Hi everyone,

This is my first post. I really want to share my story but I also have some questions. I'm 23 and I have been living with pseudotumor cerebri for the past year and a half. It all started when my vision would get really fuzzy and then it would start to go black. At first I just thought I was tired, because I work night shift and also suffer from insomnia, but then it started coming on more and more and it would take longer and longer for everything to come back into focus. The first thing I did was I made an appointment to see a regular run of the mill eye doctor. I didn’t know where to start and I thought I might just need glasses. They ran a few tests on my eyes, and had this machine that takes a picture of the back of your eye, and found that my optic nerves were very swollen. The Dr there told me to find a neurologist as soon as possible.

I started seeing a neurologist and at first he was completely puzzled by the black outs in my vision. I also started to get migraine headaches on a daily basis. He decided to take me off the birth control I had been taking for years (Yaz) and get an MRI done. He suggested I had psudeotumor cerebri but he wasn’t sure. They didn’t find anything on the MRI so at that point he ordered a spinal tap. I was in the ER for a spinal tap and CT scan a couple of weeks later, they did a CT scan and I was feeling very sick after so they gave me an IV and started prepping me for the spinal tap. When they got the results of my blood work back, they had “great” news for me. I was pregnant. After the initial shock of pregnancy, which happened while I was faithfully taking birth control every day, we had to put that aside and continue with the spinal tap. The neurologist was the one doing it, but it didn’t work out so well. He couldn’t get it in the right spot. After two tries and me screaming in pain, the ER doctor tried also and all three attempts were unsuccessful. They decided I’d have to have a fluoroscopy lumbar puncture instead, and since I was pregnant, it was out of the question at that time. The neurologist then referred me to a neuro-ophthalmologist.

I started seeing the neuro-ophthalmologist right away, and I was diagnosed with pseudotumor cerebri. He said I really had two treatment options: medication, or surgery, but since I was pregnant he did not think it was safe for me to pursue either of those options at that time. Let’s call this doctor “DR. DB”. He was very rude when I saw him and he chose to monitor my vision every two weeks with me coming in for a visual field test. When I questioned why he was not actually treating me and instead was just monitoring my vision getting worse, he blew up at me and told me if I didn’t like his practices that I could see another doctor for a 2nd opinion. So I did.

While waiting for an appointment with my second neuro-ophthalmologist I had a miscarriage. As much as I was devastated, I decided then and there that I absolutely had to find some kind of treatment for this disorder. I started seeing the 2nd doctor and he ordered me the fluoroscopy lumbar puncture which was not nearly as bad as the first butchered attempt. They found my opening pressure to be around 35, which was severely elevated. He then prescribed me with Diamox. Diamox happens to be a cousin of sulfa, a medication I am allergic to. The doctor decided the benefits of the medication outweighed the risks, since this is the #1 medication for treating pseudotumor cerebri. I went home, and took a pill right before I went to work that night (3rd shift). Well, I have never had a reaction to any drug like I had with Diamox! About an hour after taking it I started feeling groggy and nauseous. I started throwing up and sweating and felt itchy all over. My ears started buzzing with the worst migraine I had ever felt. I had to have my boyfriend come and pick me up while I was at work and bring me home. The next day the doctor ordered me off diamox and said I must have had an allergic reaction. He put me on Lasix instead, another diuretic, along with topamax for the migraines. After about 6 months on the medication and coming back every few weeks for a field vision exam, they decided my vison was getting worse. The blackouts in my vision were becoming much more frequent. I was also having migraines lasting 2-4 days straight and causing me to miss work because I just couldn’t function. The doctor told me I would have to have surgery. First the optic sheath decompression surgery, then if that did not fix anything, possibly shunt surgery further down the road. It just so happens the only doctor in that hospital that performs the shealth decompression just so happens to be rude “DR. DB”. So I went back to him for the surgery. The surgery went very well, and after the surgery my vision was great! And that’s where the story ends, right? WRONG!

About two weeks after the surgery the black outs started coming back, and the migraines were worse than ever. I continued to see “DR. DB” following the surgery and continued on the lasix and topamax. Then one day out of the blue I get a phone call telling me that “DR. DB” has suddenly left his practice and nobody knows if he will ever return. Great. They insist I see his fellow since they were working under him. I make an appointment and see her. She tells me that the only way my vision will ever get better is if I lose weight. Now, I’m 5ft tall and I weigh about 250lbs. I know I am overweight. This isn’t the first time I’ve heard that losing weight might help my condition. All along I have been trying to lose weight, but with the surgeries and migraines and the depression all of this has been causing me, it’s not going so well. She pretty much told me that no surgery will help me, no medication will help me, I need start losing weight fast. Sure doctor, no problem, right away!

At this point, I went back to my first 2nd opinion doctor again and start seeing him exclusively. He had me do a field vision exam and took one look at my eyes and told me flat out, even if I loose 100 pounds in the next year it won’t make any difference because I will be permanently blind by then. My eyes had degraded to the point where the doctor was afraid I would have permanent vision loss if they did not do something quick. Time for the last resort - Ventriculoperitoneal shunt surgery. He referred me to a neurosurgeon and told me I need to have the surgery as soon as possible. They couldn’t guarantee that I would get any of the vision I had already lost back – but they wanted to prevent further vision loss and permanent blindness.

