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Just back from Dr and I am beyond pissed and so so lost

ellineellin Posts: 188
edited 06/11/2012 - 8:30 AM in Back Surgery and Neck Surgery
ok some of you know all my story. I have on my MRI lots of things showing up 5 hern. disc stenosis, DJD arth tear on it goes ok many shots, nerve burns so on. Went to the nuro dr he says I need to see nuro surgon I did not, years go by ok now I am in 10 plus plus pain in er lots for pain contol now on oxycontin 120mg daily went to mayo nurosurgon ready to take care of me and Dr. says not a surgery candite because of all the arth. Now going to mayo PM Dr. to get spinal cord stim. is what this nurosurgon says. I have NEVER got a discogram nor a emg test so with all the info I have from all of you I go to the pm Dr. today and have a list of questions for him as to why nobody has tried to find out the real reason for my pain. Well, he says I am not a candite for the spinal cord stim. because I told him my back hurts worse by far than my leg. OH helpp me G_DDDDDD what the heck is going on here. ^MY nurosurgon says I can't have surgery because of my arth. and refers me to you a PM for a s.c.s and you say no????????? Ok I asked what is wrong with my back???????? PLEASE somebody tell me. He says the test I am talking about would not due me anygood because he feels I have too many things wrong. WHAT???? he wants me to take some meds they use for sezires and I said no way he said to go to a phsycologist and due some biofeedback and go to a phyiotrist sorry can't spell worth a darm esp when I am so pissed. All I want is for someone to tell me what is wrong with my back. Yes people have many herniated disc they do a discogram or maybe a emg to find out which disc is causing the problem and blam get it fixed whether a mirodicectomy or ? , if I have a disc that is 5% problem and the other 95% than fix the 95% one and at least I can live without so much pain for goosh sake. But we do not know where the pain is coming from without doing some tests RIGHT?? I left in tears and lost another 50 bucks for my co-pay I am lost. my primary is the one giving me the oxycontin so now what I think I am off to yet another Dr. to see if he can do this painful test to see what is wrong with me. PLEASE what do I do?????????? I am so darn lost. What is wrong with all these Dr's I went to mayo because of their rep. I heard of a laser spine inst. and think I will call them and see what they say?? Just wanting to know what is causing this pain.


  • Having a lot of difficulty understanding your post, but a things I found in your post.

    The medication for "seizures" would be neurontin or the stronger version lyrica, which is also used to treat nerve pain. Not sure why you would refuse this, it is a VERY common use of it moreso then for seizures anymore, lyric is basically just for nerve pain.

    Have you gotten a second opinion (neurosurgeon or spine surgeon) ?

    At the time what was the reason for not seeing the neuro surgeon?

    The longer you have disc issues that are causing nerve pain the higher chance you will have nerve damage that may or may not go away with or without surgery. Never a good thing to wait.

    The SCS device I know nothing about.

    What was the psychologist consult for? The SCS device?

    It seems they already know your problems, the herniated discs pushing against nerves causing the pain? What would the purpose be of a discogram or EMG other then racking expenses up needlessly unless I am missing something.

    But you definately need to seek further advice if you do not feel anything is being done to resolve your pain issues.

  • I just lost the post I wrote, so here I go again. I'm sorry you're so upset and it's very understandable. I fall in the same category as you because my back to leg pain ratio is 60/40 and my NS says a morphine pump would benefit me. I'm waiting to be scheduled soon. Anyway, are you going to see that psychiatrist? I was sent for biofeedback due to endometriosis pain, and the second I found out that they wanted to put electrodes in my hoohoo, I sprung the hell outta there. Not for me thank you very much. See if a morphine pump is something you would be willing to try. Look it up on the web and maybe bring it up at your next appt to see what they say. Someone has to do something for you. Take care sweetie and I hope things work out for you.
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  • dilaurodilauro ConnecticutPosts: 13,526
    What has been your doctor's recommendations?
    Are you doing any conservative treatments?
    Have you gone for any Spinal injections.
    The fact that you have a lot of arthritis should not prohibit doing spinal surgery.
    Instead of searching for hospitals or institutes that have a reputation, spend that time looking for a doctor you can trust
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • Sorry you had such a frustrating appointment. If you were at the Mayo Clinic in Rochester, there are many excellent spine clinics in the Twin Cities.

    I think you need to start over. As Ron said, take some time to find a new surgeon. You might want to try an orthopedic spinal specialist this time. I would suggest you go in and just explain that you have been in a great deal of pain and that you are trying to find out the cause of your pain and what can be done to relieve it. Let the doctor diagnose you and suggest what he can do to help you.

    Many doctors do not respond positively when a patient goes in and tells him what needs to be done, or what she wants. A spinal cord stimulator used to be used only as the last resort -- when everything else had failed or there were no other options. I guess now some PM docs are recommending them prior to that point, but it is not where one would start out.

