Infected hardware

[titaniumed]

I wonder whether a pain....like thoracic pain is related to my shoulder or spine problems.

Thats a tough one. You also have (SCI) spinal cord injury which can create (CNP) Central Neuropathic Pain.

At some point, you "could" pursue a (BCI) brain computer interface to try to reduce your pain....
https://jneuroengrehab.biomedcentral...984-019-0588-7

But with the current COVID-19 situation, you have to assume that any person can be a carrier which pretty much puts things at a standstill right now. (smug face)

I never had any doubts on your shoulder. Shoulders wear out, and there are twice as many of them. When I did my shoulder surgery, they had me in PT right away. Moving the shoulder was important as they didnt want it freezing up. Walking the wall was one of the stretches I remember. You take your fingers and walk them up a wall for the stretch. It gets tight when you go high....

Spine is complicated. So are viruses.

I am also self isolating. And no visitors. I wont let anyone in my home. Outside trips are now critical decisions....

Remember "The Andromeda Strain?" 1971. Michael Crichton That was a good one....
https://en.wikipedia.org/wiki/The_Andromeda_Strain

https://www.youtube.com/watch?v=ut9ejKRuni0

25 years ago, I was flat broke when I bought my first microscope....It was about $9000, and that company carried me interest free. I had to have it since I was going to go crazy without it, plain and simple. Of course my optics expenditures increased from that point on. (smiley face)

I hope your ambulatory struggles are not overly taxing in your mind....As you know, it takes a very special person to overcome these sorts of things. You do have that special ability....just wanted to remind you. Scoliosis patients have this ability...

Ed

[jackieg412]

Yes it is troubling times. You see both the best and worst of humanity.
I am glad you are co my well Susan. It is really hard now. Hopefully you continue to do well.
Staying home is the best way.
This pain thing is hard. I upset the muscles in the thoracic, I was on steroids for awhile and it helped some,but it is really hard to change position. And everything is on hold so nothing can be done.
I actually had an appointment but it is postponed until May.
The sign of the times.

[KathyInIowa]

[QUOTE=susancook;172568]

I haven't heard from Susan yet. I do email her on her personal email. I just keep praying she is OK. And going through that major surgery and now this epidemic. Let's hope she is home and safe.
Yes Ed do what you are doing to be careful in the area of your mouth that is under attack. Sometimes we think we are bullet proof after the major scoliosis surgery. We need to all take time in our healthcare.

Jackie, Ed, and my fellow forum members,

I had my "reverse R shoulder replacement" done 3/11 right under the wire for elective surgeries. My typing usually sucks, but with one crippled wing it is suffering even more. Recovery is a challenge for the able bodied, for me with a T1 to sacrum fusion, 73 years old body, and T4,5 partial paraplegia doing ADLs is almost impossible. I weighed my options post-op for OT/PT and decided to got to a SNF w/ intensive rehab for a week from the hospital. Not much choice in facilities, so the one that I ended up going to was short on adequate pain support and noisy decreasing my sleep/rest. After 2 days, I checked out AMA and went home where my husband can help me. I do have home PT/OT coming and I will survive.... hopefully not get divorced after 48 years of marriage ;+} .

I am still looking at having my T1 pedicle screw [lucency and thoracic pain] and 1 of my 5 rods removed by Dr. Hart in Seattle maybe this summer. I looked into having a SCS implanted but am not sure about having that done. I have substantial Right L4,5 dermatone burning pain for which I wear Lidocaine patches.

So, 6 weeks in a right arm sling. It is what it is.

Susan

Hi, Susan. I do catch up on the forum from time to time - it's always good to see when you post. I'm glad you are getting along "OK" - praying that things get better for you. You are one of the toughest people around - I believe you will come out OK. 5 or 6 years ago when I joined this forum it was your story that I followed - and it was you that got me through all my stress, worry and my (then) upcoming surgery. I think because you were also "adult onset" so our stories were similar. I admired your strength and sense of humor. I still do.

