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Pseudotumor Cerebri Support Network Newsletter 1
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Greetings!
Time flies..... particularly when trying to find the time to put out another newsletter! It's been over a year since our last issue, but we've made some significant advances in sharing information about pseudotumor cerebri.
In February, we launched the first book available about PTC called The PTC Primer... Living with Pseudotumor Cerebri. It's a culmination of all PTC information offered in previous newsletters, with additional PTC data culled from the Internet and related publications. We cover everything from PTC symptoms and treatments to interviews with physicians and on to how to deal with pain and more. PTC people share their stories, challenges and ways they cope. It's a great reference guide for anyone connected to pseudotumor cerebri (patients, doctors, family members, and friends).
(NOW AVAILABLE ON OUR WEB SITE- FREE! SEE WEB PAGE- THE PTC PRIMER)
Our next accomplishment came mid-October. The PTC Support Network now has a web site available for everyone needing information about pseudotumor cerebri: www.pseudotumorcerebri.com
Now, a note about what follows.... we've accumulated a bunch of new PTC-related information via the marvelous Internet- article summaries, tips, web sites, etc. etc. Read it, use it... I hope it helps.
Take care.... and use the forum to write to me. Let me know your tips for coping, what makes you feel better, what medications and treatments have worked.... that way we can share with everyone else.
Thank you...
Sondra Johnson
To those individuals and groups
who have sent in donations, we thank you. It is because of you
that this newsletter exists. Our organization is entirely non-profit.
All research, writing, phone calls and newsletter time are donated;
the money you thoughtfully give goes directly for printing, postage
and Internet costs. Your gift offers needed information to people
who live with this disease.
A special note of thanks to the Lions Club in Tionesta, Pennsylvania. Their several generous donations have kept our group active.
(Thanks to them you are receiving this newsletter!)
Their goal is to save sight; let them know they are saving yours.
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Lions Club
P.O. Box 159
Tionesta, PA 16353
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.
© 1996-2004 PTC Support Network
Tips for a Successful Spinal Tap
At least one lumbar puncture (or spinal
tap) is a reality for everyone who has PTC. In fact, many PTC
patients will receive repeated lumbar punctures over the years.
You are not alone. About 400,000 lumbar punctures are performed
per year in the United States.
Headache is the most common complication
of lumbar puncture, usually lasting 1 week or less, and can occur
in up to 40% of patients when the neurologist or the anesthesiologist
uses the traditional lumbar puncture needle with a bevel tip (also
called a Quincke needle). It's important for PTC patients to know
that the risk of headache can be dramatically reduced to about
5% with the use of atraumatic, or pencil tip needles (these are
called the Sprotte or Whitacre needles).
Many neurologists in the United States
are not familiar with the Sprotte or Whitacre needles; only 2%
use them. By contrast, anesthesiologists commonly use the atraumatic
needles. Be sure to request that your lumbar puncture is performed
with an atraumatic needle.
Postdural puncture headache (PDPH) can
begin immediately after the procedure or be delayed for as long
as 14 days. The duration of the headache is less than 5 days in
about 80%, although the headache can persist for 12 months. The
longer the patient is upright, the longer the time before the
headache subsides when laying down. Other possible symptoms are
neck stiffness, nausea, vomiting, hearing symptoms, and vision
symptoms.
The cause of PDPH is not entirely certain.
The best explanation is that the cerebrospinal fluid pressure
falls as the CSF leaks through a tear produced by the lumbar puncture,
and the leakage exceeds the rate of CSF production.
Suggested treatments of postdural puncture
headache include taking caffeine and drinking sports drinks (some
people say the extra electrolytes in drinks such as Gatorade,
etc. help with the headache). It is also recommended to lay flat
as much as possible until the headache subsides. If necessary,
a medical procedure called an epidural blood patch is the most
effective treatment, with a success rate of 85% after 1 treatment
and 98% after a second.
