Monday, March 22, 2010

Revolutionary Decompression for Chiarians!

Hello all! My name is Lori and I am a fellow Chiarian. I am the mother of two girls, ages 15 and 9. Ten years ago a man picked me up and threw me to the ground. The back of my head bounced and I believe that is when I acquired Chiari. The idea that it can be acquired is relatively new, but it is the only explanation I accept. I was normal before the incident and most definitely not normal after.

Mine started with visual distortions and excruciating headaches. Then came the anger issues and balance problems. I thought I was loosing my mind, mostly because doctors were telling me I was loosing my mind. They kept trying to medicate me with anti-depressants. Somewhere inside, I refused to believe I was mentally ill. I wasn't making this up! So, I researched all conditions that had similar symptoms. I narrowed it down to Chiari or MS. MRIs showed no lesions so it wasn't MS, but they also didn't show Chiari. Then I found an internet article on Chiari 0 which is very controversial. It made sense to me so I looked up the doc behind it and it was Dr. Dan Heffez. He was in Wisconsin, which isn't horribly far from me, so I called and set up an appt. Dr. Heffez ran MRIs I had never seen before. My old MRIs were tiny pictures of my whole head. Dr. Heffez's pics were close ups of the foramen magnum from all sorts of angles. They showed I had a 4mm herniation. The standard for Chiari is 5mm, so according to most experts I did not have Chiari. Dr. Heffez recommended surgery based off of the MRIs and neurological tests he performed in office. I knew I didn't want to be a zipperhead! It freaked me out to get my entire head slashed open -- all those staples, all that pain!! No thanks. So, I researched some more and found a blog about Dr. Di and this teacher in TX who had endoscopic decompression at the Cleveland Clinic. I made an appt, met Dr. Di, and scheduled my surgery. I had surgery, staid in the hospital for 24 hours, never went to ICU, my and then went home. My dura was scored, never completely opened, so there was no need for a cadaver or cow membrane. I have about a 2" indent under the hairline to show for it. I am almost completely back to normal now.

I tell people that I spent ten years on a couch so forgive the lack of social graces :) I do not seem to have the issues affecting those who had the traditional surgery. I am so happy to be free of chronic pain!! I am currently running a supplement trial on myself. This supplement was introduced to me by a friend who found it while researching how to help his mother with MS. It is revolutionary and brand spanking new. I am so excited by it. You can follow my progress on the supplement at mychiaribooboo.blogspot.com. I will try to keep this blog updated as well. I want to thank Q for allowing me to join and become apart of this wonderful community blog.

Love to all,
Lori

4 comments:

Queli said...

Lori,
Thanks for sharing your experience with us. I just heard about this surgery recently (I keep up with my hospital's stuff and saw an article on it). Shocked to hear we have endoscopic brain surgery now. Crazy, awesome stuff!!!!!
I am so glad to hear you are doing well. Mind if I post your blog on my personal website as well? I have an alternative therapies section.
Q

Lori said...

Absolutely, girl!! Post away! I want to get the word out that being a zipperhead is not a right-of-passage for Chiarians. No one ever has to know we have Chiari unless we tell them. No more lingering side effects from having our heads split open!! How exciting for the Chiarian community!

Now, there is this new revolutionary supplement that may change our bodies all together; helping us with the residual damage that Chiari leaves behind and that surgery does not fix! I have had peripheral neuropathy for a few years now in my left foot. So horrible at times that it is hard to sleep. I can always feel my foot -- ALWAYS!! Now, after two weeks on the supplement, I noticed that I couldn't feel that annoying tingling feeling in my foot unless I really concentrated! Crazy! I am adding a link to the supplement on my blog so that others can feel the same benefit I am feeling. This supplement did for me what the neurologist at the Cleveland Clinic could not; it gave me relief from my neuropathy! It is a bold new world for our kind :)

Trish said...

Lori,

I just found this post and found it very interesting. I was wondering if you had more information!! I was diagnosed with chiari and retroflexed odontoid and all that jazz at the Chiari Institute, but like you mine is only 3mm, and because no other radiologist has ever mentioned it or even considers it a possibility my neurologist will not acknowledge it. I don' tknow what to do. I can't afford to go to NY again, and keep going there until I am well, no way.... I saw that you mentioned Dr. Di and some dr's in Texas?? I am in Texas and it would be much easier to be closer. Can you tell me more about this? Thanks so much! And thanks for sharing your story!
Trish

Lori said...

Hi Trish! I guess I haven't been keeping up on this blog very well. I apologize for the delay. I don't know of any docs in Texas. Sorry :( Dr. Di is amazing and I highly recommend endoscopic decompression if applicable. Any decent doc would treat you if you are having symptoms. Unfortunately, there are not many descent docs. Most are text book sheep! I have another blog called mychiaribooboo.blogspot.com which elaborates on the endoscopic decompression.

Good luck to you Trish! If you have any more questions, feel free to write me :)

Much love,
Lori