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Medical Mystery


Firstly, I must say that this website and community on it is a godsend. I've been a spectator for several years and the topics and discussions amongst the people here have helped me in many ways immensely. It's therapeutic to know that there is a community of people willing to talk about their medical conditions and have sound advice or answers given to them.

Before I get to my questions, I will give a little background with hope that with the information that I provide will give some of you the content to help me out. When I was 17(currently 32) I suffered a weightlifting accident while squatting with over 350lbs. I thought nothing of it and treated it as a pulled muscle. two weeks later I started football practice. I took a jarring head on hit and felt my left leg go numb. The numbness began to subside, along with the pain, to a tolerable level but I still felt it prudent to see a doctor. On my first visit, I was told that it was nothing more than a pulled muscle so I went back to football practice the following day. I noticed that while the pain was at a tolerable level, I could not run as fast as I could and that the more I ran, the more the tingly sensation in my leg was present. I went back to the doctor and was given an xray which showed no major damage. I tried practicing again and something just did not feel right as the numbness became worse so I forced myself to quit hoping that the symptoms would go away with rest.

A year later, I noticed that when I tried to do anything physically extensive, ie. basketball, raquetball the symptoms became prevalent but weren't intolerable. Still, they were enough where I wanted to see a doctor. Upon my visit, I came to find out that my primary physician has changed. He did something the other doctor didn't which was run two fingers down my spine and without me telling him where my pain was, his hand stopped exactly in the area in which I felt it. He told me that we should look into this and have a followup visit. Several weeks later I went back to the clinic to find that it was bought out by a larger entity and that some of the staff was replaced, including my new doctor. So, now I had to deal with a different doctor. He told me that he believes that I have a pulled muscle and when I tried telling him about my prior visit with my last doctor, he said that there were wasn't any notes in my file, in fact my file was blank. So, at that point I became frustrated and stopped going to the doctor.

Three years later, my symptoms became worse so I went back to the doctor who promptly told me that it was a pulled muscle at which point I asked him if that a pulled muscle can last four years. He didn't answer my question and didn't want to preform any scans on me. After this visit, I gave up getting medical help and became to believe that the pain and numbness was all psychological.

As the years went by, my symptoms became worse but I ignored them. At the age of 27 I had a slip on the ice in which I folded as if I was a taco and landed right on the problem area. My pain and numbness exploded exponentially. Luckily I married a nurse and she would no long allow be to ignore my problems and set up a meeting with the top neurosurgeon at the hospital in which she worked at. I was given an MRI and when my surgeon was able to view them, he had his staff call my wife immediately(while she was working). She was told that he was cancelling his upcoming vacation to operate on me ASAP because there's a chance that I may become paralyzed in my left leg should I not seek medical attention immediately. I was given the choice of either a L3-L5 fusion or a laminectomy between my L4-L5. We both decided on the latter of the two since a fusion is so risky and that I am rather young for it.

Well, it's been two years since my operation and I must say that my pain and numbness in my left leg is worse. I've seen several doctors for counsel but I am usually told that I'm a medical mystery because they can't figure out why my symptoms have gotten worse post surgery. I've had the cortisone shots, physical therapy, and a nerve ablation to no avail. The longer I walk, stand, sit on a normal chair, the more numb and unresponsive my leg gets. It got so bad a few times that in order for me to get in my SUV, I had to pick my leg up with my hand. My pain is currently being managed but is still at times quite severe, it's enough that I have to change my shirt because I'm soaked in sweat

I've seen 5 doctors since my operation and have gotten vague or no diagnosis. I've been told that its failed back surgery, that my nerves are damaged, or that I'm a "medical mystery". I am often afraid to speak my mind to the doctors in fear that they will see me as a "pain seeker" since I've come to believe that's why I was initially misdiagnosed all those years ago. When a 17 year old comes in with back pain, I'm sure that it raises a few eyebrows even though I never once asked for medication of any kind. I suffered an ulcer in my mid twenties because I used so much ibuprofin due to that I felt that the doctors would think I was trying to get pills and just brush me off as other doctors have in the past which was psychologically damaging. I don't care for being treated as if I were a criminal when I'm trying to seek help.

