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Please, I beg, can you tell me if you have had these symptoms?

I've been to this forum off and on for the past 16 months. As I am about to attempt to go on Disability while watching my only child leave for college and my career and business crumble, (I've been the primary wage earner for years) & possibly my marriage not far behind, perhaps I will need to visit much more often. (I'm a 53 yr old woman just hitting menopause too. Yahoo!!)
On with my question. Like many on this forum, I have yet to get a straight answer from the medical community about what is actually wrong with me or how to improve it much less fix it. If anyone out there has had something close to my symptoms, I would be so grateful to know.
16 months ago, after a lifetime of no back problems ever, my dog yanked on the leash and I had sudden low back pain. It took a long time to find out, but I had a large, central herniation on my L5 disc that broke through the posterior longitudinal ligament. (Most herniations go left or right b/c of this ligament.) Symptoms after the acute phase that continue today are: Chronic low back ache that is exacerbated by sitting and standing accompanied by crippling muscle spasms that run predominantly up my right paraspinal muscles from my L5 area to my neck. The muscles deep in my shoulder blade are often the most painful. Muscle spasms are triggered by sitting, standing, walking and some other activities. I have been fortunate to not have suffered from sciatica, however I have yet to find any Dr, who can explain what exact nerves are irritated that cause the spasms.
I know that the spasms are originating from the L5 area because after 10 months of attempting tons of PT, steroid shots, acupuncture, osteopathy, high doses of magnesium, I opted for Microdiscectomy surgery. Went "out of network" on our insurance and spent a ton of $ to get one of NYC's top surgeons, had the procedure done at Hospital for Special Surgery. For the first 7 weeks after surgery the spasms disappeared completely. By week 7 they began to creep back in and within a month, were back with a vengeance. (Can anyone say "scar tissue"? Cuz my surgeon doesn't want to admit that's what it is.)
I have diligently continued with post op PT strengthening that has yielded absolutely no relief. Getting fit aerobically is nearly impossible as even low impact exercise triggers spasms. I cannot sit or stand, so work (which for me is entirely desk and computer) has become impossible. I struggled along for 16 months with the aid of narcotic painkillers which have recently begun to not only wear off but have started making me sick.
I've begun a leave of absence from my business with the hope that stopping the desk sitting and increasing the PT might finally help. I feel pretty bloody hopeless at this point and can't imagine a "speedy recovery" after all the let downs and lack of even slight improvement. My family is sick of my complaints and keep telling me "I worry too much" and need to "get positive". I understand their frustration, but I am gutted and demoralized.
Has anyone out there had a central herniation accompanied by a similar pattern of spasms??? I would be so grateful to find someone who has suffered with this and curious about what you have tried or answers you may have found.

Thank you all for your time and compassion.


  • thepretendertthepretender Posts: 36
    edited 08/04/2012 - 7:12 PM
    I had a laminectomy/disectomy in 2000 and later had to have a fusion at the same level in 12/11. So there is the possibility that you'll need a fusion done. Unfortunately that isn't always the perfect solution. After my fusion. I was doing pretty okay recovering till I hit a period of massive spasms in my back that then went away after about 3 weeks and left acute sciatic pain/numbness in my right leg. I had another MRI done and there was a mild problem L5/S1 on my MRI but wasn't something my neuro felt was causing the problem. He told me I'm in the 5 percent whose nerve just fails to recover.

    So I went off to try an injection as neuro said to do 3 of those and if they fail I'll need a nerv-stim implanted...and at the office visit the pain specialist discussed the likelihood of scar tissue being the problem. I do know I had scar tissue from my first surgery as well, because it veiled a synovial cyst on my MRI that was found in my fusion surgery.

    I just find it interesting that my neuro never considered this as a problem, same as yours, and just ruled me in this percentage of people with a funky nerve that just won't regenerate when my gut feeling is that something's compressing on it.

    I wish I had better answers for you, I too went out of network with my insurance to have a top surgeon perform my fusion and was likewise strict in my recovery with PT, etc. to have the best outcome possible. I've tried it all like you from accupuncture to holistic medicines, the works and feel my family's tired of hearing about my problem as well as I'm tired of dealing with it. I feel your pain, it's very frustrating to be in this boat.

