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...

Thursday, May 29, 2008

This is the incision 2 weeks postop....from Tethered Cord Surgery.... it is on my lower back...it was the day after I had the stitches removed. Iam now 3 weeks postop.. my back feels pretty good. It is still in a constant spasm.. but I can move around alot better.
I recieved a phone call yesterday from the medical secretary at The Chiari Institute. She called to inform me that the neurosurgeons (Dr Bolognese, Dr Roonprapunt, and Dr Milhorat) reviewed the EMG (Electromyography) that I had done a week after my surgery... and the cervical mri that I had done at my preop appointment. I hadn't had a cervical mri since July 2007. The doctors decided that I need to have a Anterior Cervical Diskectomy Fusion for 2 herniated discs in my neck.. C5-C7... this is where the neurosurgeon makes an incision in the front of my neck.. either removes the herniated disk or parts of it.. and then fuses the vertibrae together with hardware.
I will then have to go back for the Cranial Cervical Fusion with decompression at a later date. I ask the nurse when I will be brought back..she informed me that it will be up to the doctors... I will have to discuss the details with Dr Roonprapunt at my preop appointment next Wednesday.
So Iam pretty bummed out over all this...ANOTHER surgery!!! GGGGGHHHHhhhhhrrrr...
To top all this off..my shoulder has been killing me....Ive been doing more...moving around better.. so my shoulder is acting up again... my primary doctor told me last week that we would try a new anti inflammatory after the next surgery. Who knows when thats going to be!! I haven't taken it since April..I had to stop taking it because of the surgery. Im going to have to go ahead with surgery on my shoulder later this year..
Well Im hoping to have some good news to write about in the near future...

Wednesday, May 14, 2008

I Made It..round 1

Well I survived tethered cord surgery...Im now 6 days postop..feeling pretty good.. I had Invasive Cervical Traction (ICT) done on May 7 and Sectioning of the Terminale Filum (STF) the next morning.

I was very nervous about the ICT. You are brought into the operating room and all of your personal information is verified. The procedure is discussed in detail. You are sedated just long enough to be put into traction. When you wake up, they have you sitting up with a halo device attached to your head by 2 pins that are secured above your ears. I just felt presssure, no pain from the pins. At that point the doctors start to add weight to see how you respond. It took almost 60 lbs for me to feel almost symptom free. Xrays are taken with every weight increase. Then everything is removed and you are sent to recovery. Its amazing how your neck looks on the xray after the weight is added. So I test confirmed Dr Roonprapunts diagnose of cranial instability. I also had 1 staple from where one of the pins were used, it wouldn't stop bleeding.

I was sore from the ICT and had an instant headache, but overall I felt pretty good.

I went in the next morning for STF surgery at 7:30am. I woke up in recovery, feeling really groggy. My husband was allowed to come in a little while later. I was moved into my room about 3:30. I had some double vision at first and my mouth was numb. But I actually felt pretty good. I rested off and on for the next 24 hours...I was able to drink when laying on my side.. by noon the next day I was starting to sit up. I was up and walking by 3 in the afternoon. Moving around actually felt good. I had a headache on Saturday and into Sunday, but not too bad. Sunday I started experiencing dizziness, so I was put back on antivert. I had taken this in the past for dizziness. I was discharged from the hospital on monday.
While I was waiting for my husband to get to the hospital, a friend I had met at The Chiari Institute in October, came in to visit me. She had tethered cord surgery on Tuesday May 13th. She was there for preop. I was so happy to see her. Her surgery went well and she is now recovering.
I feel better everyday.. I have an appointment tomorrow for the dexa scan and Saturday for the emg..Dr Roonprapunt said he will call as soon as he gets the results..So for now..it's one day at a time...

Chiari Interview