Monday, March 24, 2014

Final decision after second opinion yesterday

I have been in limbo for so long regarding how to proceed. The pain in my thigh joints has intensified to at least double what it was when I recently raised the dosage of the Fentanyl. Raising the dose didn't even seem to help, just make side effects worse. I am going to see Dr. Z soon (pain specialist doc) and have a talk. I want to reduce that last step-up we did with the Fentanyl. Knowing how that will effect me- reducing the dose of a narcotic- is so unpleasant to think about. But I am determined. I'll get through it. I've done harder things.

After seeing the specialist yesterday for the second opinion (in Tel Aviv), I finally I have come to solid decisions regarding what will be done to ease the pain in my thigh joints. I needed someone to help me organize things in my mind, and explain pros and cons from another perspective.

After the predictable eyebrow- raising reaction that I have become so accustomed to while telling my story, he said just what I wanted to hear... "OK, let's make some order out of all this information."

So, getting down to business. He popped my MRI into his computer. Unfortunately not my most recent, but a year ago. The most recent is in my file at Ichilov. He agreed that it's not a good idea to do a total hip replacement at this point. Yes, it may help my pain, BUT, my physical situation doesn't immediately call for it. He said it's like of you have a problem with a car motor, and find out that it is a few screws that are not functioning. So, what do you do? You switch the screws, not totally replace the engine. Then, *if* the new screws still don't work, and the motor is still not functioning well, then you switch the motor. So, how does this translate to my thigh joints? Well, he suggested surgery for both of them, but not to switch any parts. They both have torn pieces called the "labrum", and that makes the joint pop out a lot during walking, pressing on nerves.

He suggesed to operate on both, one after the other.
For me, I know that means I'd have to block out ten months or a year to recover from [both of] those. But, if I have a better chance of getting out of pain.........

He is a *wonderful* man. So caring and respectuful, and explained everything, saying that he won't let me walk out the door unless I understood everything. He took out models for me to show me the anatomical parts we are talking about. It was a very positive experience! So unusual for doctors- and surgeons- and in my experience, especially orthopedists. The physical exam was gentle, and he actually stopped at the point when I said it hurt. My other orthopedists often go way past that point before they hear me.

So, I will go with that plan. First operate on the right thigh, fix the labrum, then after that heals sufficiently, do the left, basically same surgery, but the left side needs cleaning out of all the scar tissue. I asked about doing them together, but the doc said he doesn't recommend it usually. Doing them both at once significantly raises the possibility of post-surgical infection and complications. The body is weaker if both joints are done at the same time, and less efficient in fighting infection. OK, I'm conviced. That argument will always convince me without question.

So, at the beginning of April I will see my orthopedist at Ichilov, and schedule surgery.
Unfortunately the surgeon who I saw yesterday no longer operates. He is taking a break. He is seeing patients, giving opinions, working in the orthopedic unit of a hospital. Oh well. However, he agreed that my orthopedist who has operated on my left thigh twice is the best for the job.

Then.... can I get off pain meds? PLEASE God????

Again I felt my face start to burn and feel my eyes well up with tears when I told him that this is all for quality of life. I need to be off the meds for me, for my family. I explained how it effects me: can't work, I sleep tons, can't drive distances, need babysitters to help take care of my kids because of pain and the meds, well, you know all of this. Many unsavory side-effects. I don't have to repeat them.

Next update may be a while from now. I am into writing my book, and need all the time I can eek out. I am loving it. Once I have the chapter outline complete and on a microsoft XL spreadsheet, I will reveal the title on the blog. I am so excited about this writing, and all the progress I am making. It is really like a creative substitue for my playing music.

In doing the "blog- slog" (going through my tremendous amounts of writing) for my book, I realized how much I have been in a deep struggle with pain since day one. Almost seven years ago. Seven years of fighting pain, seven years of hope that I will win the struggle. Seven years of pain, almost every day, from the beginning of recovering from NF. Right from the very first day, I thought the pain would be temporary. I never could have thought what the future would hold......

This excerpt is from the first day  of me coming home from the hospital after being there almost a month with the NF. It was erev (the day before Shavuot night), 2007.

"The worst part of my day still remains the bandage change. It is just so scary to know that I am about to experience enormous amounts of pain. I took a percocet and another pain killer on top of it a half hour before, but it was still just awful. I took off the bandage myself while sitting in the shower like they did with me in the hospital, with Robert there for support. Hurt, hurt, hurt. Yuck, fear, owww. Then after the shower, after managing to actually wash my wounds (the skin donation leg hurts more now than the wound itself) I was dry and ready for rebandaging. The nurse at the hospital had taught Robert how to do it, and also my dear friend Hilary (nurse/midwife) was here for lending pointers to Robert and moral support for me. I needed it. The antibiotoc ointment that goes on the bandages burns me very much and that feeling lasts for about a half hour. Hilary was here reminding me to breathe and get through the pain. It's over now until Thursday morning- they told me it must be done every other day at least, but every day is better. So, we did it at 3PM today, tomorrow is Shavuot, so we'll do it on Thursday morning next. I am looking forward to ending this war with pain I am having which seems like it has been years, but actually only 3 weeks. The wound itself is doing much better- B"H- it aches more now rather than the sharp chisel-sort of pain it used to be. Looking forward to the right leg (donor skin) getting to that condition. It is just so painful. Anyway, I am so blessed to be home and with my loving husband and kiddies!! This will all pass, Of that I'm sure."
Tell me, do I still have that sort of optimism? I think I lost it, only to replace it with cynicism. I don't want that to be me.

