5 years post surgery will you help?

[confusion07]

It has been 5 years since my Chiari decompression surgery. In some issues there was great relief (vision, ringing in ears, passing out randomly, electric shock in my neck and a form of seizures) and others not so much ( dizziness and headaches). However, about 2 years after the surgery things really started to take a turn for the worse. I started having issues with speech (mixing words together and making them one word) my memory ( forgetting little things like turning off the water when I washed my hands) my neck became less turnable(?) My hands and feet were not communicating with my brain resulting in dropping things and tripping over air. Now 5 years later and you wouldn't be able to tell I have a college degree. I CANNOT complete sentences with my thoughts without my husband's help. (I say it's lost in translation because I know what I want to say but can't) I am SO easily distracted that it's hard for me to compete tasks. Mixing words has become a game with my family like LINGO (it really hurts me) I started having more intense ringing ears, I have intense electrical shock feeling that now goes from my neck to forehead and down my spine, I started having seizures again, I have no balance and passing out is a normal part of my life again. I can't read for very long because my vision blurs, my shoulders, neck, and back cause me pain daily. I sleep 3-4 hours a night because I have so much pain. We only have a few Chiari specialist in Michigan so getting an appointment is a pain... It has taken me 6 months to see him. Now I had an MRI (just a regular one) because I have complained constantly and it showed my Chiari was back ( tonsils had dropped and are again blocking the spinal cord). My neurologist asked to have CSF flow study done which showed an area that was narrowed cause the fluid to back up. I went to see him today and...... He said because there was no success with the first surgery there was nothing he could do. SOlomon what about the blockage and most importantly WHAT ABOUT ME! My questions are ( his office is the only ones I know of and can find) where do I go from here? Does anyone know of Chiari specialist in Michigan not at the U of M? Does anyone else suffer with these issues or am I the only canoe in a lake of kayaks?

[lasel22]

I did not meet this neurosurgeon in person but I did contact her office and had her review my images, she is in Michigan.

Her name is Holly Gilmer from Michigan Head and Spine Institute.  She is also affiliated with Beaumont Hospital.

After months of getting nowhere with neurosurgeons and neurologists I reached out to her office and another specialist.  I eventually had surgery with the other doctor since he was closer to my home.  I spoke to her nurses who were very knowledgeable regarding chiari and they realized how symptomatic I was and told me send my images to them along with a letter of my symptoms.  There was a fee for reviewing my MRIs and the letter of symptoms I sent her.  She wrote me back with her opinion and a suggestion to come see her or another specialist.

[gjjl]

Welcome!! So sorry you're having such pain and awful debilitating symptoms. I wish I could offer you some insight but I am totally new to Chiari. I was diagnosed in November 2015 and I had such a bad sphinx that my surgery was December 2015. I am actually a little over 2 weeks out from surgery. I was having some major nerve damage and had to act quickly. I can say that Selma is the best when it comes to information!!!! I will add you to my prayers and thoughts!! Sorry I can't offer much more than that due to my lack of knowledge ~Ginger

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of Drs and it is here for you to use to research Drs as it is not a referral nor an endorsement......

Next I must say, ,Chiari does not go away bcuz you had surgery...most of us continue to have some type of herniation....surgery is done to restore CSF flow....and can be obstructed again due to scar tissue, or if not enuff room was made to begin with.

Most Drs will shave off some bone to help make room and then use a dura patch again to help gain room....sometimes the tonsils will be cauterized while others may leave them in place...and then not as often they may be removed all together.

Here is out list....please send me a PM (private message) to let me know if your Dr is on our list.


MICHIGAN

Dr Lynn Hedeman
Great Lakes Neurosurgical Assoc.
414 Plymouth NE
Grand Rapids, MI 49505
[phone]

Dr. Karin Muraszko
C.S. Motts Childrens Hospital
University of Michigan
Ann Arbor, Michigan

DR Richard Veyna
Head and Spine Institue of MI
West Bloomfield, MI