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Dr.'s are not helping

LuckyLLucky Posts: 9
edited 06/11/2012 - 8:52 AM in Back Surgery and Neck Surgery
I am 32 years old, 6ft, 150lbs. 10 years ago I was in a car accident and received L4-5,L5-S1 disc bulges. I had pressure on the nerve roots and both legs were affected. Tried PT 3 different times, 2 epidurals and had no relief. I was referred out for surgery. With the odds not in my favor I did not do it. I ended up with DDD in the two discs, an unstable spine and scoliosis. So 2 years ago I started taking hydrocodone 5-500 3x and 350mg Soma 3x a day. It helped and kept me from having spasms.

6 months ago I was in another car accident and now I have L3-4 mild annular bulge
L4-5 broad annular bulge, annular rent, thickening of lig. flava, moderate loss of disc space,DDD, pressure on nerve root
L5-S1 broad annular bulge with severe loss of disc space, DDD, pressure on nerve root
T2-3 mild bulge
T3-4 large annular bulge causing a flattening and straightening of spinal cord
C5-6 mild left paracentral bulge

I have had 3 neuro-surg want to do a L4-S1 2 level full fusion and one neuro-surg that wants me to avoid that at all cost because of L3-4 that already has a bulge.
I went to PT for my neck for 2 months 3x a week.
No Dr. will even talk about my Thoracic. After I kept pushing for answers on it I was told that there is only a dozen Dr.'s that will touch a disc in the upper thoracic area and there is a extremely high risk of death with a surgery.
So for the last 6 months I can't work, have extreme pain in my neck upper/mid back, lower back, chest and legs. For the last 6 months I have been taking 5mg Oxycodone 4x, 350mg Soma x3, 25mg amitriptyline x1.This can only bring my pain down to a 7 or 8 if I sit around the house and do nothing. I am going to PM but would like a more permanent fix. I don't want to make a wrong decision and have the wrong surgery that I will have to deal with for the next 40 years. I have thought of a 2 level ADR at L4-S1 and hope L3-4 does not get worse. Not sure if a Dr would do it either. Not sure what to do with the Thoracic and I now have atrophy in that area. I just had an EMG and the Dr said I have multiple pinched nerves(I could have told him that.) I will get the full report this week. My pain meds are to weak, I feel my Soma should be x4 day and I don't think the nerve meds are doing anything. I am going to talk to my PM Dr this week.
Any suggestions on what route I should take? All the Dr's I've seen try to pawn me off on another Dr.


  • Lucky, You need to have a frank discussion with your PM dr., Now, I am not ALL about pain medication, but I do think that they can help and I don't believe in letting a person suffer whenever there are medications that can help the situation. Dependence has already been achieved, so as long as you understand that taking your medication only as prescribed this should not be a problem. Now that is one thing, however you should also try the TENs unit (it might help somewhat), PT, walking and anything else your Dr suggests. Ask him/her for suggestions, but of course you will need to get your pain under control before PT (I did anyway). Maybe looking into these treatment options and jotting some options down so that you can offer suggestions at your next appt. will show your Dr how serious you are about your situation.
  • I have tried TENS on my neck and thoracic. Did not help at all. My PM Dr said she was going to set an appt so I can try the TENS on my lumbar. I spent 4hrs in the E.R. two days ago and almost had to go back again today. (They gave me a shot of something that they said was equal to 15ml of morphine) I only need to make it two more days till my PM appt. I plan on asking for 20mg Oxycontin 2x, 5mg Oxycodone 4x, 350mg Soma 4x and my nerve meds to start. I have done lots of research over the years on surgeries and pain meds and I know that all the oxy's are known for abuse so I have never asked my Dr for them. I no longer can bite my lip. I feel what I'd like to start with is quite modest. With the 3 discs in my lumbar I think a fusion would be a bad idea. I feel I have to do the research and make things happen, when I ask my Dr's for advice the say nothing.
  • I plan on asking for 20mg Oxycontin 2x, 5mg Oxycodone 4x, 350mg Soma 4x and my nerve meds to start.
    Do you really plan on asking your Dr to write you Rx's for these medications? I would not advise you do that, but of course you do what you think is best.It is never a good plan to ask for prescriptions or opiates by name as this can indicate drug seeking behaviour. I'm not saying that it is and I understand doing research and going into a Drs office with ideas.. but whenever it comes to controlled substances, most Drs don't look at this the way that we do. We are looking for pain relief, but our Drs are watching for everything. They have no choice because there is a drug epidemic in this country. My point is that it is best to let your Dr know how your pain is being managed (or not) and leave it up to him to decide the best course of treatment.
    Have you had any ESIs, TPIs or nerve blocks done?
  • Hi there,

