I feel like a bobble head! Am I getting worse?

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I feel like a bobble head! Am I getting worse?

Postby LEA123 » Mon May 21, 2012 7:09 pm

Hi guys,
I've had 3 chiari decompressions, the last one was in NY at TCI with Dr. B. He told me I was one of the most severe cases he had ever seen and while he did alot in that surgery that he didn't think that there was much more he could do for me. It's been about two yrs since then. In the last couple months I've started having problems with my head/neck shaking, it's gotten so bad that I feel like a bobble head. It's very noticeable, often people ask me why I'm shaking my head "no". If I try really hard I can somewhat control it but only with a lot of concentration. It's gotten so severe that it happens almost all day long. I've even started wearing a neck brace more often but it still happens some with the brace on. Does anyone know what is causing this? Am i suddenly getting worse? Should I ask for a new MRI to check for leaking spinal fluid? It's just so weird that it has come on and gotten so severe in just a couple months. Not that anything about this defect and it's effects are normal. Any feedback would be really appreciated.
Thanks,
Lisa
Lisa
CM 14MM
Decompression Surgery 4-2-08
Symptoms have returned, MRI shows no change
Possible second surgery or Steroid shots
LEA123
 
Posts: 26
Joined: Fri Jan 04, 2008 2:49 pm

Re: I feel like a bobble head! Am I getting worse?

Postby gunflint » Tue May 22, 2012 7:25 am

I can't help with the shaking. I wish I could. I do wonder why you had 3 decompressions? I had one and so far it hasn't changed anything. I doubt I would go through that again unless I was assured of success. What was the deciding factor in getting it done twice more? I'm not questioning your judgement at all. I would just like to know why a NS would do the same surgery 3 times. Thanks.
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Location: Duluth Mn

Re: I feel like a bobble head! Am I getting worse?

Postby *Hope* » Tue May 22, 2012 10:40 am

I'm sorry you're having such a bad time again. Have you looked at Torticollis as a possibility? You have had so many surgeries that your muscles could be really damaged. Muscle pain can be crippling and when multiple groups are in spasm it can be excruciating with head jerking and contortions. Check it out.
CM1
*Hope*
 
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Re: I feel like a bobble head! Am I getting worse?

Postby LEA123 » Wed May 23, 2012 11:14 pm

thanks for the suggestion. I also wanted to answer about my 3 decompressions. I had my first surgery done by the doctor whom I got a second opinion from because he suggthings just keep ested a less invasive surgery, after it was done and I had no changes he didn't really want to help me so I went to another neurosurgeon who said that the less invasive surgery was the problem and that he could see from the new MRI that it hadn't done what needed to be done so he did the more invasive surgery, after the surgery when nothing changed he of course no longer wanted to help me. So I went to the Chiari Institute in NY to Dr. B and was told that I had a leak in the patch and that they needed to go in and fix it but he said when he got inside things were more sever than he could have guessed, said he wanted to close me up and tell me there was nothing he could do for me but he just started working on things one at a time. the surgery was supposed to have been 6-8hrs and 11 1/2 hrs later he finally closed me up and said he did the best he could. He said I was one of the most severe cases he had seen. I felt pretty good for about a month and then all of the symptoms started coming back, we would email him and he would email back, he was great but we couldn't afford to go back to NY again. the first two trips there had wiped us out! I wish I knew if he could help me more because I would definately go back to him, he actually cared after the surgery was over. Anyway since that first month things started going down hill, I had a fall right before I started having problems again but when we told Dr. B about it he got a Dr here in AR to request a new MRI and send it to him and he said everything looked ok that there was no leakage. things just keep getting worse and now the neck shaking has gotten really bad! I don't know what to do but I'm just not ready to give up! I keep hoping theres something that can be done especially since I felt soo good that first month after the last surgery. I also wonder why no NS has suggested doing the detethereing thing as I have all of the symptoms of a tethered cord. I hate to even think of the prospect but haven't some chiari patients had steel rods put in their necks? would that keep my neck from shaking like this?

Thanks again,
Lisa
Lisa
CM 14MM
Decompression Surgery 4-2-08
Symptoms have returned, MRI shows no change
Possible second surgery or Steroid shots
LEA123
 
Posts: 26
Joined: Fri Jan 04, 2008 2:49 pm

Re: I feel like a bobble head! Am I getting worse?

Postby emmacos » Fri May 25, 2012 7:39 am

Hi Lisa,

I'm so sorry to hear how much you are suffering. This is a horrible condition and seems to affect everyone who has it, differently.

I live in England, and it is my daughter who has cm/sm... I also sent Dr B at TCI her scans to look at and he always emails me back when I email to ask him questions... he is very helpful.

Would you not be best asking Dr B about whether rods in your neck might help, I'm sure he'd know, especially having already operated on you.

Good luck.

Emma.x
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