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...

Friday, June 20, 2008

2 Week follow up at TCI




I went yesterday for a wound check at The Chiari Institute... I was supposed to see the nurse practitioner.... But I was there so long that Dr Roonprapunt showed up at the office. He said he would see me. I was relieved to be able to meet with him. I had some questions and concerns. The incisions look great... healing very nicely. Im having alot of neck/shoulder/upper back pain. It covers my entire upper body. It started 3 days after surgery and has progressively gotten worse. I also still have numbness in both arms. Dr Roonprapunt told me that Iam still only 2 weeks postop.. to give it more time. I start physical therapy next week..for my neck and lower back. He explained that when they ( the neurosurgeons at TCI) evaluated my case with the new tests I had done... they were hoping that having the ACDF (Anterior Cervical Discectomy Fusion) would be enough to alleviate my symptoms...even though the ICT (Invasive Cervical Traction) I had done showed positive results. Either way... I had to have this done...even if I have to have the CCF (Cranial Cervical Fusion) done in the future. I go back to TCI the end of August... and I will have some new pictures taken...xrays ect... If Iam still having symptoms and the bone has fused... we will move forward with the CCF. Iam still having dizziness and blurry vision... along with pressure in my head and a couple major headaches since my Tethered Cord surgery. I told Dr Roonprapunt that I feel that Iam going to have to have the CCF.
I also saw my orthopedist for my right shoulder this week. I had a cordisone shot the week before my tethered cord surgery. It didn't do anything. So this week my dr informed me that Iam not a straight forward case and that the pain could be coming from somewhere else. I was a bit annoyed by this response. Like I had no idea!! So he decides that the pain could be coming from the little joint that connects the collar bone to the shoulder...so this is where I got my next cordisone shot. I asked him what about the MRI results?? He told my that it wasn't bad enough to cause this kind of pain. Like I haven't heard that before!!
Anyway... it's the waiting game..once again...

Saturday, June 7, 2008

ACDF.... the aftermath...


Well...Im 2 days postop and Im home... I feel pretty good overall....my neck,back and shoulder are sore...and my throat hurts...but the incision feels good...I can move my head from side to side and up and down... better than I thought I was going to be able to move it...

Dr Roonprapunt..my NS... wants me to do PT for 3 months..( for the TC surgery and ACDF)...and then come back for an evaluation... he doesn't even want me to do anything with my shoulder until after the 3 months is up.... Im hoping that the new ani inflammatory that my primary is giving me...will work...

Im not sure if Cranial Cervical Fusion is going to be in the future for me...I will just have to wait and see...

As far as the anterior cervical discectomy fusion goes...my arm still hurts and Ive still had numbness.... only time will tell...

Wednesday, June 4, 2008

Round 2...Anterior Cervical Discectomy Fusion

Ding Ding...Im off to the hospital tomorrow at 3:30am...I have about a 2 hour ride to North Shore Hospital in Long Island..
I went today for preop registration, 3 new mri's (cervical, Lumbar and brain), and to have my postop/preop checkup with Dr Roonprapunt at TCI..needless to say it has been a very long day.... I will be having ACDF from C4-C6..they will be removing the 2 discs between these vertebrae and then replacing them with a Plug that is made from cadaver bone..the 3 vertebrae (C4,C5,C6) are then fused together with a metal plate and screws..to hold everything in place while the Plugs fuse with my bone...
The incision is made on the right side of the esophagus vertically. ..the surgery will take about 4 1/2 hours... I wont have to be flat on my back for 24 hours either..because they dont enter the dura( the casing in which your spinal cord and cerebral spinal fluid are contained)...so I was happy to hear that..he said I will be allowed to get up as soon as I feel like it..
I found out that I will only be in the hospital for 2-3days(maybe 4)... I will be really happy if I get to come home on Sunday...
I will more than likely have a soft collar to wear only as needed...not the aspen (which I already have, but hurts my shoulder muscle, very restrictive)...

I have to go back in 2 weeks to have the incision checked and be examined... Dr Roonprapunt wants to wait 3 months for everything to heal...before we make any decisions for any further surgeries...

So we shall see...

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