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11 Weeks Post L5S1, Pain level increase and pinpoint muscle twitching..

scmgurusscmguru Posts: 103
edited 06/11/2012 - 8:43 AM in Back Surgery and Neck Surgery
I'm 11 weeks out from my L5S1 surgery.. unfortunately, things didn't go really well for me in recovery and I'm trying to deal with the mess that is now my back.

Based on my MRI's a few weeks back, here's where I am at:

1. I re-herniated in at least 1, maybe 2 areas.
2. I've got an excessive amount of scar tissue
3. There is a 5-6mm chunk of disc material wedged underneath my left S1 nerve root.

My pain levels have been going up this month and I'm not able to sit for more than a few minutes w/o pain in my back and legs.

I had a post surgical ESI nearly 2 weeks ago.. The pain went away to some degree, but more than than, the pain was different. The burning went away and was replaced with a dull ache and pain when I would turn to the left etc..

About a week out from my S1 ESI, my pain started coming back..

By Friday, it was back with a vengence and eclipsed my pre-surgical pain levels. Went from a nice 4-5 to 7-8+.

I always take the lowest possible dose and have been extreemely vigilant about logging my pain meds and pain scales in a spreadsheet so I can see how I am progressing over time..

Saturday I was able to lower my pain level from an 8+ to a 4-5 with OC20's + Soma , Neurontin and 550mg of Naprosyn.

The combination of those 4 medications will, at times give me some peace 80-90% reduction in symptoms .. but it doesn't last long.

Sunday was a no go on the meds.. Normally, I felt a 75%+ percent reduction in pain, on Sunday, maybe 30-40% (based on my numerical pain scale logs). Leg hurt, back hurt and the bottom of my right foot felt super tingly and hot at the same time.

I'm most disturbed about the new symptom that has popped up.. I am feeling pinpoint muscle twitching/contractions as well as other sensations all over my lower legs when I lie down and sometimes when I sit.

My calf muscle in my left leg is being deinnervated - aka wasting away.. (confirmed my my EMG testing)

My calf muscle feels like s floppy bag of goo. when I try to exercise (toe raises), it starts spasming in little clusters all over my lower leg.

I call my original surgeons office and they either tell me to call back in 2 weeks or have me schedule an appointment.

At the appointment, I ask questions about my back, my calf muscle, etc, I get nebulous answers and niceities.. ask more questions, repeat.

I leave these meetings with a crushed soul, I'm so scared, I'm in so much pain I can't really descibe it very well, I just know it hurts and where it hurts and when, I know my legs are on fire, I know I can't sit, I know I can't

All of that iformation elicits a blank stare of some kind of banter changing the subject.

I leave feeling lost and empty.. wondering if the Dr. even listens to me.. or cares? I dread what will happen between now and the next meeting..

I'm lost and I'm slipping down this big abyss and I don't know how to keep myself from falling in.


  • scmguru,

    I am having a very hard recovery, as well. I had L4/5 fusion 5 months ago. I also have new pain that started around the 13 week period of recovery. My surgeon is not helpful at all. He will not even send me for MRI. I am fed up with him. I loved him before this. It is very disheartening, and frustrating. Does your surgeon plan to do anything about the disk material he left behind? Do you have an attorney? Is your Dr at fault?

    I don't have any real advice since I am going nowhere myself. I just wanted you to know you're not alone. I hope you can get some help. Dr's seem so sure before surgery, then suddenly clam up when recovery doesn't go text book perfect.

    Best Wishes,
  • Hi there,

    I had tried to send you a PM last night but lost internet connectivity. I don't know that a lawyer will help b/c microdiscectomies come with a failure rate by nature.

    I know you are waiting ot see another surgeon. While you are waiting, I would look for a 3rd opinion just in case you don't like the new surgeon you are planning to meet.

    As for your current surgeon -> can you ask him if he feels that you should see another doctor or pursue a different route. If he doesn't reply, I think you have your answer and then it's a matter of just buying time with him until you find a new surgeon.

