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View Full Version : Continued Tightness in Thoracic Area.....18 months post op : (



Marina63
01-04-2013, 01:50 PM
Hello All!

There has been some brief discussion about the "bear trap" feeling some of us have post op. I was more than willing to put up with it for a year or so but I still have this tightness and I am going on 18 months post op. I have this feeling all the time. Sometimes it's mild and sometimes extremely tight and every now and then I get sharp shooting pains in different areas on my back.

I am pushing 50 so maybe it just takes longer for me to heal but I thought at this point I would be free of the constant tightness. Like someone else on the forum so perfectly put it, it's like having the brace on all the time. I do get relief when I am sitting in a high backed chair or lying down. The varying degrees of tightness seem to be completely random.

As it is more discomfort than pain, I don't take anything for it. Wine does help relax the muscles a lot but I can't drink wine all the time : ) I don't want to take any prescription meds either. I need to be awake and alert for my job and daily activities. I do not have the luxury of staying home and resting daily. I do when I can.

Anyone else have this? I am growing concerned that it may be more than regenerating nerves or healing muscles at this point.

jackieg412
01-04-2013, 04:37 PM
Hi,
I can relate to all of your feelings and include a very sharp nerve feeling when I touch a certain area of my chest wall. I still cannot wear all articles of clothing due to this problem. I am on gabapentin for this tight feeling, it does not have a real bad side effect with me and does help tame the NERVE! My dr siad it could take up to 5 years to heal. He has had the same response in his own body. so he really knows what I mean. My thorasic surgery will be 2 years in Feb. My scoliosis surgery was done on 2 different times. The 1st--t10 -pelvis,did not do this,but the second one t-2 to t-10 was the one that created the issue.You may try lyrica or gabapentin---some side effects but not too bad.

Lue
01-04-2013, 05:45 PM
Hi Marina, your post sounds just like my Thoracic area, Jan. 9 will be 1 year I had a old rod break(IT WAS 9 YEARS OLD) and 2 rods were replaced, and I still have strange feelings back there. May of 2011 I had surgery, he did a PSO, and when the rods were replaced that surgery was worse then the first, and the first was a much bigger surgery. I though it was just me with the pain that feels like nerve pain, and burning, in the shoulder area, and center of spine. Like you I try not to take anything, but rest does help, and I work also, but I do rest when I can. I hope yours goes away soon, 18 mo. is a long time. My Dr. said it will get better. Lu

walkingmom
01-04-2013, 06:42 PM
Hi Marina,

I can definitely relate to the tightness that you are experiencing and I am just at 20 mos post-op. A year ago the tightness was so bad that it would spread across my chest and I would have no choice but to lie down. At least I dont have the chest tightness anymore. Now lying flat on my back is really the only time that I get complete relief from the thoracic tightness, but hot towels and hot showers are helpful. My preference is to sit back in a slight reclining position if I must sit down. In the evenings I prefer sitting in the recliner.

It's not painful, as you say, but it is most uncomfortable. It seems to be worse on my left side. I continue to walk or play tennis everyday and lift weights (i.e. pectoral fly, pull downs, rowing) 2-3 times per week. I just try to go about with my regular daily activities and tune it out best I can. I had tried gabapentin, but stopped at 7 mos post-op because I couldn't think straight while taking it. Now I just pop 1 Aleve each day.

Wish that I could tell you that it goes away, but I am like you waiting for the tightness to be gone someday. Donna

king14
01-04-2013, 06:52 PM
I use the body blade with my PT and it seems to help alot!! when I use the muscles In the thoracic area it seems to relieve the pain. That- and wet heating pad.

