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, February 19, 2008

I haven't been on in a while..haven't been feeling that great. I know that a few of you have emailed me..Im sorry I havent responded and want to say Thank You for your support. Ive been kind of distant lately. Not really myself. I had another echocardiogram done today..Im waiting for the doctor to call with the results. Ive come to the determination that surgery may be inevitable. I believe that these episodes ( heart palpitations) have to do with CM and the cranial instability. I found a case study that says TCI found that only 22% of their patients had this as a symptom and out of the 22% majority of them had cranial instability. I recieved a phone call from TCI today. They informed me that my daughter doesnt have Chiari or TCS. Great news!!! I scheduled a follow up for myself..April 3rd..Im going to see if they feel all these new symptoms have to do with the cranial instability. If thats what it is..Im going to start the process for surgery. I know that I would have to have invasive cervical traction. Thats where they put you in traction and add weights until you feel relief from your symptoms. Then they take measurements to use for surgery. Ive also found a lawyer in PA for federal workman compensation. I figure I will hear something in the next month or so about SSDI. Feeling very depressed lately...it just feels like I cant win..I had a headache last week that was so bad...I couldnt even cry..you know if you cry..its just going to be worse...Ive been reading everyone's updates on thier blogs and checking ASAP...I just dont have the energy or mental focus to do much posting...I do want to let everyone know that you are in my thougts and prayers... hope everyone has a is well...

Sunday, February 10, 2008

Wednesday 2/6...

Well my motto on wednesday didn't go so good...I went to my neurologist for my regular check up..explaining to him that I had went to my primary physician for chest pains a couple of weeks ago and he diagnosed me costodronitis..but I told him I was still having pains (in addition to shortness of breath and dizziness)and I had just finished my perscription of prednisone..well..my NL went into orbit because my pcp didn't do any tests..and he wanted me to go to the er..I didn't want to go..so he called my cardiologist while I was in the office..and sent me straight there..the cardiologist did an ekg and checked me out..everything was normal..and he wanted to know why the mra's that my genetic dr had ordered..hadn't been done yet.. I explained what had happened ( look at the blog below..about Dr Francomano's staff).. he wanted me to go to the er..I didnt want to go.. so he wanted an angio catscan done asap..and bloodwork to check my kidney function before the catscan..so I was at the hospital early the next morning for bloodwork..and had the catscan done at 10:30..all came back fine..so he ordered an echocardiogram and a stress echo to be done..( in the next couple of weeks).. and follow up with my regular cardiologist..Im still having these episodes..a couple a day..but I just try to breath through them and relax..Im doing some research on a link between Chiari, Syringomyelia or Ehlers-Danlos and heart palpitations..I have a feeling that this is whats happening...just one more reason in favor of surgery....

Wednesday, February 6, 2008


Today the weather outside is dreary and nasty..but today my motto is "There is more to life than just here and now"..I read this in a book this week..it puts things in a different perspective..right now I dont feel that great...but there is more to life than just how I feel right now.. as some people say "Iam sick and tired of being sick and tired"..So Im choosing (for right now anyway) to not be sick and tired..

Friday, February 1, 2008

Ehlers-Danlos results

Well its only 8am..I just recieved a phone call from Dr Francomano's office.. I do not have the vascular type of eds....WHEW....she said we will go over everything when I come in with my kids.. (April 11th)...she had said at my last appt..that if it came back negative we would probably go with classic/hypermobility..mostly classic due due the valvular regurgitation...Im wondering if she's going to want to do the skin graft..not to keen on having that done...ehw..anyway..at least it was good news before the weekend...

Chiari Interview