    I don't believe the Laser Spine Institute should be your next move. If there is as much wrong with your back as you say, you really need a smart spinal specialist near you that can coordinate your case. At the laser places, you fly in for a few days, stay in a hotel and get a procedure that may help for a little while --many of the places do not take insurance and expect you to pay at the time of service. Then when you get back home and develop another problem or have recurring pain, you're in the same position you're in now -- so I would suggest you find someone within driving distance of your home...someone you can relate to and that you can talk to.

    I hope you can find someone soon that will be able to help you.
  • Ok My part story. I started feeling some pain in my back I was told to go for a MRI I did than they sent me to a PM Dr. I have a fear well use to of any needles in my back so, I never went to the PM Dr. A year or? went by and my left leg went complety numb no feeling at all. This scared me. I thought I would go to a nuro Dr. rather than a nurosurgon because I thought that sometime the Dr's just want to do surgery and I was not ready for that. I ended up back at the PM DR. got the epiderals first injection I got the feeling back in my leg I thought I was fixed. From their it has been down hill. I had facet injections, S1 injections, RF's done and nothing is holding for a long time. I am injectioned out I can't have any more. I thought I would call mayo due to their rep and was told to send in My MRI and either PM will see me or the Nurosurgon will. Get a letter for a appt. for the nuro. surgon. Went and he told me because of all the arth. in my whole back I was not a surgery candite. He told me to go to the PM Dept. and I would benifit by a scs OK I did that had to wait over a month. Oh I have done the phys. therpy and massage therpy also. So, go yesterday to the PM and I was full of questions because of all of YOU GREAT spinnies. I was told by a lady on here that I should have got a discogram or emg test before getting this scs done because it may not work for me and than I thought holly cow I am not going to go threw all this scs and than it does not help my problem. So, Dr. come in and after talking to him he tells me because of my pain more in my back than my leg the scs would not work for me. He said that a Dr. who does physicsl therpy might help and a phycologlist for biofeed may help me deal with the pain better. I said ok to both I am willing to try anything. He told me that the problem with my back is mechanial?? All I would like is for someone to tell me what is causing this back pain. I have heard that some people have the same sort of MRI I have and they have this test which I do not want to do but, would if I had too and the Dr. can see what is the disc or ? casusing the pain and than it gets fixed. I know surgery is not a garentee Someone just someone please just give me a good reason why You can't tell me what is causing the pain. So, if I did not have arth. I would be a surgery candite? How does this nurosurgon know that the pain is from my arth? Hope I am a little more clear. Thanks for your input.
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  • OH also why would this Dr. want to give me that med. for seziures if he does not think my pain is NERVE PAIN???

    And yes, I do know that I have all these hern. disc's but which one if any are causing the pain???

    And I thought If the PM gives you a injection that is what they use for a diag. if it works the injection than the spot was hit. Like I said the pain goes away after the injection and than comes back and the rf worked for 3 months and than back to pain Dr. did the RF again after wating 6 months and it did nothing I asked the Dr. if maybe he did not hit the right nerve and he said not a chance. He is a PM Dr. that I know realize is very limited on his skills my folks went with me to ask lots of questions and he would not even look at my dad and walked out. This is the PM Dr. who has done most of my injections and the RF's all my records were sent to Mayo PM Dr. after the nurosurgon wanted me to see their Dr. for the scs which did not happen.
  • please read my update I was so upset yesterday I just wrote and now a bit calmer so hope you understand my story a bit better.
  • I am not sure at all if our cases are at all similar, but I also have major arthritis in my back. I did end up having spinal surgery for nerve problems, but was told that because of the extent of arthritis in my back, a surgery would probably not solve my pain problem in my back, just the nerve issues. And that is what happened, nerve issues are better, but pain in back is not.
  • I understand as I've shed many tears in anger and disbelief of what I've been told and feel had I got a decompression microdisectomy when I was crippled with pain 14 months ago I wouldn't have to go through hundreds of facet jinjs as well as epidurals and trigger point injections. And meds don't take away all the pain and it has hurts every single day while I tell my family I'm feeling better which I'm not. It really hurts and I know your pain. Try the Lyrica or Neurontoin to see if it helps with your narcotics. I have had some relief from the pain. As well as some relief from the antidepressant. It's feels better to vent here also. I'm sure if we were hockey players we would've had surgery by now! It does bother me too. I hope you can find a good Neuro or Ortho Dr who believes he can help you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I know just how frustrating t can be to be told nothing can be done. I sent all of my hubby's records to EDITED when his spine cllapsed after the first surgery. they would not even talk to us until he was 6 months out from surgery. So, I called back 6mos + 1 day after surgery. They looked at the info I sent them and said there was nothing they could do. That was the fastest "no need to waste your time with us" that I got during my search for some help.

    I've sent many patietns to EDITED over the years and know they do great work in some fields, but you should get another opinion. The EDITED may be close to where you live if you have been going to EDITED. Two years ago when I was doing so much research, EDITED ran the only accredited non-accademic spine fellowship program in the country. We worked with 2 doctors there. I especially liked Dr. EDITED. We did not choose to have surgery with him because of location but he really did help us sort through our options and make a decision.

    Good luck. Terri

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
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