About Me

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

Me Brain

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...

Saturday, April 26, 2008

Surgery Date is Closing in

The count down is closing in...I spoke to Dr Roonprapunt this week...Im having tethered Cord surgery on May 8th...and then Cranial Cervical Fusion on June 2nd...he told me that I need the CCF to relieve my symptoms....but my neurodynamics test came back positive for a neurogenic bladder...due to the tethered cord syndrome...so it is up to me to decide which surgery I wanted done first...I was glad to hear that Dr Bolognese is the other neurosurgeon that will be in the operating room with me...
My primary Dr called with the results of my mri on my shoulder...I have torn cartilage, a torn tendon and torn muscle...and it shows inflamation... so Im probably going to need surgery on my shoulder...I have an appointment Monday morning with the orthopedist....ghhhhhrrrrrrrrr
I went and got my hair chopped off the other day...it looks cute...I figure it will be easier to take care of...Ive been pretty lazy with it anyway..I always had it in a ponytail...my shoulder hurt too bad to dry it...not to mention it is still falling out...
I went to the Social Security Disability dr last week...it was not a fun experience...thier not there to treat you..so its a completely different environment...so now it's the waiting game...
So much has changed in the last year...its hard to digest...the realization of how much my life has become consumed by all of this... becomes clearer everyday...my attitude..goals...ideals... outlook on everything....my family has been affected... as anyone with life long health issues would relate to...
Im so worried that my children wont want to have kids of their own because of the possibilities..
I had to make a conscious effort not to think that far ahead...
God only gives us enough strength to deal with one day at a time...and thats what Im going to do...

Saturday, April 12, 2008

More Tests

Long day....we went to Baltimore on Friday to see my genetist..Dr Francomano.. for Ehlers-Danlos syndrome.. all four of my children have it... so each of them have to have an echocardiogram..my oldest son..Chris..has to have a bone density scan..(he has had many broken bones)..and two of my children (Nick and Tori) have flat feet... so they have to see a podiatrist... Dr Francomano is concerned about Tori..she wants her evaluated by The Chiari Institute..she feels its possible she has Chiari and cranial settling... she is going to forward a letter to TCI..so Im going to try and schedule her appointment with my follow up after surgery..
I finally was able to get in for the mri on my right shoulder...it's still bothering me...so hopefully I get the results on monday..my bloodwork for the liver testing came back normal..
I met my new urologist on thursday..my old one retired..Im having a urodynamics test done on tuesday...
I also have an appointment with the Social Security Disability doctor on wednesday this week..
Its going to be a busy week...I have bad headache today..it's the countdown to surgery.. I have so many things to get done..Im waiting until tuesday to find out which surgery Im having..and then Im contacting my insurance company about skilled nursing...I dont have any family around here...my sister and aunt are both dealing with thier own health issues... and my husband is self employed..so we cant afford to have him home everyday with me after surgery..
Its been hard for me to even believe how much this has consumed my life...Im determined to get some normalcy back in my life....what ever it may entail...
My husband has been so supportive...I dont know what I would do without him...Im very blessed to have him in my life...my children have been very helpful...Im very lucky to have a family that loves me so much...

Friday, April 4, 2008

Surgery Scheduled..5/7

Well I went to TCI on thursday...Im so happy...we are moving forward with surgery..May 7 Im having Invasive Cervical Traction and the next day Im having surgery..either Cranial Cervical Fusion (with decompression) or SFT ( detethering)..Im having a urodynamic testing next week..to see if I have neurological defects in my bladder function from the tethered cord.. Ive lost the sensation of having to pee..so if I fail the urodynamic test..I will have the detethering first and then the CCF a month later...Dr Roonprapunt is my neurosurgeon at TCI..he is such a nice doctor...very thorough...I spoke to Dr Francomano thursday morning..she wants to follow up on my enlarged inferior vena cava artery..so I went in today to have bloodwork drawn for liver function testing..(to test for Budd-Chiari)...she said she also wants to do further testing to check for other possible enlargements in my venous system..My sleep study is rescheduled for monday April 7...and Im still waiting to get my mri on my shoulder..Ive been feeling dizzy everyday..Dr Roonprapunt wrote me another perscription for the dizziness..so I'll see how it works tomorrow..

Thursday, April 3, 2008

April 3rd...TCI appointment

Well it's finally here..my appointment with the neurosurgeon...Dr Roonprapunt...I will find out today..when we can take the next step...Invasive Cervical Traction...I will also find out if we are only doing the fusion surgery at this point... Im a little worried about being cleared for surgery...my cardiologist called yesterday...finally...and the MRA showed that my entire inferior vena cava is enlarged...twice the size that it should be...but he is telling me that it may just be my anatomy... but in his report he states that it may be caused by Budd-Chiari... a rare disorder of the venous liver system...which by the way can be caused by a connective tissue disease....that I just so happen to have...Well Hello...dont cha think we should do some testing to check??? he says that because my leggs aren't swollen..that he doesn't think I have it....THINK????....Ive about had it with doctors....I have to go for an mri of my shoulder now...Im having alot of pain in my right shoulder...my pcp thinks I may have bursitis...that will go well with the costochondritus...and the dr told me that my right knee is swollen..but my orthopedic said that my knee cap is just flexable and irritating the knee...its just the Ehlers-Danlos syndrome...JUST....and to top off my week..I went for my sleep study..April 1st... all packed, husband drove me, daughter crying as I left...I get there and they tell my that they dont take Oxford insurance..that my appointment was canceled last week...well then why did you CALL oxford and get the approval??? what a week...so I had to call my insurance to find someplace to have it done...TCI wants a copy of the report...on the bright side of all this...Its Sunny outside....

Chiari Interview