Hang in there. We are all rooting for you!

Kathy

[susancook]

"We are not owed our dreams"

To Jackie, Kathy, and Ed: Thanks for your supportive comments. I have minimal pain from the shoulder replacement, but other aches/pains continue. Such is my life. I saw the quote above in Time Magazine "We are not owed our dreams" and it resonated with me. The author was Allyson Felix, a 6 time Olympic medalist who was coming to terms with the cancellation of the 2020 Olympics. I sometimes self bury in the frustration of wishing that I was not using crutches/wheelchair and wishing that I did not have chronic pain. Then I think that my dream of being an active senior citizen with adequate financial support from being frugal and having 2 jobs isn't owed to me. Regroup and get on with life.

Re Covid 19 paranoia: as an immunocompromised senior citizen, staying at home is my best chance at survival.
Susan

Thanks Ed for your reminder to do my shoulder exercises!!!

[titaniumed]

Plasma therapy for COVID-19

Waiting (for herd immunity, or a vaccine) has been especially difficult these days, but there is a glimmer of hope in blood plasma.

https://www.sciencenews.org/article/...nts-treat-sick

https://www.usatoday.com/story/news/...rs/5090946002/

Most of us who have done scoliosis surgery usually need a few units of blood. I was a few days out and feeling like krap, then they gave me 2 units (off the blood bank) and it was a breath of fresh air.....

Lets keep our fingers crossed.

Ed

[jackieg412]

Hi to all. Stay safe. This is so important to do what we can even if that means just staying home. Glad you are coming a!ing Susan.
I wish it had been possible to have moved along with my shoulder blade problem. It has turned painful because of rubbing on bones
The so I d is good. Had to have been the hardware. They called it an internal pressure wound.
I keep thinking that break your neck car accident didn't help matters.
Keep safe

[susancook]

Hi to all. Stay safe. This is so important to do what we can even if that means just staying home. Glad you are coming a!ing Susan.
I wish it had been possible to have moved along with my shoulder blade problem. It has turned painful because of rubbing on bones
The so I d is good. Had to have been the hardware. They called it an internal pressure wound.
I keep thinking that break your neck car accident didn't help matters.
Keep safe

So glad that I got in under the wire for elective procedure on my shoulder. Originally I was going to be up in Seattle having my T1 screw and one rod removed, but now I am certain that there is a God because I chose to be in PDX vs Seattle.

Hoping that you are able to relax and find some less painful positions.

Virtual Hugs
Susan

[titaniumed]

Float Tank Therapy

Hoping that you are able to relax and find some less painful positions.

Relaxing and trying to find less painful positions is the story of our lives. What can I say? Its been a long road living with scoliosis.

Over the years here, I have mentioned using hot soaks for pain,floating, and turning the mind off. Mental de-stressing.

I just discovered this video on a therapy called "Float Tank Therapy" The girl in the first video is a Pharmacist and she documents her experience (here in Reno!)
https://www.youtube.com/watch?v=34Zh3mIVTzI

https://www.youtube.com/watch?v=aCjmRCywkZg

I have not tried this therapy but it looks interesting. As a diver, both before and after fusion, I noticed that after fusion, you do not get the same un-weighting relief in the fused area. But it does help with other joints and soft tissues. The release of our minds from the usual daily things we do is a huge benefit. My old hot soak days along with long massages were heaven....

I hope both of you can get out of pain if not physically, do it mentally. Even though we are all basically shut down due to the current COVID-19 situation, this down time is a good time to lay low and make attempts at un-winding and de-stressing. Hopefully, the pain is not too bad...

After Float Tank therapy in that much salt, I would guess you dont have to wash your hands to kill viruses. (smiley face)

Ed

[jackieg412]

I agree with the hot tub body soak. Now the wound is healed I have returned to that. I also use heating pads when relaxing.
The pain during the day I can deal with but at night it is much harder. It is I am sure bone on bone. If I move I am awake. Getting out of bed is a major scream event. However once I am standing I gradually gets better.
Just another day

[titaniumed]

I am sure bone on bone. If I move I am awake.