I apologize for the novel I wrote but I thought some background information would be helpful to those willing to answer my questions that the doctors I've seen can't seem to answer.

--Do any of you suffer from similar symptoms and if so, what helpful medical advice could you give me to manage my condition?

--To those of you with nerve damage, is there any hope for me or did I possibly damage myself beyond repair?

--Does nerve damage get worse even if you start to "take it easy"? I've slowed down quite a bit and I've noticed that symptoms seem to still progress

--The big question: My surgeon told me on my last visit a few months ago that I should get a fusion. He would not answer me when I asked if my symptoms would get better or if there's a possibility that things could get worse. I'm deathly afraid of going paralyzed in my leg and I fear that if I don't get the fusion, I will but I'm also afraid that my symptoms will get worse just like after my first operation. So, to those of you with experience with such matters, was a fusion beneficial to you or did you find little change in you conditions or did your conditions actually worsen?

Thank you to those of you that took the time to read and respond to my post.




  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 09/11/2014 - 6:42 AM
    Hi Matt. I lurked here for ages before I started writing too. I'm glad you've decided to become a more active member. Even just venting & chatting has done me the world of good. Chronic pain can become so isolating over time & 'normal' people usually struggle to understand everything that we go through. Being part of this community has many rewards. I hope you share my positive experience.

    Thanks for sharing your history. I think "It's muscular. Get some rest" is the common diagnosis on our first GP visit. It usually is & most patients recover & never look back. That's exactly what I've been told in the past. I made the same mistake...my GP told me to take the meds & come back if it doesn't improve. It didn't really get any better but I just lived with it. When it flared I'd go back & get a similar response. I understand, because I wasn't pushing its easy to see why my doc didn't think it was too serious. By the time my back completely went & I couldn't walk the degeneration was past the point of no return. Ugh!!

    When was your last MRI? Did it show nerve compression anywhere? Do you have a lot of words like 'severe & advanced' in your summary report? I was in my 30's when my spine problems really started to impact my quality of life. Age shouldn't effect our treatment but in many peoples experience it does, particularly when it comes to medications. My life became so much better once I was under the care of a compassionate doc I completely trust. You need to find a specialist that you can be completely honest with. Good luck! It will make so much difference once you find a PM, surgeon, therapist team working on your case. It took me quite a while 'interviewing' & trialing different specialists but the search was well worth it! 

    Fusion surgery is usually the last resort it's a HUGE descision. It's repeatedly stated that fusions are performed for structural reasons & NOT for pain reduction. A surgeon can give you an educated guess but no-one can guarantee that your pain levels will be reduced. The longer a nerve has been compressed the longer (if ever) it takes to recover. If your nerve has been damaged & nothing is pressing on it now I don't think surgery would 'fix' that.
    Using a variety of diagnostic tests they should be able to identify your pain generators, show you what's causing the problems & show you how surgery will change that. If no-one has been able to diagnose what's wrong how do they know that a fusion will help? I'm not very 'medical', I'm just sharing my logic.
    My friend recently had her 3rd lumbar fusion. In the months leading up to surgery she had a MRI, 2scans, EMG's, diagnostic injections in several areas, as well as many examinations & consults. They were absolutely certain that surgery was essential & her only remaining option before they proceeded. I think that's how it should be. She's recovering well but they couldn't guarantee pain reduction & of course things can always go wrong. 

