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Two Surgeons Say Nothing Wrong With Me But I Can Barely Walk

jgb441jjgb441 Posts: 8
edited 10/21/2015 - 8:07 AM in Lower Back Pain
Hi All,
This is my first post here. I have been dealing with back pain now in some form for over 10 years now. in 2005, I had a Laminectomy at L5-S1, In 2014 I had a Microdiscectomy at L4-L5. In between, I have had injections of all kinds, rysotomys and July of 2015 had a neuro stimulator implant put in to try to control the pain. I still get numbness and tingling in my right leg and the pain is still so out of control, it almost knocks me off my feet! My right toe sometimes drags and my leg sometimes gives out from under me. I have had an EMG to check for nerve damage, but it shows negative. The problem is, I now have two surgeons trying to tell me there is nothing wrong with me. When I went over the most recent MRI with the doctor that did the Stimulator implant and told him what the surgeons said, his comment was "are they looking at the same MRI as I am?" He agrees that there is something wrong. Problem now is with the stimulator implanted, I can NOT have a new MRI unless I go through surgery to have the stimulator removed. I don't know where to go from here. The pain and loss of feeling in my leg and back is at the point of being unbearable. Has anyone delt with anything like this before? I'd love to know how others had this resolved. I can NOT be in pain like this any more. Any advise would be welcomed and very much appreciated.


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Is a ct scan not an option for you? When I could no longer have an MRI because of the metal in my spine I was sent for a ct scan. If you're still in pain something is obviously wrong don't let them dismiss you make your drs keep looking until they find what's wrong, get a third and fourth and fifth opinion if you need to.
  • Yes. A CT is an option. I even asked the surgeon if I could get one to see if there is a new issue or not, but he told me it wouldn't show enough. I disagreed with him and he just said that he doesn't think I need a second opinion. Not what I wanted to here of course! I am going to get more opinions until someone tells me what is going on. Just getting frustrated that there are so many surgeons that are unwilling to help. Thanks again for responding. Much appreciated!
  • He doesn't think you need a second opinion? That's a sure sign that you do. If I'm your dr and I'm sure I've done all I can to help you and I'm right about what's going on with you yet your still having issues, I want someone else to look at it, just for my piece of mind. Maybe someone else will see something I missed and be able to help where I can't.

    The voices in your head should be SCREAMING! As should you.
  • Thanks again for a response. I went back to my doctor and told him I wanted more opinions. He is working on that now for me. He actually contacted the last surgeon who said that I didn't need a second opinion. Seems the main issue is that I'm only 40 years old and he says the risks of a fusion or spacers/stabilizers are too high and may out weigh the benefits if they were to say hit a nerve while operating and paralyze me or something. After hearing this, my question now is.....so you're saying I DO need something like a fusion or hardware, but you just don't want to do it because of the risks. There are always risks with ANY surgery. I know that and am aware of what the risks are. In the mean time, I'm just supposed to be in pain and barely able to walk as is. Doesn't seem like the best solution to me. At any rate, I am now waiting to here from my doctor to see if he has any more referrals. Waiting for answers is the frustrating part. As you could imagine. Thanks again for the input. Very supportive and much needed!
  • I had a fusion with hardware this past December. In a way he's right, don't have surgery if it's not absolutely painfully necessary, there should be no doubt that you have no other option. Trust me that surgery comes with not only some risk but also it's own set of painful and debilitating side effects, and that needs to be an improvement over what you have now to make it worth the risk. And sadly even if a dr agrees that surgery is your only option they leave you woefully under prepared for what comes next.

    They like to tell you that it takes only weeks to heal and you will be back to something along the lines of 90% by then and maybe a year for full recovery. Well don't bet on it! First rods, cages, screws...it's not what you were born with so you can expect to never be the same again, not even on a good day. When you immobilize a joint immobility is what you get, that's never going to move again, so "I'm stiff" is no longer a complaint you have. Driving screws into bone, just sounds like its going to hurt in the first place and believe me it does not just when they do it, those screws are there forever and that's how long it's going to cause you at least some aches and pains, woe betide you on a cold day dear. When your other joints have to move in place of one that doesn't day after day after day, it ain't gonna tickle. When you walk with a walker or cane, which you will do after surgery and maybe with a cane forever, shoulders, knees, hips and wrists are going to hurt. There will be muscle spasms, nerve pain and side effects of the medications ment to help those. There is always the chance that the joints above and below the one you have fixed won't be able to take the stress and they may fail too. The surgery may fix what's causing nerve damage but it doesn't fix nerve damage, if that's done then it's done. Fusion surgery is not a cure, it's an attempt at gaining some relief and some is all you will get. That has to be better than what you have now to be worth the risk.

