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Thursday, 10/17 Second Opinion

Thursday, October 17, 2013

Hi all,

My last two days have been full of appointments and medical things. It's been tough, thrown me off of my regular med schedule and exercise schedule. However, I have pulled things around plus I cleaned out a closet--yay, me.

Most of what I have been done is routine--mammogram and bone density test as uncomfortable as usual. I took my pain meds early to manage those things which left me unprotected for physical therapy. That made me miserable early in the day because my appointments aren't in the after school hours while we are on fall break. I took ,my meds at an appropriate time, but it put me to sleep early and so on and so on. It was really chilly today, so of course I didn't realize and dress well enough. We took our son to the food pantry and there was a ridiculous line of people there--I got cold while I was waiting with him and was miserable when I went to the doctor's office to see Dr. Berry for a second opinion on my back.

They did a lot of x-rays and many in some weird positions that aggravated my back enough to have made me look as awful as I felt. I hate getting that sympathy stuff that distracts me as I am trying to feel better. Anyway, Dr. Berry--who did my cervical fusion and who is a wonderful doc, specializing in spines--told me he knows what is up. I certainly have arthritis and my fusion is doing some breaking down. However, a far bigger concern is that my spine is curving in the wring direction in my mid to lower back. He said that this is painful and makes the use of a walker absolutely imperative. He told me that it is correctable and that he has done it, but he won't do it here in these "country hospitals" we have. He was glad that I have an appointment at Mayo and said he recommended a tertiary facility for me.

The procedure is intense and requires quality, skilled care. They basically need to break my back and reconfigure all of my vertebrae, replacing disks. It requires several days in the ICU with medical staff who can handle whatever emergencies that might present. obviously, there are negatives, but Dr. Berry said that when he was at University of Iowa Hospitals, he did this procedure. It was intense for him, took hours and great concentration, He said that the advantages for me is that it would reduce, if not eliminate my slouch (I cannot stand up straight.) He said it would reduce my use of the walker greatly if not altogether and it would reduce but not eliminate all of my pain. Wow--it's a bit overwhelming to consider right now. He is writing up a report and including my pictures from today. He told me that if I was dissatisfied with Mayo, he would be glad to write me a referral and recommendation to the folks at Iowa City.

I will leave this for you all to comment on--it's a big deal in so many ways. I am certainly nervous and frightened over the idea, but at age 58 and being bound to my walker to go anywhere and do anything is pretty unpleasant. I hear my kids kind of bickering over who has to get it out of the trunk or put it in. I know when we make a quick stop that that is the reason they like for me to stay in the car. It also takes me away from going to dinner at restaurants sometimes and takes away other opportunities. I cannot ask others for rides too often unless I know if they have a vehicle and trunk space to hold it. I am also sick to death of constant uncontrolled pain helped in the short term by painful injections. Yet, the idea of purposely breaking my spine up and down is scary.

I mentioned to the doctor that I recognized that I was having difficulty standing straight about 8 months after my fusion--which is no small surgery--9 hours with 4 surgeons for my procedure. The physical therapist told me it was a "bad habit" and I needed to focus on standing up straight all of the time and I could fix it. Dr. Berry said that there was nothing I could do about this. He said that it is like the foundation of a house deteriorating and falling apart. There is nothing you can do unless you rebuild the foundation and then secure the rest of the house into the rebuild foundation carefully.

It's a bit of a relief to know that this is not fibromyalgia and it is not my brain over interpreting my pain. However, this diagnosis is big--the word for the condition I have had about 6 to 8 syllables and I simply don't know it. I will when I pick up the paperwork from Dr. Berry either tomorrow or Monday. I am going to make sure that my pain doc gets it as well. I am so glad to have another doc on board for my back. He said that when I was told that I was "normal and fine" that a lot was left out--that having "back pain" is a symptom. He reminded me that there is no surgery that can eliminate back pain and if you go into one expecting that, you will be disappointed with the results--but my attitude about improving things is the way to think.

Now, I have pages of doctor's notes and test results for the folks at Mayo--It will be in their ball park to make some recommendations. Dr. Berry said that they would redo my x-rays and that if it were him, he would redo them too, even if they were only a couple of weeks old. I guess I know what to expect. I was thinking they might do an MRI--but I don't know if they need it if the x-rays show that much.

That's it for now...
Gentle hugs,
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Member Comments About This Blog Post
    I'm sure this is a lot to ponder right now but you will have some time to think about it and Mayo may have some ideas as well. If this surgery will improve your quality of life you should consider it once you have a clear understanding of the risks.
    1857 days ago
    Definitely a big decision. I don't have any words of wisdom for you. Hugs!
    1860 days ago
  • _LINDA
    So glad your Dr. finally has come through for you! Its unreal the other Dr.'s chose to simply ignore this -'left a lot out'??? Enough for a malpractice case!! The surgery certainly sounds dire and scary, but the benefits -far less pain and normal walking without needing a walker? No contest really. As long as you get a competent medical team with lots of experience and good referrals. You would think a renowned facility like the Mayo clinic would be able to step up.
    So hoping this works out for you. You need it!
    {{{gentle hugs}}}
    1860 days ago
    Praying for you, Sylvia....would be such a relief to be free of some of this pain! I am 57 and feel frustrated when I need to use the walker or the wheelchair. Just seems we are not quite old enough for all that yet! Hang in there and keep posting and letting us be your sounding board. I know it is your decision to make, but sometimes short term misery (surgery) will give you long term benefits. Go for the best for opinions. emoticon
    1860 days ago
    Always a good idea.
    1860 days ago
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