Left side T1 lucency

[jackieg412]

Yes I can only imagine how tired you must be. Are you still have my crutches for support? I can guess that would be rough with thoracic pain. I sometimes have to use my left arm to get up the steps and it creates a world of discomfort.
Hand pain is difficult. My right hand bothers me a lot. Sometimes even on small moves.The nerve on the little finger side is the problem. If it isn't painful or numb, it twitches strong enough to watch it move the muscle. Very entertaining. It has it's own little dance.

[titaniumed]

I was diagnosed with P.Acnes bacterial infection in 2015 and take Keflex 500 bid.

Yeah....Recurrent lucency or recurrent infection? I have been through quite a few biofilm studies and articles, and it seems that these low grade infections can flair up as the cells break off or shed off our hardware for some reason (and many years later, up to 24 years)....I suppose I can link if you wish. P-Acnes can be a tough one....I have wondered in my case if I am running a low grade infection at times trying to figure out the fatigue. There is no way of knowing. Increased pain after a period of no pain is very suspicious and it seems that blood work doesn't tell all.

I did take Keflex in my immediate recovery period...for about 2-3 weeks.

Pain can be so exhausting and it makes it so hard to sleep. Exhausted and can't sleep. Sounds crazy but it's true. CBD is good for sleeping but the FDA has issued liver warnings. I took 1ML under my tongue and had to sleep for about 2 days.( I did not take this during a major pain event).

Jackie's case with her T5 infection revision looks promising....Ask Dr H about any new anti-microbial pastes or cements after they pull the screw. They have new products these days...

Both of you guys have high thoracic, low cervical problems hence the high level hand pain....most would never even think scoliosis could result in 10 level hand pains.

My worst or most intense pain was passing a 9mm kidney stone and ureter jam. That was a 13 on a 10 scale. I thought that was it. When you can't pee, you know your there. Had a laser lithotripsy for that one. Learned a lot about drinking water and "dilution" on that one.

Jackie mentioned the words "World of Discomfort" That would make an excellent title for a scoliosis book....

I too am ratcheting down the ladder these days...I am barely walking this morning, and up at 3AM.

Hang in there, thanks for posting, let us know how it goes..

Ed

[jackieg412]

It is good in the thoracic right now. No more unexpected sores. Also, this latest surgery is done under newer techniques as you pointed out Ed. I have more rods but less screws. So far it seems all is stable. The neurosurgeon said what he did wasn't even available until 5 years ago.
Ed, I do think the hand pain is from the broken neck. The osteotomy did seem to aggravate the situation.
We do another EMG next week. There is a nerve so upset it moves the muscle of my hand continually. Like a twitching s
she only all day. Not very comfortable.

[titaniumed]

It is good in the thoracic right now.

That's good news....infections can be hard to deal with, (especially on hardware) but they are making headway. Pain is your first indicator.

The other thread I posted with the ASC surgeon interviews is a good one. They have made great progress with tethering over the last 10 years.....wow! In the Dr Lonner interview, he states no tether breaks on double tethers now. They actually get rotational correction and can improve the sagittal plane...There is a LOT of info on all those interviews. Its a great way to get to know your surgeon before you make that call. (For new patients)

Ask what they think is going on with that nerve, and are there any possible things they can do.....(in the neck) Would some sort of injection help? I have pitched some ideas on your thread. I never know what thread I am posting on (smiley face)

That 10 level pain that Susan has in her hand got my attention....she also has really done some tough rounds with scoliosis. My hand situation was middle, index, and thumb numbness from a C5-6, C6-7 disc herniation....The pain was in my upper arm. The Mike Tyson punch...I think they studied his punch years ago as being the strongest ever. My left arm was useless until the discs retracted. I have lost use of both my left and right arms due to ski crashes and cervical disc herniations at times over the years....Crazy stuff.

Scoliosis involves all sorts of change over the years. Ups and downs....See-saw recovery, see-saw life....You sleep wrong, or step off a curb wrong and there is pain to deal with. My walking is getting a little rough these days and its getting harder to hide it. I am a real bulldozer some days. Bulldozer on big rocks.