Sharing about Pseudotumor Cerebri
FYI...(For Your Information)
"Your group gave me Dr. Alfredo
Sadun as a reference for my daughter to see when she came home
from school in April. Located at the Doheny Eye Institute in Los
Angeles, he is knowledgeable about PTC and a very good doctor.
One thing Dr. Sadun told me is that they have found this disorder
to be genetic and that there will be future literature published
about this."
"To help with the pulsatile tinnitus
(whoosh sound), my doctor recommended I get one of those wedge
cushions that will elevate the mattress by a few inches. He said
that would help the pressure from accumulating while I slept."
"Try raising the head end of the
bed about 6 inches above the foot end. This has helped my wife,
who has had ptc for about 10 years."
"It has been my experience that
antibiotics cause my headaches to worsen. Does this happen for
anyone else?"
"I am doing much better than I was
a year ago. I've lost 35-40 lbs., and the percentage of weight
I lost is enough to allow me to go without the Diamox. I've not
been on Diamox for 3 months now. I still get some headaches and
a few dizzy spells (always around my period -- I still swear this
is all hormonal!) , but it's nothing like it used to be."
"I have had migraines most of my
adult life. The migraine pain radiates over the whole of my head,
while the PTC only effects my left side. The pain is always round
my left eye and my neck always stiff on the left, the double vision
and other eye disturbances are all on the left."
"A blood patch is exactly
what it sounds like. Sometimes when they do a lumbar puncture,
a leak forms and causes a low pressure headache. In order to correct
this, they take a tiny bit of blood and "patch" the
hole with a tiny clot. It works extremely well. The headache will
go away. You do have to lie flat for a day to make sure you don't
dislodge the patch. I had one done during a hospitalization when
they took off too much fluid with an lp. They use local anesthesia."
Interested in information about how to
prevent Spinal Headache (Post Dural Puncture Headache)? Contact:
E-mail address: bela_hatfalvi@geocities.com
OR Mail address: Dr. Bela Hatfalvi, 15 Middlesex Dr., St. Louis,
MO, 63144, USA.
"Tyramine is a naturally-occurring
chemical that is found in aged food. It can influence certain
enzymes and chemicals in the brain. A modification of this diet
is often used with migraine sufferers, and may be of help with
those who have PTC. Foods to avoid include aged cheese, cured
or processed meats, broad beans, alcoholic beverages, dried fruit,
wine vinegar, peanuts, yogurt, monosodium glutamate (msg), caffeine,
and Nutrasweet. Artificial colorings and flavorings can also be
a problem. Foods free of tyramine include fresh meat, fresh fish,
fresh vegetables, and starches (pasta, potatoes, rice)."
"I have a Codman-Hakim programmable shunt. It is adjusted
by magnets and X- rays. Unfortunately, the magnetic shoplifting
detector at a local department store shut my shunt off when I
passed through it . (I won't make that mistake again!) Now I wear
a Medical Alert bracelet that says that I am 'magnetically sensitive'."
"Here's a tip on how to tell the
difference between a low and high pressure headache. A high pressure
headache is usually all over and doesn't change too much with
position. A low pressure however, is not there as long as you
remain lying down. As soon as you raise up 45 degrees or more
you get a stabbing, piercing knife-like pain in your eyes. It's
almost impossible even to get up and run to the bathroom."
"Women: if you have vaginal irritation
and are taking Diamox, read on. Diamox can cause vaginal dryness,
which can lead to irritation and pain. My doctor recommended Replens,
a vaginal moisturizer, and it makes an enormous difference."
"It is possible to leak CSF from
your ears. Also, from your nose, and eyes. I have had all three.
I find it to be very noticeable when this happens, it is a very
thin (thinner than water) sticky, clearish-yellowish continuous
flow."
"My neuro-ophthalmologist is going
to try me on Digoxin yup, that's right, the heart medicine.
