Psuedo Tumor Cerebri

Wednesday, August 09, 2006

The last couple of months I have been having problems on and off with my psuedo tumor cerebri. What is that, you ask? Well, for some reason my brain makes too much cerebrial fluid and it builds up pressure in the brain and spinal cord.
In 2000 or 2001 when I was originally diagnosed, I was going blind from it. It had caused a hemmorage in my left optical nerve. Luckily, I decided I better get a little more stern with my doctor about what was bothering me. He thought at first it was some kind of migraines. Well, I did have a headache but not migraines. After a trip to the eye doctor he found the hemmorage and sent me to a nuerologist, thinking I had a brain tumor. After much testing, (including spinal tap...yuck) I was diagnosed with PTC. I was put on medication 3 times a day. Great stuff, it did the trick! But made my hands and feet tingle and go numb. You also can't have anything carbonated. I am not complaining...I am very lucky! I was on a fairly low dose and after about a year, I went into remission. Some people are not nearly as lucky and have to have brain shunts put in. And sometimes that doesn't work. I feel very fortunate.
Lately I am getting kind of worried tho! Twice in the last few months I have felt the pressure again and took my pills for a few days and I lost nine pounds of fluid in a couiple days. But this week I really was feeling rough. I felt the pressure starting again but didn't want to start the meds again and then I woke up and I could hardly lift my head. That is the worse it has been since I have been off the meds in the last 4 years. I started on my meds and lost 10 pounds before the next morning. I stayed on the meds and lost a couple more the next day.
I am not liking the frequency of this. And it took me until today to loosen my neck up at all, from all the pressure. I think it is time to go back to the nuerologist and fess up! I hate doing that. But I am getting concerned. If I am concerned then my doc is probably gonna be mad at me!


Anonymous Melanie said...

So make the appointment! NOW WOMAN! Before it gets worse...

1:47 PM  
Blogger ...jus me said...

shush daughter, that's easy for you to say. You are not the one who has to pay for the doctor visits and prescriptions and has your hands and feet tingle all the time, and then alternate between tingling and numb. I am just not ready for all that again and then everything starts to taste bad. Guess it may help with the diet huh?

9:21 PM  
Anonymous Melanie said...

shush mommy, you will not be around to see what is left behind because you didn't go to the doctor. I think I have a say in this. So there!

5:20 PM  
Blogger tugboat 54 said...

You better take care of yourself !!!

5:35 PM  
Blogger tugboat 54 said...

Listen to your daughter !!!

5:25 PM  
Blogger tugboat 54 said...

Listen to your daughter!!!

5:26 PM  
Anonymous Erin said...

I stumbled upon your blog today. I have PTC also. This blog is from August. What has happened since then?

6:05 AM  
Blogger ...jus me said...

Erin...Hi glad you found my blog! I changed from blogger to my own domain so you can find my blog at
Hope to see you soon!

6:52 PM  
Anonymous Anonymous said...

hey, my name is Cassie. i was just diagnosed with PTC in feb after being misdiagnosed as having non-classical migraines back in aug. the only reason they found it was because i had to stop all the meds when i became pregnant. now i'm 5months preggo and can't take the meds so i see a nuerosurgeon tomorow to get the spinal shunt. i hate this horrible desease and i hope u get better soon, i have developed a blind spot in each eye since october. weight loss doesnt help either, i had gastric bypass in march 07 and i've lost 160lbs.

5:26 PM  
Blogger ...jus me said...

Sorry's not much fun! Is your pregnancy reacting with the PTC? I am very lucky as to not having to go any further than just the diamox. It eventually controls it, although this time it took longer for it to really "get it under control" I have not been very good at taking my meds lately as I had to go on steroids for asthma and that just stirs everything up. My asthma is not under control since I have been off the steroids and now I can't seem to get myself disiplined enough to take all the meds like I should be. and I don't want to be on steroids, but breathing is a nice option, and it really felt good!

5:40 PM  
Blogger ...jus me said...

Cassie, let me know how you are doing! Why don't they wait until after the baby is born and see how the meds work... Concerned about you please email me @

5:44 PM  
Anonymous CARNETHIA GILLIS said...


11:44 AM  
Blogger ...jus me said...

Hang in there girlfriend, I do understand! I am still fighting the effects of the steroids on my PTC. I will never take them is so not worth it! Think I would rather be on oxygen, than have a brain shunt! Yes they do have problems with the tap. I will be praying for you! If you want to talk just send me an email to the address in one of the previous comments.

