You can purchase these publications by contacting the author directly: QED Press, 1-800-773-7782.
MISCELLANEOUS
· The Allsup, Inc. company of Belleville, IL offers an alternative to obtaining government disability benefits on your own. Their knowledge of the Social Security system results in a 90% success rate in benefits awarded to their clients, compared to the 56% success rate of people working alone. Their fees are also usually much less than using a lawyer to defend your claim.
For more information about Allsup's services, call 1-800-279-HELP.
·The Bureau of Services for the Visually Impaired in Ohio can help residents solve your problems of daily living with poor vision. For details, call 614-294-5571 or 614-466-7730.
For out-of-state readers- this bureau is a division of the Ohio Rehabilitation Services Commission.. Contact your local state to see if a similar organization exists.
· Many libraries offer large-print books and "Talking Books", a federally-funded program that provides cassette players and recordings to persons with vision impairments. In addition, the Ohio Outreach Services Division will deliver materials to homebound citizens. For more information, call 645-2530.
· CHOICE Magazine Listening is a free service for visually impaired persons that provides 8 hours of audiotapes 6x a year from popular magazines. A special 4-track cassette player is also free (on permanent loan) by the Library of Congress.
For more information, contact CHOICE Magazine Listening at 516-883-8280.
THE INTERNET-
Pseudotumor Cerebri WEB SITES
http://forums.delphi.com/m/main.asp?sigdir=PTC_FORUM&isp=if">Pseudotumor Cerebri Support Forum Message Board</A>
http://home.talkcity.com/ROFLWay/frndlyfun/index.html
"...found a site that talked about the different shunt types, complete with illustrations for the mechanically impaired like me. The site directions are: www.bethisraelny.org then neuro disorders then children, neurodisorders, hydrocephalus, shunts in treatment...ta da there is the article and index of illustrations."
http://hometown.aol.com/spanishiis/health.html
http://www0.delphi.com/ptc_forum/
http://www.neuroland.com/ha/pseudo_cer.htm
"home page to a group called Needy Meds Service. If your drug isn't on the list, see if your doctor can prescribe a similar one from the low cost list. It's easier to come up with $5 or $10 for a drug on the list that works just as well than it is to come up with $120 for a non-listed one. Here is the address: http://www.needymeds.com/
"There are two PTC support groups at ONElist.com.: ptc@onelist.com, and ptc-support-group@onelist.com. The second is the "big" ptc support group at ONElist. It is very similar in name. The first support group is more intimate. The second one has over 200 members, a member's website, a chatroom, a Delphi Forum, and many other additional features.
"Here is a neat link about avoiding LP headaches. Thought it was worth passing along.
http://www.geocities.com/HotSprings/Villa/5422/index.html
"A web page devoted to pain management: http://www.pain.com/defaultcon.cfm?direct=home
"A web site for a new type of VP shunt valve. It is completely unlike any valve now on the market. http://www.shunt.com/biomedical/Diamond/index.htm
"Check this site to see if any of the drugs you are currently using may be making your Tinnitus (the uncomfortable and nerve wracking whooshing, ring, pounding sound in your ears) worse.
http://www.tinnitusrelief.com/faq4.html
PTC LINK http://www.geocities.com/Wellesley/Garden/1297/
Published Articles
TITLE: Stereotactic ventriculoperitoneal shunt for idiopathic intracranial hypertension
AUTHOR: Tulipan N; Lavin PJ; Copeland M
AUTHOR AFFILIATION: Department of Neurosurgery, Vanderbilt University Medical Center, Nashville, Tennessee 37232, USA.
SOURCE: Neurosurgery 1998 Jul;43(1):175-6; discussion 176-7
OBJECTIVE: Lumboperitoneal shunting is the bastion of neurosurgical management for idiopathic intracranial hypertension (IIH). However, recent studies document a high failure rate for this procedure. The present study was designed to explore the feasibility of placing ventriculoperitoneal shunts under stereotactic control into patients with IIH as an alternative to lumboperitoneal shunting.
METHODS: Seven patients with IIH for whom medical management had failed underwent stereotactic implantation of ventriculoperitoneal shunts.