He says it's not a standard treatment for this disorder, but he
has had limited success in treating PTC in about 10 patients with
Digoxin over the past 10 years. It seems that a side effect of
digoxin is a reduction in the production of CSF."
"The Diamox (with side effect exposure
to sun) means that you are able to burn much more easily, so just
apply sun screen."
"...one of the first things my doctor
did was discontinue my birth control pills and completely ruled
out the Norplant implant or Depo Provera shots."
"My ears rang when I was on Diamox
but have stopped since I was put on Dyazide."
"I found the best product (over
the counter) on the market for constipation (which often occurs
when taking pain medications). The stuff is called Magnesium Citrate
Oral Solution. It is by Crystal in a green bottle. It works within
1/2 hour to 10 hours, but you MUST BE BY THE BATHROOM. No pain,
no cramps."
"I have just recently complained
about the Diamox and was put on Dyazide. I can drink soda and
everything tastes great. I have had no ill feeling and am able
to continue a semi-normal life."
"Diamox made me feel WAAAAAY worse
...I am taking Neptazane and so far it is my miracle drug."
"I have been on Diamox for a long time now & am happy
to say that my body has finally adjusted, so I no longer suffer
any of the side effects. However...I did have big problems with
nausea, tingling, dizziness, fatigue, & loss of some vital
nutrients in my system (which caused bone pain during the first
several months of treatment).
"The nausea was by far the worst side effect I had taking
Diamox. I found that I suffered less nausea by eating large amounts
of potassium containing foods each day.
"I also kept a supply of prescription anti-nausea medication
(Phenergan) on hand, which I took as needed. Ask your doc for
a prescription. Finally, your doctor can also prescribe a potassium
supplement to take daily which will help curb the nausea."
"I just wanted to comment on the
Optic Nerve Sheath Decompression. I had it in November. My doctor
said 50%-75% of the people that have it don't notice a difference
in the headaches etc. BUT 25%-49% of the people that have it do
notice a difference. I noticed a big difference the day after
surgery. No whooshing & no headache."
"I have taken narcotics daily for
at least 4 years (since diagnosed w/ PTC). My primary MD (she
monitors and controls my pain meds) felt that since PTC is a chronic
condition, 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 currently take a time-released form of morphine....MS
Contin. I had tried many other pain medications before this: Lorcet,
Demerol, Toradol, Fiorinal, Stadol, Codeine/Tylenol #4, Percocet/
Percodan, Tylox, Vicodin, etc.
"For me, Morphine in the long lasting form controls my pain
best and allows me to concentrate at both work and at home."
(Re: pros and cons of LP and VP shunts)
"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 there was less 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."
PTC and Disability:
INFORMATION ABOUT Social Security
DISABILITY
If you have a more difficult case of
PTC that is unresolved after treatment and you are unable to work,
you may qualify for Social Security Disability.
To begin the application process, call
the SSI National Service Center at 1-800-772-1213. At your request,
you will be sent information on how to apply. Be forewarned that
there is an extreme amount of paperwork involved in applying for
SSI. Some people have found that it is well worth hiring an attorney
from the beginning of the process. Others slug through the paperwork
themselves.
To hire an SSI Disability- knowledgeable
attorney, call you local Bar Association and ask for referrals.
Most attorneys charge 25% of your initial award.
In order to receive SSI Disability payments,
you must be able to prove that you are "unable to perform
any substantial gainful work." Benefits do not begin before
the sixth full month of disability. After you quality and receive
disability benefits for 24 months, you will be automatically eligible
for Medicare.
Here is some additional information
about the appeals process (if you are initially denied) provided
by someone who works for Social Security...
It is important to know you need to appeal if you are turned down
the first few times. If turned down, do NOT miss the 60 day deadline
to appeal. If you do, you have to start over. All cases are looked
at independently and vary. The procedure may not be easy, but
do NOT stop appealing. Most appeal cases have a higher chance
of being allowed before a judge. Keep trying.