Your scapula? Was there any talk about a shoulder brace of some sort to hold it up? Do you think that might help?

I know what you are saying about night time pain. Why this happens is beyond me. I would end up exhausted by midnight, then the pain would amplify which means no or little sleep. Sleeping becomes so valuable, when you can get it.

My gall attacks offered no sleep time at all, the pain just stayed on and wouldnt drop for 6 hours. This was different than orthopedic related nerve and bone pain. A different flavor of pain for sure. Not as intense as nerve or bone pain.

One thing I have done for years is to sleep sideways on a bed. If they hammock, its usually headboard to footboard but never sideways. It makes it harder to get out of bed, unless you remove the footboard. We are like rolling pins in bed, roll a piece of dough, its hard to steer that roller into a curve. Without the footboard, you can log roll off the end of the bed. When you sleep sideways, the memory foam is not conformed, so its like sleeping on a brand new foam topper.

Hot water soaks or therapy was really the only way I could manage extreme nerve pain. With the mouth, intense dental pain, a hot water salt rinse works well. Need more pain relief? Increase the temp and do it again. The hot water on the nerves really dulls the pain.

For sleep, I tried 1ML (under the tongue) of liquid CBD with THC, and had to sleep for 2 days. Boy, was I tired. Not stoned, just extremely tired. I never did that again, a friend bought it for me, but I wondered what was going on that made me SO sleepy. You would have to ask your doctors about CBD for sleeping. It works great for sleeping, for sure. Weed based CBD is legal in Illinois. Also in Oregon. If you want to get stoned, increase THC with weed, or edibles.

Surgical recovery includes some pain and it's so hard to sleep in pain.

It looks we might be hittiing the peak of the COVID-19 curve...we will see. I ventured out without a mask today. I am having trouble finding any masks here in the US. The only mask I have is my Chewbacca mask (with audio sounds upon opening jaw) someplace, but that offers only limited protection....(smiley face) When the Chewbacca mom video went viral years ago, I called "Toys are Us" and they had only 1 left, so I ran over and bought one. She sold out all the Amazon stock which is hard to believe.

Ed

[jackieg412]

You are so right, it is impossible to sleep in pain. When I do call asleep I wake up as soon as I attempt to move. Once I have to get out of bed that's it. I'm not going the that struggle again. I have been sleeping at times in a chair. You can get some rest that way.
I hope shoulder Dr can brace it or tape it so the pain let's up. I do sleep on my side. Usually the left because then I can just wiggle out be. My memory foam is like a trap sometimes. Hard to fight my way
out.
It must look histerica!. If it didn't hurt so much, if let it be videoed. Now it wou!d contain a lot of sweat words.
I can make a mask and mail it to you. It would be cloth. Just let me know.
Yours would be funnier

[titaniumed]

Yours would be funnier

Your right. Probably better to go with the comical mask. Wait a minute, put a corona mask over the Chewbacca mask! ha ha Thanks for the offer.

Both you and Susan have multiple things going on, I would imagine it being hard to decipher exactly what and where your pain is coming from.

I would have replied sooner, and had a post written about how things were actually improving or doing pretty good on my sleep status, but had to rescind since I have had a few tough days. Most likely diet related....And had some pretty strong "yelp producing" pelvis stabs that woke me up out of bed. This is a rare thing for me, its been years. I have no idea why that happened? Being an occasional yelper, if anyone hears some of us being vocal, they might suspect Tourettes.... but we all know self diagnosis is fruitless. (talking about cursing from pain)

Did a little bit of reading on scoliosis history yesterday, and learned that the Smith-Petersen Osteotomy was first performed in 1945 by Dr Marius Nygard Smith-Petersen in an effort on a Anklosing Spondlitis (AS) patient with severe kyphosis in Boston. He was Norwegian surgeon who pioneered hip nails.
https://en.wikipedia.org/wiki/Marius...Smith-Petersen

It has taken a lot of time, effort and pain from our surgeons and prior patients to get to where we are today. Nothing happens fast, including this coronavirus wave. I have a feeling we are going to have some changes, or permenent changes here in the future. I think we are used to change or at least medically induced changes as scoliosis patients. The world is learning a hard lesson on viruses. Wouldnt want to be an anti-vaxer that changes his mind during this wake up call.

