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Tableone
07-27-2015, 12:59 AM
Hello everyone:

I'm fused T2-L3.

For thirty years, I have suffered with various types of thoracic pain. I've had a tight "bearclaw" feeling, burning, a DEEP ache in between my shoulder blades and over shoulder blades and rib hump (feels like there's a chainsaw in my back) and general horrible fatigue feeling in my upper spine. In the past few years the deep thoracic ache is so bad at times that I actually cry in public. Also, the past two years I frequently wake up in the middle of the night and in the morning with my right arm numb and it takes me several minutes before I can move my numb fingers.

The only good thing about the "ax in the back" pain is that, unlike my broken spine lumbar pain, it comes and goes. But, when it comes it's a mother!!!

All my MRI's and X rays have shown nothing.

I've asked every Scoliosis surgeon about it (and I've seen several recently) and they either won't comment, or they say there's nothing they can do about "it," but they don't say what the "it" is. Finally, one surgeon actually talked about it with me. He said that "all of us" - meaning anyone who had had Scoli surgery eventually got this thoracic pain, and that no one had any idea what caused this pain, or what is was and that there was absolutely nothing to be done about it.

This is just unacceptable to me. Why hasn't any research been done for us? I think as Scoli patients we need to stand up for ourselves and demand that the Scoliosis medical community start taking this seriously and DO something! Why hasn't the Scoliosis research society done a study on this? Doesn't anybody care about us? Sometimes I think they just fuse our spines, go home to their families and their dinner, say to themselves "Oh, I straightened another spine," and don't give a darn fig about our pain afterwards.

jackieg412
07-27-2015, 07:10 AM
Just a suggestion but have someone make sure your scapula are moving correctly. My right scapula kept causing a snapping and locking pain. This went on for years. Finally the scapula locked on a set of deformed ribs. I recently had a very unusual surgery to help fix the problem.
Since the scapula moves through there maybe it can cause the pain. I will send more info if you would like it.

titaniumed
07-27-2015, 08:42 AM
There are no answers to the bear claw gripping in the thoracic. It seems that we need to be able to lay down when this happens, it always helps.....

When you look at photos of scoliosis surgery, the 5 inch wide trench the length of our spines is quite invasive. I have gotten used to looking at these photos now so donít really think about it much but it is invasive surgery, no doubt. This stripping of soft tissues creates scar tissue and scar tissue is a problem. I have stitches in my head from an accident when I was a kid, and I have had to scratch this area every day for 50 years. This is also a shallow cut. Its scar tissue related, it has to be, perhaps the nerve cells reacting to atmospheric pressure? Thatís the best I can figure.

My surgeon mentioned that itís moisture related, but Iím a diver and it doesnít get wetter than that. (smiley face) I donít notice any difference on the spine while diving now that Iím fused.

I think that we have posted about our bear trap issues here quite a bit over the years and someone has to be reading.....itís a common occurrence.

Whatís strange is that this feeling doesnít happen in the Lumbar spine. Those pains are different. Iím sure many would agree. My anterior scars produce no pain whatsoever, so this really creates a conundrum.....Every time we might think its something, its something else. Self diagnosis is fruitless.

We are complicated. Our bodies are engineered beyond belief, beyond knowledge. So complicated that we cant figure things out in thousands of years.......

Ed

cathydrew
07-27-2015, 04:10 PM
Ugh what? I have this to look forward to? Ed, when does this usually start?

mabeckoff
07-27-2015, 06:56 PM
Unfortunately, Ed is correct. I have it as well.

titaniumed
07-27-2015, 07:47 PM
As your body heals, and after all the pains of immediate recovery pass, you will notice what ďmight notĒ heal, or notice any problems areas.......We all hope this doesnít happen, and there is no way of knowing. This is why surgery is usually though of as a last ditch effort.

This seems to stand out if every single thing is perfect......If there are 100 problems and 99 get fixed, you going to feel that final problem. 99 out of 100 on a test sounds pretty good, but with surgery, surgeons are expected to get 100% on the test of surgery, when there are things that are not known or beyond their control.

The pains that Table is talking about are Harrington rod related which I donít doubt for a second. The Harrington rod survivors of today are a special group, along with all the elder cast scolis that are out there. It was what they had at the time. Dr Harrington was a pioneer because he considered something that was outside the box. It was a radical concept at the time and he was trying to save these kids lives down in Houston. One thing led to the next and now we have modern style hardware. In the future, there will be no hardware.

I have a bear trap thread I started many years ago......itís a gripping and not an axe type of pain.

Once again, try not to expect problems.....

Ed

Lizardacres
07-27-2015, 08:19 PM
My surgeon said that if you do heart surgery and the patient improves 30% the surgery is called a success, but if you perform back surgery and get a 30% improvement in pain, patients consider the surgery a failure. Just food for thought. Kind of a glass half full vs half empty.

susancook
07-29-2015, 02:53 PM
Lizard: I looked at your X-rays....where is your L pelvic anchor fixed?
Susan

Lizardacres
07-29-2015, 04:30 PM
Lizard: I looked at your X-rays....where is your L pelvic anchor fixed?
Susan

I don't have one - I was too drugged up at my first follow up appointment to notice this on the xray, but I saw it later and posted about in my thread. I did ask the surgeon about it and he told me he doesn't always anchor both sides, that it is not necessary in all cases. Linda said she only has one, too. If you dig through my thread I think some others commented they only had one also.

As long as I fuse OK, I'm happy about only having one.

JenniferG
07-31-2015, 01:19 AM
I've never had this bear claw thing. I have often wondered what was different about my surgery. I'm 6.5 years out now and I am hoping your surgeon is wrong on that point, tableone!

I still walk about 5 times a week. My surgeon told me to walk daily for the rest of my life. Does everyone who has this bear claw pain walk daily? When I walk, I can feel movement across my rods in the thoracic area as I swing my arms. Just wondering...

Doreen1
08-04-2015, 06:29 PM
I have bear claw too. What sets is off is if I'm in a crowded area, I tense up because I've had people bump into me hard. That stress immediately shows up throughout my thoracic area. Ed's right, laying down helps tremendously. Things that have helped are weight training (surgeon approved) and massage every 3-4 weeks. Some people experience it and others don't.

Jamie1955
08-11-2015, 03:37 AM
I am confused as to what you ladies are referring to when you say bear claw. I do not have thoracic rods but I am fused in my thoracic spine. I do have lumbar rods. I have always had a pinched feeling in my thoracic spine. Mostly during the holidays when I would be out shopping and tensing up holding onto bags. My pinch has turned into something more constant and I now feel it almost all the time. It feels like a knife turning in between my spine and my rib hump.i have told both of my surgeons and they both have not investigated it. They just prescribe Valium as they believe it to be a spasm. Is this the feeling you are talking about? Is this a spasm? Has anyone had another answer from their doctor? It's 4:30 am and this pain just woke me up from my sleep. I have also reported the pain waking me up at night seems like a lot of people complaining about this same symptom. Dos anyone know what this is?