question for those fused to sacrum

[mbeckoff]

I am so glad to hear from you all. From some who post it seems like a walk in the park their recovery. Every time , except for my first post op appt to my Doctor, it has been horrible.

Melissa

[mbeckoff]

Melissa-

I can totally relate to you about the shoulder pain. For the past 2 weeks, I have had SEVERE left shoulder pain. For the past week, it has been so bad I'd give it a 10 on a scale of 1 to 10. Before my surgery on June 8, i had no pain in this shoulder. I am in tears everyday (cry when my kids are asleep). I can barely keep my left arm up, and even when it is down, i feel like someone is stabbing me in my shoulder (think around the rotator cuff area). I am not using the arm at all, so PT was showing me how the back of my shoulder is totally atrophying. I don't know what my next step is...we are not allowed to use anti-inflammatory drugs so I'm not sure how this pain is going to go away. I am started to get very depressed too. My son's 1st day of kindergarten is tomorrow and I am in so much pain it's so hard for me to be happy. Getting through the day is very, very rough. Just wanted to let you know you aren't alone.

How does your shoulder pain feel? Did you have this pain before surgery?

Here's to hoping our shoulders get better! I don't even have time to go to the dr to have it checked out. Too busy with my 3 and 5 year old and their school schedules. Keep us posted as I'm interested to see what they have to say about your shoulder and leg pain.

Jen

Jen,

No I did not have this shoulder pain before surgery. My Doctor says that it is coming from my neck . That is why I am having the MRI today. I will keep you informed. What does your doctor say? My Doctor allows me to take
anti-inflammatory drugs which help slightly but not that much. He says that after 90 days after surgery and signs of fusion have started it is OK.

Melissa

[mbeckoff]

Melissa-- I found the directions for weaning off my brace-- I could split the time how I wanted, and I spread it out as much as I could during the day:

1st week - off for 4 hours
2nd week - off for 8 hours
3rd week - off for 12 hours
4th week - out of brace

Again, it was really achy and difficult, and every once in awhile I cheated and wore it when it got to be too much. If I had it to do again and didn't follow my doctors orders, I'd take an extra week. Best wishes. Gentle hugs.

Susie, if I take it off for more than 4 hours I am in such horrible pain that I have to go to sleep.
He does not want me to not wear it out of my house for now

Melissa

[naptown78]

Your brace

Susie, if I take it off for more than 4 hours I am in such horrible pain that I have to go to sleep.
He does not want me to not wear it out of my house for now

Melissa

Melissa
I had to wean out of my brace also. I was wearing it 24/7 and when I had to stop wearing it, my back muscles were so weak that it was painful to not wear the brace. Susie Bee's weaning schedule looks great. If you cannot be out of your brace for 4 hours at a time at first, try 2 hours twice a day for a week. Like she said, you can split the time if you can't manage the whole time. At first when I was weaning, I would put my brace back on when I was hurting, because it helped with the pain. It takes time for your muscles to build back up so don't get discouraged. Good luck, you can do it.

[golfnut]

I know I've inquired about this before, but . . . Why do some surgeons require the wearing of a brace while others don't? I don't think Dr. Lenke's patients wear a brace after surgery. The only reason I can come up with is that maybe he wants the muscles have to work harder. I plan to ask in Nov. It just seems odd that all scoli surgeons aren't doing the same thing whether it's with or without braces.

[mbeckoff]

Melissa
I had to wean out of my brace also. I was wearing it 24/7 and when I had to stop wearing it, my back muscles were so weak that it was painful to not wear the brace. Susie Bee's weaning schedule looks great. If you cannot be out of your brace for 4 hours at a time at first, try 2 hours twice a day for a week. Like she said, you can split the time if you can't manage the whole time. At first when I was weaning, I would put my brace back on when I was hurting, because it helped with the pain. It takes time for your muscles to build back up so don't get discouraged. Good luck, you can do it.

If there any thing to do that can help strenghten the back muscles when they come out of the back brace?

Melissa

[Susie*Bee]

If there any thing to do that can help strenghten the back muscles when they come out of the back brace?

Melissa

Unfortunately, that IS what is strengthening your back muscles... they are having to work now. And they are rebelling against that. (Who wouldn't?!!!) They were enjoying it much more when that thingamajig was holding everything up and they didn't have to.

Look at it this way Melissa-- it's one more month of hard work. Remember all those kids in high school whose parents bought them ritzy cars for their 16th birthdays and handed them the keys? (Maybe you were one???) And then there were the kids that scrimped and saved and worked at McDonald's or somewhere and bought some kind of used beater that was their pride and joy for awhile because they had worked their tails off for it. They worked hard for it. Right now you are working hard for something. You're working hard to get your life back to where you want it. Through no fault of theirs or yours, some people don't get hit quite as hard with how long recovery takes. Mine was hard and slow. Yours looks like it is too. As Nap said, I wrote about it awhile back-- the tortoise and hare fable comes to life in the scoli family-- we are the turtles, whether we like it or not-- and rightly so, we end up being winners. It just takes awhile. Actually, we all do, the turtles and the hares both, with our stabilized spines and our taller and straighter bodies.

