Experience with lumbar spinal stenosis

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MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 12/26/2008 1:02 PM (GMT -7)   
I usually frequent the Crohns board, but am experiencing a new diagnosis and would appreciate input from anyone with experience. For some months I've had aching pain in the lower back and left hip and butt while standing, relieved by sitting. More recently, awakened at night with pain down the left leg when extended on my back, partially relieved by sitting up. Consulted an orthopedic surgeon who xrayed hips and lumbar spine. Hip joints arefine, but some nerve pathway narrowing in L4 and |L5. Am awaitiung the defininitve MRI next week, but research has pretty well nailed the diagnosis as lumbar spinal stenosis. I can stand erect and lean back and immediately have shooting pains, nerve flashes, etc, in the left leg, which is relieved by change of posture. I know the initial treatment for this is steroid injections and PT, followed in many cases by laminectomy to trim away the occluding bone and relieve pressure on the nerve. Anyone share their experiences, results, outcomes? Been walking like Igor and sleeping in a fetal position to keepthe rpessure off the nerve, as the pain from this can be pretty impressive. Seems this is helping the nerve inflammation some, but I am still very susceptible to pain onset when I straightenup. I have no indications of RA or other widespread arthritis, but my research indicates that this is a fairly common problem as weget older. Any input or experiences much appreciated.Thanks!

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 12/28/2008 8:26 AM (GMT -7)   
Hi, I had severe central canal stenosis in my lumbar spine and when they went in for surgery, I also had some foraminal stenosis and lateral recess stenosis. My main problem was caused by bone overgrowth and thickening and buckling into my spinal canal of a ligament that runs along the spine. I also had some disk herniations and bulges. I ended up like, walking around like Igor...i was bent over at almost a 90 degree angle, but stupid me refused to use a walker so I always had to hold on to my pants at my knees and pull my legs to walk. Thinking back on that now, I must have looked like a real fool and was just too stubborn to use any help. I was only in my mid 30's and I guess using a walker or wheelchair would have forced me to admit my disability, which I did not want to do. You are right, stenosis usually occurs later in life, though not everyone gets it. It is very uncommon to have it early in life.
 
The condition, if it keeps progressing like mine did, can take your life away. I was almost home-bound, but somehow I still made it to work everyday. I worked in an office, so at least I could sit and all my co-workers and bosses were so understanding and helpful. THough sometimes they could see I was in so much pain, they sent me home several times. And not being able to bend back is a hallmark sign of stenosis, especially if it's centrally located. I also had neurogenic claudication, which caused horrific cramp-like pain in my rear and backs of legs if I stood straight or tried to bend back. I also had many bouts of sciatica and pain around the hips. I also had non-stop, extremely painful muscle spasms. They first started in my low back, but eventually it spread up my entire back, into my neck and elsewhere. I couldn't find anything to really control the pain. Some meds helped slightly, but not enough. I finally gave in and had surgery, which helped greatly! I was able to stand and bend back again! However, about 5-6 months after surgery, I developed severe sciatica with a numb foot. Turned out I had a lot of scar tissue, which I did all I could do to prevent it, but nothing is foolproof. It is always a risk of surgery. So now I keep having problems with that, plus I think I have something else going on, maybe something similar in my neck. I am getting spasms, cramps, and nerve pains all over my body. I've even gotten  full numbness in & around my right cheek several times, which cannot be related to my lower back. But anyway, even with these other issues, I am still so happy I had the surgery.

MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 12/29/2008 8:41 AM (GMT -7)   
Thanks Baybreeze, that pretty well summarizes my experience with this so far. I am still waiting to get the ||MRI confirmation (hopefilly will have ti done this week|) and then I suppose we will do the physical therapy/injections rouitine, butI plam to be fairly aggressive in pushing for surgery. Seems a pretty straightforward proposition -- if the nerve is being compressed, remove the compressing agent.

