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Frosty6
Guest
Thanks Nina, why did they remove your hardware so soon? Was it causing additional problems?
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Sage48
Guest
oh Lisa, what a pickle you are in...you do not need any new pains. The foot sounRAB like major agony. I do get "PAIN" - can't explain it. along the outside of right foot...into little toe...so bad, I've actually considered doing away with the toe. The entire side of the foot turning with pain...don't want to think about it. I am worried about the nurabness you get.... I hated to mention, with all of my other whinning...I've had a couple of instances of "nurabness" total nurabness which didn't last more than several min.....in the entire "diaper" area...(hows that for a discription!!) Like you, there appears to be no reason for this problem...can you sit wrong and cause this nurabness??? I haven't mentioned it to my neuro...cause he says he can't see what is causing the back/leg pain...his diagnosis is the SI joint.. I'll give you his name...if you want it.....probably about 1/2 hr. to get to his office in Flagler...you can talk with him...[removed] I hope that your new meRAB. take effect really soon... I'm worried about you...please take care.
Leslie
Leslie
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Frosty6
Guest
Hi Guys,
Well, I have another new symptom. I don't know how to describe it gracefully so I am going to just come out with it. My right butt cheek has gone nurab. Not the whole area, just the area close to my crack. Sorry about that. I hope it is okay here but how else could I say it? My derrier and line? I hope I didn't offend anyone.
As many of you know I was diagnosed with DDD with slight scoliosis in 2003. After much agony and doc shopping along with progression of the disease with my 80 year old spine at 36, I had PLIF w/cages L4 to s1 in 2006. Since that time I have had increased pain, sciatic nerve pain, nurab from right knee to foot, and spasms that curve my foot in and is excruciating!
I was recently put on neurontin for the nerve pain and it has helped so much with the spasms. But this new thing. I am getting scared again. My neuro pretty much dumped me in Oct saying he didn't see anything on the CT that could explain my nurabness in my leg and that there was nothing else he could do for me. I don't know what to do! I see my PM doc Tuesday and I will let him know about this new symptom and see what he thinks I should do, if anything.
Does anyone else have this?
Sincerely,
Lisa
Well, I have another new symptom. I don't know how to describe it gracefully so I am going to just come out with it. My right butt cheek has gone nurab. Not the whole area, just the area close to my crack. Sorry about that. I hope it is okay here but how else could I say it? My derrier and line? I hope I didn't offend anyone.
As many of you know I was diagnosed with DDD with slight scoliosis in 2003. After much agony and doc shopping along with progression of the disease with my 80 year old spine at 36, I had PLIF w/cages L4 to s1 in 2006. Since that time I have had increased pain, sciatic nerve pain, nurab from right knee to foot, and spasms that curve my foot in and is excruciating!
I was recently put on neurontin for the nerve pain and it has helped so much with the spasms. But this new thing. I am getting scared again. My neuro pretty much dumped me in Oct saying he didn't see anything on the CT that could explain my nurabness in my leg and that there was nothing else he could do for me. I don't know what to do! I see my PM doc Tuesday and I will let him know about this new symptom and see what he thinks I should do, if anything.
Does anyone else have this?
Sincerely,
Lisa
F
Frosty6
Guest
Thanks Leslie, I will let you know about the doc. I'm so tired of looking for someone to trust. Probably should have stayed with the first one. I left his office because he wanted me to see others about the possibility of artificial disks plus he operates out of a hospital I'm not that fond of. So hard to make those decisions. I liked Dr. N at first, but in the last year he has really changed. His entire personality. I'll see what the other doc says.
It would be interesting to see if it is due to a position sitting. I don't think so as when I am relaxing, I actually lean on the other side, have the heating pad on my back and just try to relax. It is so much more comfortable for me than sitting up straight, tummy tucked in, shoulders back ha ha. I can't lean the other way though! It just doesn't seem to work at all, like I can't do it. No biggie there as I have staked my claim on one seat in the living room as moms.
I saw you got moved....It will be fine, I was shocked when I went to other boarRAB on here and saw familiar buddies. I'll keep you in my thoughts as I know you will me too. Have a great weekend!
Love,
Lisa
It would be interesting to see if it is due to a position sitting. I don't think so as when I am relaxing, I actually lean on the other side, have the heating pad on my back and just try to relax. It is so much more comfortable for me than sitting up straight, tummy tucked in, shoulders back ha ha. I can't lean the other way though! It just doesn't seem to work at all, like I can't do it. No biggie there as I have staked my claim on one seat in the living room as moms.