The next surgery, the next chapter, will begin soon.

21 comments :

  1. There are no words. Just swelled emotions. Good luck with your book.
    Sending you love and strength
    Sarah Goldstein

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    1. Thanks, Sarah. It's warm and fuzzy for me to know you are reading ans sticking with my journey over here. You are becomming a grandma over and over these days (Mazal tov over and over!!!), and you have still heart to give to birthing women, and others (like me) who are on difficult, but spiritual and worthy paths. You're a special soul, XO

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  2. So glad you finally found a doc who "gets" how to listen to you and how to relate to you. Thoughts and prayers keep coming at you through the next several months.

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    1. thank you, dear Annymous. GOt my catcher's mitt on for the prayers coming at me. :)

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  3. How great to be at a new stage. any cynicism has been hard earned and justified. Why should your optimism be the same? Are you? Plugging into that energy that you are finding in the progress and development and evolving of your writing and your book can fuel your new optiimism forward to the operations. Interesting that you note that your relation to the pain and whatever you have had to deal with since the beginning has or hasn't changed in retrospect. Does anybody know what to expect? i'm reading an interesting book about taking baby steps in expectations and habits and other stuff. Maybe take the next stretch with baby steps and minimize (to what is humanly possible) expectations. I'm out there with many other plugging for you and the family and taking big steps praying for the best. All my love.

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    1. Hi Judy!
      I love what you wrote that my writing now can fuel my optimism for these days. I don't like thinking of myself with cynicism, but you put it that it is hrd earned and justified, so it softens the corners.
      And believe me, after these operations, baby steps will probably be all your gonna get from me, anyway! :) love u, 2.

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  4. May G*d bless you, Sarah, as you move forward with the surgery. I'm so glad you found such a wonderful doctor to guide you through the decision. I wish there were more like him!
    Hugs, and good thoughts,
    Jackie

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  5. I pray for all the strength that angels from all higher spheres can lend you, dear one.
    shu

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    1. beautiful image, Shu. One of so many beautiful images you have given me over time. Thank you!

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  6. I hope your Purim was good. It's a time to put on masks, and I know you've been putting on the mask of "pain-free" for a while. My prayers are with you. I just take exception with a doctor who says that your joints are "working fine" if they are so painful. To me, that ain't working.
    Suzanne

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    1. I know, Suz, that was my question, too. I think that the understanding of pain is so unsatisfactory. Nobody can say what is a lot ofpain for another person. I have seen so much different reactions to all sorts of labor pain. We just know that the person who is saying they are in pain, is indeed pain. It's subjective thing. I also asked him "so why am I in so much pain"? To which I don't remember any earth-shattering answer. Nobody has an answer for someone else's pain.
      I hae known birthing ladies who demanded an epidural at one centimeter dilation, and others (me!) who had three completely natiral births (and one cesarean, but that is another discussion). Who knows. The fact is that I have a lot of pain in these thighs of mine, and that he is offering his area of expertise of knowledge and recommending operations to repair what needs reparations. More than that. I dunno.
      XO to you, my dear. (horn chords!~~)

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  7. To use Pesach as a metaphor, Sweet Sarah, I pray that these procedures will liberate you form the slavery of pain that has been your unmerciful oppressor for all these years. That you will reach the Promised Land of relative pain free existence. What a sweet day that will be!

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    1. AMEN to that, bro!!! I love how you wrote that. It is a very appropriate, unique, and special analogy. Lots and lots of love to you. Having you by my side all these years, I know you understand me. And we'll all celebrate that sweet day together!!!

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  8. A decision that is "final" no less! Congratulations! You go, girl; all is good.

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  9. Too bad this doc isn't operating...will your surgeon at Ichilov consult with him or do you have to be a go between? Good luck. Pain is s real downer!

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    1. Actually, this doc *taught* the surgeon who operated on my hip twice already. He told me I am in good hands. B'eH.

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  10. Must feel good to have a plan. And great that your book is moving ahead so well

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    1. On the one hand, caroline, it *does* feel good to have a plan. On the other hand, I wish it didn't involve surgeries. But, what could I expect, you know?

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  11. It sounds like you're making progress on all fronts. Kol hakavod.

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