    That being said, knowing what I know now, I would still have had my surgery. That actually is better than what I had to begin with. I got my legs back. I won't be running any marathons or climbing mountains, I won't be picking things up from the floor without a reacher. I will never again run a simple errand without weighing benefits vs. pain that it causes but I can get up from bed all by myself and hobble my way to the bathroom without it being a screaming crying ordeal. I can shower...STANDING! I can sit in a chair and watch my favorite show all the way through without being medicated. I can even have myself happily planted in a chair outside and toss a ball for my puppy to chase. I get to cuddle with my husband again. So for me surgery was definitely worth the risk and I wouldn't give up what I have now for what I had before surgery.

    Weather or not surgery is worth the risk to you is ultimately your decision, an opinion from one dr or one hundred is never going to change that. If you feel that you need it you will keep trying until you get it as you should. But you need to be realistically prepared for what it's going to gain you both the good and the bad.
  • I've never heard it said from someone who has gone through it though. I'm both sorry that you had to go through it and very happy to hear that it worked for you and that you were able to reclaim your life. As of right now, I am mentally prepared for the after effects of what could be. ( of course that's easy to say until it actually happens ). Part of having the stimulator put in is seeing a pain psychologist. He is recommending re-trying stuff like gabapentin and pt. he said to give it a chance and if it doesn't work, he will put another referral in. Believe me when I say I don't want surgery to be an option, but I'm still waiting for some other alternative to start working. Hard to be optimistic any more. I have a we will see attitude about it any more. I am at the point where pain mess barely help and I'm miserable all the time. Sounds like you've been the before, from what you've been through, and fully understand that. Just thinking about what's next when, not if, more drugs and pt doesn't work.
  • purplegirl34ppurplegirl34 Posts: 28
    edited 10/25/2015 - 11:17 PM
    For me lyrica worked better without the neurontin high, I still got side effects, depression and I did get drunk off of it and had some swelling but still better than the gabapentin. At least Im not hobbling into walls anyway. They had to lower my dose and I only take it when the pain is really awful. Lyrica is newer and more expensive and a lot of insurance won't pay for it, if they don't mine was going to be around 480 a month. So if your insurance will pay for it see if your dr will try you on that it may work a bit better for you. With the lyrica I can only take it when necessary with gabapentin I had to take it all the time and got less relief. I was also able to go from hydrocodone 10/325 to 5/325 with lyrica. Over all the pain is still the same I just don't have to be nearly as zombiefied on meds. Flexeril also worked wonders, I can't say up until now I've ever taken a muscle relaxer in my life so I have no idea how others work but I get enough relief to sleep most of the night and it helps that flexeril makes you sleepy too, do have to take it a little early in the evening just to avoid the morning hangover though. And hydrocodone, lyrica and flexeril can be taken together. Probably not all at once, you might not wake up for two days but they can be taken all in one day if you need them. I'm happy with the combination, it's not ideal but I can manage pain on an as needed basis rather than being drugged all the time.

    So at home stuff has helped me a little too, ice, heat and those salonpas patches work on mild muscle aches without the nasty smell of icy hot. My physical therapist also gave me some simple stretches to do at home to help with leg cramps and achy shoulders. Some wedge pillows, a cane, and reacher of course. Don't know if you're a man or woman but just FYI nair comes in an aerosol spray so you don't actually have to be able to bend down to do your legs. A scrubbie on a stick comes in handy too. And they make extra long gripper nail clippers, it's still hard to cut toe nails but it's doable with those. If you're a man and you have room for it, one of those small folding chairs in the bathroom so you can sit and shave and brush teeth might be a good idea.

