please tell me about your surgery

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please tell me about your surgery

Postby hhhhhmom » Sat Jun 30, 2007 2:34 am

Hi,

I've been away for a long time and most of the time I posted under the pediatrics section since it is my 15-year-old son who has Chiari/syrinx. I'll try to make it short and sweet. He was diagnosed nearly 4 years ago and due to the usual crap his surgery has been delayed. His symptoms have never gotten better, only worse and sometimes different. At this point he has severe pain with very limited function. He's been unable to attend school for the past three years and he now walks with a cane. He has daily vomiting, numbness of his hands and feet, severe pain all over his back and leg and progressing scoliosis. There are some doctors who feel that his symptoms are related to a different type of disease but our neurosurgeon said that if you have chiari with a syrinx you should fix it--by the way the ONLY doctor who has put it to us that way. Most of the doctors we saw hem-hawed around and did nothing except ask if my husband and I were getting divorced! (By the way his syrinx and chiari are relatively small and "can't" be causing his pain according to some.)

My son will have surgery in August and although I LOVE this neurosurgeon (he did my surgery this past February for a skull tumor-yehaw!) he is a very blunt guy. He said that in his research/experience he has not seen a huge improvement in the damage that has already been done by the syrinx, just halting of more damage. He didn't really give my son a lot of hope that he will feel better, just not get worse.

Here's where you can help: Please, please, please tell me some good news! Please tell me that you were in pain and your pain is less/gone, tell me that you can feel your hands and feet and you don't drop things unless you're looking directly at your hands, please tell me the nausea you had from your severe headaches and overall pain has lessened. I feel that surgery is the best thing for him at this time but I want to tell him stories of people in the same boat who DID improve even if just a little bit (but preferably a lot.)

Thanks for listening and let those good-news stories roll :lol:

Laura
Mom of Harley 15 with "small" syrinx/acm
hhhhhmom
 

Postby kathymichelle » Sat Jun 30, 2007 9:20 am

okay, I will jump in.
I don't have SM, but do have CM..and was decompressed last year.
The biggest of my symptoms are gone. The drop attacks, the mini-seizures are gone. For the most part unless there is a huge low pressure system coming through(the low/high weather pressure patterns still impact me and my headaches) I feel that the CM headaches are better than they were.

I also have EDS, and some assorted back problems, so its difficult to ascertain where the pain is coming from...

The pain is not gone, but I would hope and pray that each individual's response to surgery is different and in your son's case better.
kathymichelle
 
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Postby hhhhhmom » Sun Jul 01, 2007 3:02 am

Hi Kathy,

Has your back pain improved at all?

Thanks for the reply,
Laura
hhhhhmom
 

Postby kathymichelle » Sun Jul 01, 2007 3:46 am

The neck pain has, the feeling that there was a knife in my neck is gone..well pretty much.

My t-spine area has always been a cause for complaint. I have had a MVA, and a small hemangioma(blood mass tumor) in the t9 verterbrae space, and while docs say that it doesn't cause pain, thats where my pain is. When I get over tired my back does get worse.
kathymichelle
 
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