Pseudotumor cerebri

[CGTMHI]

I'm 28 years old and I have pseudotumor cerebri, I have had this for 4 years and now I need to have surgery to have my female parts taken out and my insurance company wont pay for it until they get a letter from my neurologist stating that I can't go on birth control. I have lost a lot of vision and my headaches are getting worse everyday, I have had a lot of spinal taps and I have them lol.   Is there any other kind of meds that will help me other then diomox ( I hope I spelled that right)   I just want to feel normal again. The headaches are bad and I cant take them anymore.  The worst ones are when I get my periods.  Can u please tell me what I can do???  

Thank You so much!

[parizi]

Sorry for your headache and visual disturbance, lumboperitoneal shunt may be effective for your headache and elevated ICP symptoms .you consult with your neurosurgeon about this procedure.

[CCF-Neuro-M.D.-JT]

There are certainly options other than diamox. Weight loss is a major player in symptomatic and overall relief.  Steroids in pulse doses have helped some people, but this can cause weight gain, exacerbating the problem.  Other diuretics (meds that make you urinate) can also be tried.  If vision is becoming a significant problem, they may need to make little splits in the optic nerve sheath so fluid can escape. Finally, for those who are refractory to meds, a shunt placed by a neurosurgeon that drains fluid from the CSF spaces in the brain into the gut fluid can be helpful. Talk to your docs about these options.  You may be a candidate for the shunt procedure, epsecially if you've required multiple taps.  Best of luck.