I made an appointment for the VP shunt surgery and had the surgery on March 1st. They shaved half my head (which turned into my whole head before I left the hospital). Overall, the surgery went great. I was up and walking the same day, eating solid food that night, and I only spent one day in the hospital. That’s right, I had brain surgery and went home the very next day! Following the surgery I had no pain in my head as it was all numb, but I was having this awful pain in my lower belly where the tube is rubbing against my insides. The doctors assure me this is normal for the first few months while my body gets used to the tube. I continue to recover at home, and instantly saw my vision improving. The only real problem I had was a minor breakdown the day I realized I could feel the tubing underneath my skin – I could feel it at the valve at the top of my skull and follow it all the way down along my neck. The blackouts had decreased so much I almost forgot what they were like. Three weeks after the surgery I got my staples removed and had X-rays to prove everything was in the right place (especially since I was still complaining about belly pain) and they assured me everything is where it’s supposed to be. The neurosurgeon told me to follow up in a year for a CT scan, and in the meantime continue with my neuro-ophthalmologist. He also told me that if I continued to have pain in my belly past three months, that I would have to make an appointment with the surgeon that did the belly part of the surgery and that they may have to relocate the end of the tube (but it’s possible that I could still have pain in the new spot they move it to).

Two months after the surgery, my neuro-ophthalmologist believes I have 75% of my vision back. The swelling has gone down significantly. I have to stay on the medication (lasix and topamax) to try to help the swelling go down more. Overall I feel great. I feel like I have myself back. I joined a gym and started a new diet and I already lost 12 pounds. I returned to work after being on short term disability for only 4 weeks. My migraines have also dramatically decreased. I do miss my hair, but I have a great wig I am wearing to work until it grows out a bit more.

Even though my vison has improved so much, I am still having a LOT of pain in my lower belly on the right hand side – where the tube is. The pain comes and goes. Sometimes if I work out too hard at the gym, I will have a lot of pain later that evening. Sometimes it just comes out of nowhere, like tonight, which caused me to start googling and led me to this website. Tonight it was throbbing so bad I felt like I couldn’t walk and was having trouble breathing. I didn’t want to go to the hospital because it usually eases up within a few hours. I don’t know if I should go ahead and make an appointment with the surgeon or wait longer since it hasn’t been exactly three months yet? Anybody else have pain like this after a VP shunt? I’ve read every thread on here I can find about pseudotumor cerebri but haven’t seen a lot around on the shunt surgery.

Sorry this is so long, it just feels good to get it all out!

Don't apologize for the lengthy post... you have found some caring folks to share with.
I am sorry for what all you are going through.
I hope you continue to visit our forums and look around!
There are some great folks here who will be able to help you!
Blessings to you!

Hello, and welcome to NT! There are many friendly, caring, and very helpful people here.

We're so glad you found us!

Here is a link to the General Health forum to help get you started:

http://neurotalk.psychcentral.com/forum2.html

I wish you all the best.

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Hello, thank you so much for posting... I love your story and you could have went on and on... I wanted to know exactly everything and in detail. Thanks again so much.
I have recently been diagnosed with pseudotumor and I am scared to death about going blind. Your story gives me hope. I have already had a spinal tap and I have been very sick but at least I do know there is true hope for me.

Anyone facing the prospect of losing one's vision would be terrified, so of course you're scared. Just makes sense.

What's your treatment plan, now that you've got a diagnosis?

This is a great place to come, both for information & for company when you just need a friendly ear, someone who understands how you feel. The people here do.

I'd suggest that you go on over to the General & Rare Disease Forum & introduce yourself there. Start a thread if there's not one going with your problem: http://neurotalk.psychcentral.com/forum2.html

You might also want to look at the Mayo site if you haven't yet: http://www.mayoclinic.com/health/pse...erebri/DS00851

Keep coming back. Ask questions. Don't ever stop asking questions. & come by here any time.

I have suffered with Psudo Tumor for over 2 years, when your doctor tells you to loose weight, listen. This is the key to this condition. Trust me!!! I am not what you call over weight, very opposite. My weight was 185 and very much in shape. I lost 30 pounds as my Doctor told me and the condition is now almost gone. If you are going to do anything more consider gastric bypass. Not being mean, I am being honest and helpful.

I'm 30 years old and have been suffering with pseudo tumor for 6years and I'm now getting holes on my head that don't heal or close they leak clear fluid daily and my trama physician says its spinal fluid building up to much and has no place to go but out. I now have sizures glacoma and athsma and diabetes and back pain from all the lumbar punctures. I'm in a bad place in my mind I feel alone in my insomnia world because no one knows how this feels well at least my family dont understand me.but who would its all in our heads LOL

Welcome to NT!

I'm so very sorry you are dealing with all of this. And yes, I can understand how you feel when our family/friends don't comprehend what we go thru. It makes for a pretty lonely situation.
We've got several forums here at NT that you might benefit greatly from. Since alot of this has to do with your back, let me give you the shortcut link to get to the Spinal forum:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

Also, you might want to check out the Central Spinal Fluid Leak forum:
http://neurotalk.psychcentral.com/fo...sprune=-1&f=78
As you go thru the menu of different forums, you'll see ones that are specific to several of the issues you describe, even the insomnia forum!

Also, if you just need to talk about your feelings because of what this all is doing to you, feel welcome at the Depression/Anxiety forum I go there alot because it's so down-to-earth and others are so willing to help.

We all stick together in this. Please know that you are not alone.

I also wanted to mention that when you get to a forum you'd like to share in, make sure you start a new thread so people will easily see it and you'll get better feedback. At the top left of the screen you'll see an option "New Thread"

Just holler if you need help finding your way around.
It's great to have you!
Caring,
Rae

mrscastillo,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Looks as though you are finding you way around. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene