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jackieg412
12-26-2019, 02:34 PM
I really would have thought I would be past the time that infection would happen but it doesn't appear to be that way. The wound has been treated since September and started out not looking like too much. Little did I know that the red area that just opened and leaked was an underlying infection. What I thought was minor isn't turning out that way.
The thoracic hardware has been in place since February of 2011. Thought I was good to go but there seems to be another plan.I am on antibiotics now and hardware scheduled for removal on Jan.21.
MAybe last year's car accident had something to do with this.
Any one else know what could cause this infection after this time ?

LindaRacine
12-26-2019, 03:30 PM
I really would have thought I would be past the time that infection would happen but it doesn't appear to be that way. The wound has been treated since September and started out not looking like too much. Little did I know that the red area that just opened and leaked was an underlying infection. What I thought was minor isn't turning out that way.
The thoracic hardware has been in place since February of 2011. Thought I was good to go but there seems to be another plan.I am on antibiotics now and hardware scheduled for removal on Jan.21.
MAybe last year's car accident had something to do with this.
Any one else know what could cause this infection after this time ?

Sorry to hear about this. Hope they manage to get it all under control quickly.

Unfortunately, late onset infection isn't all that uncommon. The infection can sort of lie dormant, under the implants, and show up even years later. I don't know about other surgeons, but Dr. Berven typically collects a tissue sample for biopsy when he does most revision surgeries. Non-symptomatic infections aren't unheard of.

--Linda

titaniumed
12-26-2019, 04:04 PM
Yes, this article explains that trauma exceeds 10%

Bacteria forms as biofilms on our hardware. These biofilms will go through changes over time....Its something I always wondered about because on some revision surgeries, the hardware does not retain its metallic shine, the rods turn a dull charcoal color.....

(I do not know how other biomaterials react, for example PEEK or UHMW or PET tethers....)

https://journals.lww.com/spinejournal/Fulltext/2018/04011/What_Are_Biofilms_.7.aspx

Jackie, You must feel terrible, go to the hospital if need be.

You have been through so much. I am so sorry

Ed

Tina_R
12-26-2019, 10:10 PM
I just saw my elbow surgeon for a followup and he remarked that all surgical infections make their way out to the surface. I bet an elbow surgeon doesn't experience many long-dormant infections such as can happen with fusion hardware, though.

I'm glad it won't be too much longer before you have your hardware removed, Jackieg412, and I wish you the best. If anything new develops, get it looked at or phone your doctor's office.

jackieg412
12-29-2019, 07:40 AM
Thanks Tina and Ed and Linda. It has been a rough time since the car accident. The sheer trauma could have done anything. It may have looked okay on X-Ray but you never know. Also the misstep and twist could have injured something. Under the wound is a nerve that activates when the dressing is changed. So medication and antibiotics are being used . The neurosurgeon at Rush ( the one who did both of my broken neck surgeries and saved my ability to funcgion) is aware of the staph infection and is planning on the hardware removal any way. He said the infection won't cure until the source is removed.
In addition I have reacted to the dressing. Has anyone else reacted to tegaderm?. I will have to inform the surgeon as it is a common dressing.

LindaRacine
12-29-2019, 01:01 PM
Thanks Tina and Ed and Linda. It has been a rough time since the car accident. The sheer trauma could have done anything. It may have looked okay on X-Ray but you never know. Also the misstep and twist could have injured something. Under the wound is a nerve that activates when the dressing is changed. So medication and antibiotics are being used . The neurosurgeon at Rush ( the one who did both of my broken neck surgeries and saved my ability to funcgion) is aware of the staph infection and is planning on the hardware removal any way. He said the infection won't cure until the source is removed.
In addition I have reacted to the dressing. Has anyone else reacted to tegaderm?. I will have to inform the surgeon as it is a common dressing.

Hi Jackie...

I react to almost anything adhesive that stays on my skin for more than about 12 hours. Strangely Tegaderm is one of the adhesives that causes less reaction in my case.

I'm surprised to hear your cervical surgeon say that he can't cure the infection without implant removal. While that's true for some patients, it's definitely not everyone. It may be that he just said it to assure you about the implant removal, which could be necessary regardless of the infection.

https://www.ncbi.nlm.nih.gov/pubmed/28913559

--Linda

Tina_R
12-29-2019, 09:58 PM
It's sobering to see those loose screws and rods in your x-ray after your accident. As I was chauffeured home from the hospital after surgery I couldn't help but think how terrible it might be to get into a car accident in such a fragile state and with embedded hardware.