    Just curious, the surgeon who does not recommend the 2-level fusion...what does he recommend to help you? He seems to have a good reason to avoid the fusion but he should be offering an alternative (either pain mgmt doctor or another course of action).

    As for the surgeons who do recommend 2-level fusion, why aren't they worried about the level above it? What risks did they mention about the fusion?

    Have you considered speaking to a higher profile clinic that has a spine speciality division - like Hospital for Special Surgeries or Cleveland Clinic? I'm not sure if these will be blanked out by the moderator but I do know that at the cleveland clinic will (for a fee) provide a remote diagnostic and answer questions as a '2nd opinion' when you are not sure which direction to pick.

    Thoracic is tricky. And, it could be that your pain there is from compensating from your pain above and below. I had chest pains and actually thought I was having heart attack symptoms. I learned that my chest pain was from my neck and back pain. As soon as those went, my chest pain did better. I can understand why the surgeons recommend trying to help you in other areas.

    On the meds, you need to let the doctors prescribe what is best. But, perhaps you can ask them about meds for blocking nerve pain like Lyrica.

    Think about what your goals are, what you are willing to risk. You want to wait until someone can suggest a more permanent fix but you are doing so at the risk of becoming addicted to pain meds, doing nothing and being in more pain, and having your world close in on you. I'm not advocating surgery but you do need to find a solution you are willing to live with.

    I opted for a microdiscectomy at L5S1 (my L4 is very weak too) and while it failed, I had a revision. I'm not 100%. I'd say I'm about 60% better and that's a world of improvement over where I was. I'm working again, walking again, and only rarely take prescription meds (plane rides tend to put my back through the ringer so I end up needing a muscle relaxer after a ride longer than 3 hours on a plane).

    I think it's worth listening to the results of the EMG and see what the doctor says. If you are in the US, a 2-level ADR will not be approved. Heck, most 1-levels are not approved. So you need to decide if you are willing to head to Germany or somewhere else and pay out of pocket.

    I sense a lot of frustration from your post. You are not alone. Back issues are tricky. You have to educate yourself and learn what you can but know that at some point, you have to feel comfortable with your decision. Unfortunately, no doctor is going to tell you 100% that a fusion will work. They will give you both sides and let you decide. And that's the frustrating part. Backs are not like tonsils.....to be honest, I wish I could go back in time and I can't. I'm sure you wish the same.

    The only advice I can give you is "have a plan".
    It gave me peace of mind when I got hurt. It kept me focused on what the final 'straw' was before I would go for a fusion and not regret if it didn't work. Luckily, I'm not at the fusion just yet but I know I may have to face it some day.

    Oh, the other suggestion...think about which doctor you trust beyond the immediate situation. Build a relationship with that doctor that you trust has your best interest at heart.

    Let us know what the doctor suggests from the EMG.
  • I do plan on telling my PM Dr what I think will work for me and of course they have the final say on what they will give me. I have never asked for any specific med and I don't want to go another 6 months of trial and error before I get my pain to a manageable level. As of now my pain meds can only put my pain level in the 7-8 (maybe a 6 for an hour here or there) if I lay around the house all day. Any standing, sitting or walking will quickly elevate that to a 9 very fast. I have two kids 1 and 5 years old. I cannot get on the floor and play with them. My 5 year old will be playing baseball and soccer this summer and I would like to be able to go and sit at his games.