Lorz
01-04-2013, 07:18 PM
I am now 19 months post-op, and still have the tightness and pressure in my back all of the time. It also wraps around to my chest wall on one side. I have tried PT, aquatic therapy, massage, myofascial release, acupuncture, and 4 different meds for nerve pain. Nothing has helped. It does feel like I am wearing an internal brace. Lying down is the only thing that relieves it.
I am wondering if all of you that have this issue had BMP used in their surgery? There is an FDA investigation currently looking in to Medtronics, the company that makes it, due to their lack of reporting known adverse effects of this product. If used "off label" it can cause chronic pain, nerve damage, and ectopic bone growth.It is only approved for use in anterior fusions. Since I had a lot used in my surgery, I can't help but wonder if the BMP might be the cause of the problems?

walkingmom
01-04-2013, 10:54 PM
Lori,
Probably for most of us, we all have lots of bmp that was used in our surgeries. Plus, all of our bodies have to adjust to all of the instrumentation that is now part of us. As for me, my thoracic tightness was present immediately after surgery. I didn't realize it until I saw my before/after surgery photos that I was literally pulling my left shoulder up to appear as if I had even shoulders and apparently that left muscle was stuck in that position for years. After surgery, that left muscle ended up in a new position as my shoulders are now even and the left shoulder has dropped into a relaxed position.

I just wish that those upper back muscles would just settle in and embrace the idea that the rods will be there forever and that my muscles and rods could co-exist in my body. it just might take a long time. Just my thoughts....
Donna

Marina63
01-05-2013, 07:32 AM
I use the body blade with my PT and it seems to help alot!! when I use the muscles In the thoracic area it seems to relieve the pain. That- and wet heating pad.

Thanks, King! I have found the same and many other things relieve the tightness but do not get rid of it.

Marina63
01-05-2013, 09:32 PM
I just wish that those upper back muscles would just settle in and embrace the idea that the rods will be there forever and that my muscles and rods could co-exist in my body. it just might take a long time. Just my thoughts....

Yes! Hoping those muscles settle down.

I exercise daily and lift weights to try to strengthen and get those muscles to relax. I have been trying to relax my shoulders and arms and it does help. Hot showers, moist heat do wonders for it!! It just doesn't last very long.

I go to massage twice a month also. Nothing has gotten rid of it.

Thanks to everyone for their input. So glad to know I am not the only one experiencing this discomfort.

Doodles
01-05-2013, 10:20 PM
Hi all--
I don't tend to post much anymore since it will be 4 years at the end of March, but this topic caught my eye. The upper back is almost always tight. That's why I feel I can't ever forget about my back. I feel sort of embarrassed that I have to read almost daily--always lying flat! I feel like I'm being really lazy, but that's the best way for me too--& really hot showers and my always present heat pad for bed. I exercise too--4-5 times a week--zumba, treadmill, weights, etc. etc. I really feel awful if I don't. Not that I wish anyone ill, but it was nice to know I wasn't the only one! What is the body blade?? I want to know about this. Thanks. Janet

Confusedmom
01-05-2013, 11:29 PM
Coming up on 10 months here, so not as far as the rest of you. But this describes me to a T. I constantly wonder how metal that is centered in my back can make me feel like I am wearing a metal bodice that wraps all the way around! Okay, that may be a slight exaggeration because the front doesn't feel that way. But the whole upper back does. I also am only comfortable lying completely flat--no pillow. Sometimes lying for long periods makes other things ache, tho. I did get a massage today, which helped for a couple of hours. Muscle relaxants are good--but I only use them for special occasions (long car trips, etc.).

I don't think it's the BMP. My BMP was mostly in my lumbar spine, where they thought it would be difficult to achieve fusion. I also don't have the feeling it's nerve-related. I don't know why--just doesn't strike me that way. I think it's as someone said-- the muscles can't quite get used to the metal. I had spasms for several months at first. I told Dr. Lenke's nurse that it felt like I was being kicked in the middle of my back by a horse! At least the spasms are gone. I do think the tightness will diminish over time (seems to have a little for me), but probably never completely go away. I look forward to being 1-year postop, when I can start more stretching, lifting weights and more vigorous PT. For now, I try to lie down for 10-15 minutes every few hours. More if I have time!

Marina63
01-06-2013, 07:30 AM
I am relieved to hear so many others are having this same issue. I was getting a little worried.

Rarely, it does feel like a metal band is wrapped around my chest and upper back. The feeling of being kicked by a horse is a great analogy!

