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Struggling with a decision

I've been dealing with chronic pain so many years I lost count. It's a familiar story to most of you, multiple surgeries, injections, procedures, pills, PT, SMS, Behavioral Pain Management and I'm sure I've left out a few things. The most recent surgery was L5/S1 fusion in 2017, I waited too long and have nerve damage to L5 nerve roots which causes sciatica and various other things. Most recently I've developed SI joint dysfunction and piriformis syndrome and the pain has become debilitating. My neurosurgeon has told me he has no options left, as has my pain management doctor and I have a feeling my most recent PT is about to say the same thing. I do practice all that I learned in the behaviour pain management classes and try my best to keep moving as I can and try to maintain a positive attitude, definitely not perfect at it! 

I'm wondering if I should seek out a different PM doc. No problem with meds because my contract is with my Primary. As I write this, the answer seems obvious but the reality seems overwhelming. Another new doctor, transfer of records, getting there and all the things involved (can you tell I'm weary?).  Maybe I'm afraid there really are no further options for me. I'm thinking he will want an MRI or myelogram and the last time I had one the pain was off the charts for weeks! I know I'm the only one who can make this decision but my mind seems to be going in circles so if you have a word of wisdom, it would be appreciated. Otherwise, thanks for letting me whine or vent or whatever this is I'm doing, lol. 

Joanne 


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13

Comments

  • joanne

    There are usually always other options, sometimes it takes a fresh set of eyes and ears

    Take care

    Chip

  • Thanks Chip and just to clarify, I meant SCS not SMS, lol. I'm just so weary as you know, pain can wear you down. 

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  • I know exactly what you mean, pain wears you out, physically and mentally

    Chip

  • I too have permanent nerve damage due to waiting too long for surgery. I can definitely understand how pain can tear you down. I too had fear seeking other doctors' opinions, because I didn't want to lose hope that there was a chance that I could be pain free. I am trying to get over that fear and am currently talking to a specialist who is willing to do a lot of tests and figure out whether it is permanent or not. I am sorry this is happening to you. Getting another opinion is annoying and time consuming, but isn't it worth knowing you at least tried everything you possibly can in the hopes it can get better? Thank you for having the courage to post on this forum!

  • Eagles2510, thanks for your comments, it means a lot to me. Can I ask what kind of tests are being done? 

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  • Hi Joanne,

    Sorry you are going through all this... one thing I might suggest would be have another surgeon take a look - maybe an orthopedic spine surgeon as sometimes, in my experience, they see things differently than the neurosurgeons.  My PM experience is that he really needs guidance from a spine specialist to know what he should do.. but not every spine surgeon is willing to play that role.  

    In my case, the neurosurgeon who did my C5-7 fusion told me there was nothing left to do but live with a lot of neck pain, so I went to three other docs who all said I had a non-union that was unstable and needed to be fixed.  

    I agree with Chip... there's almost always something else that can be tried.  Sometimes for me, searching for that has given me something to focus on and a tangible reason to feel like things will get better.  For that reason alone I think you may find getting another opinion to be worthwhile. 

    Good luck to you... hope you are able to get relief very soon!

    Kevin

  • Joanne,

    I have a brother that has severe SI joint issues.  I like most of my other siblings, our bodies fused both sides of the SI joint without surgery.   He also has delayed any SI surgery. 

    As mentioned earlier in this thread, getting an opinion from an orthopedic surgeon might be of value.  From people that I know that had "procedures performed" for their SI area, I'd be inclined to at least get an opinion from an orthopedic surgeon. 

    It's about some quality of life.  There is no simple answer.

  • Well I finally did it! It took me long enough, right?! I called another highly sought after pain management doctor yesterday thinking it would take at least a month to get in. Others told me to be prepared to wait. Well right before I called he had a big cancellation so I got in on Monday! I guess that doesn't give me much time to change my mind, lol. I just feel a sense of dread and doubt and a tiny bit of hope mixed in. No guarantees that he will be able to offer me any solutions but it's worth a try, I guess. Thanks for all your encouragement, it seems silly that it's so hard to go to another doctor. 

  • memerainboltmemerainbolt IndianaPosts: 3,635

    Joanne

    I don't think it is silly at all. I think we all just get so tired of going to any doctor and hoping they can do something different.
    I always take my list of questions and concerns and I don't sign anything unless it is all clear.
    Good luck on Monday and let us know how it goes.

    Sandra

  • Joanne

    I am glad you made the decision to call, think positive thoughts, you will never know unless you try.

    Chip

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