Not sure what this means

[titaniumed]

I knew you would like that video...yes, gab is a replacement med due to the opioid crisis. The thing is that people are now abusing gab these days....You remove one street drug and it will get replaced by another. Remove marijuana and it will get replaced with tumbleweed. (smiley face)

Surgery is always a delicate decision....

On a positive note, they have done various surgeries on centenarians.....
Age 111 Mostly hip procedures, some knee.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7154456/

Dr Burch operated on a 94 year old scoliosis patent, but it doesn't state the procedure. I guess we can assume fusion of a few lumbar levels and not just laminectomies
https://spinecenter.ucsf.edu/there-a...-spine-surgery

Is there any benefit in bracing your scapula?

Ed

[jackieg412]

I do believe in the idea of the least amount of medication is best. Even though I am a child of the 60's. I never tell into the drug culture of the times.
We did try two different braces. The first is like a sling often used for stroke victims. The other was like a strap across both shoulders. The first helped to hold it up but it makes the hand not usable. And with the numbness I will never stand it. The second one ,I could not get it tight enough to do any good. We thought of taping, but how do you do that every day. Also it would be very hard on the skin and probably lead to skin problems.
We can do nothing or the
delicate procedure. A shoulder replacement will not help because it isn't the shoulder it is the scapula.
Another major problem that this doctor said is the problem caused by muscle failure due to the thoracic fusion. Probably we can say a different problem of being a scoliosis patient.

[jackieg412]

OK another question. How do you handle another major surgery and recovery with a total fused spine? Other than one day at a time.
It is difficult for even medical personnel to understand that the spine fused is a game changer. You can't just get up, turn over, walk,etc. Without some thought or repositioning.
Ed you had a shoulder surgery soon after your spine surgery. How did you do that? We're the surgeons and their team understanding of the necessary adjustments needed because of your spine?
I see my neurosurgeon on Monday and I want to ask him to help me decide to go forward with this scapulothorasic fusion of just let it be. I am now comprising the ulnar nerve to my right hand through the brachial plexus. The scapula loose has my shoulder so far out of place, I can pull it facing forward rather than side facing. Also, there is a balance struggle if I don't think to hold it up. The arm is not usable reaching forward if I don't manually put into place.
Such a decision.

[titaniumed]

OK another question. How do you handle another major surgery and recovery with a total fused spine? Other than one day at a time.
It is difficult for even medical personnel to understand that the spine fused is a game changer. You can't just get up, turn over, walk,etc. Without some thought or repositioning.

I hate to flip this but this really is a question for patients like you, and other multiple revision patients with 10 plus spine surgeries under their belts. Each case, similar but different, is of huge interest to many of us....Melissa and Susan are also in this group forging difficult paths of recoveries.

Doctors, Nurses, and other medical professionals really have to think about these recoveries and prior cases are cases that help somewhat in this regard.

One day at a time might not be the answer we want, but what happens is that it gets figured out. Nobody on the planet could tell me how I was going to put ski boots on with a full fusion to the pelvis. I threw my ski gear in my RV and drove to Park City in April 2009 and was going to figure it out which I did. I only bought the lift ticket after the boots were on. I didn't know how I was going to ski, but I was going to find out.

When you have no arms and want to pump gas, all you have to do is ask anyone for help. I can't imagine anyone not helping pump gas for this girl. But she figured it out.
https://www.youtube.com/watch?v=_1_d...l=TishaUnArmed

Finding Joy in the storm
https://www.youtube.com/watch?v=96xP...l=TishaUnArmed

Ed

[titaniumed]

Ed you had a shoulder surgery soon after your spine surgery. How did you do that? We're the surgeons and their team understanding of the necessary adjustments needed because of your spine?

I was about 8 months post scoliosis surgeries and 2 months late for my 6 month visit. At that point, my surgeon was telling me that I was fused and that it really was time that I had the shoulder repaired. My arm was not working and was just hanging there. I guess I didn't need that arm too much and was doing everything with one arm. It actually didn't matter much at that stage because I got used to it.

My humeral head or ball at the top of the arm was 80% shattered like broken glass. These fractures always show up on x-rays, they stay there forever. When I was in spine recovery, my humeral head fused with a huge lip on it so it was physically impossible to lift the arm. After the shoulder surgery, I went into PT right away, 3 days later, they didn't want it freezing up. My PT was scared of my spine and I told him its ok. The whole shoulder physical therapy process was not only beneficial for the shoulder, but it was also excellent for the spine, especially the arm bike in toughening up the paraspinals in the thoracic. After a few months when my arm surgeon caught me doing 50 pull ups he commented, I can't even do that! So, PT ended at that point. Ha ha That doctor was just shaking his head.

