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Laminectomy/Discectomy VS Percutaneous Disc Decompression ADVICE NEEDED ASAP

Michelle_MaeMMichelle_Mae Posts: 6
edited 06/11/2012 - 8:02 AM in Back Surgery and Neck Surgery
So this is my story, looking for any advice and would love to hear from people that have been through either of these. It is coming up so fast. While I am needing some relief and am scared beyond belief. Anyways sorry this is so long...

I am 26 years old (just turned 26th on the 6th) and have suffered with back pain for many years (on top of other health problems) now but it has been severe since March '11. I was told my l4/l5 l5/s-1 were mild herniations a few years back (DDD) and mild Scoliosis. When this pain started I decided to first try a chiropractor so was seeing one 2x a week from April until around October of last year. He did adjustments, graston to work out the trigger points, interferential unit, etc. Nothing helped. Then in late July/early August it got even worse so I had an MRI to find out that the herniations which my chiropractor believed had healed and my issue was mainly related to muscles were severely herniated and severe spinal stenosis of the central canal. It mainly affects my left side. My butt and thigh have a very strong sharp burning type of pain where it almost feels like I am sitting on a tennis ball if I try to sit up. Then the back of my thigh and outter thigh have a burning ripping type of pain almost like a pulled hamstring. My calf feels like a bad cramp/someone squeezing it as hard as they can with little areas of a tingling sensation. Then my left foot feels like I am stepping on thousands of needles in the heel area, all toes have the numb tingling feeling and there is a sharp pain around the bottom part of my ankle and in the back of the ankle. Around late July I started having pain on the right side too, but nothing compared to the left it's just in my butt/thigh a little on that side. After pushing for my doctor to also take a look at my butt they did an mri and also found that I have a tumor in my femur. All doctors are saying that they don't think it is related to the pain though, and don't seem too concerned with it. They did follow up MRI's and Xrays on it and think it is fibrous dysplasia. Anyways back to my back. So after the MRI I was advised to see a surgeon. So after looking around I asked my primary care physician to refer me to one I found that had really good reviews. He also referred me to one at the hospital he works at. So the first one was the one I asked to go to. Well I met with his nurse practioner and was told that he looked at my mri and wanted to do a laminectomy on one level and they scheduled me and told me that he said he would meet me in post op. Post op?! The more I thought about it the more uncomfortable I was with that so ended up canceling the surgery. No way would I feel comfortable having back surgery by someone I have never even met. All of my questions and concerns were brushed under the rug and I was told to ask someone in pre op the morning of. Then I met with the second ones nurse practioner. I honestly don't know how this woman has the job she does. She is one of the most incompetent people I have ever met. I was told since it wasn't affecting both of my legs and since I still had control of my bladder and bowels that I didn't need surgery and told me to either get epidural steroid shots or oral steroids. I didn't like that idea after losing 60lbs, getting off of all diabetes meds, and the fact that the shots didn't help me a few years prior when my pain wasn't even that bad. Then again if I could avoid surgery I was all for that. Then a few days later I got a call saying that the actual surgeon looked at my MRI and said that I needed to get into see him immediately because it was only a matter of time before I lost control of my bladder and that could cause permanent damage. So scheduled an appointment with him. He was very soft spoken and said he generally doesn't like to operate on someone my age, but it is pretty bad. He said he normally has people do they steroids first, but since it had already been going on as long as it had he doubted they would help me, but if I wanted to try that first I could. While this surgeon explained things and was very soft spoke I don't feel he was completely honest. When he was telling me the risks involved including nerve damage I asked if he had that problem with any of the surgeries he has done and he danced around it and finally said "Well not any that didn't already have nerve damage." Then again when I asked if he did minimally invasive he wouldn't give me a straight yes or no answer. I had to just finally assume he was saying no as he said it was just a marketing scheme. If he operated he wanted to do a laminectomy and discectomy on both levels. After that I got in to the first pain management doctor and was told I was way beyond any relief an epidural could do. So then I went to another pain management doctor again in hopes of an epidural. Again she wouldn't do it and referred me on to a surgeon at the hospital she works at. The third surgeon was a young arrogant guy completely opposite of the 2nd surgeon. I asked him numerous times how long he has been doing this and everytime his response was "long enough!" While he was honest it was almost a little too honest. He asked about what happened with the previous surgeons and I told him. He said that anyone that says they havent caused nerve damage is lying to you. I appreciate that honesty but got the feeling like it was no sweat off his back and if that were to happen well thats just the risk I was taking and he wouldn't feel bad about it at all. He said if I wanted he could refer me on to someone that would definitely give me the steroid shots or he could operate on both levels. So the 3rd pain management doctor ended up doing a few steroid injections. The first one was in November. He did a transforaminal one which I had never had. Then a week later I went in for another. This time he