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Long time lurker, finally speaking up...

RoadrageRRoadrage Posts: 2
edited 06/11/2012 - 8:56 AM in New Member Introductions
First, what a great resource this has been. I find myself reading through the posts often for different reasons, but mostly just to relate as it is all too easy to feel alone and different in the world when dealing with these types of medical issues.

My medical story started 7 years ago when constant (5+ episodes a day) right should dislocating were severely impacting my ability to perform daily functions. After multiple attempts of PT still left me in the same state I finally opted for right shoulder surgery, bankArt repair. After surgery I continued to have lots of pain, mostly joint but also nerve pain. I maintained constant ibuprofen and also underwent a number of cortisone injections but none allowed me to use my shoulder without pain. I continued to seek answers and eventually all my doctors and therapists were directing me to seek a particular surgeon in Boston who after consulting recommended a second surgeory. I came out of that surgery in a very peculiar contraption that I had to wear for two months. The pain following my surgeory was unbearable now both in my shoulder and neck and at times I fell out of consciousness and Ultimately the surgeon turned his back On me and said "deal with it". Under recommendation of the ER doctors whom were now familiar with my pain and the severe nature of my issue as a whole, I returned to see a physiatrist who I had seen about my shoulder prior to surgery. He took control and said he would do everything to work towards getting me better and managing my pain. I went on a number of narcotics as well as muscle readers and anti-nerve pain Mede and also started to see a spinal pain doctor. I went for a series of test injections and epidural injections before then going for regular RFL treatments (radio frequency Lesioning) all giving some additional but not total relief. Just as we found a pretty decent combination of reduced narcotics, muscle relaxers, trazadone for sleep, RFL, nerve blocks, and bi-weekly trigger point injections, I came home to my wife and some close friends who staged an intervention for me. Although by this time I had Ben taking narcotics for several years and know my body is physically addicted, there was nothing more I wanted to do to get rid of the pain and get of narcotics, but am confident I am not addicted nor do I ever abuse or misuse my paiin drugs. This explanation was not well received and I was given the choice to get off the drugs or loose my marriage. The next few months were hell pain wise and I also fell into a pretty hopeless episode of depression. I finally reached a point that I told my wife I needed relief even if only once in a while and also continued to go through all the great tests with doctors, EMG study's, ct mylograms, mri's with contrast, and other just as fun poking and prodding procedures. I began to see a psychiatrist for depression as I too often contemplated living my life in this much pain. At the beginning of this year I had one particular RFL treatment that after a month provided a good deal of pain relief and then two months later I slipped and fell in the snow and it all came back and then some. The doctors sent me for an updated MRI and the report said severe progression and should seek surgical consult. I went to two separate Dr's both who had seen me in the past, one is my neurologist and the other an ortho surgeon and now they are both recommending surgery, but their opinions differ.

One is recommending posterior fusion surgery on 4-5, 5-6, 6-7 and the other is recommending anterior on 6-7 using my own graph. My issues had always been with 4-5 and 5-6 until this point so would hate to get one level done and have no relief but also scared to go posteriorly. I am also surprised that the one Dr. Is recommending self-donor bone as this seams like much additional discomfort and risk for little to no benefit ?

I honestly am scared to death of another surgery, but at the same time fantasize about getting back to the normal active life I had always lived. Both Dr's were very conservative in their predictions of pain relief, but both said they are hopeful this would help or would not consider it.

I plan to review their recommendations with my physiatrist but also weclcome all thoughts and opinions!

Thank you for taking the time to read this, and thank you to all on this forum who have taken the time to share your stories. Although you may not know it, what you shared here helps so many people and may even have saved a life by giving them hope to continue enduring the pain, and seeking answers. Sincere Thanks go to you!


  • First let me say welcome to spine-health. Sounds like you have been through the ringer getting to a diagnoses, unfortunately not that uncommon. But what is done is done and you need to put it behind you, but I can understand posting for point of reference to the reader.

    As far as the two surgeons having varying degrees of opinions that is not uncommon either. But what to do with the opinions is the question? If I was in your shoes and the opinions are that far off, I might get a third opinion. You don't want to do to much surgery, but then you don't want to leave something undone that may only cause additional pain, and not be resolved by surgery. Keep in mind with surgery, as you have experienced there is no guarantee's, but they success rates are pretty high.

