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Pseudotumor cerebri question
An_243880 posted:
My daughter was diagnosed with PTC 11 years ago. She's now 22. After each flare-up she loses more vision. She'a now legally blind. She's on diamox and topamax., however the flare-ups keep occuring. Do you know of any new treatments on the horizon for PTC? She is of normal weight, by-the-way and always was so that's not the issue. She's been through multiple lumbar punctures and also had a shunt implanted. She had so much trouble with the shunt we elected to have it removed. There is so little information on PTC that it's hard to know how to follow her care. Any information?
Alan M Kozarsky, MD responded:
I am sorry that your daughter is having such major problems.

Pseudotumor cerebri is an uncommon condition which as an eye surgeon, I am not called upon to treat. There is a good review of present knowledge at:

Looking at the treatment section of this article it looks like your daughter has been through most of the modalities. However, the final treatment section involves weight loss for very overweight individuals and even discusses bariatric ( eg. gastric bypass) surgery to achieve this when all other measures have not worked. While many people with PCI are substantially overweight, I don't know whether this is a consideration for your daughter.

Finally, I would recommend adhering to the recommendations of a treatment team that is highly experienced with this condition. The team would include a neuro-ophthalmologist, neurologist, and neurosurgeon.
An_243880 replied to Alan M Kozarsky, MD's response:
Thank you for your response. Actually, my daughter has always been of normal weight. That is what made diagnosis so tricky. The opthomologists we saw never suspected PCT because she was 11 and she was normal weight. Diagnosis time cost her a lot of vision but it was no ones fault. Rare illness happen. Physicians can't be expected to be looking under every rare rock for a diagnosis. I'll check out your link.
LuLu1586 replied to An_243880's response:
Hi There,
I know this is a pretty old post, but I thought I would reply on the off chance your daughter is still experiencing difficulties with her PTC.
I was DX'd with PTC at 22 and am 37 now. I have gone in and out of remission over the years.
About 5 years ago, I suddenly lost about 80% of my vision in 1 week. My Neuro-Opthamologist gave me a choice between a shunt or a procedure called Optic Nerve Decompression (sometimes known as Fenestration too) Surgery.
I chose the Optic Nerve Surgery knowing how notorious shunts were for getting kinks and needing revisions.
The surgery was easy, restored my vision immediately, and now I only take Topamax for residual headaches.
Let me also say that I also used to have serial spinal taps, but I now refuse spinals. There are special sonograms with small wands that can check the fluid behind your daughters eyes-feels weird, but not painful. If your daughter ABSOLUTELY must have another spinal insist she have the procedure done with Fluroscopy and performed by a nuclear radiologist. Too many spinal taps can put a person at risk for a condition called Chiari Malformation.
As for where to go for treatment...I don't know where you live, or if you are willing to travel, but here are where some of the experts are:
Dr Katz in Ohio-Book an eval appt. with him. He practices and researches.
Optic Nerve Decompression Surgery- Be very careful in choosing a Neuro Surgeon. I recommend my Dr- Dr. McHenry at UTSW in Dallas TX. He is well known for perfecting the technique and people from all over the country travel to him for this procedure.
Check out for the latest research-not much going on here in the US (lose weight, lose weight,blah, blah blah) But lots of new studies in Sweeden.
And finally,
For moral support for you and your daughter Try DailyStrength,org They have a support group for people with PTC and it is awesome to to talk to others with the same disease and get info, share tips, etc...
My best to you and your daughter,
LuLu1586 replied to LuLu1586's response:
Sorry for the very long post...just one last thing
Over time I became intolerant of Diamox. I don't know if your daughter has had any problems with dehydration or maintaining electrolyte balance. If she has, talk to her Dr about a medicine called Lasix with a Potassium supplement.
Most opthamologists will not prescribe this, but a Neuro-optho will. It is a diuretic, just like Diamox, but is less harsh and a good alternative if long term use of Diamox starts to wear on your daughter.
Hope some of this helps...

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