I then went to the Redwoods to resume walking therapy to get up to a mile. Push the pain threshold, lay down, repeat every 2 hours for 2 weeks. It worked. It was the trees and the environment, the unwinding of the mind. I did all of this alone in the woods, just me and the trees....Its holy ground there.

I was off all meds and had to push past the pain. I knew all along that if I were to continue on, it was not going to include repeated medication usage. It takes a LOT of pain before I take any medications these days.

Ed

[jackieg412]

I had seen a video of the young woman before. It speaks volumes on what can be accomplished when you have no choice. Just like your ski boots, no one can tell you how , we just try and see what works or doesn't.
Just like you comprised when you couldn't use your arm. Just a question, was it your dominant side?
I have been compensating for years. First it was stuck at about 2 months last thoracic fusion. The scapula just pulled off my back when I reached forward. My PT put it back. This went on for years, I would pull it off and he would put it back. And then one day no one could put it back, thus the partial scapula removal and less than a year later the muscle transfer. And that gave the scapula the stability for me to use my arm. And that lasted and 2 years until the auto accident. I was to have this done about 2 years ago, but I
developed the wound that wouldn't heal and then covid and then the spine collapsed and the major revision last October. I
So here we are. Do you try the surgery or just do nothing and let it continue as is.
The surgery will be a fusion of the scapula to the ribs. There can be no movement of that arm until fusion heals. It is my right and I was right handed. I'm not sure how because I compensate so much.
I know most shoulder patients go right in to IT but with this you can't.
It still is a scoliosis problem because there is a direct connection to the scoliosis surgery. There is a possibility that a nerve got involved that allowed the muscle holding the scapula to fail. Second possibility is the displaced ribs.
I have spoken to Susan but I haven't heard anything about Melissa in awhile. I hope she is OK.

[titaniumed]

Just a question, was it your dominant side?

Yes, my right arm. Funny, I always went skiing in a 4 wheel drive truck with a stick shift but on that day, I took a car with an automatic transmission. I had to reach over with my left arm to put the car in drive. I have lost use of both arms at different stages.

I slept on my left side only for 1 year after my scoliosis surgeries. The anterior and posterior bandages push on the incision sites which was uncomfortable and the shoulder was painful. I did everything lefty for quite some time.

You have an excellent understanding of your problems....Making this scapula fusion decision is going to be especially difficult and I would be prepared for indecision from your doctors. If surgery is off, you could ask about a "dynamic" custom made brace. For example, below is a company I found 2 hours south of you. Custom is going to be expensive. It has to be designed by a doctor on a CAD system. After design, they will 3D print the parts. They will laser scan your body for your body shape.
https://www.jointactivesystems.com/products

I spoke with Melissa on the phone about a year ago. She is doing fine, working, and stopped all medications. For spine revision surgeries, she might have set the adult record. After all of that, she came through ok which is amazing. She is a heavyweight, the Muhammad Ali of scoliosis....

I guess that makes you George Foreman. (smiley face)

Ed

[titaniumed]

Back on bracing.... I can't imagine a hard scoliosis brace not holding or keeping your scapula in place. The Copes brace I had fit extremely tight and would push the rib hump in (and lumbar hump) with a lot of force....Put it this way, it was a really tight fit.

Today, they laser scan and 3D print braces for exact fitting. They also have holes or openings so they are not as hot as the old full wrap style of scoliosis braces. Braces need to be engineered correctly to really be effective.

I don't think you should discount bracing as far as holding your scapula in position.

One of my big beefs was the split in the back with the strap.(old school) Splitting in the front and using the right style of clamping or fixation device makes adjustment easier. For example like a ski boot buckle made from plastic...that you can adjust with your good hand.

If you google, "3d printed brace for scoliosis" and select images, you will see all sorts of different designs.

Ed

[jackieg412]

I have no idea what will be best. I have not had a custom brace but have tried 2 different types. The problem is getting them on by myself and then getting them tight enough to do any good.
Let's add patience enough to wear the rest of my life.
At no time did Dr. Romero offer a brace solution . All he said was that I would need a fitted gun - slinger type brace for total immobility for 6 weeks after surgery. His biggest concern seemed to be sure there was a fusion to the ribs. He said he has never gone back to revise on any other of his patients. But they would be younger.
I will see what the neurosurgeon says tomorrow. I see him because of the 6 week nerve decompression for the ulnar nerve at the elbow. But he is the one that felt we need to redress this issue. And the nerve in my hand is still a big problem. The two of them feel it is being stretched or trapped by the displaced shoulder due to the failed scapula.
I think I will ask him just how many times he has seen this from scoliosis.
Yes I think of how one thing just leads to another. Seems like it just doesn't stop.