    AS far as the two surgeries. I am suspecting the posterior surgery, they will be using a cadaver as the bone graft, as they can place the graft better in that position, so it is not as crucial. On the posterior approach the surgeon is probably thinking you maybe hard to fuse for someone reason and wants the allograft to insure fusion. I have used my hip bone three times and while it was painful it heeled. Additional information you should know about allograft is the bone doesn't regrow where they take it from. If you don't have arthritis it may never effect you. I know my hips are still pretty good from using my bone.

    Posterior surgery, is the harder of the two surgeries to recover from. The spasms being the worst. Recovery is longer as well, with the posterior surgery. So your not really trading pain wise post surgery with either surgery.

    Look in the FAQ section at the link on 38 questions to ask a spine surgeon. Go through the list and see who many of the questions you can answer. From there I think you will find more questions you have, possible helping to make your decision. Of course the other issue is which doctor do you have the most faith in and have researched the most? Have you discussed with each doctor your post surgery care? I see so many members post surgery whom thought they had the best doctor and the post-op care just isn't there for one reason or another. I am not talking about in the hospital but situations that may arise once you arrive home. You just want to be prepared even if you don't need it.

    Last but not least what does your wife think about this surgery, and you being on narcotics post-op? Does she understand you will need these for pain control. Each person is different in the amount of time it takes them to titrate down from the medications. The muscle relaxers are the most important, as with neck surgery the spasms can be pretty intense.

    Just thought i would stop by and welcome you to spine-health. If there is anything I can do, don't hesitate to pm me. Take care and keep us posted on your decisions.
  • Welcome to Spine-Health. Tamtam has some good words of wisdom and I agree that another opinion might be in order, hopefully from a fellowship-trained spine specialist, either ortho or neuro, but one that only works on spines. You might have seen them already, but if not, something to consider. It's a big stretch between posterior 3-lvl and anterior 1-lvl, isn't it?

    What was the diagnosis of your MRI? Usually, for disc problems like anterior spurs or disc herniations they go in anteriorly because it's easier to get to the discs. If it stenosis and/or facet joint problems, that might require posterior. So I'm wondering exactly what the problems are with your cervical spine.

    I'm very sorry to hear about the misunderstanding with your family regarding pain relief with medications. As we all know, nothing ever gets rid of the pain completely, but allows us to function. I'm sorry that your wife doesn't understand this - we may become dependent, but that doesn't mean addiction, it means pain control.

    Anyway, wanted to stop by and welcome you to Spine-Health and ask about the MRI results, as well as second Tam's thought on getting another opinion or two.

    Take care and please keep us up to date.
  • Welcome to spine health. Sorry that pain brings you here, but you have come to a great place, full of support.

    I too, think that a third opinion would be a great idea, especially when you have two differing opinions as you do. I recieved three opinions before my surgery.

    I hope that your wife and friends have come to understand you better, and are able to understand the difference between addiction and pain control.

    There are two great things to share with loved ones. One is the spoon theory, and the other is letter to normals. Both can be found in this post. http://www.spine-health.com/forum/matters-heart/how-do-you-explain Maybe you could share these with your wife and friends.

    Wishing you all the best. Please keep us updated on how you are doing.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I appreciate everyone's comments and suggestions thus far. 

    I think I may have inadvertently skipped a bit in my post. I have congenital spinal stenosis and two levels of bulged disc and one level herniated. Until this most recent event all of my doctors have agreed there were issues but they found it very difficult to match my symptoms to all of the test results and concluded they could not recommend surgery to resolve my symptoms. Now they are saying they see a documented progression of symptoms which supports surgical correction. An example is that until recently all referral pain was to my right arm but is now to both arms, Hoffmans syndrome now present in left arm, and have reduced reflex response to both legs. 

    Both of the surgeons are very reputable and come with many recommendations. The neuro surgeon has been practicing for 35yrs and is thought to be the best in my community. He is the one recommending single level anterior surgery with self-donor bone. The ortho surgeon is a spine only fellowship trained surgeon and is considered the best in my area and among top 5 in the world. He only performs spine surgery and all the doctors and many people I know say "he is the one" they would goto if they or a loved one of theirs needed spinal surgery.

    I do think I may need a third opinion given that their recommendations are so far off, but unfortunately whomever I would see now would be considered lower rated doctors then these. 
  • hi and welcome to the forum! we are here to offer you support and answer what questions we can. so glad you dropped in! please make yourself at home here on the forum! spineys are a very friendly bunch! i hope you find some answers to your pain problems soon. drop in anytime! Jenny :)
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