    If you do end up having surgery or maybe even if you don't, I have no idea just how restricted you are, just as a forewarning learning how to wipe your butt again is gonna be a challenge. If you're a woman there will be other natural occurances in life that, I will not go into here, that will cause you great horror and sadness.

    They just operate on you and send you home, NOBODY bothers to mention those things.
  • It does sound like it is harder for a woman after this type of surgery. As far as the meds go; I am still tapering up to a 1800mg does of gabapentin. I'm only at 900mgs right now and I feel terrible. I wake up feeling like I have a hangover, Foggy all day long, trouble understanding people when they talk to me, trouble putting sentences together sometimes ( took me almost 10 minutes to get this far in this post!) and, luckily, we have a home blood pressure tester at the house for my wife's high blood pressure. I found out that hypertension is another side effect of the Gabapentin, and sure enough, my bp was high! not out of control high, but around 143/97. This is very abnormal for me as my bp NEVER strays from almost perfect. Even when I'm under pressure or stressed. Even before my surgeries, the nurses ask if I knew why I was there because it was dead on perfect. I'm thinking of calling my pain psychologist to let him know how terrible I feel and the fact that it isn't working at all. Lyrica was an option, but he did warn me that most insurances don't pay for it. I didn't realize it was that expensive though! I to take hydrocodone for pain 7.5/325's, but they are barely working for me. I've been taking them for 2 years steady! Going to be quite an adventure coming off of them after taking them for so long lol. ( If I ever am able to stop taking them ). I am all up for trying the conservative rout, but I'm also getting tired of tripping over my own right foot when it stops moving or gives out from under me mid stride! and the pain.....well, I don't have to tell you about that :( I'm glad I found this forum and someone who has experienced what I my eventually have to go through though. My wife is very supportive of this, which I couldn't ask for much more than that! She is awesome :) but it's nice to have the support of people who have been there and know what I'm going through. Thanks again. You are awesome!!! Seems like you have a good husband as well. He stuck through it for you. There's a lot of people that wouldn't. Being on this end of it, I would be there for someone that is going though it. Back pain is no joke, and I think a lot of times, it's just a guessing game as to try and fix it. So bottom line is, right now I have 4 severely herniated discs, nerve issues, and pretty bad degenerative disc issues. When does it get fixed, how and does it ever end!!??
  • It don't end. It gets better or at least easier to deal with, you figure things out sometimes it just a matter of finding a different way to do the things you want. That gabapentin is what makes you all goofy, I was straight up zombie on that stuff. Lyrica can be some nasty stuff too but it's better than that. Find out if your insurance pays for it, if it doesn't check out their website they have a program where they send it to you in the mail free, mine paid for it but I had to help a relative get it free. It was no big thing getting it just a form the dr had to fill out and tax returns showing how it would be a financial burden. For most people thats a bit on the expensive side for meds I don't think most people are gonna have trouble getting it like that. And tell your dr what gabapentin is doing to you some insurance will pay for lyrica if you can't take anything else. And consider one of those Canadian mail order pharmacy services, my mother gets a lot of her meds that way because her insurance doesn't want to pay for her heart meds. If you have a lawyer for disability or workmans comp talk to them about your meds, you would be amazed the discounts they can get you. My husband had a motorcycle accident and his lawyer got us a discount card for his meds that insurance didn't want to pay for and it dropped his total meds from 800 a month to about 70 a month but it was only good at one pharmacy of course for that price we didn't care.
    Where there's a will there is a way darlin.

    And keep your sense of humor about the whole ordeal, it's one of the best things you got!
  • I will have to look into the Lyrica. I'm almost positive my insurance will not cover it, but it's nice to see there are alternatives for payments. You've been a big help. I can't thank you enough. I have tried to maintain a sense of humor through all of this. Just reaching the end of my rope. Just want relief. I don't see the pain doctor till next Monday, but I'll let you know what the next step will be.
  • Its just never gonna happen for me, all I want is management and a best friend who also knows what it's like to be assimilated into the Borge.
  • I guess management is a better word. I haven't had full relief in 10 years. As far as a friend, you've got one in me :) If you ever need someone to talk to, I'm here.
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