[jackieg412]

After a long discussion with my spine neurosurgeon, he feels strongly that I should move forward with the scapulothorasic fusion. Even with my age, he said that I am too high functioning to let this problem remain.
Also he said that the most likely thing that caused this is the thoracic fusion and compromising the long thoracic nerve. So just one more problem of having scoliosis surgery.
Ed I did ask him about a scoliosis brace and he said it would not work plus it would rub . He also said that most people don't understand how small my bone
structure is and that only allowed the screws to be covered by a small layer of skin and rubbing across them isn't a good idea.
Something very interesting, he told me he actually used cervical screws through my thoracic to keep them as low profile as possible. I did no not know this , but it brings up just how important custom designed surgery is for the patient
I am scheduled for this fusion Nov. 9. Just one more hurdle.

[titaniumed]

I see....you have the green light now....at least you have more questions answered.

If you have any CT's, you will see just how deep your hardware is. My hardware is buried pretty deep, but some spines are shallow....I am not sure if this is a male/female thing....? Are male spines deeper? Are female spines shallower?

I wonder if you can get the scapula brace before surgery for acclimation. (since it holds your arm up) I had a full brace many years ago, and it was great because I knew what full fusion was going to feel like. It wasn't that much of a surprise.... Another question is after surgery, can you remove that brace for short periods of time? Probably not, but I would clarify on this subject.

Your going to be a left side sleeper for some time. I did that for a full year. Left side only. A few months after my shoulder surgery, sleeping on the right side felt so good.

I have not been high functioning, it's been more like no functioning due to the fire smoke. The Dixie fire keeps growing. It's horrible. Tomorrow it's going to be purple outside.

Ed

[jackieg412]

The brace needs to be custom made. I will have to call for an appointment next week. We chose a location near my home. I saw pictures and it is awful looking. It cannot strap over my neck area.I
I actually think the only sleeping will be in a recliner. I don't think it will allow much of a different position.
My neurosurgeon is just so easy to talk with. I know a lot of surgeons aren't like that. We talked for at least 20minutes. We did discuss the nerve decompression and that is healing . He said it was very trapped and inflamed. He feels it will continue to improve.
Also he wants me to wait for my 1 year check up from the spine surgery until I can come back after fixing the shoulder. Then he will have the one year xray with the shoulder in position.
I still have a lot of details to work through.
I don't think I will be able to move the arm out to the brace for that first 6 weeks. I am mostly left handed now. I am not sure I will be able to do this alone.

[titaniumed]

Jackie, Your going to need some help....

There is a You Tube testimonial on scapular fusion recovery and this girl about age 25 states that she had to sleep in a recliner and that laying down in bed is painful in the surgical zone.....I know what that is like, if you roll over, the bandages press on the incision and that hurts.

You won't be able to change your dressing or really inspect your incision. It would be nice if the nurses came out to your place like they did with me, they do the inspections....That worked out great and actually saved a LOT of rehab money. I would ask and see if the doctor will order this. I would keep a really close eye on your incisions since you have a history of infection. At least once a day. I used mirrors.

Changing the sheets on the bed is especially difficult one handed.

I hired a CNA on my scoli surgeries...she hung out about 2-3 hours per day in the morning for 6 weeks until I was off meds and could drive. It cost about $2500 back in 2008. I didn't really need her for any bathroom, shower or dressing needs. She was a huge help on getting me things that I needed as I progressed.

The main thing is the pain. But your pretty tough....Some of your revision procedures have been extremely technical, and doing it on Tylenol, which is incredible.

Of course, you should review pain control with your surgeon and the ketamine question....(again) pros and cons.

I know you know all this stuff, but just repeating myself. It's good to talk about these things.

Ed

[jackieg412]

Ed you are correct, needing someone to talk to is so very important. I am thankful for you and my neurosurgeon taking the time he did to encourage me. His thoughts were so valuable. And he really knows how many things have happened and my spine make-up.
I don't even think he could believe we could accomplish what we did on Tylenol. But we did. I think for the shoulder surgery they can do a certain type of block and I think it is called a scalien block. And I am sure I spelled that worng.
I will ask my pain doctor to coordinate with the anesthesiologist at this hospital.
Even deciding which surgeon, I chose the person with most experience. This doctor was at Rush, moved to New York and now is even closer to were I live.
He actually told me that he thinks he has done more of these procedures than anyone else. I chose the doctor with more experience, since it is going to be a challenge with my age, body size, fused spine, and pain management.
Thank you again Ed.

[titaniumed]

Oh, thanks Jackie...

The smoke from the big fires out here is unbelievable.

Been sleeping like a cat.....

Ed