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Monday, 11/25 My back--a surgical decision that is bigger than life!

Tuesday, November 26, 2013

Hi all,

I've had this lousy cold in my chest for a complete week as of today and it is not letting up. I know it is a major contributor to my mood and tired feelings right now. However it is not the only part of things nor is it the biggest problem I am facing.

I called my pain doc last Thursday. He gave me his home number and his cell number some five or more years ago and I am very careful to not take advantage of it. However, this dilemma with the treatment of my back issues is driving me wild. I told him the story and I physically heard him sigh, with relief. He told me that he and some of my other doctors have been afraid that at some point my "back would simply break" as I was living my life. He told me that quite honestly, he knows that the "quality of my life is $hitty." That caught me way off guard and we had an honest talk about things. He told me that if he were telling me what to do that I should call the folks at Mayo and tell them that I wanted both, the ablation for short term pain relief and the surgery to repair and strengthen my back.

I decided that I should at least talk to the doctor at Mayo about what my doctors here are saying, so when they called to schedule the ablation, there is a time gap of an entire day during the procedures and I asked if I could have an appointment with the doctor to discuss this. Her nurse called me back today with a succinct message, "she is not a surgical candidate." The nurse was very uncomfortable with something--and she told me that they are "very conservative at Mayo." We had a very uncomfortable silence and I told her that there was nothing else I could do about that and that to go ahead with the week of appointments for the ablation procedure.

I called my pain doc back this evening and we talked some more. I found out at almost the same time that he inadvertently ran into my husband and daughter today. My husband thanked him for helping me when we talked and he told my husband that he wanted to see me have a chance to a decent life. He explained that the surgery I was looking at basically involves correcting the issues in my spine and then building a tight cage around it to hold it in place. It is a grueling, long procedure with risks for the patient. Some of those risks certainly involve being under anesthesia so long as you lie on your stomach. One possible issue with any procedure over an hour or so long in that position is blindness. Anyway, he told me and my family that he would help me to get any referrals to any doctors I might decide that I want.

I have decided to call the doctor who gave me the diagnosis in the first place and ask for a referral to University Hospitals and Clinics in Iowa City. I need to learn more about all of this and to make sure that I am not shooting myself in the foot by either not having the surgery or by agreeing to do it. I do not know enough about any of this. I think that getting a second and third and fourth opinion when so much is at stake is important. I think having all of the available information is important to drive what could be the first chance at being able to walk unassisted since the turn of the century--13 years. I need some help. I understand that the folks at Mayo want to help me in the safest way possible. I understand that I have doctors here who have tried almost everything there is to help me.)

I asked my pain doc why we haven't tried an ablation and he told me that he hadn't had any indication that going through this procedure would give me relief, let alone the long-term relief I need. I am aware that if it gives me any pain relief that this week long process in Rochester has to be repeated every 6 months. If I had it done here, it is at least a month until the first appointment and then each part of the procedure will be several days apart. It isn't exactly an easy solution either. It might be easier than life-threatening surgery though.

This is bigger than a big, life-changing decision. There is no good answer and there is no easy solution to my need for a decision. However, I won't die if I take my time--I just won't get any better. I won't have any better of a life and I won't have a worse one in the short term, but if I wait, my back might simply break during some daily life activities. It might not too.

Does anybody see any stress in my world? If this isn't enough, I have other things going on as well... I could list them but those of you who know me well know many of my regular stressors and those of you who don't know me probably don't want to listen to a perfect stranger whining about the issues in my life which may or may not be different than your own.

All of this and a cold too.
Is life working overtime to cause me grief?
And, I fell asleep around 9 tonight and woke up at 11:45. I took my pain meds and am hoping to get back to sleep soon... I need it.

Gentle hugs,
Sylvia
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Member Comments About This Blog Post
  • DETERMINEDJANET
    Overwhelming choices. Praying!
    1774 days ago
  • DOLLYHOLLY
    This ablation sounds like an extensive, traumatic process...I'm also having similar issues. Wishing you all the best. emoticon
    1774 days ago
  • _LINDA
    The surgery could be life changing for you for sure, but not having it doesn't sound any better either.. So glad you will thoroughly check this out and get other opinions. Interesting your most trusted pain Dr. doesn't think this ablation will do you much good -maybe you need some more opinions on it as well.
    My heart breaks for you that you are suffering so much :(
    Do the best that you can to take care of yourself. learn to say no when something is too much.
    {{{gentle hugs}}}
    1820 days ago
  • MALKS_ARIA
    My thoughts & prayers are ongoing-ly with you! I can't imagine the stress &the battle this must be. My issues are milder & have to fight for treatments, I can't imagine the ongoing battle you have with your back & life.

    my heart goes out to you!
    aria
    1820 days ago
  • MORTICIAADDAMS
    I agree about getting some more opinions. And, as a nurse I might recommend that it may be time for you to get a referral to one of the top doctors in the U.S. that does these procedures. The more of them they do the less occurrence of complications.
    1820 days ago
  • MTNGRL
    Sylvia, wish I could be of some help. Sorry you are having such a difficult time. No easy solution or good answer about sums it up. All I can offer is support and prayer to my dear Spark friend.
    1820 days ago
  • FERRETLOVER1
    I can only send you emoticon and lots of emoticon wishes - I hope you can find some relief for your pain.
    1820 days ago
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