    The surgeon that advised against the 2 level said I should go to PM for the chronic pain. He thinks the 2 level would lead to damaging my L3-4 enough within 1-2 years or less and I'd be looking at another surgery. I assume it would turn into a 3 level fusion and I know from my research I don't want to be there. If I was 52 years old (not 32) I would most likely do the fusion and hope for the best. I feel I can't make a wrong decision, have the wrong surgery and have to deal with it for the next 40 years or so.

    I really need to find the best solution for my problem. I get frustrated when one Dr says that a fusion is my only option and that’s because that’s all that he does. So he won't tell me I would be better off with a surgery that he can't do but I can go to "blank" because they do it there.
  • Lucky, it sounds you have not found the surgeon that you trust just yet.

    I chose my surgeon even though he won't do ADR. Why? I asked him why he doesn't do them. He was very honest with me. He said (1) most insurance in the US doesn't cover it (2) he said I'm too young and (3) he said it's a very big/risky surgery in his opinion.

    I gave him a chance to explain. He has a colleague who does them and I asked why he wouldn't refer me. But he told me I could go see this other surgeon but then stated why he didn't feel I was a good candidate.

    I'm too young (40 when I was facing this). He said that while they do ADR in Germany and other countries, the statistics are still not available on what happens when the artificial disc fails. So unless he could be sure that I had less than 20 years to live, he wouldn't risk that surgery. He did say that it is likely technology will advance before it fails but he didn't want to take the risk. I respected that insight.

    He also told me ADR is through the front which means you need a vascular surgeon in addition to Neuro or OrthoSpine surgeon.

    His willingness to answer the alternatives was why I chose him. I also chose him b/c out of all the doctors, he was the most conservative and had a good reason for his approach. We tried 'nothing' until that was not working. I did the revision MicroD and and asked him "when do I know that fusion is my only choice?" He said in his mind, if I stay the same or better...no fusion. If I get worse and find myself on pain meds all the time and fairly bed-ridden, then we will talk.

    I really hope that you find a surgeon you are confident with. It sounds like the one that is sending you to PM is the one you are most trusting of. Did he give you advice on when the Pain Management route is no longer worth the risk/downside vs. the fusion surgery? I would ask him that. Did you ask him if the disc above will fail even without the fusion? I just wonder if this surgeon you've built a trust with has indicated at what age or pain point, the risk might be worth taking.

    It's so tough. Fusion is permanenet and there's no going back so I understand why it's not an ideal solution just yet. It's exactly how I felt.

    Good luck at the PM doctor.
  • Oh...the other thing on ADR is that my surgeon felt that it could be an option for me later down the road. He said technology is always advancing.

    Another reason I chose him is because he was trying to treat me without a fusion to 'buy time'. He said his goal was to never see me again (LOL). But in reality he said he was trying to buy time for me so that I would have other options if my back got progressively worse. He did say a fusion is permanent and there's no going back. So if he could buy me 5 or 10 years, technology might advance to give me some other options like ADR.

    So, that being said, I can understand why you are trying to 'buy time' to find the best solution for you in the long run!
  • No, I have not found a surgeon that I trust. One Dr ,that wants to do the 2 level in my lumbar, I asked him how long would it take to damage the disc above (my L3-4) as I know that this is common with a multi-level fusion in the lumbar and my L3-4 already is bulged. His response to my question was "I wouldn't worry about that. So, when do you want to do the surgery?"

    Now I know that most of you guys/gals know the statistics of a multi-level fusion and the effect on the discs above and below. So right there I scratched this Dr off my list of choices.

    And as of now I have not found a Dr that will treat or even discuss my thoracic discs. I don't like the idea of having atrophy in my back around these discs and the flattening of my spinal cord.

    I live in Northern NY and here or Syracuse it seems like there are not any Dr's that can/will treat my thoracic.