I guess I just need to resign myself to the fact that the tightness will always be there to some degree. It does help (constantly ^^) me remember to take it easy and be careful.

Exercise helps me as well and not working out makes me feel bad. Even just walking is good.

Another issue I have is near the top of my incision there is a super, ultra sensitive spot. When my hair or a tag in my clothing merely brushes against it, it hurts and tingles. This gets more intense as the day wears on. In the summer, when I wear lighter tops, I often have to pull my hair up to keep from touching this area.

kennedy
01-06-2013, 08:16 AM
im going on 3 years post-op and my thoracic area is still tight.. but only in the winter it really bad

bluestone
01-06-2013, 09:12 AM
I'm 2yrs post op and this is still a big problem for me.
My surgeon says it is most likely my metalwork that's the problem because of lack of flesh in that area-I also have 3/4 protruding screws there. I'm waiting to go and see him to discuss a bone scan I've had to determine whether I've fused so we can discuss removal of my hardware. I'm very undecided about this though because I'm so scared of curving again.

It's so frustrating because in some ways my back has improved more-apart from that awful pressure and tightness in the middle that's only relieved by lying down.

Marina63
01-06-2013, 09:27 AM
My surgeon says it is most likely my metalwork that's the problem because of lack of flesh in that area-I also have 3/4 protruding screws there. I'm waiting to go and see him to discuss a bone scan I've had to determine whether I've fused so we can discuss removal of my hardware. I'm very undecided about this though because I'm so scared of curving again.

I have very little flesh on my back as well. Could that be the issue? Or at least part of it? I've also thought about getting the hardware removed. From what I understand, once you are fused, removal of the hardware is fine. The curve won't come back. I have my two year follow up in June. I'm wondering if I should go/call sooner. I just don't want to be given meds for this. I can't live my life with meds just yet ^^

@Kennedy: I hadn't thought about the weather. I don't remember it being so much of an issue last winter but maybe the cold is making it worse. I am usually indoors and am never cold. On a recent trip to NYC we were outside in 40 degree weather walking all day and I was fine. Maybe because I was too busy to think about it.

bluestone
01-06-2013, 02:37 PM
I have very little flesh on my back as well. Could that be the issue? Or at least part of it? I've also thought about getting the hardware removed. From what I understand, once you are fused, removal of the hardware is fine. The curve won't come back. I have my two year follow up in June. I'm wondering if I should go/call sooner. I just don't want to be given meds for this. I can't live my life with meds just yet ^^

@Kennedy: I hadn't thought about the weather. I don't remember it being so much of an issue last winter but maybe the cold is making it worse. I am usually indoors and am never cold. On a recent trip to NYC we were outside in 40 degree weather walking all day and I was fine. Maybe because I was too busy to think about it.

When I was 1 year post op I told my surgeon the pressure pain wasnt going away he said very casually don't worry if its still like that at 2 years I can remove the metalwork. At 2 years I told him its the same so I was sent for a bone scan. I asked him if it was possible to just remove the part in the middle of my back he said he's not done it before but its a possibility so we will see.

On the days its not so bad I could live with it and accept I can't be as busy as other people-but then I do have a busy day and I can't bear it. Its going to be a difficult decision because I know there's no guarantee that metalwork removal is the answer.

Marina63
01-06-2013, 04:58 PM
When I was 1 year post op I told my surgeon the pressure pain wasnt going away he said very casually don't worry if its still like that at 2 years I can remove the metalwork. At 2 years I told him its the same so I was sent for a bone scan. I asked him if it was possible to just remove the part in the middle of my back he said he's not done it before but its a possibility so we will see.

On the days its not so bad I could live with it and accept I can't be as busy as other people-but then I do have a busy day and I can't bear it. Its going to be a difficult decision because I know there's no guarantee that metalwork removal is the answer.

And the fact that you will have to go through major surgery again : ( What is the recovery time for hardware removal? Is it as grueling as when you had the fusion surgery?