Whatever adhesive they used around my IV sites irritated me. It might have been Tegaderm if that is the latest thing. Even after the redness was gone it left zit-like sores on my neck that took weeks to go away.

jackieg412
12-30-2019, 06:36 AM
Yes that early stage requires more concern. The accident t was very violent. My car was forced into a Rick house.It is amazing to have lived through it. It is also amazing the neurosurgeon was able to make this as good as it is. I am still compromised in my right hand.
I will have to address this tegaderm issue with the staff that will care for me after the hardware removal.. If will not be good to have that rash all over the new incision.

jackieg412
03-07-2020, 07:17 AM
The removal surgery was the answer to the non healing wound. In 2 weeks it healed after the hardware was out. I was released yesterday from the neurosurgeon. They described it as an internal pressure wound.
Now we can see if I can move forward with the shoulder surgery.I believe Susan had her shoulder surgery yesterday.
My arachnoiditis has flared. The internal pump may also be having a problem. What next!

titaniumed
03-07-2020, 10:53 PM
The removal surgery was the answer to the non healing wound. In 2 weeks it healed after the hardware was out. I was released yesterday from the neurosurgeon. They described it as an internal pressure wound.


This is good news Jackie.....

Just a hunch but I would imagine that they will want some time to go by before you go in again on another surgery. Let things settle down some.

I would talk to your doctors about the Staph, if that's what it was, and how to address this in the future. An antibiotic discussion. You can feel these things, infection is never something to wait on. Should you keep certain antibiotics at home on standby?

I do have my mouth under control now. Been going mental on the dental if you know what I mean....3X per day with listerine flossing and cleaning attacks. Trying to keep my mouth and my hands extra clean these days.....I keep Amoxicillan here at the house these days.

You know on the coronavirus, over the age of 60 they don't want us partying like rock stars. In other words, safer to stay at home, and avoiding social functions. I think if I wanted to get sick, I would go to an elementary school, or take a cruise. My hospital does not want anyone under age 18 coming down to the hospital, unless they are sick. There is a reason for this.

I hope Susan is ok. I worry about her ambulatory or mobility challenges...Of course they will probably get her a Hoyer lift to deal with this for now. These items can be rented.

How is the pain from the rod removal? I would imagine that the arachnoditis overrides this pain....or is it sporadic?

Ed

RitaR
03-09-2020, 08:32 PM
How did they determine hardware was infected?

jackieg412
03-11-2020, 07:03 AM
I was in a major car accident. After that a wound developed on my back, not right on the incision but next to it. The wound would not heal even with wound care taking over the treatment. After the hardware removal, the wound healed in 2 weeks.

jackieg412
03-11-2020, 12:03 PM
You are right Ed, with that virus on the attack we all need extra precautions. I have young grandchildren and I always talk to the parents before I go there. It happened about 2 weeks ago , I put one of them on the school bus, next day she texted positive for influenza A. I didn't get it but stayed away from compromised people for the 7 days. Just in case I didn't want to spread it.
The hardware removal was easy,but recently I picked up something heavy and now the muscles in the thoracic are really sore. I mean keep you awake sore. I was at pain management yesterday and I have a steroid pack. They didn't want to do any trigger point injection because of the recent su surgery and wound.
It makes sense to me. But pain isn't fun.
The arachnoiditis has flared some. Maybe because of the spine surgery. I never know for sure. It just happens.
You are right to be super diligent about keeping the teeth clean. And it takes more than brushing. But there isn't a substitute that works as well as your own teeth. Also the mouth is full of bacteria that has been proven to affect the heart.
I haven't heard from Susan . I hope she came through this ok. It seems sometimes there is just one more mountain to climb.

titaniumed
03-11-2020, 09:48 PM
You are right Ed, with that virus on the attack we all need extra precautions.

Jackie, I was talking about bacterial infection resulting in implant infection, not coronavirus.....Staph mostly, attaching to our hardware.... Staph is everywhere.

For coronavirus, I have read that chances are that most of us will get exposed sometime over the next 2 years...I dont think there is anything they can do for virus....Several companies are working on things, with testing on humans (In China) starting in April. Inovio Pharm is one of the companies.

Rita, here is a checklist for implant infection.
https://www.asra.com/page/217/checklist-for-detecting-and-managing-implant-infections

Ed

jackieg412
03-12-2020, 06:31 PM
I know that staph lives on us. The common skin staph is what my culture showed. I have had several types of antibiotics . I'm not on anything now.
The wound has healed very quickly once the hardware was out. They called it an internal pressure wound. The nurse for the neurosurgeon said it was the first time he has seen one. I do admit it was weird. It is also a very unusual shape. It is like a n extended year drop that is side ways. I am thankful that I had it accessed right away. It took time to develope. It is craziness.
Hope you are doing okay.
Any word on Susan?

titaniumed
03-13-2020, 12:15 AM
Ok, I see...Even though the doctor in the link I posted mentions that implant infection happen in 2-14%, its still material we need to be aware of. If someone has implants, this is need to know information. Getting older means being aware of these sorts of things....Linda mentioned it and this doctor mentions that infection can happen many years later....

