Hi Everyone

[Kisha2010]

Hi Everyone,

My name is Kisha and I am scheduled to see a NS tomorrow. I'm very nervous but relieved at the same time that I may actually be close to finding a solution to my problems. I was diagnosed with pseudotumor cerebri in 2003 after suffering from severe headaches for years. My neurologist prescribed 2000mg of diamox and performed lumbar punctures weekly for a month. My symptoms never subsided. I've continued to take diamox and started topamax about two years ago.

I started seeing a neuro-opthalmologist that discovered that I am loosing vision in my left eye. He recommended another spinal tap and MRI in June. The MRI in June showed a 9mm herniation that was picked up 'before' the lumbar puncture was performed. I was sent back to the hospital to have a MRI/CSF flow study. The results show a blockage and a now 11mm herniation which brings me to today and my upcoming appointment with the NS tomorrow. I'm not excited about someone taking a knife to the back of my neck but at the same time I think I would be more disappointed if he tells me that he can't help me or that we need to take the "wait and see approach".

I think I've suffered long enough. My husband complains about me walking into him when we walk side by side. I hate doing laundry because the bending is just too much! Of course, everyone else thinks it's just laziness. My back hurts from sun-up to sun-down. The list goes on... Anyway, thanks for listening and please wish me luck tomorrow!

[lu7997]

Kisha. Good luck and I hope u finally hear what u need to hear. And I hope u feel better soon.   Good lcuk and I will keep u in my prayer list that ur appointment goes well.



~~~Angela~~~

[LisaM46]

Welcome & good luck tomorrow Kisha!  I hope you get a great NS.  

Lisa

[Doodles_Mimi]

Kisha, try not to be scared, I know it's hard I have been in your situation. I was diagnosed with a brain tumor after years of being ill. When I finally found out what I was ill with, I was relieved and nervous both. I asked myself if I could handle living sick any more? I thought no, and realized the risk outweighed the illness. I was able to calm myself knowing relief could be just around the corner. I wish you luck and positive thoughts.

[selmaS]

Well...I am sending good wishes that this dr is the right one for u and he is able to offer u the help u need.

I am not familiar with drs at Duke....so once u get to know the drs there mayb u will want to add them to our list of chiari specialists?

Please keep us posted
"selma"

[Kisha2010]

Hi Selma,

I think that the Dr. that I am seeing is a chiari specialist. He's a pediatric doctor at Duke. He and Dr. Fuchs work closely together. I've read that LPs can cause us more harm than good. That's really sad to think that all this time, the one thing that I thought was helping may have been hurting (well, it does hurt, that's for sure!) but 'really' hurting!

I've been reading these boards for a while and I've seen some horror stories as well as some stories that offer hope. I just hope he's compassionate and patient. I have plenty of questions!

[selmaS]

Welcome to the Chiari forum.

LP's can increase the size of a chiari herniation especially if the technician is unaware of the chiari and draws the fluid too quickly.

Chiarians r told to try and avoid having a LP unless it is absolutely necessary and they tech is aware of the chiari dx.

I wish u luck tomorrow, but be advised unless this is a true chiari specialist, u may leave disappointed.....

Be sure to ask how may chiari surgeries this dr does/has done.

Much of ur story  is familiar...which is sad...too many chiarians are misdx'd and given meds to try to cover over the pain instead of looking to see what is causing it....and lastly...drs that have no idea how to or when to treat chiari and choose to treat something else, that is not the main issue.....

I pray this dr can offer u help...and ifi ti is surgery...get a second opinion and go with the dr u feel most comfortable with.And know we r here to support u and guide u with our experiences.

Glad to welcome u to our little family here...sorry for the reason s u had to seek us out.

"selma"