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neurologist forcing scs and pain pump and I am scared

spunky21sspunky21 Posts: 161
edited 06/11/2012 - 8:47 AM in Spinal Cord Stimulation
Good Morning Fellow Spineys
My subject basically sums it up. My neurologist is also my pain mgmt dr who prescribes my meds also. He is so adament about be getting a SCS and pain pump.
I have gone through my number of surgeries (click on my name for details) I have had probably every therapy I can think of but my body continues to hurt and I continue to get weaker.
I did set up the appt. but called my ins co first to find out about copays and deductibles. Unfortunately husband is also disabled due to bad heart condition among other problems. We never thought I would end up having so many chronic pain issues but was injured and am in constant pain. We lost our home due to the double decrease in pay when we became permanently disabled. We were however extremely lucky as we were both approved 8 weeks exactly for SSDI and approved for LTD. However the costs of medical bills and medications was unbelievable and we lost our home. I did finally get medicare after the 24 month wait but they do not pay entirely for the SCS and pain pump. So there would be alot of out of pocket expense which we just do not have. As so many have had to do we have cut back on everything. Even dropping meds that are extremely expensive. One of my husbands meds is 3100. per month and not covered under our plan so he has opted, well actually our financial situation has forced us to stop that med. I pray he does okay without it. My meds are 40 mgs oxycontin er and 4 percocets a day which is a good bit of meds but certainly not over the top by any means. I am 49 and know pain is going to be a lifetime situation so I never ask for an increase since I know my future could require the meds to be upped.
Every single surgery or procedure I have had (and quite honestly I feel I have a high tolerance to pain has ended up causing infections, blood clots or other problems. I have tried to explain all this to my neurologist and he just says you should find better insurance as you did the SCS and pain pump. he has been a great dr thus far. Set me up with alot of therapy in home and does seem to care. But just isn't getting the fact that I am scared, financially unable and not quite sure if this is the way I want to go. I have used the tens unit when I was still working and a larger machine. Neither of which helped very much. I have very little feeling in my legs and in order to even feel the stimulation the levels had to be set so high the person who assisted me with the machines said those levels could cause further damage. I am really sorry about the long post. Just really would like some help or advise on how to pursue this with my neurologist. Also, it is not that I would rather take meds in lieu of have the implants as most of us would rather not have to take meds at all. And I believe I have been very pro-active in trying to find ways to reduce my pain levels. My physical therapist, occupational and speech therapist (I have a paralysed vocal cord and cannot speak well due to cervical surgery) gave me alot of meditation exercises also which I try to use especially when the pain is unbearable. I just don't know how to get through to my dr. And help or advise will be greatly appreciated. Again sorry for being long winded just trying to explain situation.
Jan
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Comments

  • I would recommend at least getting a second opinion before doing anything. That's my gut feeling on all of it. Also, remember that NO ONE can force an implant on you! You have the ultimate say on any and all of that! If you feel that you are not being given any choice in the matter, then regardless of how much you like and trust your doc, seek out another opinion. Neurologists are great docs, but I would recommend talking to a respected Pain Management doc. There are many who are Doctors of Osteopathy and take a look at the "whole person" concept.

    That's what I would do were I in your situation. I too had a great neurologist in control of my pain management for several years. I had him refer me to a fantastic Pain Management Specialist who took over my pain management, but always made certain that I was aware of my options and never made me feel as if I was being given no other choice. I am 48, so I know how it feels to face many years ahead with Chronic Pain.

    "C"
  • First I'd want another look to make sure it is a viable option and worth the risks, though minimal they do exist.

    Even if it is an option, Funding is a real concern.
    Maybe not to the doctor, but to you. If you can't afford it, you can't afford it. If it is truly viable I'd simply tell your existing doctor that you either don't want another procedure or you can't pay for it.

    Basic facts of life 101.

    If it helps at all I'm 49, so it seems to be a fairly common age group, yay? :$
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