    I completely understand your pain.
    I was there not too long ago where I basically spent my days in bed and even that wasn't that comfortable. Of course it added to scar tissue. I was fortunate that I could work from home BUT I struggled even with that b/c I could barely focus from home.

    I will send you a PM later today. Make sure you bring (1) original MRI, Original MRI report (2) new MRI, new MRI Report (3) Surgical Report from your surgeon....to the new appointment.

  • What you both need is a good PM Dr I had a fail back surgery DD and a few more problem.And a pinch nerve. Just last Thurday I went for SCS trial.Before I had trial I could sit or stand more then 15 min at a time. Since SCS trial i am walking 6 to 8 blocks.sitting and standing for two to three hours at a time. I dont if it right for you but I sure would ask about it.

  • First of all, do not give up. You have had a disappointing outcome, and it sounds like your surgeon is not being helpful, but the situation is not a lost cause. I'm not quite clear on whether you have seen the surgeon recently?

    Obviously none of us on the forum are doctors...but it sounds to me like you now know what is the problem. Now you need to find a solution to the problem. If you have herniated discs and an obvious source of compression at the S1 nerve, you have two very obvious likely reasons for your pain and the problems with your calf and foot.

    If I were in your position, I think I would forget about surgeon # 1 (if you have seen him again and the message you get from him is "nothing is wrong...you just need time to heal"). I would think about this as a start-over.

    You will need to be careful how you approach the new doctor as you may find some reluctance for a new doctor to treat you this early after surgery. I suggest you be very careful with your language and avoid blaming surgeon # 1. But, from what you have indicated in your posts, it sounds like you need to get that piece of disc off the nerve. You need another surgeon to take a look and let you know what needs to be done. Perhaps there are other options than another surgery...that is up to the new surgeon to advise you.

    But it does sound like your issues are stemming from that S1 nerve.

    Try not to look back. Now it is time to deal with what you have going on, determining if surgeon # 1 will deal with it or if you need to find a different surgeon. D'Nice makes a good suggestion in her post.

    Try not to be discouraged. Sometimes things happen.
    As unfortunate as this is, you are lucky in that you know what is causing the pain and the muscle loss in your leg, and you can formulate a plan to move forward. Try to keep moving forward, deal with things as they come along and try to keep thinking positively. I know it is hard, but it is possible and you can do it.

    Are you seeing a pain management doctor? While you are waiting to find a new surgeon, perhaps a PM doc could at least keep you more comfortable. Sometimes with nerve pain, there just isn't much that is effective...try to keep walking as you are able. You might also look for a physical therapist or acupuncturist to work on that scar tissue.

    We are here to support you.

  • Follow up...I agree with Gwennie on your approach with the new doctor. I never went to the new doctors saying "the old doctor failed me" or my current surgeon was not helping.

    I essentially said "I had surgery 3 months ago and it seems I've reherniated". I never said when I reherniated, I just said the current MRI indicates I reherniated. Once you are outside of 3-months, other surgeons will treat you. The other thing I did was just let them know that I now realized I was in the percentage that may have on-going issues and felt it was a good time to do a 'reset' and determine what the next immediate step was as well as how the surgeon may handle me if more issues came up in the future.

    It worked out well...I was able to discuss approaches with surgeons and they all told me that if I opted to switch to them, it was important that I understand their overall approach now that it was future.

    My current surgeon discussed many things with me because he understood (probably best) that I was looking to build a long-term relationship. He told me much more than I even asked b/c he said if I switched, I should try to make a decision that I felt good with for the immediate revision as well as any future spine issues.

    One other tip...you have to be comfortable with the choice and I would recommend that your wife join you too b/c having your wife comfortable with the choice is key. My husband and I were both pleased with the surgeon which has made things so easy with all of us.
  • Thanks everyone, it's great to have somewhere to sound off.. keeping this stuff bottled up is a real burden.

    I do have a PM doctor and have an appt for later this week..

