Not sure what this means

[jackieg412]

Thanks for doing that Ed. I don't have great computer skills. And sitting isn't the easiest thing.
The xrays do tell the long journey. I counted today that the last 5 surgeries have been because of the car accident.
I have a great surgeon and great care team now . So that truly helps.
I can actually manage the pain with the pump and Tylenol so far.I also move a lot.and use heat. Right now I can't soak in warm water because I still can't use my right arm to help get me out of the tub. The shoulder is coming along . I see that surgeon this afternoon.
I really don't think the scapula problem is a common problem from scoliosis fusion. But unless this shoulder doctor says differently today, it all points to a nerve injury from the fusion surgery.
It has been a long journey. I will update later after the Dr visit. If I can get a direct copy of his X-Ray I will share it.

[titaniumed]

I figured you posted your x-rays sideways so we could get our neck stretches done. I almost posted that x-ray tilted left so we could balance out our stretches....(scoliosis forum humor)

Ask if you can have radiology burn the digitals burned to disc, and especially the STANDING SIDE views. The side views are more important, forget the curves. The whole thing, base of skull to pelvis. Get someone to pull it off the disc for you and e-mailed to your e-mail address. You have had kyphosis problems....everyone seems to forget these things, and they are more important. Change NSF to NKF "National Kyphosis Foundation" and nobody would forget. (smiley face)

Your problems started with the original accident over 14 years ago when you started posting....If you wouldn't have had the first accident, do you think you could have made it without doing any surgeries? Thats the big question...We have to decide if we can make it the rest of our lives with our spines....scoliosis surgeons will be able to tell us that. If we have scoliosis as adults, we should go in for an evaluation (by a scoliosis surgeon only) every once in a while. They recommend tetanus vaccinations every 10 years. The best way to remember this would be to get these vaccinations at age 30,40,50 Etc. This would be a way of remembering for scoliosis evaluations.

You don't see groups of truckers rallying against tetanus vaccinations....I guess everyone has that right to get lockjaw.

I would imagine we probably get a tetanus or DTaP shot when we do our surgeries.....This has never been brought up here before. Hmmm....Not sure.

Ed

[jackieg412]

Yes the sideways X-Ray was posted so we can get our neck exercises done. The stiffness of being fused is always present.
I do have a copy of the side view but so far I can't get it to shrink to a jpeg file. I need to keep trying. I was glad to get the AP view.
It has been a very long journey and you are correct, the first surgery was after a work accident. I had spine pain before but didn't have any treatment. I'm not sure when I would have sought. treatment.
I had my first visit with the doctor that did the scapula fusion. He is pleased with the healing and thinks the fusion is successful. it is stiff in movement but now at PT we can move forward.. I am moving more and it has been a little sore.
I haven't heard anyone here post about this being a complication from scoliosis surgery, but he said the ribs looked normal and that leads to the fact that is this from a nerve injury from scoliosis surgery. I just know I tried to avoid this fusion.
Now the big thing this surgeon said to me and this is his words, that he really questioned proceeding with this surgery, he was truly worried about me dying from the surgery. I know it was electives -- fix it or don't. I know all surgery is a risk but I've not experienced someone expressing it so strong. I knew a perforated lung was a real possibility but I didn't have any medical complications except anemia. And that was handled with an iron supplement.
I will look up the fusion hardware name and post it. But it looks like a strip of Cheerios.

[titaniumed]

Jackie, The easiest way to reduce files is to get someone else to do it for you. Unless one is really interested, or getting paid to do it, I wouldn't bother...Not while doing a recovery anyway. Find a young person to do this....

I also was warned about death. It's a hard thing to hear as a patient (the first time) and a hard thing for surgeons to convey...and these highly delicate discussions are why it took me so long to make that final decision. You know they have to tell you about these things...

Your surgeons know you have a long extensive surgery history....hang out long enough on a Florida golf course, and chances are you will get hit by lightning at some point. Lets hope this was your last surgery.

Ed

[jackieg412]

i am trying to attach side view. I think it worked but it is sideways, Ed maybe you can right it.
with my whole heart, I pray this is the last for surgery. I guess that I knew all of the spine surgeries are risky, but I was not prepared for the shoulder Doctor to express it so strongly. I did know there was a chance to perforate the lung, but it did not happen. He might have felt it is an elective surgery with big risk. And you can live without much movement in your arm. But it is done and coming along. A lot of PT to go.
He was always a little thoughtful when I saw him before surgery, but I guess he was worried about death being the outcome. There aren't too many shoulder surgeons that do this procedure, and the one I had has the most experience with it. But on younger people and by his words without a complex spine issue.

[titaniumed]

Considering all that you have been through, you plumb looks excellent. Your not leaning in any direction....It is amazing that they are actually capable of doing these surgeries. You realize that if this all happened 50 plus years ago, things would not be good. Not at all. I can see why this last surgeon might have expressed hesitancy and warnings.

