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Adjusting to chronic pain

Karen58KKaren58 Posts: 7
edited 11/03/2014 - 5:03 AM in Chronic Pain
I am new to this group, although I've been lurking for a while.
My orthopedist has recommended spinal fusion for severe lumbar spinal stenosis. I've decided against it, for several reasons. I also cannot take pain killers because I started abusing them. And I cannot take NSAIDs because of another medication I'm taking for a different condition. So I've returned to physical therapy.
I'm feeling down because I realize now that I will likely never be pain-free. When I started this "journey," becoming pain-free was my goal. I'm in the process of modifying my lifestyle to help reduce pain, which means giving up some things that I've always enjoyed (long walks, going to the movies, gardening, etc). I hope I don't sound like I'm whining, because I'm well aware that things could be much, much worse.
I'd like to hear others' experiences of adjusting to chronic pain, and I'm also like to hear about what works and what doesn't work. I'm also wondering if getting occupational therapy would help.
Thanks for listening!


  • Have you discussed with your surgeon the risks involved in not getting the compression relieved? Is the stenosis in the spinal canal or is it in the foramina where the nerve roots exit? Neither one is a good thing, and can result in not only ongoing chronic pain, but if it is in the canal can result in permanent damage that can't be undone at a later date.
    Foraminal stenosis would effect a dermatome ( an area of the body that that particular nerve root innervates) but canal stenosis can have a much wider effect , depending on the levels involved.
    I can understand your concerns regarding the medications, and your history, but with severe stenosis, there are definate risks that are involved that you really want to be sure about, because the decision could have long lasting repercussions that you may be unaware of.
    What levels are we talking about here?


  • Karen58KKaren58 Posts: 7
    edited 11/04/2014 - 7:14 AM
    Sandi, I did not know that! I will ask today where the stenosis is (canal vs foramina).
    I have it at L4-L6.
    Thanks so much for responding.
  • Hello Sandi, I am so confused about your comments to Karen. After review "Spinal Stenosis - A definitive guide" I can see clearly that having surgery is just a "lifestyle option" for this type of condition, and on the other hand you are talking about severe risks and possible permanent damage that can not be undone a later date. Would you please clarify this point ? Because I am under the impression that your statement is exactly against the page statement. I also have spinal stenosis and your point would be very important for us. Thank you !
  • nerves pass in the spinal vertebra. There are two types of stenosis, foramina and central canal stenosis.
    When stenosis occurs within the spinal canal, it can become so compressiive that it can cause damage to the spinal cord proper/thecal sac which contains the nerves within the spinal cord or Cauda Equina in the lumbar region of the spine. This compression of the sac, can cause damage to those nerves which can result in permanent damage because those nerves do not regenerate like peripheral nerves can. Stenosis causes narrowing, but not always compression of the cord or the nerves wtihin the cord, depending on the severity of the stenosis. The degree of stenosis is important because most cases of very mild, mild , cause narrowing but not necessarily compression on the nerves. Moderate or severe usually does involve compression of the nerves themselves, which can result in permanent damage in the spinal cord nerves within the canal.
    Foraminal stenosis occurs at the foramina, where the nerve roots exit at each vertebral level.....again, the degree of stenosis matters alot when it comes to what type of damage can be done, and because the nerves involved are considered peripheral, they have the potential to recover from compression given some time.......
    I hope that explains it a bit better and clarifies when stenosis can cause damage to the nerves.
  • Sandi,
    My ortho said that I have both and that he doubts if PT will be of any help. He painted a very bleak picture if I don't have the surgery, although he says there aren't risks, per se, in not having it; just that the condition will continue to worsen and become increasingly painful. He said the surgery will provide the most relief, but only for 3 or 4 years.
    I had to do some walking yesterday. It was very little, the length of two city blocks maybe, and today I'm in great pain.
    Feeling frustrated and discouraged...
  • I understand........I have it as well, and the canal diameter in my case is so compressed, that the risks of paralysis are there....
    A lot of stenosis depends on the levels involved or the foramina involved.
    Walking can become increasingly painful , the more time that passes and the narrowing worsens.
    The good news is that in most cases, the surgery does in fact, do really well in relieving the compression and the symptoms , then we are left wondering why we waited...
    Hang in there Karen........the idea of surgery is never a fun thought but the benefits , can be wonderful.
  • Thanks, Sandi, I feel somewhat encouraged by your comments.
    Am I understanding correctly that you have had the surgery?
    I'm going to at least get a second opinion before I make a final decision.
    I'm new here, as you know, and I have a question. Please let me know if I should've posted it somewhere else. Here goes: Don't I qualify for a disability parking placard? My ortho says no.
  • I am very sorry but I still find your statement absolutely contradictory with the web site statement at "Lumbar Spinal-Stenosis - A definitive guide" pls see below:
    Surgery for lumbar spinal stenosis should only be considered if a patient's ability to participate in everyday activities is unacceptably reduced and a concerted effort to relieve symptoms through non operative means has been unproductive.