RESULTS: Shunt placement was successful and uncomplicated in each case. Five of seven patients experienced complete resolution of papilledema. The remaining two patients showed resolving papilledema. Six of seven patients experienced resolution of headache. The remaining patient continued to have headaches despite a radionuclide study demonstrating normal shunt function.
CONCLUSION: Our results suggest that stereotactic ventriculoperitoneal shunting may be a reasonable alternative to lumboperitoneal shunting in those patients with IIH who require surgical intervention.
Title: Clinical experience with a new pressure-adjustable shunt valve.
Author: Reinprecht A; Czech T; Dietrich
Source Acta Neurochir (Wien), 134(3-4):119-24 1995
The pressure-adjustable valve system Codman Hakim (NOW AVAILABLE) allows valve pressure adjustment in 18 steps between 30 and 200 mm H2O. A series of 90 patients, 15 children and 75 adults, who were shunted with this new programmable valve, is reported. Indication for shunt insertion were various types of hydrocephalus in 79 cases, malfunction of a medium pressure membrane valve shunt system in 9 cases and an arachnoid cyst and pseudotumor each in one case. The valve pressure was programmed prior to insertion to 200 mm H2O in the adults and according to age in children and was modified postoperatively according to the clinical course. Underdrainage with subdural fluid collections appearing in 5 patients could be managed by valve pressure adjustment alone in 2 cases. One malfunctioning of the valve mechanism was due to mechanical obstruction. At the time of follow-up, 7 to 29 months after operation, outcome was excellent in 64 patients, good with marked improvement but residual symptoms in 19 patients and unchanged in 7 patients. The possibility of adjusting the valve pressure to the patient's demands was frequently used in children and adult normal pressure hydrocephalus patients with satisfying clinical results.
TITLE: Gastric surgery for pseudotumor cerebri associated with severe obesity.
JOURNAL: Ann Surg 1999 May;229(5): 634-40; discussion 640-2
AUTHORS: SUGERMAN , Sismanis A, Kellum JM, DeMaria EJ, Sugerman EL
AUTHOR PLACE: Department of Surgery, Medical College of Virginia of Virginia Commonwealth University, Richmond 23298-0519, USA.
OBJECTIVE: To study the efficacy of gastric surgery-induced weight loss for the treatment of pseudotumor cerebri (PTC).
SUMMARY BACKGROUND DATA:
Pseudotumor cerebri (also called idiopathic intracranial hypertension), a known complication of severe obesity, is associated with severe headaches, pulsatile tinnitus, elevated cerebrospinal fluid (CSF) pressures, and normal brain imaging. The authors have found in previous clinical and animal studies that PTC in obese persons is probably secondary to a chronic increase in intraabdominal pressure leading to increased intrathoracic pressure. CSF-peritoneal shunts have a high failure rate, probably because they involve shunting from a high-pressure system to another high-pressure zone. In an earlier study of gastric bypass surgery in eight patients, CSF pressure decreased from 353+/-35 to 168+/-12 mm H2O at 34+/-8 months after surgery, with resolution of headaches in all.
METHODS: Twenty-four severely obese women underwent bariatric surgery--23 gastric bypasses and one laparoscopic adjustable gastric banding--62+/-52 months ago for the control of severe obesity associated with PTC. CSF pressures were 324+/-83 mm H2O. Additional PTC central nervous system and cranial nerve problems included peripheral visual field loss, trigeminal neuralgia, recurrent Bell's palsy, and pulsatile tinnitus. Spontaneous CSF rhinorrhea occurred in one patient, and hemiplegia with homonymous hemianopsia developed as a complication of ventriculoperitoneal shunt placement in another. There were two occluded lumboperitoneal shunts and another functional but ineffective lumboperitoneal shunt. Additional obesity comorbidity in these patients included degenerative joint disease, gastroesophageal reflux disease, hypertension, urinary stress incontinence, sleep apnea, obesity hypoventilation, and type II diabetes mellitus.