When you get done with surgery, WBC (White blood cell) count goes into attack mode, and you can feel this. Its so exhausting! I think that half of my weight loss in my recovery had to do with this, along with barely eating. Malnutrition is critical, without the nutrition, our bodies really struggle. Eating properly is important.

Its good that this has all cleared up....I still get jumpy with my 2nd molar infection frequency, I have had to take Amoxcicillan 3 times in the last year. It seems to be proof that either the infection at the roots of the tooth are still there, (Periodontitis) or I am having problems fighting this. I dont know if a doctor can really say your done with your infection if the last small percentage of it is still harboring some place. I dont know if blood work will be able to determine this. I hope you understand what I am saying here. I dont think that there is any solid proof in that many of us have small amounts of infection, and have that ability to keep these bacteria cultures or biofilm under control. It might explain me having problems with fatigue....

Another thing that bothers me is that headaches and pains are a warning that something is wrong. With a thousand reasons why? Can we really be running to the doctor everytime we have a headache? Its not easy wondering why these things happen, but we have to know what to ignore and what to follow up on. We have to know and feel our bodies after our surgeries, and also account for any other things that we have going on. For example your arachnoditis and my cervical stenosis. Diet, atmospheric pressure, and collapsing stock markets can really complicate matters. The coronavirus has me laying low lately and social activites have been on hold these days.

I have not talked to Susan. I thought you guys were in touch. Let us know when she responds. I wonder how her pain is, it seems that when we do serious scoliosis surgery, or surgeries, we get pretty good at handling pain. I would say she is a pro at it.

We as humans have this warning system called pain, and we have limited knowledge on what causes pain. If we were cars, we would all be blowing smoke and running rough...and the mileage...my odometer is broken. Oh well.....My gas gage still works.

Ed

LindaRacine
03-13-2020, 07:26 PM
When you get done with surgery, WBC (White blood cell) count goes into attack mode, and you can feel this. Ed

I don't recall ever hearing this. Do you have a reference?

titaniumed
03-14-2020, 11:57 AM
https://en.wikipedia.org/wiki/Leukocytosis
WBC count can be elevated by emotional stress let alone any surgical procedure. Other causes are listed below.

https://en.wikipedia.org/wiki/Neutrophilia

I only found a single fusion study.....nothing on scoliosis surgery or long fusions. See Table 2 ( I have not looked that hard)

Serum C-reactive protein (CRP) concentrations and white blood cell (WBC) count are commonly used to identify postoperative wound infections.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5642098/

There are some pretty good You Tube videos on CRP and WBC. The material is complex.

Ed

LindaRacine
03-14-2020, 12:40 PM
https://en.wikipedia.org/wiki/Leukocytosis
WBC count can be elevated by emotional stress let alone any surgical procedure. Other causes are listed below.

https://en.wikipedia.org/wiki/Neutrophilia

I only found a single fusion study.....nothing on scoliosis surgery or long fusions. See Table 2 ( I have not looked that hard)

Serum C-reactive protein (CRP) concentrations and white blood cell (WBC) count are commonly used to identify postoperative wound infections.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5642098/

There are some pretty good You Tube videos on CRP and WBC. The material is complex.

Ed
I think we can all agree that there's a difference between MAY occur and WILL occur.

jackieg412
03-14-2020, 12:40 PM
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.
My children( all adults) are on me to stay home. It is difficult for sure. I'm sure they are right.
I doubt the surgeon will proceed forward at this time with the scapulothorasic fusion. It probably is very risky to compromise my health to that extent.
Stay safe

titaniumed
03-14-2020, 01:26 PM
Linda, Correct. And WBC count is not a 100% guarantee of diagnosing infection. Or at least in the elderly.....

Blood work is the first diagnostic thats used. Then it goes from there....(When you smell smoke, there "could" be a fire)

Jackie, One thing about shouder surgery is that its really hard to operate a phone. We all know this (Ha ha) I am sure she is ok.