    Did you have a post-op MRI since these symptoms have developed?
  • I did have a post op MRI done in May. Good news was no new herniation. Surgeon thought the MRI looked good and went on to tell me that a study was done that showed people with more scar tissue have less pain & thinks that this issue is blamed when it shouldn't be. Of course he still has no answer or explanation for me. When i saw my Pain Managment doctor recently to inquire about an "Epidural Lysis for Adhesions" procedure, he noted that both fibrosis and scar tissue were on the May MRI report. He's just advising me to wait a full year before considering Fusion with the hope I will heal. Sure would be nice if I could see at least a small amount of progress. I don't want fusion as I know if frequently doesn't work but am wondering if continuing to suffer for that long makes sense and if I should start looking for other opinions soon.
  • Hi there...The great news is that you don't have any herniations....The bad news is that if you are trying to file for disability....then having a good post op report is going to go against you.

    Do you have any Drs. that have written in your medical records that you are completely disabled? You need to have both A Board Certified Neurosurgeon or BC Orthopedic surgeon as well as your Pain Mgmt. Dr. stating that you are disabled from your symptoms and then have to have the tests...like MRIs, nerve conduction studies, or things like this that show items that are on the SS disability list.

    I have recently filed in June so I am going through the process now.

    Now...this is compltely separate from the fact that you are having all this pain. There is no doubt that scar tissue can cause a lot of pain when it tugs/pulls. I have a lot of it from my 3, two-level, cervical fusions, as well as a boat load of adhesions in my abdomen from many years of cysts rupturing and 3 lap surgeries.

    Are you on any nerve pain medicaitons like Lyrica, Neurontin, or Cymbalta? These can be very effective in helping with the nerve pain.

    Or how about a muscle relaxer? Like Flexeril, Robaxin, or Skelaxin?

    Opiates can be a good addition to someone's chronic pain but it only works to "dull" the pain..Make us not care as much. The other two medications are specifically targeting muscle and nerve pain.

    The other part of disability is showing that you have tried or are on various medications and even with those you aren't able to work.

    The part about chronic pain mgmt. is using every modality, not just trying it once and done....but using all of them continuously to put a dent in the pain.

    Everything from exercise, yoga/stretching (this helps the scar tissue), aqua therapy, injections, massage, acupuncture, TENS unit, steroids, and the medications I listed.

    I know you said you have tried these....but I have had chronic pain since my last fusion in 2006 and still do my allotted amount of injections per year, acupuncture each month, massage, TENS unit every day/other day, and then medications.

    I do agree that you should hold off on a fusion for as long as possible as that is only meant to fix a herniation, it's not meant to fix the pain.

    What would you say is your worst pain? Shooting, stabbing, deep ache, throbbing, etc?

    Obviously I am just another pain patient and not a medical professional...so just trying to help with any suggestions or thoughts.

    We can certainly empathize what it's like living with daily pain. It is so hard both physically but emotinally as it changes our entire lives:(

  • thepretendertthepretender Posts: 36
    edited 08/05/2012 - 4:16 PM
    Yes you do need to get on a regular regiment of some nerve med like neurotin, lyrica, cymbalta etc. Those take about a month to build in your system and don't take away all the pain for sure, but are a help. In my experience muscle relaxants aren't all that helpful, but you should try those as well. Also, regularly taking an nsaid, or even try oral steroids.

    I'm post op 7-mths from my fusion and also need to use a TENS unit everyday. It's been vital to my life both pre-surgery and post. Those you can find very reasonably priced online. I purchased mine through amazon or you can just google. You can easily find replacement electropads online too.

    It's really sad how many hoops we have to jump through consistently to still end up living in chronic pain. I would say there is no harm in waiting. My first surgery I had very quickly, the 2nd I waited over a year before I had it done. I hope you can find a way to get your pain somewhat stable through meds, TENS unit, exercise, etc. as soon as possible :)
  • CDW123CCDW123 Posts: 25
    edited 08/06/2012 - 1:00 PM
    With all the PT I have been through no one has ever tried a TENS unit on me. What are they effective for?
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