It's too bad that we can't all be hares, but hey, being a turtle gives us a new slant on life, a new appreciation for what we do have, and I will never look at life the same way as I before my surgery. I have SEEN and FELT what winter is like to an 80+ year old woman ("OH NO!, it snowed, I can't go out today! I might fall!") And the feelings of distress when you can't do simple things you used to do. Fortunately, most of those things I can now do or I have moved on to different interests. When I had melanoma at age 20, I started counting each birthday after that as a wonderful gift. I will be 60 on my next birthday. The Lord is good. After this surgery, I have been delighted with each year of progress and how much better able I am a to do things. I thought I was "all done" after 1 year, but I can run circles around that at year 3. Melissa, you will continue to improve. Hold onto HOPE and don't ever get discouraged by how long it takes. I can't wait to see what year 4 brings me!!!

Just hang in there and take each day as it comes. Look at how far you've come. Remember what it was like in the hospital? And those first weeks? I can assure you that you will continue to make progress. Be patient, even though it's hard. Hugs, Susie

PS-- by all means go lay down if your back is hurting-- or sit in a comfy spot with pillows supporting your back. And break up your out-of-brace time into chunks.

[Susie*Bee]

I know I've inquired about this before, but . . . Why do some surgeons require the wearing of a brace while others don't? I don't think Dr. Lenke's patients wear a brace after surgery. The only reason I can come up with is that maybe he wants the muscles have to work harder. I plan to ask in Nov. It just seems odd that all scoli surgeons aren't doing the same thing whether it's with or without braces.

Karen-- My surgeon doesn't brace very many of his patients. He wasn't sure if he would brace me or not, but said to bring men's t-shirts (undershirts with sleeves) that fit snugly, just in case, to the hospital with me. Mine was a long fusion (15 levels) and he must have decided with all he had done and that I looked fragile or something, that I needed the extra support. They molded the brace for me while I was in the hospital.

So I don't think it's the case that some surgeons always brace their patients and others don't. I'm sure it's a case by case decision with at least many surgeons, based on what's going on. Sometimes it's for protection (the patient might not be careful about not bending, etc.), or like me, just needing the support. There are probably other reasons out there that others might know of.

[golfnut]

Susie,
Dr. Lenke's office called to day to see if I wanted a Nov. 29 date that just opened up, but I decided to stick with Jan. 5 so I can enjoy the holidays. Anyway, since the brace question was on my mind, I asked. I was told Dr. Lenke doesn't like to brace so that the muscles have to work harder. I will have a long fusion, too, so we'll see. Thanks for your answer.

[Susie*Bee]

Karen-- First, I think you're smart to enjoy your holidays! (Although I do remember many members who just wanted to get it over with and opted for before them...)

And second, I just can't imagine not having the brace myself. I had a rough enough time managing with it. So I think in my case my doctor knew what I needed. I'm sure Dr. Lenke will know what you need-- and you probably won't need one. Take care!

Melissa-- I've been thinking (oh no!) and didn't want you to think you will be like me. Your overall recovery may still be much shorter than mine has been, so don't get discouraged. Everybody is different. You'll just have to wait and see. The important thing to remember is that you will continue to get better at your body's own pace.

[KathK]

Susie, you are an inspiration! I'd like to thank you and others who continue to post and offer encouragement many years after their surgeries. It is so valuable for those of us "in the early phases of recovery" to read about your successes and accomplishments at 1, 2, and 3 years out. Believe me, I soak up every word!

[mbeckoff]

And second, I just can't imagine not having the brace myself. I had a rough enough time managing with it. So I think in my case my doctor knew what I needed. I'm sure Dr. Lenke will know what you need-- and you probably won't need one. Take care!

Melissa-- I've been thinking (oh no!) and didn't want you to think you will be like me. Your overall recovery may still be much shorter than mine has been, so don't get discouraged. Everybody is different. You'll just have to wait and see. The important thing to remember is that you will continue to get better at your body's own pace.[/QUOTE]

Susie, Thank you so much for your kind words . They mean so much to me. As I am just starting out in my recovery to have someone respond who is far out it means a lot to me. I am taking the brace off longer and longer. When my back really starts to hurt then I put it back on.

Melissa

[mbeckoff]

Neck MRI

I also wanted to add that I had my neck MRI last night. My doctor has a sitting/standing MRI . I did the sitting and while it was not as bad as the traditional MRI on my back , I had some pain . But I survived. I will have the reesuklted on Tuesday. I need to know why the left side of my back and my shoulder and my leg are in bad pain. There are days when I cannot use my left arm. Hopefully , we will find something.

Melissa

[JenniferG]

Melissa, I'm glad the MRI wasn't as bad as expected for you. Roll on Tuesday. Don't forget to post the results.

Meantime, are you getting any easing of the pain?

[Back-out]

My surgeon had said that at 3 months many people regret they had the surgery, at 6 months, some still do, but by one year almost all are so glad they did.

This is an excellent point - for many patients to refer to!