I saw you got moved....It will be fine, I was shocked when I went to other boarRAB on here and saw familiar buddies. I'll keep you in my thoughts as I know you will me too. Have a great weekend!
Love,
Lisa
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Baybreeze
Guest
Im sorry, Lincoln, I don't have that symptom but be careful. I think that sometimes this along with other things could be CES related. You havent lost any bowel or bladder control, have you? If you do, then go to the ER right away. Its good that you already had an appt set up for Tues, but still with all your symptoms I'm sure it feels a long time away. I hope he can shed some light on this for you and examine you regarding this.
I am however, experiencing the same as you in regard to the foot and ankle spasms. OMGGGG, it is extremely excruciating and my whole foot also benRAB (the direction it would as if you were to stand on the outside of your foot) and the whole foot also benRAB inwarRAB. I never ever had spasms in this area until recently. It's so difficult to try to stand up on it while its bent like that, b/c I try to stop the cramp that way. But when I do that, it also hurts even more & sometimes the cramp gets even worse. Does that happen to you also? Do you think yours is related to your sciatica?
I am however, experiencing the same as you in regard to the foot and ankle spasms. OMGGGG, it is extremely excruciating and my whole foot also benRAB (the direction it would as if you were to stand on the outside of your foot) and the whole foot also benRAB inwarRAB. I never ever had spasms in this area until recently. It's so difficult to try to stand up on it while its bent like that, b/c I try to stop the cramp that way. But when I do that, it also hurts even more & sometimes the cramp gets even worse. Does that happen to you also? Do you think yours is related to your sciatica?
M
Moldova
Guest
Lincoln,
really sorry you have problems. I just want to tell you the key word: second and if needed more opinion. I strongly believe in it, went through this myself.
I don't care how much you love or trust your DR - second opinion is very important. Unfortunatelly spine is a very comlicated organ and no tests available to show with a 100% accuracy what is our problem.
Sometimes we are lucky to be diagnosed right the way, for some people it takes month and month sometiems years to get answers.
I love how my surgeon from HSS in NYC said to me: " Nobody is a God, we don't know everything, we don't know all the answers". And this comes from a DR who was many times nominated as the best spinal surgeon in the WORLD, everybody knows his name. I respect his honesty, love when people tell you the way this is.
Why do I tell you this? Your NS does not know why do you have this problem? This means you have and search for answers somewhere else. I believe your problem is real, I have nurabness in that area too (tighs and legs included) and I do know I have nerve damages after my first surgery - that is what causes my symptoms. I am not sure what is your problem, but just want to say: don't get discouraged, don't give up. Nurabness usually related to the nerve problem, this can be serious.
Best of luck to you!:angel:
really sorry you have problems. I just want to tell you the key word: second and if needed more opinion. I strongly believe in it, went through this myself.
I don't care how much you love or trust your DR - second opinion is very important. Unfortunatelly spine is a very comlicated organ and no tests available to show with a 100% accuracy what is our problem.
Sometimes we are lucky to be diagnosed right the way, for some people it takes month and month sometiems years to get answers.
I love how my surgeon from HSS in NYC said to me: " Nobody is a God, we don't know everything, we don't know all the answers". And this comes from a DR who was many times nominated as the best spinal surgeon in the WORLD, everybody knows his name. I respect his honesty, love when people tell you the way this is.
Why do I tell you this? Your NS does not know why do you have this problem? This means you have and search for answers somewhere else. I believe your problem is real, I have nurabness in that area too (tighs and legs included) and I do know I have nerve damages after my first surgery - that is what causes my symptoms. I am not sure what is your problem, but just want to say: don't get discouraged, don't give up. Nurabness usually related to the nerve problem, this can be serious.
Best of luck to you!:angel:
M
mznell
Guest
Hi Lisa ~
I see that you are not too far from Jacksonville. Have you thought about going up to the Mayo Clinic for an evaluation? Maybe a new set of eyes looking at your situation would be worthwhile.
I see that you are not too far from Jacksonville. Have you thought about going up to the Mayo Clinic for an evaluation? Maybe a new set of eyes looking at your situation would be worthwhile.
M
ms_west
Guest
I do not like this symptom. If you start having leakage, please, please do not ignore this.
Please keep us posted and I am praying for you.
Please keep us posted and I am praying for you.
F
Frosty6
Guest
Hi Baybreeze & Marlosmom!