Ed

[jackieg412]

I am going to ask about an injection but I think the fusion makes that harder. So far we changed for gabapentin to lyrica, but no change. I just completed the second round of PT, and no change. On it's own it moves the muscle that is controlled by the ulnar nerve. Also the mid palm. It's crazy to watch.
I've had pain in my spine, let and neck that can be difficult but usually I can find something to help but I can't find anything for the hand.

[titaniumed]

Ed, I do think the hand pain is from the broken neck. The osteotomy did seem to aggravate the situation.

Yes, broken neck or a dorsal root compression, inflammation, or low grade infection at the C8 or T1 osteotomy sites. Have they done a MRI or CT of your neck lately? You would think they would want to take another look at things now at 6 months...

Hitting walls abruptly in car accidents are going to be really hard on the neck.... Most likely the lowest levels of the neck especially with a seat belt restraining the body... The head just slams forward. Oh man. Could this abrupt force have compressed your C8-T1 vertebral bodies requiring the osteotomies? Did the surgeons comment on this?

Your history is all about trauma. If you didn't have that very first accident about 10 years ago, we might not have heard from you. How old were you when you were diagnosed? and were you having any scoliosis pain before your spine surgeries? I don't recall you talking about your pre-fused days. Our whole history is pretty important....

Also, there are plenty of idiopathics, but the de novo (adult onset) cases are a different story.....same problems for different reasons. Degenerative reasons after age 40.

Ed

[jackieg412]

Susan, just wondering how you are doing?

[susancook]

Now on the other side of the revision. Postop pain ×5 days, constipation and nausea x 4 days [in spite of an arsenal of laxatives, fiber, etc], Awaiting T1 culture results. Unsure if surgery helped thoracic pain.

Thanks everyone for your support, You guys rock!

Susan

[jackieg412]

Good to hear from you. Hopefully everything improves. It could take a little longer to know if it will help but you Are on the otherside. With all of your challenges I am sure this is a little harder.
Let us know how you are coming along.

[susancook]

I had surgery to remove the T1 pedicle screw and a short rod. Spent one night in the hospital and 4 days on narcotics. I used to have a creepy lump in my T1 area where the rod ended. Now....it is gone.

I have cervical pain from arthritis and have PT scheduled. I receive botox in the thoracic area that keeps the muscles less tight. I also use Diclofenac 1% and CBD gel on neck and thoracic.

My goal is to remain in the "mainstream of life". I use my wheelchair at home and a scooter for distances outside. I use forearm crutches for short distances outside.

Susan

[jackieg412]

Good to hear from you Susan. Just keep going. And we all know there are good and also difficult days.
It sounds like this has helped you.

[titaniumed]

Susan, Glad to hear you are feeling better....

Ed

[titaniumed]

Susan, I just did 2 Grams or 2.25 inches on the back of my neck. I have the tube from the South America trip 18 months ago. (Made in the US) My first application of topical Diclofenac.

Funny, the instructions say to not wash your hands for 1 hour. I wonder if they account for the absorption through the hand? I wiped it off with a paper towel.

The neck has been stubborn lately....woke up with decent pain after a nap today....these disc herniations do linger.

What would we do without our nurses? (smiley face)

Ed

[jackieg412]

How is the neck doing today Ed. Those naps can help or cause a problem.
Are you continuing to improve Susan?

[titaniumed]

Jackie, As much as I want to say one application will remove the inflammation, it just doesn't work that way with NSAID's....you have to continue taking them. I have a feeling this is going to take a few weeks.

Can you take a prescription anti-inflammatory now? I know you have special medication needs having arachnoditis. This might help with the ulnar elbow/hand situation. Have you had any discussions with your surgeon about NSAID's? How is the elbow/hand pain?

You are about 8 months post osteotomy now. Have they said anything about fusion in the osteotomy sites? The T1 PSO was an involved procedure, and bone on bone.

Ed