You are definitely in my prayers. I hope you are able to find some relief. Your at a great hospital though. I was in Bethesda for my surgeries.
im 19 . im at hopkins every few weeks getting my shunt adjusted and working with drs it ***** but its the life we have right? well i hope things start to get better for u!
molly
Oh my gosh! How old are you? I am so sorry..... :(.
I am fairly sure things went well with my decompression. I still have pain in my head ( I don't really call it a headache anymore....just that my head hurts)
I have the neck pain and other smaller symptoms that sometimes worry me that the tonsils are pressing down again. I told myself not to be too paranoid. That if the pain gets so bad that I throw up, then I will go to the ER.
Where are you withtreatmentnow? How are you doing?
i dnt no if my story is on here or not but probably pieces of it r here and there but ya ive had four decompressions and two fusions and lots amd lots of shunts
Oh wow! Have you had decompression surgery? Do you have your story on here somewhere?
i have plates and rods and screws and a stimmulator um i dnt no but i get cts like ever 3 or 4 weeks
What metal do you have in your head? Isn't there a limit on the ct's you can get per year?
i have pins in needles all the time so i dnt no if diamox caused more or not but ya its awful im glad ur getting to taper! i cant have mris any more cause of my metal in my head but i have cts all the time but ya hydrocephalous ha is awful and sooo different from the chiari ha which is awful also just very different goodluck to u with the diamox!
molly
I was on it before decompression, to control my pressure, but ihave been on it for 4 months, since surgery, for papilledema. I am finally tapering! The metal taste is terrible. Did you get the pond and needles in your feet? My hands are very sensitive to stimulation ( like running water) and any kind of temperature change.
My pressures are stable, as far as I know. I have headaches nearly everyday, but nothing like the headache that comes from chronic hydrocephalus and a complicated chiari malformation. Next MRI is in Sept...
i dnt remember what my dosage was and mine wasnt for pappiledema it was just to try and lower my pressure but oh i hated it! it made everything taste gross!!!!!!!! and it made my stomach hurt i didnt like it one bit and it didnt help my pressures. i hope it helps u and doesnt cause u much problems!
molly