    Whether or not the fragment was missed, who knows. I don't think I did ANYTHING that would have broken a piece off my disc to travel that far.

    Maybe it's just a coincidence I never had relief on my left side and that's where the fragment is..

    I want to be very clear that I have never even considered, or would I consider, suing my physician.

    From a surgical perspective, I believe he did the best he could do. It is what it is.

    I believe this is way more of an art, than a science. I suppose that's why they call it the "practice" of medicine. :)

    His staff is really great and are extremely efficient at getting authorizations etc..

    On a personal level, I really like my surgeon, I just don't like the lack of frank discussion and I don't like that I feel like I have to beg for some kind of dialog.

    I'm not sure what the "Standard of care" is, but I'm not happy with how everything was handled post-surgery.

    Moving forward, I haven't nor would I ever "bad mouth" one physician to another.

    I'm simply going to tell them I'm not happy with my results and ask if/how they can help me.

    I KNOW my body and when I tell my surgeon something is wrong, I think they need to listen, rather than just write it off as "normal".

    [1st surgeon opinion]

    My current surgeon isn't comfortable doing a revision to remove the disc fragment because he is worried about scar tissue from the 1st surgery and because my disc is in really bad shape.

    If I just did a revision to remove the fragment, I'll have even more scar tissue and a disc that is still disintegrating, leaking disc material and reducing the foraminal space as it collapses.

    I want to find out if I can get the fragment removed and somehow address the DDD w/o a fusion.

    Before I even consider a fusion, I'm going to get at least 2, maybe 3 more opinions.

    I'm not an MD, but I'm going to go out on a limb here and guess this is what is going on..

    1. The burning I'm feeling in my lower back on either the right or left side is being caused by leakeage of the nuclear disc material containing phospolipase A2 + prostaglandin E2 cytokine, which is irritating the nerve root and causing inflammation. I have a really strong, inflammatory response which does not subside easily.

    This is why the ESI I had got rid of the burning sensation. It both flushed this area with saline (diluting the irritants) and introduced an anti-inflammatory steroid which decreased the immune response and shrank the tissue in that area.

    It's interesting to note, once the ESI addresses the burning sensation, I feel a different kind of pain, which leads me to #2.

    #2 is being exacerbated by my overall loss in disc height (probably over 60-70%), increasing the level of stenosis

    2. My left (and sometimes right) leg pain, bi-lateral positive straight leg test.

    Straightening my left leg, in particular causes my nerve pain to go through the roof. It will start about a minute after I straighten my leg or bend forward in some cases and it lasts for hours.

    I will bet, this is the result of the disc fragment under my S1 root, pushing on it and irritating it. (Electrical/nerve type pain).

    I'll let you know what the professional opinions are as I get them and we can see how "close" I was!

    My 1st appt is tomorrow, I'll show up with all my MRI's, Operative Reports, previous case history, a list of questions and a great attitude.

    I'm really hopeful that I can get some answers over the next couple of weeks.

    Thanks for all the support everyone..

  • Your assessment is interesting.
    I wouldn't say burning is caused by one thing and pain by another.

    The reality is, you are correct about the 'practice' of medicine. With the Micro-surgeries, they are working with restricted view. My current surgeon does Minimally invasive Fusions but said that going in, he makes it clear that he may need to switch over if he feels he cannnot see all the disc to clear it out.

    I don't think you did anything either.
    I don't feel I did anything. It is very possible that another piece broke free after the surgery and before healing completed. It is also possible another piece was already free and just out-of-sight.

    As for your surgeon's concern about scar tissue - he is being honest. Scar tissue is a concern. My current surgeon did a lot of consideration on if he would use same incision for the revision or not b/c of scar tissue and possible irritation to the nerve and also tougher to 'dock' the equipment on the side that already had bone removed. He ended up using the same incision so that I wouldn't get scar tissue on the other side but he also used special nerve monitoring equipement to ensure that he could work through the scar tissue.