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 12/29/2008 8:51 AM (GMT -7)   
You're welcome. I guess it all depends on what exactly is causing the compression. If it's just a disk, then it is possible it can be helped through physical therapy methods. Then again, it doesn't always work. Of course if it's due to bone, ligaments, cysts, or something like that, then only surgery to remove it might help. Insurance usually requires one to go through all the non-surgical treatment possibilities first anyway. Either way, I hope you can find some relief soon.

exuberan
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/31/2008 5:19 PM (GMT -7)   
Baybreeze, I stand in awe of your grit and determination to beat such a debilitating condition at such a young age. I am 58 and have just been diagnosed with cervical stenosis with a current low initial pain threshold. At this stage I am not taking any medication, mostly exercising and trying to stay mobile. I Have severe limited neck rotation and a constant awareness of my neck but otherwise no major discomfort yet. The results from x-ray,cat scan and MRI indicate that things will hot up though. I am also waiting to see if I have the HLA B27 gene so that I can forwarn my children. I heed your advice re having surgery. My advice received to date seems to indicate that it would be best to see a Neurosurgeon rather than an Orthopaedic surgeon, I would be interested in your opinion on this. Again as I indicated earlier I have had at least the best part of my life without pain, you were certainly dealt a poor Hand.

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 12/31/2008 6:16 PM (GMT -7)   

Thank you, though I still don't know  how I got through it! lol

As far as surgeons, I think it's best to get a few opinions. I personally ended up going with an orthopedic surgeon, but he has a spine fellowship and his specialty is adult spine disorders such as stenosis, scolosis and spine injury. He also works with major sports teams and gymnasts, etc and is part of a well-known ortho group. I did a lot of research into docs, plus i got opinions from others. My physical therapist was wonderful in giving me doc recommendations. If you have a PT, you should ask them. And, at PT, I was able to meet and talk to some of my surgeon's patients. So I got good recommendations. And when I went to the hospital, the nurses asked who was doing my surgery, I told them, and they all said if they had a problem, they'd want him doing their surgery. They said I was in good hands. So I was lucky and found a good orthopedic doctor. It's more of finding a good surgeon, whether it be ortho or neuro, plus I guess personal preference.

I am presuming you are being checked for ankylosing spondylitis? My rheumatologist had suspicions of that at first. After my first lumbar MRI, he suddenly had me quickly get a sacroiliac MRI to check for it. But the MRI did not show any fusion so he ruled it out, I guess, though I never had that HLA blood test.

But again, as for surgery, it doesnt matter if it's an ortho or neuro. Just make sure they specialize in spine surgery (that's all they do) and have a fellowship in spine surgery. Read up about them, ask nurses, ask your physical therapists, ask other people if possible who they had surgery from and how it went, etc.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/2/2009 7:08 PM (GMT -7)   
Baybreeze,
Most doctors I've gone to have told me not to consider surgery unless I can't walk
or don't have control. Sometimes I don't think it will be a long time.
I have a lot of problems with my spine. I wake up in the AM and never know what
nerve is going to be assaulted. It goes over to my shoulder too. It's like I have a cross
to bear.
My tail bone seems to be slipping downward if that's possible. Sometime ...
oh, never mind it's tooo hard to explain.
I do have ankylosing spondylitis -- maybe that has to do with the HLA blood test??
I don't know how to check up on a surgeon. I don't know nurses. I don't have a PT.
I'm new in this big town.
So if I "read up about them" where do I go to look? In the pay pages? Can't do
that very much. (economy)
It's just so confusing. I know so little about my 6 year intractible pain.
It would be a real challenge to try and answer this post.
Sorry ... I seem to be just ramblin' and musin".
Pamela PAIN
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 1/3/2009 7:49 AM (GMT -7)   

Hmm, well you can probably call your local hospitals and ask if there is someone that can help you out regarding finding a good surgeon. You always want to ask (whether it be your pain doc, primary GP, nurses, PT's, or anyone else) who they would trust to do surgery on themselves or their family members. You can also visit the page of NASS, which is the north american spine society. They have information for patients as well, plus you can look up by zip code to find surgeons nearby. There are also other sites where you can find similar information. Some of them also list if the surgeon has a spine fellowship. You can always make appt's. with some and just go like it's an interview. You go and ask them questions relating to their background and the surgery. Even though I was given a good doc recommendation, I still brought a list of questions with me when I met the doc. But these are just some ideas.

