Well over the last few days, I have been in touch with a Chiari Survivor/patient, named Leslie Witty. She had surgery at the Chiari Institute. What a great and strong women. She has offered to assist me in finding somewhere to go and for assistance in my own struggles. Each place I call says they do not take my insurance. I do not qualify for Medicare until 11/09, so until then I have been placed on State Medicaid for my health insurance.
I was able to get in touch with the Mayo Clinic in AZ. Although they will not except my out of State Medicaid, they do have a Charity Fund. I applied today and am sending in my application. I pray that this will work for me, and that they will see me and assist me in a cure.
No one but others in my same situation can understand the pain involed in these diseases.
I won't give up!
I was able to get in touch with the Mayo Clinic in AZ. Although they will not except my out of State Medicaid, they do have a Charity Fund. I applied today and am sending in my application. I pray that this will work for me, and that they will see me and assist me in a cure.
No one but others in my same situation can understand the pain involed in these diseases.
I won't give up!
Edited: Well I was asked to send my MRI report to the Mayo Clinic, they took my info, and will be sending it to the Neurosurgery Dept. to review. This is a start. Although like my blog buddy, Leslie Witty, MRI and CT's all were being reported as normal by radiologist with a few small exceptions, of sinus disease on my last one. Yet I was looking through my records from my Neurologist, and see that she notes that " The Patient soes have slightly congested foramen magna, but the tonsils are truly not herniated to the 5mm criteria for Chiari malformation. She does not meet this criteria." Yet evrything that I am reading states otherwise, as you now no longer need to be 5mm. She says I am about 3mm or so.
See this pic from my recent MRI in Oct 2007.
4 comments:
Hi ~ I am also a Chiarian and a blog buddie of Iswitty ~ Sounds like you have had a really rough road in life ~ I am scheduled for 2 surgeries at TCI on 2/1/08 and 3/7/08 ~ Keep up you fight in trying to get there. They are a wonderful group of kindhearted people. Check out my blog for my journey and hopefully you will find hope, peace and a bit of humor there. Hugs to you ~ Lace
http://livelovelaugh-lace1013.blogspot.com/
Glad to meet you Lace! I wish you the best of luck with your surgeries. Thanks for directing me towards your blog. I have no plans on giving up yet, but there are definately days when I am sitting here crying when giving up crosses my mind. But all I do is remember that despite that I feel that I am hurting and affecting my family so much with this illness, that they are why I keep fighting. God Bless You and hugs back to you.
Leslie
I wanted to share some information with you as we have much in common. I have Chiari (4.4mm) and Pseudotumor.I had decompression surgery at The Chiari Institute in June. I began feeling a bit better after a few months but was back to square one by 4 months post-op. TCI is wonderful but patients who don't respond to surgery are those with Pseudotumor and I wasn't diagnosed until after surgery. I would not have done it had I known. In a study where they placed shunts in chiari patients who had "failed" decompression surgery they failed to respond symptomatically to shunts as well. It's discouraging, but weight loss will absolve Pseudotumor, also optic nerve sheath decompression will salvage vision, much better than meds or shunts.I also went to The Moran Eye Center but I live in Utah! Good Luck, never stop researching, nothing is more empowering than knowledge!
Y-Lime
I wanted to share some information with you as we have much in common. I have Chiari (4.4mm) and Pseudotumor.I had decompression surgery at The Chiari Institute in June. I began feeling a bit better after a few months but was back to square one by 4 months post-op. TCI is wonderful but patients who don't respond to surgery are those with Pseudotumor and I wasn't diagnosed until after surgery. I would not have done it had I known. In a study where they placed shunts in chiari patients who had "failed" decompression surgery they failed to respond symptomatically to shunts as well. It's discouraging, but weight loss will absolve Pseudotumor, also optic nerve sheath decompression will salvage vision, much better than meds or shunts.I also went to The Moran Eye Center but I live in Utah! Good Luck, never stop researching, nothing is more empowering!
Em
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