Pseudo Tumor Cerebri

I would like some answers please! I was diagnosed with Pseudo Tumor Cerebri, had weightloss surgery and am now down 70lbs. After my most recent LP my pressure is still increased. My neurosurgeon is sending me to a neuro opthamologist but says that shunting is likely. Can anyone tell me of their experience with shunting? I have taken Diamox and it has not worked so far. I do have Papilladema,a nd show some vision loss in my visual fields. HELP! Any info would be great

[Cath278]

Hi. Left you a message on your notes .Cath.

[jo150408]

I was given the same diagnosis last year.  This year with different doctors - different state, my new MRI showed that I have a Pineal Cyst in my brain.  The symptoms of the cyst are very much like the symptoms of psudotumor.  My cyst is in a postion that because of its size, it could be blocking some of the veins that let the fluid out of the brain.  The diamox has not worked for me.  I have ringing in my ears, pressure in my head, I am tired, I dont deal well with a lot of noise or confusion.  I have dimming or total loss of vision when standing after laying down.  I have tingling in many parts of my body.  This could be from the diamox, but I guess it can be from the cyst too.  Many get headache pain, although I have not.  The neurosurgeon they sent me to last year did not feel that I had enough loss of vision to justify a shunt.  I am glad, because the shunt would not have solved the problem of the cyst.  Before doing any surgery, I would suggest that you have them check very carefully to make sure there is not a cyst causing your problems.  Usually with psudotumor, the diamox will work quickly.  With me it had no effect, so I figured there must be something else causing the problem.

jo

[Dr Rajgopal]

Hi,
In cases of Pseudo Tumour Cerebri with vision loss, when standard medical therapy is ineffective, Corticosteroids may be used. Treatment should be coupled with emergency surgical intervention if the visual function continues to deteriorate or does not improve immediately with corticosteroid treatment. Ventricular shunts can be used to relieve the intracranial pressure and can be monitored for function using an extracranial subcutaneous compressible bulb and one-way valve. The ophthalmic surgical approach in patients with progressive vision loss and papilledema involves cutting slits or rectangular patches in the dura surrounding the optic nerve immediately behind the globe. Please consult the neuro opthalmologist and discuss the treatment plan. Hope this helps you. Take care and regards!

[Cath278]

Hi.I just read your last posts and have some issues-questions with them.I hope you dont mind my questions relating to them.

To jo; I was horrified to hear what has happened to you! You poor thing. I dont understand how they could make a diagnoses like PTC and then say it was a Pineal cyst. Did it not show up in the first series of MRI? Did they make that big a mistake?!
How has your vision become comprimised? I thought the swelling of the optic nerve-Papilloedema- came about from too much csf? Did you have a lumber pucture done to see what your opening pressure was?
Thank goodness you didnt have the shunt done.

I am coming from this  from a personal point of view.I have PTC.Diagnosed a year ago after first being  diagnosed with TA. After 8 mths treatment with large doses of steriods, THAT headache went and was replaced with the one I have now+ all the other symptoms. I had a VP shunt fitted in Dec 08, take Diomax, have tried lumber punctures and many other things all to no avail.
My shunt is working but it seems it cant keep up with the pressure.I still have an opening pressure of 35. I was to have a second VP shunt but now cant due to collapsed ventricel. I have been sent home for pain managment. I also have paps in both eyes with no inprovment since the shunt.
Quite honestly, you have scared the life out of me, but in a good way. I think I will do some reading and ahve some questions for my neuro.
I do hope you get to the bottom of all this mess and life can return to normal.Wishing you the best.cath278

[missyjnz]

well my name is melissa Jones and i have pseudo-tumor cerebri. I was on topamax and diamox but neither seem to work. My spinal pressure was way to high which caused me lots of problems and vision loss in my right eye. As of today I don't know what is going to happen.I have had 3 shunts put in. the 1st on was a medium pressure it worked for about a year. The 2nd one was a low pressure shunt and it worked 4 a couple of years. So now I have a programmable shunt but I lost my insurance so my neurosurgeon told me the can't help me anymore because i have a past due balance. Are you serious iI am going to go blind because I don't have money. I am very sick and need help. MMMMMM what to do any suggestions?????? No one will help me.........