Hello Everyone

Wanted to ask a specific question.

I have Pseudo Tumor and I am having the Lap Band specifically to help with this condition. Is there anyone out there who got to go off medications after getting the surgery and losing weight?

I considered a shunt first, but my neurosurgeon told me this should be a first line option.

Any input would be great!

Suzanne

i have it, but have never had to go on meds or get the shunt.. i still get headaches and when i do it bothers my eyes. the last time i went and got my eyes checked by my reg eye doc the swelling was down, but that was before surgery. i had quit smoking though. i need to make an appointment with my specialist to have him take a look. I only go in every few years, since i have remained stable for so many years.

I was always under the impression that they werent sure it was caused by being overweight. i was told it is generally seen in over weight woman but that they dont know what for sure causes it. think they found it in me finally back when i was 14 or 15yo. it took them a few years to figure out why i was getting migraines.

Thanks for writing back. A huge congratulations on your weight loss that is awessome!!

It is great that you never had to go on medications, I think this diagnosis affects people very differently. I have been on 3 extra medications since being diagnosed in 2005. I am a Nurse Practitioner and sometimes I find it hard to function regularly. I want a lap band so I can get back to my old self. I am so anxious for that.

My neurosurgeon told me that weight loss is the only "cure" and that I would have to be within 20-30 pounds of my ideal body weight to recover. That is really scarey to me, since I didn't really want to look like a scare crow. But I will do what I have to to get rid of this.

Keep up all the great work!

I have psuedo tumor cerebri disease. I was unable to get control with medication and had to have a VP shunt done. I have been symptom free since my shunt. I did have it stop working once and got very sick and had to have a replacement.

After my replacement, I had lapband done and I'm now 5 pounds to goal. I doubt I would be symptom free and in remission as I am now if I didn't have a VP shunt even with being the correct BMI. I'm curious to hear anyone elses storys that have PTC disease.

Melody is your PTC idiopathic (no specific cause) or cause by some sort of malformation or blockage? I am SOOO afarid that I am going to do this and my PTC will not get better. I am doing this for ONE reason. I want this to go away!! I am not against getting a shunt, but I am more scared of that than a lapband.

Can you tell me what meds you were on before you went into remission? I am on Diamox sequels 500mg 2 in morning 2 in the evening. Maxzide 75/50 once daily, Potassium 60 meq per day. I used to be on Topamax, but true to its nickname "Dopamax" I was not able to function and do my job although it relieved the headaches. When I went to a consultation regarding a shunt the doctor said he places shunts in PTC patient according to 3 criteria: loss of vision, intractable headache, and inability remain employed due to symptoms. I felt a little betrayed when I heard that because I would rather die (almost this dramatic) than be unemployed. I take Darvocet every night at bedtime, just so I can sleep lying down. Don't mean to rant but I am just beaten down by this and ready to be healthy.

I am so glad you are well now. Does your pressure ever get too low now that you are ideal body weight and have the shunt taking away extra CFS?

If you don't mind telling me a more, I would love to hear more about this from you, it seems like you have been through the trenches.

Well, I was skimming thru the forum and saw this topic of Pseudo Tumor and thought I need to add my 2 cents. I have been thru pretty much every aspect of pseudo tumor. It all started several years ago. I started noticing vision loss and problems with my equilibrium. Saw several doctors who decided my optic nerve was swollen. I was sent to a neuro-opt. He put me on Diamox and told me I needed to lose weight. I lost about 20 lbs over the next year and saw the doctor several times. I eventually got off the meds and thought everything was ok. About 3 years later I started noticing a nasal drip. I assumed it was allergies and went to the doc. several times and tried different meds and nose sprays. It was weird because it was like water leaking from a faucet. If I bent over it came dripping out. Finally went to a ENT and he said I had a CSF leak. The intra-cranial pressure had over time caused a place to break thru my skull and the spinal fluid was leaking out. I had surgery to "patch" the hole. Stayed in ICU flat of my back for a week waiting for the hole to heal. Came home and it broke through again. I saw another doctor, a neurosurgeon this time and he said I would either need a shunt or crainiotomy (the latter is a lot more serious surgery). He did a lumbar puncture (I had numerous of these over the years) and he decided we could go with the shunt. I had surgery where he placed the shunt in my back. I stayed in the hospital for about 5 days waiting for my pressure to get back to normal. The headaches were the worst pain you can imagine. I came home and the shunt was working fine, but since I had already met deductibles I wanted to have lapband surgery since I figured my medical history would allow the insurance to approve the surgery. Sure enough I was approved and on Nov 30, 2007 I was banded. I have lost about 55 lbs (I am a slow loser) and between the shunt and the weight loss I have not had any more symptons of the psedo tumor. My word of advice is to not ignore the symptoms. This is serious stuff.