Your upper thoracic and lower cervical areas have had been a challenge and have had a lot of work done. Locating the T1 PSO is challenging and I am not a radiologist...It's fused now so I am not seeing it. I just can't imagine what you went through after the car accident with your chin on your chest.

The side views or sagittal views show quite a bit especially if there is a kyphosis problem....Kyphosis patients with large kyphotic curves can end up with extremely challenging painful neck problems. (smug face)

You know that they do fuse shoulders. I have been meaning to do a post on this, I will do it tomorrow.

My hardware is 14 years old today!

I righted your x-ray. Its below.

Ed

[jackieg412]

Congratulations on the 14 year mark. It is a big deal to have the surgery that you had and be doing so well. I know you have had some cervical pain.
It is always fascinating that some patients do so well and others have more problems.
I guess , while nothing else is posted on it, this scapula thoracic fusion is a complication from scoliosis surgery. The shoulder surgeon did not find deformed ribs ,as thought early on, so the conclusion is that the winging was caused by a nerve injury.
II do want people to know, that I did everything possible to recover the scapula without surgery. It was almost 11 years of trying.
Very few shoulder surgeons do this procedure.
I know it is a rare surgery. It would be interesting to see how many spine surgeons have had this happen.

[titaniumed]

Thanks Jackie

Ed

[jackieg412]

How Is everyone doing? How is your cervical Ed? My shoulder is doing well .
How common are hip problems with full spine fusion? And when should you be concerned?

[susancook]

Hey, hey there Jackie! Funny that you should mention hip problems. My R leg has been weak and sometimes numb and I blamed it on my spine problems. I had an appt with my Physiatrist who ordered hip xrays. I have zero cartilage in my R hip joint and a whole bunch of fluid in the joint space. He decided to withdraw 10 ccs of yellow fluid before injecting steroid and ?? Lidocaine. Within a few hours I had ZERO hip pain. So, now I am in the honeymoon phase and checking out possible hip surgeons.
Susan

[jackieg412]

I really hope that helps. I had a CT scan looking for a pelvic fracture, there isn't A fracture. That is good news but it doesn't help with the pain and limping. We are trying PT and rest. Like anyone can really do the rest part.
I hope I can convince one of my Drs to do an MRI but the pump makes that a challenge.
Keep me posted Susan. I don't think it is an unusual problem with spinal fusion.

[jackieg412]

I am now 5 months past scapula thoracic fusion. I am working on getting the arm stronger but it is doing well. The shoulder Dr feels the fusion is solid. It isn't even that bad as far as pain level goes.
I have comprised for so long, it is like learning that I am really right handed naturally.
The surgeon was real concerned going into surgery but I managed to go thru without any major problems.
And I really hope this is the end of problems

[jackieg412]

It has been a long time since anyone posted, has something changed?

[jackieg412]

After all of this long journey I have received a diagnosis of chronic C-7, C-8 neuropathy. I have known that using my right arm an hand has been changing and not in a good way.
The neurosurgeon has referred me to a neurologist for management of symptoms. According to their message the nerve is "sick" and cannot recover.
I have been having a difficult time walking with limping and imbalance. I will ask if this sick nerve can also cause that.
This has progressed and the message said it will continue to do further progression. The idea now is medication management.
I would think it is from the auto accident and broken neck but I have had so many repairs of the spine.
Anyone else experiencing these problems? If so how do you manage?

[LindaRacine]

After all of this long journey I have received a diagnosis of chronic C-7, C-8 neuropathy. I have known that using my right arm an hand has been changing and not in a good way.
The neurosurgeon has referred me to a neurologist for management of symptoms. According to their message the nerve is "sick" and cannot recover.
I have been having a difficult time walking with limping and imbalance. I will ask if this sick nerve can also cause that.
This has progressed and the message said it will continue to do further progression. The idea now is medication management.
I would think it is from the auto accident and broken neck but I have had so many repairs of the spine.
Anyone else experiencing these problems? If so how do you manage?

Hi Jackie...

I don't have the same issues, but I do have chronic neck pain. It took me many months, but I found someone who does sitting massage. (I have pulmonary issues, and can't lie down for any length of time.) I've been getting weekly massages, and while not resolving my symptoms, have definitely made them somewhat better. It's not inexpensive, but it's worth the cost.

I also have balance and gait issues. I actually lost my balance a few days ago, while applying lotion to my legs after showering. I tried to avoid falling, but lost the battle. I ended up fracturing my left foot in 2 places. While the fractures are displaced, the surgeon thinks they'll heal on their own. It's a little painful to walk, but nothing I can't live with. My biggest goal in life is to keep medical appointments to a bare minimum.

I know that all your issues are daunting, but hopefully you can learn to live with them.

--Kubda