someone please tell they experience this

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someone please tell they experience this

Postby smithkath » Mon Jun 25, 2007 9:49 pm

I am in search of someone who can understand the pain I have every day and I'll bet I'm in the right place. I have been decompressed and had thoracic laminectomy. I go to Dr. B July 27 to discuss surgery for cranio cervical and multi-level disk surgery. currently i can't sleep because of severe back, shoulder, lower lumbar pain with extreme burnin and numbness in my hands every night when I go to bed. I'm exhausted and trying to cope with debilitating foot pain (had surgery on foot in January--no relief...pain is worse than ever...can hardly walk...sound like I'm whining yet?!) Anyway, anyone have foot pain so severe like that...could it caused by one of the many herniated disks in my spine? I'm pretty much herniated all the way from cervical to lowest lumbar (L5 to S1) and beginning to feel like I'm going downhill. Also have recently been diagnosed with levoscoliosis, spinal stenosis, have syringomyelai with a cervical syrinx with cord compression. Not sure what all that means yet, but I know it's not good. Dr. B's office called to schedule the appt. and they said I will meet first with Dr. Chen for upper and lower EMG's (ouch) and then to Dr. B to discuss surgery...not to discuss options, but to discuss surgery. Dr. B has been watching the cord compression for two years now, but with the last mri's, he says there is deterioration and progression of disks and that there is slippage of disk over disk...anyone know what that means? Anyway, thanks for letting me go on and on. I haven't posted for months and guess I just needed to vent. Can someone enlighten me on any of what I have talked about here today?!
smithkath
 
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Postby gncrzy3 » Wed Jun 27, 2007 2:32 am

I wish I could be more help,.,, but the spinal cord is sooooo complex,,,
and there is no way to tell with out the help of your doctor. I get excrutiating pain in areas that make NO Sense!! BUT I will tell you ,, that if you feel that something is not right,, PUSH the issue!! Get SECOND AND THIRD opinions!! I was told basically for years that I was a Hypochondriac,, I even had 2 mri's a month before I was rushed to a major hospital.. to find that I had SM that ran from my c3-4 to my L-1
no one new what they were looking at!! Then I continued to have problems that they said could not be coming from my sm... so I kept pushing and finally got sent to a specialist in washing DC.. to find I also had basilar invagination. I know how frustrating it is,,, but you have to do what is best for you! Hang in there
gncrzy3
 
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Location: western PA

Postby gncrzy3 » Wed Jun 27, 2007 2:32 am

I wish I could be more help,.,, but the spinal cord is sooooo complex,,,
and there is no way to tell with out the help of your doctor. I get excrutiating pain in areas that make NO Sense!! BUT I will tell you ,, that if you feel that something is not right,, PUSH the issue!! Get SECOND AND THIRD opinions!! I was told basically for years that I was a Hypochondriac,, I even had 2 mri's a month before I was rushed to a major hospital.. to find that I had SM that ran from my c3-4 to my L-1
no one new what they were looking at!! Then I continued to have problems that they said could not be coming from my sm... so I kept pushing and finally got sent to a specialist in washing DC.. to find I also had basilar invagination. I know how frustrating it is,,, but you have to do what is best for you! Hang in there
gncrzy3
 
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA

Postby mac » Wed Jun 27, 2007 6:06 am

Kathy, I am one of those with a lot of foot pain. For the last three years, whenever I stand up onto my feet from laying down or sitting, I can hardly walk from the pain in the feet. The worst of the pain "walks out" after about 10 steps...but they can remain hurting for most of the day.

Sometimes go to bed and can't get to sleep b/c of the pain in the feet. I think mine can be made worse by how much walking I did on a certain day. Though I never walk "far." We just moved and there is a lovely patch of woods across the road from our new house for me to explore. Normally, I would have been in those woods the first day I got here, but it's been 3 months and I haven't even gone there...my feet and legs hurt just to walk across the road to the mailbox.

I have a broken C1. I have read that lower extremities can be affected if your injury is high enough up in the Cspine. Dr. Bolognese dx'd me with tethered cord and I am going there for the TC surgery and later the fusion. So, I am not sure if the feet thing is from the TC or the C1, but I never had it until the injury.

From the TC, I also have low back burn, hips burn, thighs burn. So, I wonder if Dr. b will find you also have TC, though with all your spine issues, who knows.

I just wanted to tell you that I do have some of these issues, though not the same dx's....

hang in there.
for me, it's a case of looking at what I've done previously to bad flare ups and trying to modify that behavior, or eliminate it. I know, how much more can we eliminate, huh?

hugs
mac
mac
 

Postby Ande138 » Wed Jun 27, 2007 6:47 am

I have the same symptoms. But only the left foot hurts all the time. I wish I could give some advice but I am new to all of this myself. I hope everything gets better for you. I have found this to be a great place to get answers I hope you do too. It is nice to know you are not alone or crazy.
Ande
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