Tips to help the appeal process:
1. Get a lawyer at this point if you don't have one, especially
if you're going before a judge. The SS people will give you a
list. This is helpful. You don't pay anything up front. The lawyer
only gets paid if you get benefits. They get 25% of pack benefits
owed.
2. Go personally to the hospital's records departments. Ask for
the information you need and take it to your lawyer.
3. Obtain copies of the forms your doctors signed saying you were
disabled from your insurance company. Right to privacy laws guarantee
you the right to copies of anything documented about you. This
is proof that your doctors have said you are disabled.
4. Obtain a least one set of copies of all of your medical records
from all of your doctors - not just typed transcript, but hand-written
anecdotes, etc. - everything. Again, it's your right. They may
charge you for the copies, but it's worth it in the long run.
Take one set to your lawyer and keep one set for your self.
5. Keep a journal of your daily activities. List how PTC specifically
affects your life. It's actually harder to prove physical disability
than mental disability, so if you're seeing a psychiatrist and
have any mental illness in conjunction or because of your physical
problems, get it documented.
6. They may ask you to see one of their psychiatrists. Do so.
7. The judge has a month from the time of your visit with him
to respond to your appeal.
8. Be very honest in your appearance and demeanor when you see
the judge. No "game face". Go before the judge looking
like you do when feeling your worst; don't cover up how you feel.
Disability and Education
Individuals with Disabilities Education
Act (IDEA) (1994) applies to
federally-funded public schools (but unfortunately not to private
universities). However, the Americans with Disabilities Act
(ADA) (1975) DOES APPLY TO COLLEGE STUDENTS! Cite it, claim it,
use it - you are why it was established. Someone in Admissions
is appointed as the ADA officer (or otherwise are in violation
of a federal mandate). Find out who this person is and become
either their best friend - whatever it takes to get you what you
are entitled to by federal law.
Each federally-funded university should
have an Office of Student Disability. The only"proof"
they should require is a note from your doctor, detailing what
your limits and needs are. To meet your limitations, they can
provide notetakers, extra time for exams, a private room for testing,
deadline extensions, special technology machines that one can
talk to and type papers, a machine that will enlarge the print
on a textbook, or textbooks on tape. This office is always on
the students' side. Go through this official office, and not to
individual professors. The professors must comply with the office
of student disability.
New Shunt Option for PTC Patients
Now Available
In late 1999, the FDA approved the use
in the United States of a shunt that whose cerebrospinal fluid
flow can be adjusted without additional surgery. The Codman
Hakim programmable valve (formerly known as the Codman Medos
programmable valve) has been used at the Department of Neurosurgery
at Lund University Hospital in Sweden since 1992. The valve is
part of a shunt system that adjusts the opening pressure setting
in 10 mm differences with magnetic impulses. This adjustment can
be performed in a doctor's office without pain or trauma. This
ability to easily adjust the valve opening can prevent a common
problem of shunts- the over- or under-drainage of cerebrospinal
fluid.
The Codman Hakim programmable valve was
developed by Drs. Carlos Hakim and Saloman Hakim. The pressure
of the valve can be adjusted noninvasively by using a programmer
that transmits codified magnetic impulses which activate the stepper
within the inlet valve housing. Eighteen different pressure settings
that range from 30 mm H2O to 200 mm H2O can be selected. Inclusion
of the Codman Hakim programmable valve in the shunt system avoids
the need for a second operation in which a different pressure
shunt unit is implanted.
In a recent study, thirty of 32 reviewed
patients using the Codman Hakim valve improved after surgery.
Complications occurred in eight patients. The low-pressure symptoms
such as headache and vomiting observed in four patients disappeared
after increasing the valve pressure.
As with any surgical procedure, there
are always pros and cons. One possible complication is becoming
"magnetically sensitive," where airport or store security
systems using magnetic impulses (and magnets in general) can change
the valve opening pressure.