    As for fusion vs. revision...tough call.
    The disc isn't "leaking" out. It's actually crab-meat like material. I have very little disc left but my surgeon felt as if my spine was structurally sound and that my only isssues were the new herniated piece and DDD. He said people can live years with that. The key was doing the surgery, having me take extra pre-cautions on activity, and planning on several follow ups. He made it clear to me before the surgery that I may need a 3 and 5 month post op visit b/c I would progress slowly. He also told me things to look out for in regards to being alarmed post op.

    You are wise to speak to a few doctors before proceeding with a fusion b/c you already have some great questions.

    Your story sounds similar to mine. I liked my original surgeon but I struggled with his ability to listen to me vs. tryinig to write me off as a "surgery that should have been gratifying". While I was glad he was not alarmed and took appropriate steps to treat me. Remember, no doctor is going to tell you their 'limitations' but they will tell you why they are taking one approach over the other.

    It could have to do with training, experience, other resources available to them (such as nerve monitoring at the hospital), your situation, etc.

    I would venture to say that there is no wrong answer in regards to approach or choice but I totally agree that you need to understand your options.

    Tonight I will PM you a list of questions I took to my doctor if you think it will help.

    The most difficult part is the waiting and research b/c I know you want this fixed. Trust it will get better.

  • My increased leg pain was a combination of things.
    It started with the 2nd piece of disc but then got worse as I became less able to walk without pain. Essentially scar tissue combined with the piece of disc was making it impossible for the nerve to move out of the way. Essentially it was trapped from both sides (scar tissue and mass) where as before, it was just trapped by the mass on one side.

  • I'm sorry if I sounded as if you SHOULD sue your physician. I would never sue mine. Unless I felt his skill as a surgeon was the cause of my pain. I seriously doubt that is my issue.

    I feel the same as you, I cannot get a dialogue with him since the new issues arose. I feel he possibly worries about lawsuits or he really thinks nothing is wrong and he has done his "part". Either way, we are in position to start over. I have never badmouthed one Dr to another, that's a fast way to get nowhere. It sounds like you know what to do and you have a plan.

    Best Wishes,
  • No worries Trasee.. I didn't think you wanted me to sue.. :)

    Thanks for the kind wished everyone.. I've got my appt tomorrow AM and will report back.

    Fingers crossed.
  • Just an update.. met w/ 1st MD..

    He agreed there is at least a 6mm chunk of something under my Left S1 nerve root pressing on it and my nerve is extremely unhappy about it ("swollen and very angry looking".

    He daid due to the condition of my disc, he doesn't feel just going in and taking out the chunk will give me the relief i want..

    Removing the chunk "may" help with the radiculopathy, but my disc is shot and will keep falling apart.

    As it does, the disc will keep leaking prostaglandins which will cause more inflammation and my back pain won't go away.

    He said I want to get the surgery sooner rather than later because the longer I wait, the worse and more dense the scar tissue will get which makes the surgery a lot harder.

    He recommended a TLIF due to the following:

    1. It is unknown whether the chunk under my S1 nerve also has scar tissue binding it to my S1 nerve.

    If he does an ALIF he wouldn't feel comfortable pulling on the disc fragments from the front in the event it is bound to the S1 nerve and damages it.

    2. Said an ALIF/PLIF combo is heavy handed and there's no need to put my body through that much surgery.

    With a TLIF, he would do remove 1/2 my facet joint and get in there and pull all the bad disc material out.

    He normally replaces it with plastic or ceramic (?!?)<-- thought this was odd because I've heard that bone or BMP is the standard these days.

    Said my down time will be 2-3 days in hospital with 2 weeks no work and PT starting on week 3.

    Said I'd be in pain for a week or so, but it would be surgical pain which is more manageable than nerve pain and it will go away.

    Also said the fusion on the L5S1 is a "good" place to have it because it won't really inhibit my movement/bending because of how low it is.

    Well, there you have it.. Will update after #2.
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