    A friend of mine had a bad snowmobile accident 6 years ago and he tore the nerves that go to his arm out of the spinal column. He could only find 2 surgeons in the country that would do surgery to try and reattach. He went to John Hopkins University. Surgery went good and he is still doing PT. The Dr told him that it could take the nerves 8 years to fully heal. He can move his arm, hand and some fingers. He still gets better every month, slow but working.
  • I too, have heard thoracic levels are tricky, and most NS will only touch them in circumstance of impending paralysis.
    On your question of meds - I'm curious how you came up with the prescriptions you want to ask for - 40mg Oxycontin ER plus your current oxycodone plus increased soma. Have you had prior experience with Oxycontin at all? Remember, whatever dose you will "start" at, for extended release, you will likely eventually become tolerant to, and if you are considering the option of long-term pain management in place of surgery, this should be considered. Let your doctor decide what ER med and what dose you should start at (for example, many pain docs prefer to recommend ER MSContin before Oxycontin- since the generic MSContin is cheap, whereas Oxycontin is $$$. Also, if the game plan changes with doctors, you want to have a medicine that will still work on post-op pain. Oxycontin 20mg twice a day is by no means "extreme" but what I am trying to say I guess is it may be more than you need. Narcotics/opioids are generally not considered to be effective for nerve pain, and although amitriptyline is good for this - you really are at the low end of dosage. I agree with DNice about talking with other options; sure you can go with increasing the amitriptyline but if you have too many side effects, neurontin & Lyrica are effective. On the muscle relaxer, different relaxers have different effects on different people, but I personally have found tizanidine to be a better muscle relaxer for me personally that carisoprodol (Soma) (as long as their are no pre-existing liver issues), plus there is some concern/stigma out there that Soma can be "addicting"...I'm not preaching its the wrong thing to do for you - just telling you what worked better for me.However. I have found tizanidine to be very sedating for me, so I only take it when I am sure I am done driving for the day.
    Anyway, welcome to Spine-Health.
  • I have tried many muscle relaxers including tizanidine and soma is the only one that seems to work for me. I have lots of pain in my spine, in my thoracic and lumbar area. Also in my lumbar I was told I have bone on bone contact. The way I came up with the 20mg oxycontin is that I've been taking 5mg oxycodone 4x day for a while. So at 20mg per day ,and that is taken in a 16 hr period(when I'm awake), it can only bring my pain down to a 7 if I am laying around the house. So I thought 20mg of oxycontin every 12hrs then the 5mg oxycodone 4x for breakthrough. I think with this combo I might keep my pain down to a 3-4, which I have not seen in the last 6 months.
  • SpineAZSpineAZ WiscPosts: 1,084
    There are many long acting medications that may work well along with medications for nerve pain if that is an issue (neuronton, lyrica, etc). My PM and I worked together on a combination of MS Contin for long acting, percocet for break through pain, Soma as needed and Neurontin 3x a day. I have occasionally seen ads for medication in Pain Pathways magazine and I'll ask my PM doctor, but I let him pick the best options.