RESULTS: At 1 year after bariatric surgery, 19 patients lost an average of 45+/-12 kg, which was 71+/-18% of their excess weight. Their body mass index and percentage of ideal body weight had fallen to 30+/-5 kg/m2 and 133+/-22%, respectively. In four patients, less than 1 year had elapsed since surgery. Five patients were lost to follow-up. Surgically induced weight loss was associated with resolution of headache and pulsatile tinnitus in all but one patient within 4 months of the procedure. The cranial nerve dysfunctions resolved in all patients. The patient with CSF rhinorrhea had resolution within 4 weeks of gastric bypass. Of the 19 patients not lost to follow-up, 2 regained weight, with recurrence of headache and pulsatile tinnitus. Additional resolved associated comorbidities were 6/14 degenerative joint disease, 9/10 gastroesophageal reflux disorder, 2/6 hypertension, and all with sleep apnea, hypoventilation, type II diabetes mellitus, and urinary incontinence.
CONCLUSIONS: Bariatric surgery is the long-term procedure of choice for severely obese patients with PTC and is shown to have a much higher rate of success than CSF-peritoneal shunting reported in the literature, as well as providing resolution of additional obesity comorbidity. Increased intraabdominal pressure associated with central obesity is the probable etiology of PTC, a condition that should no longer be considered idiopathic.
Original article: Serious adverse events in Norplant users reported to the Food and Drug Administration's MedWatch Spontaneous Reporting System.
AUTHOR: Wysowski DK; Green L
OBJECTIVE: To describe serious adverse events in Norplant users from reports submitted to the Food and Drug Administration's (FDA) MedWatch Spontaneous Reporting System.
METHODS: Reports of certain serious adverse events in Norplant users in the United States from February 1991 to December 1993 were reviewed and analyzed.
RESULTS: From the introduction of Norplant in the United States in February 1991 to December 1993, the FDA received reports of 24 women hospitalized for infections at the insertion site, 14 hospitalized or disabled because of difficulties removing the capsules, 14 hospitalized for stroke, three for thrombotic thrombocytopenia purpura, six for thrombocytopenia, and 39 for pseudotumor cerebri. The comparison of reported rates with expected rates and the relationship of some of these disorders with oral contraceptives raises the suspicion of a causal association with Norplant.
CONCLUSIONS: The FDA has received reports of hospitalization or disability for infections, capsule removal difficulties, stroke, thrombotic thrombocytopenia purpura, thrombocytopenia, and pseudotumor cerebri in Norplant users. Health care professionals need to be trained in Norplant insertion and removal to ensure the proper technique. Studies are needed to determine if stroke, thrombocytopenia, and pseudotumor cerebri are causally related to Norplant use.
Obstet Gynecol 1995 Apr;85(4):538-42
MDX Health Digest, Copyright by Medical Data Exchange (MDX)
Other Information of Interest
FYI.....Information from Physician Desk Reference (aka PDR) and government CSA:
When it comes to PRESCRIBING CLASS II and III DRUGS (which many pain drugs fall under either category) your doctor is not free to give you as many as he or you want. All Class II and III drugs are restricted because of their potential for abuse. The doctors who write them and the pharmacies who fill them are monitored monthly and have to answer to the DEA if flagged. This means he is limited in how many he prescribes at once, if renewals are permitted (Class 2 says no and a new script must be written each time and only in a genuine emergency) and how many renewals are allowed within 6 months. If your doc doesn't comply with these rules (Controlled Substance Act 1970) he can loose his license to prescribe and in some cases to practice.
Understanding the lab values for the test run on your Cerebral Spinal Fluid during your "taps".