8:41 PM  
Anonymous velma Coon said...

Hello, my name is Velma and i am in oklahoma. I was just diagnosed with PTC less than a week ago. i was back and forth from doctor to doctor for about 2 weeks before being referred to an optomatrist. i am still scared to death about the whole PTC thing. i am a music director in my church and i cant even see to lead the music.

i honestly never heard of PTC until i became a statistic. i now pray every morning for myself and others dealing with PTC. take strength in the Lord and he will guide.

i will be continual in prayer for others with PTC.

7:51 AM  
Anonymous Anonymous said...

Hi, my name is Susan and I'm a 29 year old mother of 3. I was diagnosed in January of this year and have already had to go through two spinal taps. The last one was so bad it made me so sick I was in and out of the hospital 3 times before they agreed to do the blood patch. But now I'm scared cause my head still hurts a little and the noises have come back in my ears already. I'm glad we found your sight to have someone to relate to about this. Scared stiff

6:37 AM  
Blogger ...jus me said...

Susan & Velma, Mine has been under control for quite some time now with 2 diamox per day. If I forget to take them for a couple weeks, which I tend to do at times (hate taking meds) then my head sloshing and neck pain and fluids come right back. Part of my problem is that I am truly addicted to mountain dew, and I can't drink anything carbonated with my meds. So I conveniently "forget" for awhile, and drink my pop! It's like a prescription for self destruction. I am eating a lot healthier and have been off pop of all kinds for a month now and am not really craving it. Pray for me as the weather gets warmer, that's when I want it the most. When I started eating right and no pop and taking my meds I lost 13 pounds of fluid the first week! Man did that change the way I was feeling!
I will keep you in my prayers.I will give you my email so you can email me directly if you want.

4:21 PM  
Blogger Amy Belly said...

I have just been diagnosed with this! I am really clueless to this disease. I had 3 MRI's that showed I had fluid on my Left Optic Nerve and my sinuses are awful. I have been reading this blog, and it is wonderful!! I was very suprised to hear all the symptoms!! I have had these symptoms for about 6 years!!! I live in Georgia and just blamed it on allergies, and so did my Family Practice doc.
It was when I went to get my eyes checked that he said he saw the fluid and told me I either have a Brain tumor or PTC. Talk about a shocker, you think you are just getting old and that would account for the vision changes, but to find out it could be a tumor!!!???
I had a spinal tap last week and some of the symptoms have improved, but I don't know where to go from here! I was told that after the spinal tap and I needed to lose about 30 lbs that the problem would go away. But I am reading that is probably not the case at all!!
Should I go ahead and suggest the other medications???I will have a hard time giving up the Coke and Mountain Dew, but if it really helps, I will do anything!!! I have a very active 15 year old at the house and I am very dedicated to my job and laying around the house hurting is not my idea of a good lifestyle!! I need people!!! I love talking and interacting!! but lately, the headaches and the sounds in my head have just about drove me crazy!
HELP!! I need advice!!!

7:46 AM  
Anonymous Manda said...

I have had PTC since 1992. My wonderful Neurosurgeon put a lumbar to peritoneal shunt in me. At first I had alot of revisions and replacements, but the one I have currently has lasted 10+ years. I also had the bilateral optic nerve decompressions to prevent any further damage to my optic nerves. By the way, I am a police officer and you can live your life normally with PTC. It's all about the doc. Don't take no for an answer.

3:57 AM  
Blogger meme said...

My daughter has had PTC for 2 years and she has been miserable the whole time she had her first shunt in june 2007 14 months later in Oct 2008 she had a revision 3 days later she had a shunt placed in her back in 2 days had an infection in the back shunt since oct she has 3 more revisions on her head shunt and 20 spinal taps. her pain in her head is so bad she almosts throws up every day she gets no relief even with pain killers she is allergic to diamox. on thurs she will have her 5th revision a new valve will be put in. the shunt in her back isnt working so dr is trying to decide whether to take it out or revise. it hasnt worked properly since put in. does this ever get better. i (we) need some hope in all this
she has 3 small children and many days goes by that she cant even take care of them. she is very stressed and depressed. please if anyone has any insight i would appreciate it.

5:20 PM  
Anonymous jusmemn said...

Meme, and all the rest of you, I feel for all of you! This Ptc is horrible to live with! I have it too, and it's bad right now, have already permanately lost some field vision, and my eyes have really been acting up alot lately, among the other symptoms. I need the gastic bypass and a shunt probably and I have no insurance. This is so depressing! Please, let us pray! jus me, that's my handle too jusme!

