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2cm Syrinx and no help...

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Unread 10-13-2010, 07:10 PM   #1
wfessler
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Frown 2cm Syrinx and no help...

I was on vicodin and muscle relaxers for the last 2 yrs because of burning/sharp pains in my neck and shoulder blades. Some days I can't even move my head. So my FMD finally orders an MRI and it shows degenerative disk disease, 3 herniated disks impinging on the thecal sac, and a 2 cm syrinx. The pain has gotten so bad, I sit and cry most days. Calling off work so often, I am surprised I haven't been fired yet. So I go to a neurosurgeon because now I have trouble walking, and she tells me I am not a candidate for surgery. The Syrinx is not causing the pain, numbness, headaches, nausea and slurred speech. So I go to another doctor who prescribes therapy, injections in my neck, and neurontin. No one will give me anything for pain and I feel like a complete waste to my husband and 3 children. I live in PA and can't seem to find any doctors who understand this condition. Everyone I talk to medically make me feel like it is just degenerative pain. No one has even said Syringomyelia. Do doctors just not know what it is or am I making it worse than it is. Help please, before I crawl out of my skin....
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Unread 10-24-2010, 11:37 PM   #2
chiarichic
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Do you also have a chiari malformation? I believe it is rather unusual to have a syrinx develop without other spinal disorder.

I am so sorry you are in pain and hope you get the answers you need soon.
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Unread 10-28-2010, 11:15 AM   #3
wfessler
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Originally Posted by chiarichic View Post
Do you also have a chiari malformation? I believe it is rather unusual to have a syrinx develop without other spinal disorder.

I am so sorry you are in pain and hope you get the answers you need soon.



No chiari. I think it is trama induced from a car accident in 92', and now it has become big enough to cause problems. I have to go for a cervical steroid injection in a week for degenerative disk impinging on the spinal cord and I am so scared. I hope it doesn't affect the syrinx. I definately like walking still, even if it slow and difficult. For 36, I feel 90.... So not fair, but thank you for your response. It helps when you find someone who makes you feel like you matter.
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Unread 11-03-2010, 08:43 PM   #4
arkiegal0704
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Originally Posted by wfessler View Post
I was on vicodin and muscle relaxers for the last 2 yrs because of burning/sharp pains in my neck and shoulder blades. Some days I can't even move my head. So my FMD finally orders an MRI and it shows degenerative disk disease, 3 herniated disks impinging on the thecal sac, and a 2 cm syrinx. The pain has gotten so bad, I sit and cry most days. Calling off work so often, I am surprised I haven't been fired yet. So I go to a neurosurgeon because now I have trouble walking, and she tells me I am not a candidate for surgery. The Syrinx is not causing the pain, numbness, headaches, nausea and slurred speech. So I go to another doctor who prescribes therapy, injections in my neck, and neurontin. No one will give me anything for pain and I feel like a complete waste to my husband and 3 children. I live in PA and can't seem to find any doctors who understand this condition. Everyone I talk to medically make me feel like it is just degenerative pain. No one has even said Syringomyelia. Do doctors just not know what it is or am I making it worse than it is. Help please, before I crawl out of my skin....


Hi my name is Sharon and I have Syringomyelia and AC. My Syrinx was from C2 to C7. I had my surgery in 92 only for my problems to become worse. It was not until 2005 that I found a doctor (pain) that finally got me on the correct medication. I'm never pain free but, it helps and makes it bearable. If you'd like to chat let me know and I can let you no what med's work for me.
Sharon
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Unread 11-04-2010, 10:34 PM   #5
Sheri_TOS
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Hi! I have a syrinx in my neck from C2 to C7/T1. I also have cervical stenosis at C5/C6 and milder degenerative changes throughout the neck. I suspect mine is from an MVA in 2003 that damaged the right side of my neck/right shoulder/right arm. My syrinx is monitored for growth but likely doesn't cause my symptoms as my symptoms can be traced to the C5/C6 dermatome. I had the cortisone shots done a few years ago at C5/C6 and the shots dramatically cut down the pain. Definitely give the shots a try! If I hadn't, I would have had surgery to fuse the neck several years ago.

