My Operation 27 years ago

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My Operation 27 years ago

Postby Alicia Vega » Thu Mar 05, 2009 8:11 pm

Hi, I'm new at this so please bear with me. I was checking out your site and the name syringomylia rang a bell. 27 years ago after the birth of my third child (a boy) I was diagnosed with this enfermity. I had no clue what this was but the doctor explained that I had a hollow space in my spinal cord which was acumulating fluids that should not be in there and that was why I had symtoms of numbness and one of my hands was like deforming (like crows hands). He told me I should consider an operation that would insert a tube in the cavity and let the fluids out. I did not get a second opinion and consulted with my husband. We being christians, put ourselves in his hands and the hands of the Surgeon. He confided in us that this was the first time he would be doing this operation. But it was a go. After the operation, which he termed successful, slowly I recovered, I quit my job and went back to my other job as a mother and housewife. I have lived a relatively normal life although I still have numbness in one of my hands (the affected one) and not much strength. I also have a constant pain on the back of the shoulder of the affected hand. I don't know if this is due to the operation or the damage already done. I don't know if I can consider getting Social Security for this ailment. If anyone can help me out here, I would appreciate it. Glad to come aboard! Bless you all.
Alicia Vega
 
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Re: My Operation 27 years ago

Postby Janice » Fri Mar 06, 2009 9:44 pm

Hi Alicia and Welcome! :)

Thank you for sharing your success story with us. That's a very long time to have a shunt placement with very few remaining symptoms. It sounds like you've had no problems with the shunt during this time, which is a success by itself.

You just might be approved for SSDI. The only sure no, is not to try at all. Even if denied on the first try, you might receive approval on the first appeal. Give it a try.

Take care, (((((hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Re: My Operation 27 years ago

Postby hazel » Sun Apr 05, 2009 6:37 pm

One thing that you may have learned the hard way is that, with this disorder, YOU have to become your own advocate. You can't rely on the wisdom of a doctor fully because there is so much that even someone skilled in this doesn't know. Please consider going to someone who specialized in this disorder.

http://www.chiariinstitute.com/
http://nyp.org/

I went to NYC in order to find the best of the best, but there are also really good doctors in Clevland, OH. and I'm sure elsewhere.

When it comes to SS, make sure to do your homework. In order to get SS you have to meet certain symptoms.
hazel
 
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Re: My Operation 27 years ago

Postby adcolbar » Tue Apr 07, 2009 10:03 pm

Very encouraging story. Good for you and thanks for sharing with us.

Yes, you can get SSDI. I got it on the first try and I don't have a shunt. I had purchased long-term disability through my company and when I started using it, they required that I apply for the SSDI. They hired Allsup to do that for them. That is all Allsup does, so they get about 50% on the first try. I don't know what they charge to do it though. One thing I had them add to it was that there is no cure for this condition. I think that is very relative information when applying. Best of luck and thank you for sharing.
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adcolbar
 
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Re: My Operation 27 years ago

Postby Daddy's GRITS » Sat May 16, 2009 4:46 pm

I had my decompression surgery in '99 and shunt placed im 2000. I too think I had a successful surgery. I'm not in pain and I don't take any prescriptions. The left side of my body was slightly effected from the nerve damage that apparently was there before the surgery. My left foot and legs gives me the problem; they are numb, cold and a lost of sensation. However, I can walk (maybe not in heels or run like I wish I could). With all that been said (typed) my mom has mentioned soc sec to me, but I don't think it's worth the hassle, paperwork, time and etc. in my case ( and yours according to what you have posted). I don't need it. I work a full time job, I can walk, I can function w/o meds. The economy is already "messed up" and going down the drain. I'll rather give someone who really needs it the chance of getting the last drop. I don't know much about our "deformity", what I do know I learned from here over a couple of wks, so I don't know if CM will effect me later where I may consider myself disabled. But as of right now, age 29,"I am ABLE to do all things through Chris, whom strengthens me".
"I can do all things, through Christ who strengthen me."
Daddy's GRITS
 
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