Bullet proof? Not me. My signature states age 61, the new 61. Thats better than any CRP or WBC levels. (Today's medical humor)

For coronavirus, gargling often might be a good idea along with the frequent washing of hands. I use Dr Listers recipe. Its called Listerine.
https://www.ncbi.nlm.nih.gov/pubmed/16242593

I have a highway behind my home and I dont hear very many cars. I am also laying low and staying at home these days.....Got an invite to go snowmobiling, there is no coronavirus in the mountains, only avalanches. Its much safer......(smiley face)

Ed

jackieg412
03-15-2020, 10:48 AM
This epidemic has indeed changed things. I wonder if patients getting ready for major spine surgery will have it postponed. That probably isn't a bad idea.
I would guess my scapulothorasic fusion will be put off until summer. First the wound and now a virus.
I guess it just helps us build up patience.
The streets are really quiet around me too.

titaniumed
03-15-2020, 08:58 PM
Jackie, If you have appointments set up, you might want to be proactive and call them to see if they have made any changes in regards to coronavirus. It will be interesting to see how they handle things at hospitals in the future.

Some CDC links
https://www.cdc.gov/coronavirus/2019-ncov/prepare/prevention.html

https://www.cdc.gov/coronavirus/2019-ncov/prepare/cleaning-disinfection.html?CDC_AA_refVal=https%3A%2F%2Fwww. cdc.gov%2Fcoronavirus%2F2019-ncov%2Fcommunity%2Fhome%2Fcleaning-disinfection.html

Some virus killing technology tidbits for those interested

Ultraviolet light
https://www.cuimc.columbia.edu/news/can-uv-light-fight-spread-influenza

Hydrogen Peroxide robots, food delivery robots
http://www.xinhuanet.com/english/2020-02/07/c_138763889.htm

Ed

jackieg412
03-16-2020, 07:22 PM
I have been having regular updates from my different doctors. Rush out out a update on the news that they were postponing all elective surgeries. It didn't say for his long but it makes sense because it keeps the patient well and also frees up the equipment, rooms and doctors for the I'll patient.
We are all in this together and should look out for everyone.

LindaRacine
03-16-2020, 10:14 PM
Just got word that UCSF Spine has postponed all surgeries and clinic appointments. I suspect this will soon be the case for all non-essential surgeries around the world.

titaniumed
03-17-2020, 01:47 PM
For those looking for current Coronavirus stats, this is a good site.

https://coronavirus.jhu.edu/map.html

Go upper right, click on 3 bars, select mobile version

Lower left, click data for active charts to show severity or acceleration of new cases

New cases have been increasing quite a bit.

Ed

susancook
03-22-2020, 08:14 PM
[QUOTE=jackieg412;172556]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

titaniumed
03-22-2020, 09:04 PM
Susan, Glad everything is ok, thanks for posting...

It must be quite the challenge typing your posts....I hope the pain isnt too bad. (no response is necessary)

I think its better that you went home. Sometimes you have to lick your wounds at home alone. You remember I had the nurses and the PT people out at my house after my spine surgeries. The thing is, nobody came twice. It was always a different nurse or PT person. Go figure.... If you get somebody you like, you might want to beg that person to come back. I dont know how they do the scheduling. I used to leave my front door unlocked wondering who was next...It truly was open house.

On the coronavirus subject, France is enforcing now. You cant go outside without permission. You have to log in with a reason, or get fined.
https://www.rte.ie/news/world/2020/0321/1124587-france-coronavirus-latest/

This is all so new and I want to say unexpected. (Even though viral attacks have been happening for thousands of years). Its almost hard to believe that its all come to a head, and we have been warned so many times.....Might I say zero foresight?

Hang in there Susan, things will get better soon.

Hang in there everyone

Ed

jackieg412
03-23-2020, 09:37 PM
Good to hear from you susan. I'm sure you are better off at home. With this virus the fewer people you come in contact with the better.
You are right Ed, we didn't need the warning. Let's hope and pray for the best.

susancook
03-28-2020, 05:25 PM
Thanks Jackie and Ed for your healing wishes. I continue to do well, probably more credit should be given to my experienced, fellowship trained ortho shoulder surgeon than anything that I have done. I read on line that many general ortho surgeons who do not specialize do 1 shoulder replacement a month. Dr. Thomas does 4-5 shoulder surgeries a week, 2-3 of them are full shoulder replacements.

Like many on the forum who have had revisions, I wonder whether a pain....like thoracic pain is related to my shoulder or spine problems.

In Oregon we are staying home to prevent viral shedding, so I am really laying low.