    Sorry! I've written a novel too! You don't sound too impressed with your surgeon. I'd seek a new one who explains his reasoning better & takes the time to address your concerns. Even then I'd still get a second & third opinion from other surgeons. It's the rest of your life! You have to be sure that you're making the right choice. A surgeon should be able to answer the question "What will happen if I don't have or delay fusion?". From what you say they can't even show you what's causing your problems... I'd be frightened too!!
    Osteoarthritis & DDD.
  • Surgery isn't done to relieve pain. It is done to correct either an anatomical or nerve problem. Pain relief sometimes occurs as a result of the surgery but it is not the goal.
    It sounds as though you have some nerve compression, what is causing the nerve compression is anyone's guess at this point- scar tissue, stenosis, or a congenital narrowing somewhere that is causing the nerve pain symptoms you are experiencing.
    The reason that the surgeons can't tell you for sure if surgery will relieve the pain is because it is unknown. In some patients, having surgery will relieve the pain and in others it may not or it may worsen.
    As far as the nerves chances of recovering go, again, it depends on several things, mostly how long the nerve has been compressed, how severely it is damaged, if it is a peripheral nerve or if it is in the spinal canal cord itself.....Peripheral nerves can recover in many instance, while damage to the nerves contained in the canal may not....but you do need to be aware that nerve pain can continue or worsen post op as the nerve starts to recover from the compression......it usually settles down again, but it can take some weeks or even months . This doesn't mean that it won't improve over time, in fact, that is what you want to see........the way the pain changes ( sensations change) over time.
    You asked if a nerve can heal on it's own if you rest........if the nerve is compressed, the answer would be no.......if there is compression, the only way to relieve that compression is to remove the cause.
  • I have had a fusion due to an os odonitoideum, instability, spinal cord contusion, and hyper mobility in my upper cervical spine. The fusion for me hasn't been helpfully but my diagnosis is very rare. I am only 16 and had my first fusion 2 years ago and am in a lot of pain however I will most likely be goin in for another surgery and hopefully my last for a while (that would be my 3 in less than 2 years). Now also remember though my case was a very rare case and I was actually used as a test case. Nerve damage can take years to get better and is different for everyone. It may possibly get worse but just be patient. Also a surgeon should never do a surgery just due to pain, only if there is evidence as to what is happening shown on some type of imaging. At least that's what my surgeon has said to me before, she said that if you don't know what is actually going on then what will doing surgeries do if nothing structurally needs to be fixed or improved
  • Hi Matt. I completely understand where you are at...and as someone whose pain is much worse (now 4 years) after fusion than before I would advise the following: whenever considering fusion, please seek at 3 opinions - I recommend getting both least one orthosurgical and one neurosurgical opinion. Make very attempt to find a decent pain medicine doc to control pain and physical rehab doc for core strengthening. There is plenty of great advice here about both pain medicines, multi-drug approach (use of muscle relaxers, SSRIs/TCA's) and alternative treatment of pain too (hear,n cold, TENs), also believe fusion should always be the last choice unless paralysis is imminent . Keep in mind even with "success" ( the definition of which can vary greatly between physician versus patient)....there will be stresses from fusion that putl adjacent areas at significant risk for problems down the line. Regarding neuropathy: I did have resolution of both neuropathy and numbness of my foot after 5 years, unfortunately my facet and back pain have not resolved. When I did have neuropathy, amitripyline helped me personally but I did gain weight. Be prepared for a "long haul", be wary of "quick fixes" , and if you do find a good pain management doc, resist the opinions of surgeons that try to convince or guilt you that taking daily pain meds is a sign you need surgery; you may need much more pain medicine after a "successful" surgery than before.
  • sandisandi Posts: 6,343
    edited 09/17/2014 - 7:18 AM
    Surgeons define a surgery's success on whether or not the surgery fixed the problem. Whether it is anatomical or neuropathic and relieves the compression of the spinal cord or the nerve roots.
    Patients , however often don't understand the difference in what the patient would consider a successful outcome of surgery- ie. PAIN relief.
    We tell patients over and over that if the sole purpose of their surgery is hope of pain relief, it is the wrong reason to consider surgery. Surgery is a mechanical fix for a structural problem.
    Do some patients get pain relief? YES, they certainly do.......but many more do not, because that is not the purpose of surgery. The PURPOSE is to correct the problem, pain relief is a bonus if the patient gets it. Surgery can make pain worse in the long term because of the structural changes to the spine.
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