If considering shunt surgery, discuss
all options carefully with your physician.
Articles of Interest
JOURNAL: Neurology 1996 May;46(5):1226-30
ARTICLE: Coexistence of migraine and idiopathic intracranial
hypertension without papilledema.
SUMMARY: Eighty-five patients with refractory transformed migraine
type of chronic daily headache (CDH) had spinal tap as a part
of diagnostic work-up. Twelve had increased intracranial pressure
without papilledema, transient visual obscurations, or visual
field defects. The headache profile of these 12 patients was not
different from that of transformed migraine type of CDH. Addition
of agents such as acetazolamide and furosemide, after the diagnosis
of increased intracranial pressure, resulted in better control
of symptoms. These observations suggest a link between migraine
and idiopathic intracranial hypertension that needs further research.
In refractory CDH with migrainous features, a spinal tap to exclude
coexistent idiopathic intracranial hypertension without papilledema
may be indicated.
JOURNAL: Am J Ophthalmol 1999 Feb;127(2):178-82
ARTICLE: Idiopathic intracranial hypertension in prepubertal
pediatric patients: characteristics, treatment, and outcome.
METHODS: We reviewed the charts of all patients 11 years and younger
diagnosed with idiopathic intracranial hypertension at two university-affiliated
medical centers.
CONCLUSIONS: Idiopathic intracranial hypertension in prepubertal
children is rare and is different than the disease in adults.
In our series, there appeared to be no sex predilection, and obesity
was uncommon. Children are likely to present with strabismus and
stiff neck rather than headache or pulsatile tinnitus. Both papilledema
and sixth nerve palsy resolved rapidly with treatment. However,
children can sustain loss of visual field and visual acuity despite
treatment.
Awaken Your Spiritual Side
by Jennifer Duncan
Just two years ago, I was scheduled to
undergo brain decompression surgery. After prepping for surgery,
my mom, my pastor, and my therapist all joined me, and we prayed
together right up to the moment I was taken to the operating room.
I was calm, peaceful, and did not feel alone or afraid.
For the last 150 years or so, science
has maintained a complete separation of medicine and religion.
This is thankfully changing. A decade ago, cardiologist Randolph
Byrd, M.D. conducted a groundbreaking study of his heart patients.
The results showed that patients who were prayed for had fewer
life-threatening complications and needed less pain medication
that those who were not being prayed for. Today more than half
of America's medical schools teach courses in religion and spirituality
because of the positive impact on patients' health. Dr. Kenneth
Pargament, a psychologist and researcher at Bowling Green University
in Ohio, has conducted over 30 studies on religion and medicine.
He states "Repeatedly we've found that people who look to
God for support and comfort in times of stress do much better
mentally and physically. So do those who see illness as an opportunity
for spiritual growth."
I believe that is a very important point.
Ten years ago, when I was diagnosed with PTC, I prayed for a cure.
I prayed for my 'old' life back. I struggled to accept that I
had the chronic type of PTC, and my life would be forever 'different.'
Now, in addition to praying for more research and a cure, I pray
for strength for living with my disease. I have gained much from
the experiences of living with PTC, and believe I'm a better person
for it.
My wish for all of us who are living
daily with the effects of PTC is that we find peace even in times
of pain. May we find calm even in the chaos of medical appointments,
procedures, testing, and surgeries. May each of us find a purpose
in our unique experiences of living with PTC.
· The Silent Unity Prayer Ministry
is the oldest prayer fellowship in the country. They service all
faiths and offer prayer service free. Call 1-800-669-7729 (English
and Spanish available) 24 hours a day.
· Rest Ministries is a non-denominational, non-profit Christian
organization for people who live with chronic pain. Their number
is 1-888-751-7378.
· The National Center for Jewish Healing offers support
group and prayer services. Call 212-399-2320.
Moving????
Remember to send us your change of address
so we can keep our database updated.