Susan

titaniumed
03-29-2020, 11:15 AM
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.com/articles/10.1186/s12984-019-0588-7

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
03-29-2020, 04:22 PM
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
04-01-2020, 07:50 AM
[QUOTE=jackieg412;172556]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
04-04-2020, 04:27 PM
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
04-04-2020, 10:10 PM
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/coronavirus-covid-19-can-plasma-recovered-patients-treat-sick

https://www.usatoday.com/story/news/health/2020/04/01/coronavirus-plasma-therapy-5-us-patients-covid-19-donors/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
04-06-2020, 10:45 AM
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
04-06-2020, 07:59 PM
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
04-07-2020, 12:48 AM
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
04-07-2020, 07:08 AM
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
04-08-2020, 11:50 PM
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
04-09-2020, 10:53 AM
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
04-11-2020, 11:40 AM
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_Nygaard_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
04-11-2020, 05:56 PM
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
04-11-2020, 09:28 PM
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
04-12-2020, 11:34 AM
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.

titaniumed
04-12-2020, 10:13 PM
I was a teeth grinder.....after my surgeries that stopped.

I have had 3 occurances of infection on a 2nd molar and both my dentist and perio recommended taking 500MG X 3X per day for 10 days. And yes you are correct for dental visits usually requiring a small dose 1-3 pills before your visit. (Without a dental infection) I am forgetting these things since its been 12 years for me. There are a few dental threads that were done here on NSF around 10 years ago....1or 2 pills probably isnt a problem but taking full bottles is concerning. I have no problems getting full bottles of amoxicillan from a dentist. They just call it in.

Scoliosis surgeons try to cover the main complications before you go in....I was guaranteed 100% that something would go wrong. Of course they cant cover everything. Linda has scoliosis surgery complication lists posted here on the forum. Use search.

Did you ever post your x-rays? Just wondering....

Ed

Tina_R
04-13-2020, 09:03 AM
I was a teeth grinder.....after my surgeries that stopped.

I have had 3 occurances of infection on a 2nd molar and both my dentist and perio recommended taking 500MG X 3X per day for 10 days. And yes you are correct for dental visits usually requiring a small dose 1-3 pills before your visit. (Without a dental infection) I am forgetting these things since its been 12 years for me. There are a few dental threads that were done here on NSF around 10 years ago....1or 2 pills probably isnt a problem but taking full bottles is concerning. I have no problems getting full bottles of amoxicillan from a dentist. They just call it in.

Scoliosis surgeons try to cover the main complications before you go in....I was guaranteed 100% that something would go wrong. Of course they cant cover everything. Linda has scoliosis surgery complication lists posted here on the forum. Use search.

Did you ever post your x-rays? Just wondering....

Ed
My grinding didn't stop with surgery. There are better mouthguards now that are created to balance the forces at work on your teeth. Supposed to correct your bite. I was skeptical but it has calmed down my grinding. It took a lot of work to create it. New technology, my dentist is sharp. But she won't give me an antibiotic, she insists my medical doctor do that.

I'm glad you feel positively about how your surgeon(s) covered complications with you. I don't feel the same way about my experiences, I feel I was kept in the dark. What good does Linda's complication list do me now? I have already begun my series of surgeries. That first surgery begets more.

I don't want to post my private medical details. So, sorry, no x-rays and no signature with my stats.

jackieg412
04-18-2020, 07:31 AM
Hi to all. I hope everyone remains well. This sure is bringing people together and at the same time keeping everyone at 6 feet apart.
I do see pain management this week to fill my pump. I am hoping that he can have a suggestion for scapula pain. I'm thinking this isn't a good time for major surgery. They had me on steroids in early March but recommended not now. Then they gave me myloxicam but this isn't arthritis. I am hoping they will try a steroid injection under the scapula. I have had it once before but it was used as a diagnostic tool but I hope it works for pain.I really have a problem at night if I move at all while laying down.

mabeckoff
04-20-2020, 07:17 PM
I really would have thought I would be past the time that infection would happen but it doesn't appear to be that way. The wound has been treated since September and started out not looking like too much. Little did I know that the red area that just opened and leaked was an underlying infection. What I thought was minor isn't turning out that way.
The thoracic hardware has been in place since February of 2011. Thought I was good to go but there seems to be another plan.I am on antibiotics now and hardware scheduled for removal on Jan.21.
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 had surgery on Feb 7 to remove the hardware in my femur bone. The metals have been in the thigh for over five years.

jackieg412
04-25-2020, 07:23 AM
Good luck to you Melissa. Sometimes it's just a waiting game for what is next. Hopefully all goes well and you can move forward again.

titaniumed
05-05-2020, 11:42 AM
They are now resuming elective surgeries in Reno....

Test a few days before and then isolate before going in.

Hope everyone is ok...

Ed