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Frustration - can't get second opinion on surgery

I went to one doctor and was given his opinion on what type of surgery will benefit me. I think there are a couple of alternatives and want to explore them. But now that I've seen one doctor, it appears I'm tainted in some way and can't even get an appointment with anyone else. What's with that? Is anyone else having this experience?

I have severe stenosis and mild spondylolisthesis, and my first doc gave me what's apparently the standard answer: decompression and fusion. Maybe he's right. But I've done a lot of research since then and think there are other possibilities.  For example, a very large study was done in Europe showing that patients with my situation do equally well with decompression *without* fusion, and I would  certainly like to avoid fusion if possible. I tried to make an appt with a local doctor known for motion-sparing surgery in some cases, and guess what! The receptionist said "He doesn't do second opinions," and hung up! I couldn't believe it!

I did more research and found another surgeon who looked like a possibility. This time I didn't talk about second opinions, just said that my PCP had suggested I see a surgeon (which is, indeed, how this all started). But then they asked for my MRI records, xrays, etc and said they'd review them and call me back. Probably they'll see that another surgeon had ordered them and refuse to schedule  me again. Apparently that's the  case because they said they'd call by yesterday at the latest and I haven't heard a peep.

I'm just really really upset. I know I most likely need surgery, but if there's a possibility that I can avoid fusion, I definitely want to explore that possibillity. But somehow it seems like you get one shot to pick the right surgeon and you aren't allowed to consult anyone else! I've never heard of such a thing, and if it's true it's completely ridiculous!
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Comments

  • liathumliathum OrlandoPosts: 17
    I'm not sure where you're at, but I'm certainly sorry you're having such a tough time getting a second opinion!

    Look for neurologists in your area and see if one of them may be willing.  In my area, a large orthopedic practice has all but ran most alternatives out of town.  I was tempted to go to Tampa or Daytona to find someone for a second opinion. 

    I can only talk about my experience, but the neurologist I saw looked over my MRI and X-Rays while I was there and discussed my options.  With the data available, we decided on a coflex device and decompression so I can retain some mobility and shorten my recovery time.  Sadly though a fusion is eventually in my future. :(

    I was originally seeing an orthopedic doctor to try as many alternatives to surgery as possible but when we hit a wall, they essentially said I should take Tylenol and wait a few months before we try a third ESI, despite the first two barely working.  So I hunted down a second opinion, on the advice of my family cardiologist, I looked for neurosurgeons who specialized in spinal stenosis and that's how I found my current doctor. 

    Hope this helps!
  • Adelthea17AAdelthea17 Seattle, WAPosts: 14
    Hi Liathum, thanks for your post! I live in the Seattle area where there are plenty of medical professionals. It just seems like suddenly spine surgeons will see only "treatment virgins" and not those who already have a diagnosis and have been given a proposed treatment plan. Too strange: these days most people consider it essential to get a second opinion on something as serious as back surgery.  Guess no one told the back doctors about that.

    Your suggestion of seeing a neurosurgeon instead of an orthopedist is a good one. I have someone in mind, and I'll try their office tomorrow.

    I'm interested in the coflex and from what I read I sound like the ideal patient. Strangely, the first "second opinion" guy I called was the only doctor on my side of town who is trained to do coflex inserts. It's so odd that I was rudely turned down by that office because this would definitely have been my first consultation about the coflex. But maybe it was all for the better because my insurance doesn't pay for spinal implants, nor does any other private insurance company that I've heard of. And there's no way I can pay for it myself; I can barely keep the lights on these days, So discouraging.
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  • liathumliathum OrlandoPosts: 17
    Actually, believe it or not but my insurance covered both the coflex and the actual surgery.  Depending on your insurance and neurosurgeon/orthopedic doctor, it may even be done as outpatient. Mine was done via outpatient (17 hours post-op right now) with only a 23 hour observation period where I'm currently being pumped full of antibiotics as a preventative measure. 

    I was worried about the insurance covering it, but with the right CPT codes, the doctor's office can get it approved.  The surgery scheduler usually handles that and sends all sorts of fun paperwork to the insurance companies and does the fighting to get it approved for you.   If the coflex wasn't approved for me, my only choice would've been a fusion. 

    My cardiologist recommended a neurosurgeon and I'm glad I followed that recommendation. Leave the insurance issue with the doctors office, coflex isn't really an implant like the spinal stimulators.  It's actual hardware, similar to a fusion but still allows flexibility. 