Hi, new here, but had to put in my 2 cents. Have had PTC for about 10 years now, diamox, LPs and (unfortunately) loosing weight to within 15 pounds of normal/goal did not help,I have been shunted with multiple revisions. I have also unfortunately regained most of the weight lost, leading to my decision to get banded. After 3 attempts to be approved for the band I was successful in getting approved and was banded on June 1 so am still early in my band journey. Honestly my hopes are to improve my overall health, if my PTC were to stabilize that would be a bonus, but I am not optomistic. I am really curious to hear other peoples experience and outcomes. Good luck to all who suffer the PTC beast.

I was on Diamox sequels that didn't work, and Topamax. Both did not work for me. I was a complete mess. I'm talking full out excruciating tears daily. I just could not function.

I'm now with in 4 pounds of a normal BMI for my height of 5'3. I still get normal headaches off and on even now that I have a VP shunt. Let me tell you I don't feel that weight loss is the key to this disease. I just don't. I don't feel like loosing all this weight has helped my PTC disease one bit. It's helped my health over all, but not my PTC disease that my shunt keeps in remission. And I fear the day my VP shunt fails again. Deep inside I know it will. I feel I'm facing a life time of revisions like the above poster.

When my shunt is working I'm symptom free, I'm a normal person. When it's not working all my symptoms come back full force. I'm in constant headache hell and I'm throwing up everything due to the extreme head pressure. I'm convinced when and if my shunt fails again, loosing this 123 pounds I've lost won't make a bit of difference in symptoms compared to being 123 pounds heavier when my vp shunt failed. The shunt gave me my life back. Get a VP shunt. It's hell when you first have it placed (you go bald, they cut all your muscles inside to thread the tube down your spine and that healing up feels horrible), but you'll get your life back. And revisions aren't anything like the 1st initial placement.

This will sound crazy but I thought I would share. I was diagnosed with Pseudo Tumor in 2002. It was really bad and at that point I had lost 75% of my peripheral vision. (My vision was restored once I had spinal taps to reduce the pressure) Over the next 2 years I suffered with debilitating headaches. Many medications were tried and the majority of the time I was in a major fog from the medications. The doctor wanted to do a shunt but I refused. I had spinal taps to relieve the pressure. (55 in a 2 year span) I lost enough weight to put me at a normal BMI and still suffered symptoms. I also suffered from migranes on top of the pressure headaches. In 2005 I had a Hysterectomy to help with the migraines. My Neuro said it wouldn't help with the migraines but my Gyn disagreed. Now I gained major weight after the surgery. Well...... since I had the hysterectomy I haven't had another episode with the Pseudo Tumor even with the weight gain. Not sure if it was a fluke or a miracle. Today I no longer take any meds for the Pseudo Tumor and I am working on the weight gain with a Realize Band.

I am so freaked out right now in regards to this thread. In January of 2007 I was at a funeral of a really close friend and suddenly came down with the most painful headache I ever felt in my life. The headache went on non stop for another week until I finally went to the doctor and they attributed it to sinuses. The day after I went to the doctor I started having double vision and the right side of my face started to slope and my eye pretty much parked in the corner and shut half way. I went to the ER and they thought it was Bell's Palsey (which I had twice in the past) and were going to start treatment for it, but the he called Nurology and they wouldnt let me leave til he saw me. When he saw me he decided to admit me into the hospital. I was in the hospital for over a week until they came up with a disease called Tolosa Hunt Syndrome. They started me on 100 mg of steroids which immediatly opened my eye and brought it back to the normal position. Each time the Nurologist tried to wean me off the steroids my eye would start messing up again. He had me see an Opto/Nerologist and he was the one that said I had a Pseudo tumor where the orbits span out. He started me on a pill form of Chemo which is called Methotrexate and eased me off the steroids which caused me to get all the way up to 316lbs. I have been on the Methotrexate for over two years now and have no further problems with my eye. I notice what causes it to start acting up a little is when my stress volume increases or when I cry. I just thought I was alone and did not know anyone else or a support group of anyone who had it. I would love to talk more with those who have it just to get a better understanding of it.

Thanks everyone for your candid and timely responses. I appreciate the insight. Although I am discouraged by the fact that most of you say weight loss does not help. I am so sad about that, since that is the only reason I got the band in the first place. I hate the effects of the drugs I am on, I need to think clearly and process information rapidly in my job and sometimes that is a huge challenge. I got off Topamax because it basically destroyed my short term memory and I feel like a big emotionless blob. Diamox Sequels are a bit better, but still make me feel like my mentation drag.

It has been a long time since I had a really bad episode. The last time was over a year ago and I went to the Neuro-Ophthamologist and she refused to do an LP after I had been off work for a week puking and unable to move due to a debilitating headache. Needless to say I don't see her anymore. My PCP is willing to give me the medication I need to manage my symptoms. Thank God for small favors.