9:21 PM  
Blogger tif said...

I have been getting pressure too, but I have gained ten pounds since remission. So I am trying to lose another 60 lbs, because I like feeling my feet and hands. LOL! I have lost a couple pounds already and have noticed a change in pressure. Maybe a change in diet and a little wieght loss would help.

8:37 PM  
Anonymous Anonymous said...

Hi,Ten years ago I was diagnosed with pti....I had no symptons..just went for a regular eye exam....after 5 hours of testinng,MRI & spinal tap,actually 2 in 3 days(first one they forgot to get opening pressure)..I had never heard of this before,I saw the top doctor in manhattan-Dr. Mark Kuppersmith......was put on diamox & potassium...After taking the diamox for 3 years I ended up with 14 kidney stones--which caused me to have 5 eswal procedures...a third spinal tap landed me in the er with the worst headache I've ever had...finally a blood patch was done and instant relief......3 years ago I took my self off the water pills...don't know if that was the right choice..I was just tired of all the tests and doctors,,also I was diagnosed with never ends....I eat no junk food,lots of fruit,veggies,fish and chicken.....trying to lose the extra weight......i believe I was in remission for a while.......last month I had double ear infections.....was put on high dose of antibiotics..but since then when I wake up in the morning the back of my head hurts like heck and feels very heavy...after walking around a bit it goes away.I really don't want to go back on diamox & I hate those visual field test..(they cause me to have panic attacks)...I get so mad...Why me?maybe if I eat alot of foods that are diuretics,would do the trick..I wish I knew

5:42 AM  
Anonymous Debbie said...

Hiya, my name is Debbie and I've just recently been re-diagnosed with PTC. I was diagnosed about 5 years ago with it while i was pregnant with my last son. They were able to give me topomax and diamox and I lost weight which sent it to remission. The doctor said if i could keep the weight off then it may not come back. Unfortunately over the next five years I have gained the weight back and a bit more. Now I have been told its back and I fear going to my neurologist because I know what he will say. Back then I had to have a LP, some other tests and more. He was talking of putting a shunt in if it didn't reside, but as luck had did. But now i am suffering symptoms far worse than i did back then, the headaches, stinging eyes, sensitive to light and a few others. I don't have health insurance of any kind nor a job, but I am going to hope the docs will take payment plans. I'm only 32 years old and I have three school age boys and I'm not ready to lose my eyesight or anything else. I would never wish this on anyone else so my heart goes out to you other ladies. I'm glad I'm not in it alone though i used to wonder just how rare it was since all the doctors in my area used to say i was their first patient with PTC.

9:16 PM  
Anonymous Anonymous said...

Hi, I was diaganosed with ptc in 2000. meds didnt work for me so they put a lumbar shunt in. This shunt worked until 2005 and then had to be replaced. They replaced the lumbar shunt in August, 2005 and then had to replace again in Nov., 2005. By Jan, 2006 the shunt was not working again. They replaced that one with a brain shunt. It has worked great since, until a few weeks ago. Then I found out that the life expectancy of the shunt was only 5 years or so. Now they are talking about replacing this one. Does anyone know if there is another solution. When they put my brain shunt in I traded the headaches for seizures. The seizures are easier to live with than the headaches but I cant help but wonder what will happen if they have to go back in the brain again. I have to have another lp, (of course after having so many of these, they just get more painful) because this is the only way they can prove for sure that my shunt is failing. I am very frustrated and also scared. I am having memory issues as well. Does anyone have any advise?

12:21 PM  
Blogger Amanda said...

I have had PTC for 8 years. I went along time into remission after losing 200 pounds following a gastric bypass. I had a baby 4 months ago and now the symptoms are returning.... The headaches are almost unbearable, but like you i am being really stubborn about going to the doctor. Not really sure what to do since the first appointment I can get wont be for almost a month!

10:36 AM  
Blogger Lori said...

Hey, I'm new to this site but, I wish I had it when I was 1st diagnosed, it was a nightmare that I was certain would never end. Any who I have had PTC for 13 years & it has been a roller coaster, I have good moment & then I have bad, which go from bad to extremely bad to worse very quickly. I llive in fear constantly because I know it just a matter of time before my "remission" has ended, this can happen even though I take 2500 mg. of Diamox daily. Thanks for the venting.

7:15 PM  

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