did a caudal injection. Holy moly I wasn't expecting that! He couldn't get the med to go in the epidural space so ended up just doing the regular disc epidural. Unlike my previous injections these ones hurtt but I actually did get some relief which was great. If only I didn't have the side effects from them and if they lasted longer. He also have me pain med which made everything a lot more tolerable. I felt like he knew what he was doing and was actually pretty hesitant to give me the shots and really felt I needed surgery. I explained to him my experience with the surgeons I met and my trouble of finding others that would take my insurance and asked if he would refer me onto someone else. So there were 2 surgeons at his hospital. We made sure they accepted my insurance, which they did and he said repeatedly reminding his nurses to get me into either of them whoever could see me the fastest. I waited for about a week in a half and hadn't heard anything so started calling around. The surgeons office said they didnt recieve the refer yet. So after playing phone tag a few times still didn't hear anything for a while so had to start in again. By this time it was December and as of December 1st they stopped taking my insurance. Just freaking wonderful! After the steroids wore of it gradually got worse and worse and my search for another surgeon wasn't going anywhere. Then I finally had to get back in for hopefully another steroid injection in March. He did the injection but jumped all over me that I hadn't had surgery. He didn't understand my concerns about the surgeons of course being a doctor himself. I had asked at one of our prior appointments if he would do one of the smaller surgeries that I noticed he offered on his website and he said no I didn't qualify for those. Well this last appointment in March he said that this would be the last injection as I will not be able to get long term relief from these but there was another option Percutaneous Disc Decompression. While he keeps you waiting, isn't the best listener, and had a terrible bedside manner I actually trust him more than any of the surgeons I've seen so I said yes I was definitely interested in giving it a try. So I was told if I didn't hear anything in a week to call. I called and was told the scheduler hadn't gotten to it yet. So waited and waited then called again. She wasn't in that day so I had to leave a message. I still never heard back, so called again (this was 1-2 weeks ago) and was told it was still in her stack of papers which she hadn't gotten to but once she did I would hear back. Well by this time I have been in excruciating pain. I can barely get up out of bed to go to the bathroom, can't even sit up to eat, not sleeping good, and my pain medicine isn't even beginning to touch the pain. I finally got my point across. Insurance approved it so then just had to wait to find out where they could do it. The first hospital said they wouldn't get enough $ back so then she said she was waiting to hear from the dr. In the meantime I had to call his office to speak to a nurse about possibly calling me in oral steroids or something to help the pain until I could get surgery. Again long run around and excuses and lies. She finally called back and said he wouldnt call me in steroids and if I wanted stronger pain med (I didn't thats not what I was asking for!) that I needed to go through my regular dr and that he could sendme for another surgery eval somewhere since the percutaneous stuff was taking so long to be handled. Well I called around and tried to get back into the first surgeon as even my pain management dr said he was the best so figured I'd give it another try but I wanted to meet with him not the nurse practioner. He is booked out til August so there is no way I can wait that long. The other surgeon there had openings though. I was hesitant since I haven't heard the best about this one but figured I would give it a try. So they scheduled me for the 30t for an eval but said that since my MRI was in August and since something has definitely changed they would like a new MRI. So went through reg dr to get orders in for a new MRI. In the meantime heard back from pain dr’s office and they scheduled me for the percutaneous one on the 24th. I have to finish my antibiotics (for another nightmare with my mouth I have been dealing with for 2.5 years now) and be off of them a week before they can operate. Then I have to get blood work also. Spoke to pain dr’s nurse again a few days ago and he wants a new MRI also. So I’m scheduled for the MRI tomorrow. I’m dreading that. I am all worked up about how I will even sit in the waiting room as I can’t even sit up to eat I am in so much pain. Then guess we will go from there. I am so stressed out over all of this and not sure which way to go. I was toldthere is a 50/50 change the percutaneous surgery will help. I can’t find much about it online. I asked if it didn’t work could I still do the other and was told yes. I don’t understand why they both say “6 weeks” for recovery if this involves so much less. The last surgeon said minimally invasive wouldn’t be an option for me since it is so severe and he wasn’t willing to risk causing damage just for me to have a smaller scar, so kinda worried if that will happen with this? I was told this would be conscious sedation unlike the other surgery where I would be completely out. Guess this could be good or bad. I’m scared since I have no idea what to expect with this. It seems like major surgery would be more likely to help, but also more risky and since I don’t even know if I will feel comfortable with this surgeon. On the website I noticed he is board ELIGIBLE not certified like others so not really sure what to think of that. So I am just looking for any advice possible and to know what to expect. Sorry this is so long. Thanks in advance...
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Comments

  • Hi,

    Your post is very, very hard to read as there needs to be paragraphs when writing something that long and detailed.

