About Me

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Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

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Me Brain

Story continued..


..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Tuesday, July 8, 2008

2 Surgeries later and more Physical Therapy...

It seems like it's been forever since Ive posted... Not alot happening... Im still experiencing symptoms... I don't have as much numbness in my arms.. I still have all the classic symptoms for Chiari... pressure, headaches, dizziness, blurry vision, ect. Iam also still having severe neck/ shoulder pain. All the usual aches and pains.

I started physical therapy a couple of weeks ago. The therapist that I found is great. We are still trying to find some exercises that don't aggravate my neck. The smallest movements can set everything off. I enjoy the massage more than anything.

I did recently find out that one of my doctors at TCI ( The Chiari Institute) is leaving.. Dr Roonprapunt. He said he lives in Manhatten and the commute is affecting his family life. Needless to say.. Iam sad to see him go. He wont be their when I go for my followup in August.

I have an appointment August 28th at TCI for my postop check. I will have some xrays done to check the fusion in my neck and see if my symptoms have changed. If my symptoms are the same and the fusion has healed..then I will have the CCF (Craniocervical Fusion) with duraplasty done.. If my symptoms have improved... then all is well.

I still feel that Iam going to need the CCF to help releive the symptoms. But at the same time.. Iam a little nervous about going through all this and not seeing improvement. The surgeries that Ive already had done..went well. I feel like Iam pushing my luck with having more done.

My right shoulder is still bohering me.. Ive now had 2 cortisone shots and they aren't helping. My pain management doctor and my physical therapist have both informed me that Im going to have to go through with surgery to correct the laberal tear in my shoulder. GGGHHHhhhhhrr!

Iam still having difficulty sleeping..so once again..my sleeping perscription was changed. My pain management doctor also changed my pain medication to Dilaudid. So hopefully the new meds will help get through the next few weeks until I go back to TCI for my follow up.

Iam enjoying the nice weather..when it's not raining... I was finally allowed to get into the pool and hot tub. I haven't been very active on ASAP (American Syringomyelia Alliance Project)... I read alot of posts but haven't really been involved. Im kind of bummed about all this.. I wanted to get everything over with and work on getting better. I didn't want to be having surgery in the fall on top of the holidays. At this point I don't think I have control over that...

Chiari Interview