    When I had my recent surgery (I have very lax ligaments thus my spine doesn't hold together well) I always tell my surgeon "do extra levels if needed". Surgery is a personal choice but I'll do any surgery any time to relieve any amount of pain and dysfunction.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • So today at PM my Dr told me that I would have to go to my reg. Dr and have him write my scripts. She told me that they won't write pain med scripts for more than 2-3 months. She said that they mainly do injections there. ???? I told her that my reg Dr and N.Surgeon told me to go to PM for my meds for chronic pain. She also told me that if she did Rx for Soma she would only do 2x day. So I explained how I have been on Soma 3X day for the last 2 years and my Friday night visit to the ER the Dr did Rx for Soma 4x day and told me to have my PM Dr do the same. She asked how my pain was and I told her that my 5mg oxycodone 4x day could only bring my pain down to a 7 if I do nothing but lay around. She said she would not give me anything stronger. She asked about my pain and I explained that it was not all nerve pain. I have had 2 N.Surgeons tell me I had an unstable lumbar spine with bone-on-bone contact. I explained I had DDD in two discs and 2 annular tears. She told me she didn't think my spine was unstable because the surgeons would not give me the option of a fusion and it would be necessary as I could fall and become paralyzed. ???? This is the point where I lost it and became to bitch. After my 15 min rant she said she would do soma 3x, 5mg oxy 4x, 50mg amitripyline 1x.
    So, I guess I'll go back to my Dr and say the hell with PM as this is the only one within 1.5hrs from where I live.
    She also told me that she didn't understand why I thought Soma worked. She said it doesn't and it was all in my head. She also said the same about Oxycodone. She said there were lots of pain killers that REALLY work. ????? WTF I told her that I do research on any med before I take it and she thought that was a bad idea because then I would talk myself into "THINKING" it will work or won't. She said I probably do to much research and over analyze. WOW!! What a day.
  • Lucky said:
    So today at PM my Dr told me that I would have to go to my reg. Dr and have him write my scripts. She told me that they won't write pain med scripts for more than 2-3 months.
    Some PMDrs get you on a schedule and then fax the report to your regular PCP, who can then pick up the management of your pain from there. It seems that some Drs are happy just getting your pain/medication validated by PM before they feel comfortable continuing your treatment.They can also cover the injections that your PCP can't (or doesn't) do.
    Lucky said:
    Friday night visit to the ER the Dr did Rx for Soma 4x day and told me to have my PM Dr do the same.
    Most PMDrs don't take kindly to another Dr telling them how/what to Rx their patients, as a matter of fact this may have the opposite affect of that which you might have been hoping for.
    Lucky said:
    She asked how my pain was and I told her that my 5mg oxycodone 4x day could only bring my pain down to a 7 if I do nothing but lay around. .......... This is the point where I lost it and became to bitch. After my 15 min rant she said she would do soma 3x, 5mg oxy 4x, 50mg amitripyline 1x.
    So, I guess I'll go back to my Dr and say the hell with PM as this is the only one within 1.5hrs from where I live. .........She said I probably do to much research and over analyze.
    I've always found it best to let the Dr know my pain levels and goals to see where we can go in treatment and having a plan as far as that goes. I don't think that a bad attitude is going to help the situation at all, and may even hurt you not only with this PMDr, but in future, as a direct result of you losing it and your attitude, this will more than likely be charted in your permanent records for any future Dr/s who may evaluate your chart.
    At least your regular Dr knows you I presume, and will understand why you became frustrated with the PMDr. Hopefully your PCP will help you manage your pain.
  • Does anyone know what would be the best hospital/clinic for spine problems? I am willing to travel to get the best treatment for my back. I would really like to see a top level surgeon.
  • I think there a many great hospitals that specialize with the spine. The question is...how far a travel is worth it for follow ups. Being in the car for long is only going to add to the damage.

    Considering you are in Syracuse...maybe some folks can PM you ideas.

    What you might want to do is consult a specialty group (like Hospital for Special surgeries or Cleveland clinic). I equate it to how my mom handled cancer. She had a local doctor she trusted and would always spend time with her. However, she wanted to be sure she was picking the best treatment and really weighed all options. So she would use Sloan in NYC for consultative purposes (periodically) and then use the local oncologist for treatment.

    You might also want to realize "top surgeon" is really speculative in nature. I tried looking for information but most surgeon's are rated by their peers, or by how few lawsuits are brought against them, etc.

  • I live near NYC and ended up with a NS at a university hospital. He is said to be one of the best spine surgeons in the area. I asked around and meet a few and ended up with him. I'm only 10 weeks post-op, so it's hard for me to say if the surgery was a success. I am better overall, but still recovering. If you would like to know his name and affiliated hospital, I can PM you. Just let me know! :)
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • How many people ,who have had multi-level fusions in the lumbar area, ended up with 2nd, 3rd or more surgeries after the 1st. I would like to hear about problems you may of had and how long was it before your 2nd, 3rd, etc.....
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