NORMAL VALUES: PRESSURE: 50 to 180 mm H20
APPEARANCE: clear, colorless
CSF TOTAL PROTEIN: 15 to 45 mg/100 ml
GAMMA GLOBULIN: 3 to 12% of the total protein
CSF GLUCOSE: 50 to 80 mg/100 ml (or approximately 2/3 of serum glucose level)
CSF CELL COUNT: 0 to 5 WBC's, no RBC's
CHLORIDE: 110 to 125 mEq per liter
Note: mg/ml = milligrams per milliliter; mEq/L = milliequivalent per liter
ABNORMAL RESULTS:
1. INCREASED PRESSURE: trauma or infection etc.
2. DECREASED PRESSURE: obstruction to the flow of CSF above the puncture site (spinal cord tumor), shock, fainting, diabetic coma
3. APPEARANCE:
A.. CLOUDY: infection, white blood cells in the CSF, protein in the CSF, microorganisms
B. BLOODY or REDDISH COLORED: bleeding within the brain or subarachnoid space, spinal cord obstruction, traumatic lumbar puncture (first specimen bloody, rest clear)
C. BROWN, ORANGE, YELLOW COLOR: elevated protein in the CSF, old (greater than 3 days) blood in the CSF
4. INCREASED PROTEIN: blood in the CSF, diabetes mellitus, polyneuritis, tumors, trauma
5. DECREASED PROTEIN: rapid CSF production
6. INCREASE GAMMA GOBULIN: demyelinating disease (e.g. multiple sclerosis), neurosyphilis, Guillain-Barre syndrome
7. INCREASED GLUCOSE: systemic hyperglycemia (elevated blood sugar)
8. DECREASED GLUCOSE: a systemic hypoglycemia (low blood sugar), bacterial or fungal infection (such as meningitis), mumps, old subarachnoid hemorrhage
9. INCREASED WBC: active meningitis, acute infection, beginning of a chronic illness, tumor, abscess, brain infarction (stroke), demyelinating disease (such as MS)
10. RBC: bleeding into the spinal fluid, traumatic lumbar puncture
The top limits to normal CSF pressure is around 200 and would be considered High Normal. Most adults run between 120-180. Weight, dieting, fatigue, illnesses, stress, etc will affect the readings so it varies among normal people.
WHAT DOES ACETAZOLAMIDE (DIAMOX) DO?
ACETAZOLAMIDE (Diamox®) helps to treat glaucoma, certain types of epilepsy or seizure disorders. It can also help mountain climbers who get altitude or mountain sickness. Generic acetazolamide tablets are available.
WHAT SHOULD MY DOCTOR KNOW BEFORE I TAKE DIAMOX?
They need to know if you have any of these conditions:
· Addison's disease (underactive adrenal gland)
· blood disorders or disease
· kidney disease
· liver disease
· low levels of sodium or potassium in the blood · lung disease
· an unusual or allergic reaction to acetazolamide, sulfonamides, thiazide diuretics (water pills) other medicines, foods, dyes, or preservatives
· pregnant or trying to get pregnant
· breast-feeding
Tell your prescriber or health care professional about all other medicines you are taking, including non-prescription medicines, nutritional supplements, or herbal products. Also tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke, or if you use illegal drugs. These may affect the way your medicine works. Check with your health care professional before stopping or starting any of your medicines.
SIDE EFFECTS TO REPORT TO DOCTOR AS SOON AS POSSIBLE:
· blood in urine, pain or difficulty passing urine
· black tarry stools
· confusion or mental depression
· dark yellow or brown urine, pale stools, yellowing of the eyes or skin
· difficulty breathing, shortness of breath
· dry mouth or increased thirst
· fever, sore throat
· lower back pain
· muscle weakness
· ringing in the ears
· seizures (convulsions)
· skin rash, itching
· unusual bleeding or bruising
· unusual tiredness
SIDE EFFECTS THAT USUALLY DO NOT REQUIRE MEDICAL ATTENTION
· changes in taste or smell (metallic taste in mouth, loss of taste and smell)
· diarrhea
· drowsiness
· headache
· increased sensitivity of eyes to light
· loss of appetite
· nausea, vomiting
· numbness, tingling, or burning in the hands, fingers, feet, toes,
mouth, lips, tongue, or anus
· passing urine more often
· weight loss
Other Support Groups
Pseudotumor Cerebri Support Group
John A. Moran Eye Center, University of Utah
50 N. Medical Drive
Salt Lake City 84132
tel: (801) 585-2213
The Pseudotumor Cerebri Society
1319 Butternut St. Apt. 3
Syracuse, NY 13208
tel: (315) 423-8278