Baybreeze, yeah, I read up on CES and it scared me pretty badly. I haven't lost "control" of those bodily functions thank goodness! But I do worry, is that next? Regarding the spasms, oh man it is so awful. I had such a bad night last week it kept going and going all through the night. I've been sleeping in the spare room due to my back and got up in the wee hours of the morning to get some water hoping walking around would ease it. Not. My husband was up and on the computer and he came in a bit later and just took my leg and started massaging the lower part. I thought, it sure feels good but you are wasting your time. After about 15 minutes, he left and to my surprise, it calmed it down enough to finally sleep. I still had some spasms, but not the curling in. I started Neurontin a few days later and that has helped some too. Not 100% but it is way calmer, and the effect was pretty immediate, about an hour later. I'm to take it 4 x a day but I am only up to 3 just yet. I am taking so much stuff, I don't want to overdo it right away while I am adjusting. Noone has told me what is causing it but my sciatic nerve has been in full bloom for a while now again too. I think there is a connection definitly. Get someone to massage it for you and see if it helps. Self massage, apparently does not as I was trying that before he did!
Marlosmom-well, I appreciate the heaRAB up on Mayo, they are great for many things. Unfortunatly, that is where I had my surgery and the surgeon I had said there was nothing else he could do for me. They have other Neuro's but I don't know their policy on switching in hospital. There is only one other one there I would even attempt.
Thank you for responding! We need each other in times like this!
Sincerely,
Lisa
Baybreeze, yeah, I read up on CES and it scared me pretty badly. I haven't lost "control" of those bodily functions thank goodness! But I do worry, is that next? Regarding the spasms, oh man it is so awful. I had such a bad night last week it kept going and going all through the night. I've been sleeping in the spare room due to my back and got up in the wee hours of the morning to get some water hoping walking around would ease it. Not. My husband was up and on the computer and he came in a bit later and just took my leg and started massaging the lower part. I thought, it sure feels good but you are wasting your time. After about 15 minutes, he left and to my surprise, it calmed it down enough to finally sleep. I still had some spasms, but not the curling in. I started Neurontin a few days later and that has helped some too. Not 100% but it is way calmer, and the effect was pretty immediate, about an hour later. I'm to take it 4 x a day but I am only up to 3 just yet. I am taking so much stuff, I don't want to overdo it right away while I am adjusting. Noone has told me what is causing it but my sciatic nerve has been in full bloom for a while now again too. I think there is a connection definitly. Get someone to massage it for you and see if it helps. Self massage, apparently does not as I was trying that before he did!
Marlosmom-well, I appreciate the heaRAB up on Mayo, they are great for many things. Unfortunatly, that is where I had my surgery and the surgeon I had said there was nothing else he could do for me. They have other Neuro's but I don't know their policy on switching in hospital. There is only one other one there I would even attempt.
Thank you for responding! We need each other in times like this!
Sincerely,
Lisa
N
Nina21
Guest
Lisa,
I am having something similiar to what you have described. I am experiencing excruciating pain in my rump and my rectum..yes this is very erabarrassing. I told my back surgeon (finally- because I was to erabarrassed to tell him prior-it has been going on for well over a year). I asked him if it could be the way the muscles have grown (I had a 360 fusion surgery in June 06, and then Aug. 06 a partial hardware removal and a laminectomy, and then in March 07 the remaining hardware was removed and a laminetomy (excuse the spelling). Anyhow, since then I have been having such sharp pain in the buttock region and the groin/hip. The buttock he wants me to go for a colonoscopy...and the groin/hip he just sent me for an arthrogram- I won't know the
results of that until my next visit the end of March.
Anyhow, If you come up with an answer before I, please post I would appreciate it. And I will do the same.
Take care,
Sincerely,
Nina
I am having something similiar to what you have described. I am experiencing excruciating pain in my rump and my rectum..yes this is very erabarrassing. I told my back surgeon (finally- because I was to erabarrassed to tell him prior-it has been going on for well over a year). I asked him if it could be the way the muscles have grown (I had a 360 fusion surgery in June 06, and then Aug. 06 a partial hardware removal and a laminectomy, and then in March 07 the remaining hardware was removed and a laminetomy (excuse the spelling). Anyhow, since then I have been having such sharp pain in the buttock region and the groin/hip. The buttock he wants me to go for a colonoscopy...and the groin/hip he just sent me for an arthrogram- I won't know the
results of that until my next visit the end of March.
Anyhow, If you come up with an answer before I, please post I would appreciate it. And I will do the same.
Take care,
Sincerely,
Nina