I understand feeling 90 when you're in your mid 30's. My 35th b-day was 18 months post 2003 MVA and it looked very bleak. I was in a ton of pain, losing the use of right arm, etc. Getting into the right doctors and figuring out what meds/treatment works for you is key. For me, it was those cortisone shots followed by stumbling onto a good acupuncturist but everybody is different.
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Unread 11-08-2010, 04:59 PM   #6
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Quote:
Originally Posted by arkiegal0704 View Post
Hi my name is Sharon and I have Syringomyelia and AC. My Syrinx was from C2 to C7. I had my surgery in 92 only for my problems to become worse. It was not until 2005 that I found a doctor (pain) that finally got me on the correct medication. I'm never pain free but, it helps and makes it bearable. If you'd like to chat let me know and I can let you no what med's work for me.
Sharon
Hi Sharon. Thanks so much for your post. The Doctor has started me on Neurontin and that seems to help with the feeling of electric shocks running through my body, but I would love to hear what is helping you... Maybe then I'll have some backing for when I go see the Doc.
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Unread 03-01-2012, 03:24 PM   #7
mikegiar1
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Quote:
Originally Posted by wfessler View Post
I was on vicodin and muscle relaxers for the last 2 yrs because of burning/sharp pains in my neck and shoulder blades. Some days I can't even move my head. So my FMD finally orders an MRI and it shows degenerative disk disease, 3 herniated disks impinging on the thecal sac, and a 2 cm syrinx. The pain has gotten so bad, I sit and cry most days. Calling off work so often, I am surprised I haven't been fired yet. So I go to a neurosurgeon because now I have trouble walking, and she tells me I am not a candidate for surgery. The Syrinx is not causing the pain, numbness, headaches, nausea and slurred speech. So I go to another doctor who prescribes therapy, injections in my neck, and neurontin. No one will give me anything for pain and I feel like a complete waste to my husband and 3 children. I live in PA and can't seem to find any doctors who understand this condition. Everyone I talk to medically make me feel like it is just degenerative pain. No one has even said Syringomyelia. Do doctors just not know what it is or am I making it worse than it is. Help please, before I crawl out of my skin....
i have SM in the neck also. it took me a very long time to get a doctor to listen to m eabout the pain. i was seeing a Chiroprator for about 3 yrs one day he said get an MRI and that was when it was found after that it took about 5 yrs to get a doctor to listen to me. i actually took a book to the doc and websites for him to look at. we have to remember there is so much that goes wrong they can't know it all. after oxycotin and a couple other meds now i am on 240 mg of morphine a day plus 10 mgs of percocet every 4 hrs. stilol not taking all the pain away but it does help. good luck remember some times we have to educate the doctors over again. i know this is 2 yrs later but who knows.
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Unread 03-12-2012, 03:57 AM   #8
dtwaitmh
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Just be careful about the chiropractor I know you are doing anything to find relief but it can actually mess things up worse even if they or you do not realize it.

Quote:
Originally Posted by mikegiar1 View Post
i have SM in the neck also. it took me a very long time to get a doctor to listen to m eabout the pain. i was seeing a Chiroprator for about 3 yrs one day he said get an MRI and that was when it was found after that it took about 5 yrs to get a doctor to listen to me. i actually took a book to the doc and websites for him to look at. we have to remember there is so much that goes wrong they can't know it all. after oxycotin and a couple other meds now i am on 240 mg of morphine a day plus 10 mgs of percocet every 4 hrs. stilol not taking all the pain away but it does help. good luck remember some times we have to educate the doctors over again. i know this is 2 yrs later but who knows.
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Unread 03-12-2012, 07:08 PM   #9
mikegiar1
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Originally Posted by dtwaitmh View Post
Just be careful about the chiropractor I know you are doing anything to find relief but it can actually mess things up worse even if they or you do not realize it.
after about maybe 6 - 10 visits later the Chiro and I decided it may be wiser to stop not knowing what will happen if he POPPED the wrong area. we went to massages in the neck for a little while it felt good but no help. we finally parted ways. but if it weren't for him i may still not know what is going on.
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Unread 03-18-2013, 06:17 PM   #10
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Originally Posted by dtwaitmh View Post
Just be careful about the chiropractor I know you are doing anything to find relief but it can actually mess things up worse even if they or you do not realize it.
I agree, if you have these problems documented be careful with physical manipulation. My spine got made much worse by it. Neck, C spine especially its important to error on the safe side.

and this was my first post...
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