About Me

My photo
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...

Tuesday, August 26, 2008

Scheduled the CCF..

Well..I just recieved a phone call from TCI..Iam scheduled for Cranial Cervical Fusion w/Duraplasty September 30th. I have one month to get all my ducks in a row....

Tuesday, August 19, 2008


Can anyone relate to this massive..gigantic...immeasurable... feeling of frustration and disgust............................

I called TCI today to find out when they are scheduling surgery and if they had put in for my mri approvals. Only to find out that she is not sure when they are scheduling surgery...my appointment was made for 3 mri's and an xray 8/28 at 8am...and get this!!! Im supposed to see the neurologist next Thursday at TCI..not the neurosurgeon!!! I dont need a diagnoses!!!! I already know what is broken. I was supposed to be scheduled with a neurosurgeon. Like I want to travel over 2 hours away to meet with someone new..to tell me what I already know??? My medical secretary said she would have to call me back..because Dr Bolognese is booked until DECEMBER!!!!

I think optimism has packed his bags and left the country!!! Pessimistic is movin in!!! Its a good thing Im going to my Psychiatrist tomorrow. I think we need to up my dosage!

Maybe Im over reacting a tad..but this is starting to turn into a series instead of a bad dream. Its bad enough I was told I would have to wait 12 weeks..now I may have to wait 4 months!!! I dont know how Im going to do it.....

Friday, August 15, 2008

Click My Heels Together...

Well this summer hasn't been much better for me. Im still experiencing symptoms. The numbness/tingling has gotten better...but that is about it. We have had crazy weather this month...its taking its toll on me.

I was able to go to CT and meet with some great women who are Chiarians. That was great.I have found some people that live close to me. I met with one woman a couple of weeks ago..Erika..she is a sweetheart. It makes things so much easier..to know your not alone. And to be able to talk to someone..that knows exactly how you feel. Im hoping to get together with the local women next week.

Well..I go back to TCI in 2 weeks. Im so anxious..I cant stand it. I need to know what is going to take place and when. They have scheduled me for 3 mri's (brain,cervical,lumbar) and a cervical xray.

I did go back to the orthopedist for my shoulder. But I went to his partner..Dr Rashenbach. He was very informative. I really liked him. But he ordered more PT. What exactly thats supposed to do..Im not really sure. I cant do any upper body exercise now! But my physical therapist added isometrics for my shoulder. I go back next month. But he did tell me that if I have to have surgery..Iam not a candidate for asthroscopic surgery. I would have to have reconstuctive. Just ducky!

So now I need to know which one will be first.

About three weeks ago..I found a lump by my right ear. It is small but painful. I saw my pcp ....he ordered bloodwork and put me on antibiotics. I followed up with my ent the next week. He said if was still there in 2 weeks..come back and see him.Its been 2 weeks. I now have a lump under my left shoulder...and it hurts. Im going to my pcp this afternoon.

Iam so disgusted.... it seems like it never ends.

On top of it..my oldest son,Chris, has another hernia. He is going to need surgery. This is the second one in 3 years.

On a brighter note.. I did talk to the case worker who is handling my SSD case. She informed me that they sent their decision into the federal office...and it was approved!!!! Although she informed me that the Federal office has to agree. So Iam praying that it sticks. She said I should get something in the mail in the next week or so.

This would be so helpful. I can then move on to round 2...Federal Workmans Comp. A much bigger battle. I have bills pilling up..and more to come.

I have been following blogs and forums..but really havent been active. Its just so depressing. I know that its helpful for other people..but I dont want to bring them down. Im usually a very optimistic person. Lately all I can do is pray for renewed mercy and grace..strength..courage.. and patience....

Chiari Interview