You sound like me, never knowing what "nerve will be assaulted" when you wake up. I never know that either. Never know where or when I'll get extreme pain or what body part will suddenly go numb. I also get problems with my shoulder, usually my left one. I've had terrible pain and spasms in my left shoulder so terrible, that my whole shoulder/arm were pushed forward & it felt out of place. I even tried pulling it back to no avail. I know how you feel and how tiring it is dealing with pain.

I just thought, I wonder if having AS might have something to do with why your docs are saying you shouldn't have surgery?

 


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/4/2009 8:45 AM (GMT -7)   
Had the MRI which shows some narrowing but not at the surgical threshhold. |Am having epidural steroid injections the 14th, and seeing the local ortho group's spine specialist. He's fairly optimistic that the injections will be effective and grajt long term relief. At present I am elarning posture and sleping positions that work best to alleviate leg and hip pain. Like any chronic condition, part of the battle is accepting it and seeking a courseof treatment that works for you. Will update post-injections -- anyone had experience with those as far as trauma, recovery, etc.?

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 1/4/2009 8:52 AM (GMT -7)   
Mike, have you had spine surgery before? If so, was your MRI done with contrast I hope? The contrast would be able to differentiate scar tissue build-up, which I ended up getting after surgery.
 
It's possible the injections might help to relieve your pain, but it's not a definite. It's worth it to try, though. However, again, it depends on what is causing the pain. If there is bony buildup, injections might give you some relief for a very short period of time, but will only be a band-aid. Once they wear off, your pain would come back. If it's a disk issue, it might buy you some pain-free enough time to do physical therapy, which may help the disk problem. But again, nothing is a guarantee, unfortunately. But you are right, one does have to change things around in their lives to try to lessen the pain. Either way, I wish you luck with the injections and let us know how they go.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/4/2009 1:16 PM (GMT -7)   
No previous surgery, and the disks look fine. He's leaning toward one/tendon narrowing in the nerve channels, though the MR|I did not show dramatic narrowing. Froim my research the visual indicators like that arenot always clear -- some people show a lot of narrowing with minimal symptoms, while some show minimal marowing and lots of symptpms. so I guess I fall in the second category. So I will try the injections and see what thatdoes. Thanks!

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 1/4/2009 1:24 PM (GMT -7)   
Okay, sorry I had misunderstood something you had typed. And you are right that some with major looking problems on MRI can feel no pain and some with minor looking problems can feel a lot of pain. Plus, MRI's don't always pick up everything. My MRI's picked up a lot, but when they went in for surgery, there were quite a few more stenosed areas than was shown on MRI.
 
I wish you lots of luck with the injections and I really hope they work for you!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 1/8/2009 8:28 AM (GMT -7)   
Mike when a person has stenosis in the lumbar spine, they do find sitting as the best position because the pressure of sitting sort opens the area somewhat which gets a little of the pressure off of the nerve. Standing, attemtping a backwards bend not a got thing. Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 1/14/2009 10:37 AM (GMT -7)   
Mike is it today that you have your injections? Sure do hope they give you some relief. Steroids can be good for getting inflammation down. Let us hear from you. Susie


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/16/2009 6:20 AM (GMT -7)   
Yes had the nerve block injections on Wednesday, they went fine. Prior to that I had managed to get symptoms at a pretty tolerable level by resting, avoinding prolonged standing and sleeping in a non-extended position. Prior to the injections we reviewed my MFRI report which shows mild to moderate stenosis, spurring, etc. scattered all over the lumbar spine, but with no one or two obvious locations that he can point to and say "that's it." So he injected at three levels from L-1-2 down to L-4-5. Now in day two and I cannot see any real changes, but I am advised that it can take somewhat longer. I go in next Wednesday for re-check and will continue to monitor results. Fromi before and after the injections my primary areas of twinging pain on extendion and numbness are the inside left knee and left shin from the knee down midway, with some aching in anterior left thigh on standing. It's certainlh better than it was at its worst, and I may well be looking at a fairly chronic condition that can't really be addressed medically until and unless one of more specific stenosed sites get really bad. So no long hikes . . .
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