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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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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: 4,476

    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

  • That's what I keep telling myself, Chip. And I'll be making my list today Sandra. I filled out page after page of intake forms already but was able to do it online so won't have that stress when I go in. They have all my records already which is surprising that could happen this fast. My roommate will go with me for support (and because it's so hard for me to drive) and another set of ears. She's a retired nurse so that doesn't hurt either. I'm trying not to think about it too much and just go see what he has to say, I say I have no expectations but those things can be sneaky, lol. I'll let you know how it goes. 

  • Very good idea to take someone with you, another set of ears is always good.

    Keep positive thoughts

    Chip

  • jbowerjbower wisconsin Posts: 170

    I wish you luck.  I've been doing the same thing, trying to find someone who is willing to do something.  My pain is all thoracic because of a spinal cord stimulator surgery.  3 years in pain management and they ran out of options.

    I've seen 5 different specialists and surgeons and no one has offered any help. I'm 37 years old and everyone is saying my pain is due to osteoarthritis.  

    I have finally got to the point where I think I should give up.  It is a waste of time and money to keep seeing doctors say the same thing.

  • memerainboltmemerainbolt IndianaPosts: 4,476

    jbower

    I really hate to hear that it has come down to this. You are so young to have Osteo that bad and too young to give up. 
    But I know how you feel. With all of the other health issues I have, all I hear is "sorry, there is nothing we can do". Not the kidneys, lower intestines, scoliosis, ruptured disc.  I get my pump refilled every 3 mos., sometimes I have the dose increased. Other than that, I'm done. I'm just glad I can stay mentally stable through this.

    Take care and keep us posted.

  • jbrower

    I know how frustrating the medical industry can be, I have fought it myself, but you can't give up, there is somebody that can help, it may be pain management or a surgeon, after 3 lumbar surgeries my surgeon moved to Wisconson, I am in N.C. so he wasn't an option anymore, it took going to 6 different surgeons before I found one that was willing to help me, he looked at my mri and said you need surgery and here is what we need to do, so yes there is a doctor that can help, sometimes we just have to keep looking.

    Take care

    Chip 

  • jbrower, you know we all understand why you might want to give up. I've been there many times (I'm 70) but as people have said to me, you don't know what's out there unless you take the next step. And at 37 I'd sure keep looking! There are new technologies being used all the time. At your age, I'd even research a clinical study through a major medical center or university. I have a friend who was in one and had a ultrasound procedure on her brain and she's been pain free for a year now. It was a gutsy thing she did but everything was paid for and now she's getting written up in medical journals!I looked into it but by then the study was closed. I'm just saying that there are all kinds of possibilities for someone your age, please don't give up. 

    Joanne 

  • jbower - I just finished a high cervical (C1/C2) trial SCS.  The positive results have been amazing!  I'm scheduled for the permanent implant on Tuesday.  Actually the worst part of the permanent implant has already been performed, my permanent leads are already implanted. 

    After the generator/battery and wiring implant is performed Tuesday, I'll have to wait three to four weeks before the system is turned back on. The implant area of the generator/battery will needs time to heal. 

    Maybe, in time, I'll be singing a different song.  I've known of people that had SCS implants that said that it helped at first, but then became problems and then had them removed.  Time will tell.  Everyone's case is different.

    I know the frustration of being told by surgeons and pain management doctors to ""live with it".  This has been a very long and painful journey of 23 years for me and three cervical surgeries later.  I do not expect a full recovery, but a significant improvement in quality of life does finally look possible.  

  • memerainboltmemerainbolt IndianaPosts: 4,476

    jbower

    I want to apologize for what I wrote above. It has bothered me since I wrote it. It was about me and it should have been about you not giving up. Don't get me wrong, I have not given up.
    I agree with Joanne and Chip, there is always something new out there. You just have to find it. Sometimes we need a break from it all but then we will start searching again. 

    Take care

  • SpineyKD23SSpineyKD23 IllinoisPosts: 23

    Any update since your appointment? I’ve just read your thread and I’m cheering you on. I’m 28 and just had my fifth surgery. 

  • Thank you! My appointment is today, I'll do an update soon. I'm praying for courage because I'm dreading the whole thing. 

  • Go get em Joanne

  • Well I survived the new pain management doctor, lol. Actually he was very gentle and laid back and listened well. The worst part was he was running at least a half hour behind and my pain level was about a 9. And just a tiny rant here, I've never been to a pain management practice or surgeon who had comfortable office chairs! And his doors didn't have handicapped automatic openers.What's up with that?! 

    Anyway, he mentioned a few different options one of which was doing injections when I had bad flare ups (like the past 2-3 months) to get the pain at least back to a baseline. My previous PM was not willing to do this. He also talked about Ablation and a new type of stimulator which is outside the body. He said there were most likely options for me but he needed a new MRI to be able to tell me which options might be helpful. Ugh, it makes perfect sense but laying on that table is torture. I can't even lay on my back on a soft bed but if I want to move forward I'll have to suck it up and do it! I'm waiting for scheduling to call. So that's my story thus far, thanks so very much for your support and encouragement! 


    Joanne 

  • joanne2   

    I am glad to hear your visit resulted in some possible solutions.  Got a chuckle about your rant on the uncomfortable chairs in his office. My orthopedic surgeons waiting room has really back friendly chairs but when you go to wait in the exam room the chairs are hard and not back friendly!  I usually end up walking around or standing.  I just might have to make a 'suggestion' to the surgeon.  Good luck with the MRI.  

  • Joanne

    That all sounds good to me, especially the listening part, I have never minded waiting on a doctor if he/she takes their time with me when they get there, but don't make me wait and then be in a hurry when you get with me, that does not go over very well.

    Take care and keep us posted

    Chip

  • jbowerjbower wisconsin Posts: 170

    Hi Joanne,

    I wanted to comment on the ablation.  I had that done before and it's weird. They put 3 needles in you, one bigger than the other.  Then they run this little wire down the needle that is hot on the end.  That's so they can start burning the nerve endings.

    A lot of people said it hurt during and after.  I didn't have any pain.  The problem with ablation though it's a trial and error.  They burn as many as they can in one area.  They hope to get the right one that's causing the pain.  

    They did one side on one day and a week later they did the other side.  Unfortunately it didn't work on me.

    As far as the new stimulator that you mentioned  where its on the outside of the body, did he give you the name of it??

    ***To all of you that made comments to not give up, I appreciate your kind words.  When I have time Ill create my own thread.   Sorry for hijacking on yours Joanne***

    Jay

  • No problem, Jay, glad to share ,lol. I doubt I'll have the ablation, I've not seen many who had it work and I just don't think I want to go through that. I don't remember the name of the stimulator but it's somehow attached to your lower lumbar spine and sends electrical stimulation through the spinal column. He said it was better than a TENS. I didn't ask a lot of questions about it because he said the MRI would tell him if it would work for me. I had asked him about the Neuro Muscular Electrical Stimulator that CBS did a story on, he wasn't familiar with that but mentioned it then. You can probably Google that one, I was curious about it and posted on it but no one responded. 

    Joanne 

  • jbowerjbower wisconsin Posts: 170

    Interesting, I wouldn't see an external stimulator would be as good as an internal one.  I have the medtronic stimulator and they tried the Nevro for the thoracic but it didn't do anything which pointed to not being nerve damage at least.  I'll take a look though to see if I can find what you mentioned.

  • Jay, I had a Nevro but it made things worse. I'd really rather have something external because my body seems to hate foreign object in it. If he thinks it will help, I'll sure try the external one. The NMES is pricey and I doubt it's covered because it's so new. Let me know what you think of it, scam?, Maybe? 

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