Dr. Bermans J Iskandar UW Madison - Anyone?

[kricklekrin]

Has anyone had experience with Dr. Bermans Iskandar from UW Madison?  They have a Chiari Clinic there and I have looked him up online and he has a lot of experience.  Someone gave me his name and I've been putting off a second opinion and I'm about to go crazy with the pressure in my head and ears.  I stopped taking diamox, because I don't want to live on this medication and it causes other issues.  Trade one symptoms for the other, this is what I felt the diamox was doing.  I don't know, maybe I should have stayed on the diamox?????  My blood pressure was too low, I couldn't go to the bathroom (TMI), had to have CBC every month (costly) because increase risk of acidosis, did not mix well with seizure meds I'm on (zonegran), and I want to know why my ears and head feel like things are about to explode from inside out.  This must be bad for the brain...  I have not had an MRI since December of 09 and I'm due for one anyways.  So wish I could just heal all of us with this terrible thing they call Chiari :(  I pray we get a break today!

HUGS,
Kristel

[selmaS]

well as I have mentioned b4, I dislike the terms used to classify chiari as mild , borderline etc....when it does not reflect how it impacts us and to say u have mild chiari but have seizures to me is an oxy moron....u know???It just does not make sense to me.....

I would find another chiari specialist and get another opinion....JMHO

    "selma"

[kricklekrin]

I only started taking diamox this past December.  I'm not sure how I feel since I stopped taking it because I'm having a lot of issues with seizures and epileptic discharges.  I can't tell what symptoms comes from what problem anymore.  I really think that these consistent discharges I'm having and unable to control are because of the pressure in my head, but as a patient when you start telling a doctor your opinion you get cut off.  Everything online about intra-cranial pressure talks about seizures and epileptic discharges as a symptom.  I just started having these left temporal lobe spikes since being diagnosed with Chiari and now we can't get them under control, and I have a lot of pressure in my head and I have mild chiari I guess???  I had so much pressure last Dec that I could not hear and when I started taking the diamox two weeks later my ears suddenly unblocked and I began spitting out blood.  ENT said it's not ear related.  Chiari doctor said it's not Chiari related over the phone and with a year old MRI.  Very confused patient.  

I just don't know what to do at this point.  Seizures, or Chiari???

Kristel

[selmaS]

Hi...I know I have heard about this Dr and I know he has been a speaker at Chiari conferences.....he is well respected.....u would need to go and see how u like him...but he does have the experience u r looking for.

  I am confused...u were on Diamox since '09 and no MRI since then??? I do not understand this.....have ur symptoms changed at all during this time?

How r u feeling since u stopped the diamox?

   "selma"