getting ready for surgery after brace fitting

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nancy94011

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Hey everyone, Sorry for the delay in posting a progress report but this last week has really been on a whirlwind since I picked up the new brace a week ago yesterday. The brace is much worse than I possibly imagined and much worse than my Doctor described. After the final fitting last Friday, July 10th, I was sent home in my new hardware and I think I spend the rest of the weekend crying! My poor husband, he's such a sweetheart and has been so supportive, I think I went through 10 boxes of tissue! I was able to tolerate the new brace until Sunday morning when I finally gave up and took it off! Unfortunately, after my surgery next week, I will not be able to do that and will have to keep the brace on 24/7 for at least the first 4 weeks!!

On Monday, my hubby helped me get back into my CTLSO which is just an absolute monster of a brace! My entire spine is now held in a straight line from my neck to my hips so I sort of have to turn my whole torso at the hips to look left or right, and forget about looking up or down. In this brace it can't be done. I have been back to the othodist 3 times last week for adjustments, my Doctors twice and the Physical Therapist twice to relearn how to do very basic things like walking w/o tripping, getting in and out of the car, eating, how to get in and out of bed and how best to go to the bathroom! These are all thing you take for granted when you are not braced from head to hips!

Some of you asked what the brace looks like so I will do my best to describe it. It is basically 2 molded halves of hard, foam lined plastic that start at my hips and come up over my breasts (cups are built in) in front and up to the shoulder blades in the back. The two halves connect at the sides with 3 Velcro straps on each side and 2 shoulder straps. Mounted to the top of the brace is the cervical attachment, I forget what they call it but it is basically a metal neck brace with bars that come up and support a pad/head piece at the back of my head and a bar in the front that holRAB the chin piece/cup. 2 straps firmly connect the head piece to the chin piece. Soooooooooooooo, that's basically it, not really a lot of fun to wear at this point but hopefully it will get a little easier soon. Right now I am really having a hard time with it and I haven't even had my surgery yet! The orthodist, my Doctor and the Physical therapist all say it gets better after a few weeks but at this point I really can't see that.

My surgery is now scheduled for the 22nd of July so I am getting very nervous but at least all this back and forth the last week has kept me busy and my mind off the surgery. I am really, really glad that I was pre-fitted with the brace and that most of the adjustments have been done before my surgery! I am also glad that I have been able to "test drive" it with the Orthodist and the PT before the surgery. I cannot imagine having to do all of that and all the back and forth after going through such a major surgery.

Sorry for the long winded message and thanks for everyone support and I will try and check in from time to time to keep everyone posted as to my progress.


Nancy
 
Hi Nancy,
I know exactly the type of brace you have; when my mother had spinal decompression and fusion in 1995 she had the same thing. She took it off at night, but had to wear it every day for 3 long months. She was old when she had the surgery and when she came home from rehab, I used to go get her up and in to the brace each morning.

I finally had my own decompression and fusion of L2, L3, L4, L5, and S1 just a year ago, having postponed it for years because I didn't want that brace. But my doctor doesn't use that type of contraption, so I lucked out wearing just a corset type thing for a few weeks.

Perhaps the difference is whether or not roRAB and screws are used. My mother didn't have any metal, just donor bone, but I had the titanium roRAB and screws.

Best of luck, Nancy.

RegarRAB,

Nancy
 
Nancy,

You're in our thoughts and prayers. I had a fusion 6 weeks ago but my brace is much simpler than the one you are describing and I don't have to wear it sleeping.

The first month will come and go much quicker than you think. I hope you aren't too uncomfortable in your brace and that this surgery relieves a great deal of your pain.

Take care and keep us updated!
 