    For most patients, lumbar spinal stenosis surgery is mainly a lifestyle choice. For example:

    If patients have had to give up a lot of activities, they may want to consider lumbar spinal stenosis surgery or
    If patients are still functioning reasonably well, there is no need to take the risk of surgery
    Also, for the most part, there is no window of opportunity that a patient will miss if they wait on the lumbar spinal stenosis surgery. Generally, undergoing stenosis surgery later will work as well as having more immediate surgery for lumbar spinal stenosis."

    As far as I know the only one absolute indication for surgery is if develops a "Cauda Equina Syndrom".

    Thank you and apologize for this comment.
  • sandisandi Posts: 6,343
    edited 11/05/2014 - 2:36 PM
    There is no need to apologize. The information on this website is very general in nature.........and while it may seem that the guide is contradicting what I have said, it really isn't. STENOSIS itself is simply a narrowing of the foramina, or the canal. It, by itself is not necessarily a surgical issue UNLESS the narrowing is so severe that it is impinging the nerve roots or the canal nerves within the thecal sac. If that happens, you have two issues going on, but they are interrelated.......you have the narrowing of the area where the nerves are, but you also have contact with either the spinal canal nerves in the thecal sac or the foramina where the nerves are being pinched/compressed. If the reason for surgery is simply stenosis (narrowing only ) on it's own, with no other complications/factors, then no , surgery doesn't have to be performed if the patient doesn't want to pursue it. Does that make it clearer?
    This is where I think that you are misunderstanding what I am saying. Stenosis does not always equal compression of the nerves, BUT when/if the stenosis is so advanced that it effects other structures ( ie nerves or nerve roots) within the spine , is when the risks to the nerves become involved.
    Stenosis causes something called Neurogenic claudication, which is that tired achy, weak feeling that one with stenosis gets when walking or standing for prolonged periods of time.It is usually relieved somewhat by leaning forward or sitting and opening up the canal.
    As far as surgery being optional, in most cases of spine surgery it is considered elective.....Cauda Equina, even though considered a surgical emergency ,is not life threatening, therefore it is also elective. There are recommended treatment standards for almost all medical conditions. There are risks for not having surgery, but it is still considered elective.
  • So many of the basic terms related to spine damage are very confusing. Doing searches on these often leads to the "it's not necessarily painful & can be treated with conservative....". That's why you read the advise You should have a consultation with a board certified spine surgeon' so often on these forums.
    Degenerative Disc Disease by definition is a natural part of aging & most people over a certain age (20-30) have it. It doesn't necessarily cause pain. Osteoarthritis is simply wear & tear & requires exercise & on occasion OTC pain meds like ibuprofen. Stenosis in itself isn't really serious or necessarily painful. Same sort of thing is said of many spinal conditions. I have those conditions & I live with unrelenting pain. My specialists are amazed by my level of functioning, which is severely limited compared to a 'normal' person. My diagnosis include DDD, osteoarthritis & stenosis. It's not those conditions that are crippling me. It's the severity of them. The nerve impingement, bone spurs, inflammation, spasms etc etc etc that they cause. My spine is severely degenerated but if you took my diagnosis & searched each one you would think I'm fine, maybe take a few Tylenol & ibuprofen when I over do it but generally live a regular active lifestyle. That's far, far from the truth.

    Spines are complicated & confusing. Even with specialists I believe in second & third opinions.
    Osteoarthritis & DDD.
  • I agree, but regarding 2nd and 3rd opinions .... mmm I have found that you can get as many different (and VERY different) opinions as neurosurgeons you visit (very qualified all of them), so it is very hard to make a decission, because of where one says It is for surgery, the other one says Not at all. Where one says laminectomy the other one says nahh just an spacer. I have visited 5 or 6 qualified neuro and ortho surgeons since my problem starts in 2012, and I am more confused now than ever ...

  • Dealing with differing opinions about what to do, or not do, what treatments to try or not try, is difficult, but ultimately, it really has to come down to , which doctor do you feel the most confidence in? Which one made you feel that he had your best interests at heart? Which one listened to you? Answered all of your questions and concerns? Which one did you feel was not pushing you toward anything but gave you his opinion based on what he really felt was best for you?
    I also asked the surgeon consults what they would recommend if I was their wife or sister........that helped to clarify for me what I needed to do.
    I don't necessarily believe that it is the number of consults you have that matters, I think you have as many as you need to have to be comfortable and sure of your decision on surgery or not.......and when you find the right match for you, you know it.
  • Although I believe your above advice/comments were meant for Bernie, I wanted to let you know that I found them extremely helpful. Thanks!
  • My comments were meant for anyone who finds them helpful.....I used Bernies name because he posted specific questions and so I answered it as best I could, but my comments are always directed at anyone who may find them helpful to them..
    I am glad that I was able to give you some help Karen. Good luck with whatever you decide. If I can help answer anything else, feel free to ask.
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