Question:
Has anyone else had a pre-surgical diagnosis of Pseudotumor Cerebri?
Did the condition resolve itself postoperatively? If so, how long did it take? I haven't found many people with the same disease and I am hoping that as one of my comorbidities (as rare as it is!), it will be resolved once I have the surgery and lose weight. Thank you. — KathieInHawaii (posted on March 27, 2002)
March 27, 2002
Kathleen, I was reading up about this recently because I have terrible
migraines and I was wondering if PTC could be a possible cause. I found a
study on PubMed that actually concluded that WLS is the treatment of choice
for PTC, and most people will have a complete resolution of symptoms within
a few months after surgery. Here's the citation and the results/conclusion
from the abstract:
Ann Surg 1999 May;229(5):634-40; discussion 640-2.
Gastric surgery for pseudotumor cerebri associated with severe obesity.
Sugerman HJ, Felton WL 3rd, Sismanis A, Kellum JM, DeMaria EJ, Sugerman EL.
Department of Surgery, Medical College of Virginia of Virginia Commonwealth
University, Richmond 23298-0519, USA.<br>
<br>
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.
— Tally
March 27, 2002
Hi! I had pseudo tumor for five years. After two spinal taps, I was put on
medication and told to lose weight. I didn't and it had come to the point
of needing a mechanical shunt put in my back to get rid of the excess water
when the solution of weight loss surgery came up. I had my RNY surgery on
October 29, 2001. I'm 5 months out, down 97 pounds and pseudo tumor free!
The migraines, dizziness and loss of vision were COMPLETELY gone within the
first two months. I don't usually talk about my personal medical problems
but it is a rare disease and I wish someone would have told me what WLS
surgery could do for my condition earlier. Good luck!
— vbenedict0208
March 27, 2002
Hi: Yes, I was diagnosed with PTC also. I had had it for many many years.
I was VERY fortunate that because I hadn't progressed yet to major vision
loss. However, MAJOR headaches, nausea, etc. I also had over the years a
few spinal taps and the meds, and of course told to lose weight. I had the
surgery 2/2/01 and have now lost approx 175lbs!! (a few more lbs and I'll
be at goal!) I would say that the headaches stopped after the first 3 or so
months. I have not had any since. I however, need to go to my
opthamologist (SP!) just for a follow up. Good luck to you!
— Karen A.
March 27, 2002
I havn't heard that diagnosis in a long time. I too suffered from all the
symptoms you mentioned. I almost died in a country hospital though, before
they thought of doing a spinal tap the 1st time... my pressure was 78, they
immediatley drained off a lot of fluid & sent me via ground ambulance
to a huge hospital with a neuro ICU where they did 2 more taps before I
felt better. I had to return several times for repeat taps" whenever I
felt my pressure rising" ie.. migraines, blurred vision, eyes bulging,
severe night vision problems with oncoming cars headlights. They wanted to
put a shunt in, I refused. I even got preg. with twins and had to have 2
taps with out anethesia at all. I had WLS & have lost 200lbs so far in
11 months and have not had one single migraine hence no taps! YEA & no
meds! Genger Galloway
— Genger G.
March 27, 2002
Thanks SO much for responding to my question!! I was thrilled to read each
of your responses. I have to admit that it has been a long, hard road with
the weight and the PTC. I was diagnosed almost 10 years ago and have had
serial lumbar punctures done every 6-8 weeks, have been placed on high
doses of diuretics and other assorted medications and ultimately
"theatened" with a LP Shunt. I did end up having surgery (an
optic nerve decompression) to prevent vision loss (TWICE!). The hardest
thing about the disease is that doctors aren't familiar with the disease. I
can't tell you how many interns, residents and fully licensed physicians I
have had to "inform" about the disease in the past few years. You
have given me hope that after my surgery, I can have my life back! And I
have to say I am so proud of each of you for the weight you have lost so
far!! You are wonderful role models! Thanks again!
— KathieInHawaii
March 28, 2002
I had been diagnosed with PTC 6 months before my WLS. I was told that I
had to loose the weight or have a shunt placed to remove the fluid from my
brain. I was slowly loosing my eyesight due to the pressure in my eyes. I
didn't respond to the diamox medicine that was perscribed. The spinal taps
were horrible and didn't relieve the pressure for long. I had the open rny
on August 8, 2001 and by October had no symptoms of PTC. It only took 30
pounds lost to be cured. I hardly ever have headaches anymore at all. I
am so thankful for this surgery.
— Amy B.
April 10, 2002
I also have been suffering with Psuedotumor for 2 years. My first
neurologist told me to lose 50 pounds and I would be fine. Oh if it was
only so easy! Obviously, I found a more sensitive neurologist. I am two
weeks post op and I do not have to take the diamox anymore. I haven't had
symptoms since the surgery. NO HEADACHES! I think the surgery was totally
responsible for the turn around.
— Michelle C.
April 10, 2002
I just wanted to add... I was diagnosed with Pseudotumor about 6 years ago.
I was told to lose weight. I would lose 50 lbs and then gain it back over
these last years. I was lucky enough that I did respond to the Diamox, so
I guess that's why it took me so long to have the surgery; my sight wasn't
threatened as long as I took the meds. I saw a surgeon about 5 years ago,
but decided I wanted to have kids first. My second child was born a year
ago and I had my surgery in December. I haven't been on my Diamox since
February. What a relief. I have a few headaches, but I think they are
hormonal.
— Elizabeth R.
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