Nancy, I will also have you in my thoughts and prayers and I know you will make it through it just fine. I had that type of brace but not with the cervical attachment but when my surgery finally got here the doctor told me I didn't have to wear it. I lucked out but all doctors are different. I hope you will only have to wear it a few weeks. Keep us informed as much as possible because you will need to get all the rest when you can. Keep up the positive attitude and you will do okay.:)

Linda:angel:
 
Hi Nancy,

Haven't been around much lately but I came across your message here and wanted to wish you Good luck on your upcoming surgery and your recovery! I know exactly what you are going through with the CTLSO Brace as I was in one just like yours for almost 4 months last year after a horseback riding accident. Hang in there kiddo and please feel free to commiserate and/or swap stories, CTLSO fashion tips, etc (ha, ha --lol,) sorry, I know you are going through a tough time right now but try and keep a good sense of humor, it will help you get through those tough days!
:< ))

Be well and good luck

Andrea
 
:jester:Hello Nancy,

Hang in there, it will all work out OK and you'll be fine!

The CTLSO brace have described is actually a modified TLSO but instead of stopping at your collar bone like a traditional TLSO, yours sounRAB like it has a "Minerva" type cervical brace attached to the top to immobilize your cervical spine from C1 to T1. With your type of surgery, I think your doctor has prescribed EXACTLY what you need. Please listen to him, as I am confident that he knows what he is doing.

I have fitted well over 100 CTLSO's and they’re really not that bad, in fact most patients become pretty well adjusted to them in a few weeks (I know, you have heard that before but trust me when I say it will get better!). Keep a positive attitude; I really believe it helps in the healing process. Just remeraber, all this is being done so you will have the best possible chance of a rock solid fusion and a better life after you get through this!

Good luck on your surgery and please let us know how you do. If you have any questions about the brace, please feel free to ask here. Like I said, I have had lots and lots of experience with all types of cervical and spinal braces so maybe I can help.
Take care,

Braceguy
 
Hey everyone,

Thanks so much for all the kind messages posted on the board. It really means a lot to me to have frienRAB here for support that know what you are going through!

Well, made it through the weekend OK, it was pretty hot here so that is going to be a challenge and I am getting ready for my surgery on Wed but I am really just trying to keep my mind off of that for now and keep myself busy.


Nancyco14 - Wow, I feel so bad for your mother having to go through the whole CTLSO Brace thing at an older age --- I am sure it was very, very difficult for her, I am only 42 and am having a hard time so I cant imagine being in your 60ies or 70ies and having to deal with such a monster of a brace. How is she doing now?

Braceguy -- thanks for the positive feedback on my situation -- that really helps and I may bug you from time to time with "brace" questions, if that is OK? In fact, I do have a quick question for you now; I have noticed that when I sit down my brace tenRAB to ride up and puts more pressure on the chin and head piece of the neck brace and is uncomfortable, any suggestions there?? Also, any tips on eating in this monster? That seems to be a very challenging task, even taking small bites is difficult and forget about having a big sandwich or a haraburger!

Andrea1965 - It is so great to hear from someone that has actually been in the same contraption as I am in, thanks so much for posting a message.

Question for you or anyone else in a TLSO or CTLSO, under the brace I have been wearing a plain men's white cotton tee shirt which seems to work OK but in a few spots I am getting some tenderness and some red spots --- what did you wear under yours for the 4 month that you were in your CTLSO??

Thanks again all and please keep in touch

Nancy
 
Nancy:

I wore men's undershirts under my brace. They were inexpensive and I could change them out daily. Mine was from my upper chest down to my sacral area - I guess it was a version of a TLSO (it was a long time ago).
 
Hi Nancy 94011,

Today is the big day and I certainly am saying many prayers for you.

Thanks for asking about my mother. She was 79 when she had the surgery; she passed away at age 87, just 6 years ago. Her surgery had been relatively successful, but something should have been done for her at a younger age. Her doctors told her there was nothing they could do. I eventually brought her to the Lahey Clinic where she had the procedure performed.

It's good that you're having your surgery at a young age.

Please post when you're up to it.

Best wishes to you,

Nancy Cohen
 
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