    I am immensely surprised that they're being all poopypants about the second opinion.  It's almost a cultural tradition.  Our media, TV Shows, Movies, families and books all talk about second opinions. It's a thing!

    I'm so sorry with how frustrating this is though. I certainly understand though, when my symptoms first started I had three doctors tell me nothing was wrong.  Now all my lumbar discs (except one, I've named him Thomas, after the little engine that could) are bad.  Good luck with the neurologist! If you want to know more about the coflex, let me know.  I can tell you that 17 hours post op and I'm already loving it. Not because of the pain meds! But because I don't think I've lost any real range of motion or flexibility. And I walked for twenty minutes around the floor here and my foot didn't go numb!
  • Adelthea17AAdelthea17 Seattle, WAPosts: 14
    That's great that you're doing better so soon after surgery. If you don't mind my asking, what are/were your symptoms. I have no actual back pain, although I sometimes get electric shock pains down my legs. For me, the worst symptom is that my legs seem like they weigh 500 lbs each. I can walk only a few yards before I have to bend forward to relieve the nerve pressure. It's awful, I used to be very active until this hit me suddenly three years ago.
  • fugitiveffugitive New Zealand Posts: 7

    Sorry I've  more to add. My legs also feel really heavy. I too can't walk far without bending  to relieve  the pain. My thighs often feel like they are wet and they're  not. My calves  also feel  really prickly
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  • fugitiveffugitive New Zealand Posts: 7
    Hi. My legs especially  round the one thigh used to burn like hell. It felt like really bad sunburn or what we as children used to call this pain a chinese bangle on the arm. I felt like I had a million red ants crawling and sometimes biting my thighs. I had pains under my feet and sometimes into the middle toe. I was always told the nerve was very close to the prolapsed but not actually in pinged.  My last scan said it was very close. The specialist said that the op may take the leg pain away but not my back pain. At times though I still think I hope I haven't  made a giant mistake.
    Muscle spasms really still give me a lot of trouble in my lower back and thighs. I get lots of bad nodules in my lower lumbar
  • liathumliathum OrlandoPosts: 17
    The biggest symptom was the numbness that started in my left toe and the more I would walk the higher up the numbness would go until I would lose all feeling and control in my left leg.  As soon as I'd sit down, I'd get the most intense pain in my back and after a few minutes my left leg would wake up and be back to normal but until I could lay down for a bit, my walks would get shorter and shorter. If I sat anywhere without back support, standing up would be just as intense as the pain when I would try to relieve the pressure on the nerve. 

    I'm now almost 48 hours post op, I was discharged from the hospital about 1 or 2pm the following day after the coflex surgery. I was walking the same day of the surgery and even more overnight (The slow release injected meds wore off and oh boy did it hurt!). It took some getting used to on how to maneuver around the pain without bending and twisting, but all in all I'm incredibly happy. I can still sit cross legged on a chair, other than when being "practical", I haven't noticed any loss of flexibility and my leg hasn't gone numb yet!
  • liathumliathum OrlandoPosts: 17
    Fugitive--

        I'm so sorry about your pain! Maneuvering and doing anything when a leg has issues is right up there in the "unfun" column, right next to getting stung by s pack of bees and stepping in a fire ant colony. 

    Have you had the operation yet? I had a similar issue--my MRI said there was contact with the neuroforamen but nothing was being compressed. Though they had my legs up and I was laying on my back during the MRI. A classic position for decompressing the back. At least according to the physical therapist I saw. 
  • very strange that an md would resent a 2nd opinion unless there is is some sort insecurity there (personal opinion). i had four opinions under my belt before finally settling on coflex and a particular surgeon. but if you push any md, they will admit that medicine is an art and not a science and that is probably one of the issues.  that is why pre-surgery, you have no sign a "no warranty on outcome, expressed or implied" disclosure because all humans respond differently to treatment.

    most of the time, my pcp was the one that would set up the second opinion so that it was an md to md request and i was just the paying patient. -one exception is when i responded to a referral from a colleague to a major teaching hospital in sf.

    my recommendation is that you read as much as possible so that you know the strengths and weaknesses of each procedure. i started another thread that i hope would be of help:

    https://forum.veritashealth.com/discussion/97308/treatment/back-surgery-and-neck-surgery/personal-quest-seeking-coflex-over-fusion?new=1

    --my very best to you in your decision and outcome.


  • Not sure if you can travel, but I am in Vancouver, WA my doctor is at OHSU in Portland. I actually went to him as a second opinion, and after jumping through all of the insurance  hoops, my alif /plif is in 10 days! 
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