    Seems like you have a real mess on your hands. I've not heard of the percutaneous surgery but it sounds to me like it is not what you need but may be being done because you are asking for it.

    I would try to find yourself a teaching hospital. They take most insurances and are less concerned with the money aspect. They generally have good Dr.'s also. You may have to go out of your immediate area.

    The problem as I see it with minimaly invasive surgerys is that the Dr. has a hard time seeing what he is doing and is very limited to what he can do. It does have its place but not in a major spine surgery in my eyes.

    Maybe try to have your GP Dr. call to get you into where you want to go. If you are on good terms with him he should be willing to do that for you. I also agree with you that you need to see the Dr. and not the NP. The Dr. has to be board certified in my eyes. Also don't get into what other Dr.'s have told you. You are there to get his opinion of what needs to be done. Your question about nerve damage during a operation is one that everybody that has had to have back surgery has to deal with. It is just part of the risk. Most Dr.'s are not going to discuss with you what has happened to them in prior surgeries. You need to find a Dr. you can live with and put your trust in him and do what he says. The idea is not to pick them apart but try to judge what they are telling you is needed and how that fits with what you feel and know.

    I wanted to resond to other questions you asked but I'm not going to read through your post again to find what it was.

    Hope you are able to get some more answers and some relief to your situation. and that your new MRI spells things out better.
  • Advise ASAP? Your surgery will be over by the time i finish reading all that ! Lol

    If you are not sure about the procedure get another opinion, Its beter then rushing in to something you are not sure about,

    Good luck,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I apologize my post was so very hard for you to read. Nobody was forced to read it though. I'm definitely not here to have the way I wrote something picked apart though. I guess if it bothers you that much, that you can't help without being nasty, then move along.

    The Percutaneous Disc Decompression is where they go in through a cathedar with a special tool to get rid of some of the nucleus of the disc so that the herniation can be reabsorbed. My pain management doctor brought it up at the last appointment saying that it was more likely to give me long term relief rather than more epidurals. Considering I don't feel comfortable with any of the surgeons I have met with, and do trust my pain doctor I am definitely considering it.

    I have called the teaching schools, and unfortunately they don't take my insurance surprisingly. I have also called numerous places outside of my area. I can't remember exactly what it was called, but I was told there is a perimeter for how far away insurance will cover. Not really the issue.

    My PCP has referred me on to each place I have asked, no problems there. I agree with you 100% about seeing the Surgeon. Unfortunately I don't make the rules though, and have found that most places do send you to the NP first.

    Yes, I am very uneasy about the whole board eligible thing.

    The only reason I have gotten into what the previous surgeons have said is when asked if I had been to anyone else and what they said. I try to keep that to a minimum. I have enough sense to realize I am there for their opinion not to discuss what others said.

    LOL I understand there are risks. Most doctors may not discuss what has happened during other surgeries, but I think that is a valid question regardless. I don't feel I picked what anyone said apart, but I won't jump into a surgery if I'm not comfortable with the person doing it. The severe pain makes it tempting to at times because I want and need relief, but I would be pretty upset with myself if I had just jumped into it, and lord forbid ended up paralyzed or something from going with someone I didn't trust.

    I was just looking for advice from people that have had either surgery or atleast know about the two. I didn't post to have "regulars" pick my post apart and have to defend everything I said. Anyways thanks.
  • Hmm well again nobody is being forced to read it. Thanks anyways.
  • What a nice response from you. Tell me to move along because I said something about basically a 1 1/2 page sentence. My, My. By the way your response was much easier on the eyes.

    Doubt your going to get much help here as most are not going to spend the time trying to read your post AND we are not allowed to make comments reguarding treatments.

    I'm not a regular but WAS trying to help you out and have no interest in being nasty to you. Sorry that you took my post that way.

    Best of luck with your deal.
  • Nobody is picking apart the long post. We just comented on it is all,
    No big deal,

    If they can save the disc i would go for it ! If it fails they can still do the more invasive surgery later,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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