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.