Confusedmom
01-06-2013, 10:18 PM
I would be extremely cautious about hardware removal. I met Nanlo from the forum at an appointment with Dr. Lenke, and she told me her initial surgery, done as a teenager, was done without hardware. She got fusion, but because bones are a living thing, they continued to curve over the years. She had to have a revision many years later. (Nanlo, I hope I'm recalling this accurately!) Anyway, it scared me away from hardware removal. (With the possible exception of my iliac screw--but that's a different issue.)

bluestone
01-07-2013, 03:56 AM
I'm certainly not going to rush into anything, I'm trying to find as much about it as I can. Unfortunately there doesn't seem to be many people who have had this done so I can't really go by others experiences. I have spoken to the mother of a 15yr old who had her hardware removed after on going pain and pain is no longer an issue for her.

My dilemma is that I'm sure these 3/4 protruding big screws just to the right of my spine in the thoracic area give me a lot of discomfort and they are in the area where all my pain is-but just those alone can't be removed because of how they are situated-the whole lot has to come out. These screws are also on the apex of where my curve was and where all my correction was achieved.

jackieg412
01-07-2013, 04:44 PM
Please don't rush into this, My surgeon talked with me about removing some screws, but we ended up fusing the levels above,because that was what was bothering me. I hope it will soon get better for you
Jackie

Marina63
01-09-2013, 08:33 AM
I definitely wouldn't consider removing the hardware unless there was an issue and that was the only way to correct it.

Besides, I don't think the insurance would pay for the surgery if the reason was only that the hardware was uncomfortable : (

bluestone
01-09-2013, 03:19 PM
My hardware isn't just 'uncomfortable' at times its damn painful!
My surgeon examined the protruding screws and said they were very protruding and agreed they are most likely causing my pain. It's just unfortunate it all has to come out in order to remove them-that's why it's a difficult decision for me to make.

I have no worries on cost-I'm in the UK so our wonderful NHS will pay :))

Marina63
01-09-2013, 07:14 PM
You are fortunate to have such great health care!! Perhaps someday we will be there too : )

Your situation does indeed sound painful and hopefully your surgeon can get relief for you. Mine is more discomfort than pain and I don't think my insurance would cover any surgery for mere discomfort. Although at times, it does hurt. Brief, shooting pain, nothing constant.

jrnyc
01-09-2013, 07:32 PM
i think it would be awful to have insurance refuse to remove painful
hardware...
insurance tries to get away with a lot...
i just had an assistant at my pain doctor's office get approval
on a prescription...i've been taking the medication for about 2 years...
i had to change from one branch of Aetna to another...all of a sudden.
the new branch said they wont pay for same medication...
it would cost me $250 a month...one phone call and she had it
approved, when i was about to just start paying for it...
i think patients in this country have to stand up and let the
insurance companies know that we expect better care and treatment
from them...same insurance companies who are busy paying their CEO's, and other top executives, millions of dollars salary and bonuses a year...

jess

Marina63
01-09-2013, 07:40 PM
i think it would be awful to have insurance refuse to remove painful
hardware...
insurance tries to get away with a lot...
i just had an assistant at my pain doctor's office get approval
on a prescription...i've been taking the medication for about 2 years...
i had to change from one branch of Aetna to another...all of a sudden.
the new branch said they wont pay for same medication...
it would cost me $250 a month...one phone call and she had it
approved, when i was about to just start paying for it...
i think patients in this country have to stand up and let the
insurance companies know that we expect better care and treatment
from them...same insurance companies who are busy paying their CEO's, and other top executives, millions of dollars salary and bonuses a year...

jess

So true, Jess, and such a shame that we have to work so hard to get what we need.

Marina63
01-21-2013, 09:13 AM
Geez, who would have thought that healing would take so long. It's a complicated surgery, I get it, but 18+ months??

Went to see my surgeon last week just to make sure everything was okay. Had x-rays and he told me everything looks fantastic. At least I don't have to worry about protruding screws, broken rods, etc....

He also told me to continue with my workouts.

I'll continue to heal and try not to fret : ))