Spine conditions: Told I would not walk without surgery

Posted by annie1 @annie1, Jan 8 9:58am

I have severe lumbar stenosis and Spondylolisthesis as well as a bulging disc. My main symptoms are throbbing in my calf muscles. I was told by a pain management Dr that he thought if I didn't have surgery I would not be able to walk in a few years ! it would be fusion. I would like people's feedback. I don't have pain in my Back, all in my legs.

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@jenniferhunter

@annie1 I'm glad you are working with a rehab doctor. I know you are worried about nerve damage and I was too with bone spurs pressing into my spinal cord for 2 years, and I did fine. We are all different of course and the best one to advise you about when nerve damage would begin would be your providers. I found this information from the National Library of Medicine that may be of interest.

Spinal Stenosis and Neurogenic Claudication
https://www.ncbi.nlm.nih.gov/books/NBK430872/

You mentioned getting cramps and throbbing pain your calves. Cramps and spasms happen when nerves are irritated and sending signals to a muscle. In biology class, we did some experiments with sending electric shocks to see when the responses changed from a twitch response to a sustained contraction (as in a cramp) and found the frequency and speed of signals that made that happen.

I wouldn't worry that permanent nerve damage has already set in, just do the best you can at rehab. You would probably notice something like that if a function just disappeared and stopped working, but do ask your rehab doctor that question.

Jennifer

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Funny, all the Rehab Dr's in NYC that I have seen tell me I need surgery. I have exhausted most other options, like PT, ablation and I tried an epidural injection early on which didn't do much. I also did a trial for a spinal cord stimulator that didn't do much. Later I read that it isn't really helpful for Stenosis. Another case of whether the Dr was mostly in it for the money, not to really help me.

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@jenniferhunter

@annie1 Perhaps this article may explain a bit of the risks after laminectomy involving weakness and uneven functioning of spinal muscles. Scar tissue affects things a lot too. You may need to consult another surgeon. You may want to ask about how many different procedures could address your condition and what the drawbacks are for each of them.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941765/

I can't remember from your original post, were you trying to avoid fusion? Would an artificial disc be an option?

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Yes I am trying to avoid fusion because I have osteoporosis. With a neurosurgeon who said he would do laminatomy and he is one of the best surgeons in New York according to Castle Connolly. Is that a really legitimate rating system ?

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@annie1

Yes I am trying to avoid fusion because I have osteoporosis. With a neurosurgeon who said he would do laminatomy and he is one of the best surgeons in New York according to Castle Connolly. Is that a really legitimate rating system ?

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@annie1 The osteoporosis is a game changer. That may limit surgical options that depend on screws to hold an implant in place because of bone quality. Some surgeons require patients to go on a bone building treatment before doing spine surgery.

I am not familiar with Castle Connolly. I did look up anything I could about any surgeon I wanted to see. Some good resources are US News and World Report, Becker's Spine Review, Medicare ratings of surgeons (but it only applies IF the surgeon has done enough Medicare cases to merit a rating). I also look for any videos from the surgeon or medical papers and I read them. You can also just look up medical research about a condition in respected journals and look to see who the authors are which shows their medical center affiliation. There are also a lot of other medical literature listed in the credits with other names of authors. That takes a long time to do, but you can find experts in the field this way. Good surgeons are teaching at medical spine surgery conferences and sometimes you can access videos from those, or at least find the conference list of who the presenters are. Your physician may be able to help you find good surgeon. Also good physical therapists know because they rehab patients after surgery. I don't give much merit to online patient reviews because many patients have unrealistic expectations and express their dissatisfaction when things don't go their way.

Jennifer

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@jenniferhunter

@annie1 The osteoporosis is a game changer. That may limit surgical options that depend on screws to hold an implant in place because of bone quality. Some surgeons require patients to go on a bone building treatment before doing spine surgery.

I am not familiar with Castle Connolly. I did look up anything I could about any surgeon I wanted to see. Some good resources are US News and World Report, Becker's Spine Review, Medicare ratings of surgeons (but it only applies IF the surgeon has done enough Medicare cases to merit a rating). I also look for any videos from the surgeon or medical papers and I read them. You can also just look up medical research about a condition in respected journals and look to see who the authors are which shows their medical center affiliation. There are also a lot of other medical literature listed in the credits with other names of authors. That takes a long time to do, but you can find experts in the field this way. Good surgeons are teaching at medical spine surgery conferences and sometimes you can access videos from those, or at least find the conference list of who the presenters are. Your physician may be able to help you find good surgeon. Also good physical therapists know because they rehab patients after surgery. I don't give much merit to online patient reviews because many patients have unrealistic expectations and express their dissatisfaction when things don't go their way.

Jennifer

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Yes I know about the Osteoporosis, so I found a surgeon who would do a laminotomy, no screws to implant. If you know anything about that procedure, they would just open up a space so my poor nerve wouldn't be getting compressed so badly. I know all the reviews except the Becker's Spine Review. I'll check that. As far as conferences, hmmm, I could check that also.
Thanks again !
Annie

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I don't know how to use the Becker's Spine Review. I looked up the surgeon's name I am probably going to use, but nothing came up. How do you use it ?

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@jenniferhunter

@annie1 Perhaps this article may explain a bit of the risks after laminectomy involving weakness and uneven functioning of spinal muscles. Scar tissue affects things a lot too. You may need to consult another surgeon. You may want to ask about how many different procedures could address your condition and what the drawbacks are for each of them.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941765/

I can't remember from your original post, were you trying to avoid fusion? Would an artificial disc be an option?

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I am seeing a Surgeon at Columbia University/Columbia Presbyterian Hosp very well regarded, that says he would do a Laminotomy, a lesser version of the laminectomy.

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@annie1

I don't know how to use the Becker's Spine Review. I looked up the surgeon's name I am probably going to use, but nothing came up. How do you use it ?

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@annie1 here is Becker's Spine review. https://www.beckersspine.com/

It has a search bar at the top right, and you can search for a surgeon's name and see if there is post about them. They also are pages like 100 Spine Surgeons to know, etc. You never know who is listed there, but it gives a starting place to look for names of surgeons and some information about their work and research.

You can look up surgeons in US News and World Report too.

Jennifer

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@gently

Well, you can't do anything without a surgeon. And you have time (without pain) to get the opinions of several. Your pain specialist recognizes that both spondylolisthesis and buldging disc are progressive conditions which are now compressing nerves to the thighs. The combination may make the stenosis severe, but you you need a stage on the spondylolisthesis. There are minimally invasive procedures for each condition that can increase the space for the spinal nerves. If the spondy is caused by a fractured bone there may be remedy short of fusion.

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I have spinal stenosis my pain management Dr told me I could wake up one day not be able to walk.

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@mthompson1947

I have spinal stenosis my pain management Dr told me I could wake up one day not be able to walk.

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Is the doctor being cautionary about what could happen if you don't have further treatment.

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@mthompson1947

I have spinal stenosis my pain management Dr told me I could wake up one day not be able to walk.

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I don't think it's that sudden. So what did recommend? I was told that I might not be able to walk if I didn't have surgery. But he didn't say it would be so sudden like that. I am going to have the surgery anyway not necessarily because of that but because I can't live with this type of nerve pain anymore and I used to be very social but now I can't go to things where people stand around and chat like a little art opening or any kind of party where the people are standing. None of the pain management doctors I've been to have really helped me, which is another reason I'm going to have to have the surgery. I sure hope that works otherwise I don't know what I'm going to do.

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