Happy Easter

Ed

[Tina_R]

I really would have thought I would be past the time that infection would happen but it doesn't appear to be that way.
MAybe last year's car accident had something to do with this.
Any one else know what could cause this infection after this time ?

I don't know but allow me to guess.

A hardware infection many years after surgery can't be from something introduced during the surgery. A hand surgeon I dealt with says those manifest pretty quickly. Infections that develop in the spinal hardware after many years must be introduced some other way. For you maybe it was from your accident.

Maybe people are getting infections from having dental work done. For the first 6 months after my surgery I was told by my spine surgeon that I must take a dose of antibiotic before having my teeth cleaned. A lot of bacteria is released from the mouth into the bloodstream.

What if there is still a danger of this happening after 6 months? Maybe spinal fusion patients should be taking an antibiotic before dental work for the rest of our lives.

[titaniumed]

Infections associated with spinal implants

Methods quoted for prevention are antibiotic prophylaxis, surgical technique to avoid necrotic tissue, avoiding ‘at risk patients’, reduction of haematomas, optimising surgical conditions and treating co-existing infections.

Anoxic tissue (Without Oxygen) is a fertile breeding ground for infection.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282854/

Tina, I believe I was ordered to take antibiotics for 12 months when visiting the dentist. Continuing antibiotics could present antibiotic resistant bacteria problems down the road...I had a few dental flair ups and was jumpy about taking repeated rounds of Amoxicillan, bought 2 new water pics and now flush out with listerine and have been ok. Periodontal infections can be a drag. They can manifest themselves down low at the base of the roots beyond the flossing and brushing zones. I had a tooth pulled and suffered with repeated bone spurs for 10 months. Painful? Oh Yeah....Sigh They dont warn you about these things at the dentist.

Ed

[Tina_R]

Methods quoted for prevention are antibiotic prophylaxis, surgical technique to avoid necrotic tissue, avoiding ‘at risk patients’, reduction of haematomas, optimising surgical conditions and treating co-existing infections.

Anoxic tissue (Without Oxygen) is a fertile breeding ground for infection.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282854/

Tina, I believe I was ordered to take antibiotics for 12 months when visiting the dentist. Continuing antibiotics could present antibiotic resistant bacteria problems down the road...I had a few dental flair ups and was jumpy about taking repeated rounds of Amoxicillan, bought 2 new water pics and now flush out with listerine and have been ok. Periodontal infections can be a drag. They can manifest themselves down low at the base of the roots beyond the flossing and brushing zones. I had a tooth pulled and suffered with repeated bone spurs for 10 months. Painful? Oh Yeah....Sigh They dont warn you about these things at the dentist.

Ed

I didn't think a single pill taken every six months would contribute greatly to antibiotic resistance when there are conditions where people go on heavy prolonged rounds of antibiotics. But I don't remember what the antibiotic was and don't know if the dose of that pill is light or heavy.

Maybe I'm wrong, the surgeon sure is stingy about that antibiotic. He only prescribes me the one pill to be taken an hour before my appointment. No backup so I have to be very careful with that pill, not to drop it between the seats of my car with my slightly tremulous clumsy hands. And what if I get there and the dentist doesn't take me on time and the thing wears off?

They don't warn you about things at the dentist? They don't warn you about orthopedic surgery either. My dentist is great about communication and everything else, too, she's right up on the latest. She thinks bruxism (unconscious teeth grinding) is related to scoliosis, by the way.