Just got back home from seeing a doc in St Louis very tired, I am seeing doc’s for a injury I did a year ago that didn’t heal quite right. Dr T thinks I tore the pec minor & maybe the scalenes too when I broke my rib based on how I described the vast areas of swelling I had - which I thought was pretty far for the rib to affect my shoulder line etc. so I tend to agree. He said was no way for them to see that on imaging. Once those healed they were tighter & thicker & more scarred so causing issues now & over time getting worse not better.
I had some diagnostics done there by injection with lidocaine into my chest wall muscles to be sure which one is causing the issue. Long story. But showed positively this is causing the issue. My back of my neck got better & the headache was gone for this time period. Not supposed to give long term relief but for determining the source. Scalene & Pec minor in the left side only even though I have both sides due to worry of injury to the frenic nerve - they do only your worst 1st. I met the PT guy there too - think his name was Mark but not totally sure have his card.
If I proceed with surgery 5 days in the hosp in St Louis long ways from my home & dogs & the another 5 days in a hotel close by get the drain out on the 7th day - complications or things can come up & he said wants me in the area so he can address this as he says they have seen it all & doc’s down here or in places where they don’t have a TOS expert - they can be floundering in trying to help but puts you at more risk. Hub would be there for the 1st couple of days but cant be gone for the whole 10 days & I am worried about my dogs a long time to be gone. Don’t have any kids who live here any more so need to talk to them I don’t want to board my dogs - Axel really mourned & was not happy when I was gone. He was really happy to see me they all were but he & then Augie were the happiest - but especially Axel he kept hugging me putting his arms around me.
I would love to have him in the hotel with me just keep one of the dogs the one hardest hit by my absence be so healing for me too -so a lot to try to piece together. This is only doing my worst side my left 1st hoping I can manage for my right to not need the surgery there. His odds are 87 % I will be better & only 1% chance made worse. Doc in Knxvl, Tn actually a tad further from us here than St Louis, who does a lot of these would have me in the hosp for 2 to 3 days & can travel someone else driving on the 3rd day home, BUT his odds are less than Dr T's. Deal is if I got into trouble here coming home sooner, I am even further away distance wise from him then St Louis. I told Dr T. I still wanted to talk to him. I am so exhausted to have made the drive but said I had too -
I was to see that doc today in Knoxvl but a call came in on Thurs that he was called out of town for a personal family emergency. I sort of want to see him just to be sure he does not feel I could not be helped by conservative measures. As I dont want to wonder or if anything would be different. But at any rate that got delayed for now. His stats are not as high as Dr T's - Dr T said only 1 % chance I would be made worse 87% odds I would be better. This other doc in Knoxvl has not been doing them as long but is a TOS expert - he said 80% chance improved,15% odds i would be WORSE & 5% chance no better. More to see if the technique & surgery would be the same offering or what.
I still wonder if Prolotherapy could not be injected into those 2 muscles? I am going to call around to one in Nashvl to find out - it could be due to that being so close to the frenal nerve that controls breathing for the lungs - they may not want too. The injections were done by guided imaging Cant think how to spell - floroscopy. The doc in St Louis is VERY good & I have no doubt is VERY vested in TOS in helping people - he introduced me to one patient who had surgery once - did VERY well got back to work working 12 hr’s a day lifting patients she is a nurse & sole provider for her kids - she got scar tissue & Dr T had to go back in to relieve that he reused the same scar area I saw it - to go back in again, she is now one month out from clearing out the scar tissue & is doing well. They tried other things 1st she said for about 6 mo’s from having to re-operate but she said I got to talk to her privately he is VERY good & the only doc she would have touch her. He gave me his direct cell # when we left I almost fell on the floor.
The one doc here does not do anything to the muscles only removes the rib but I do know AFTER these 2 lidocaine blocks my problems are in these muscles contracting down on my nerves so his operation here would not completely resolve my issue. Dr T feels I tore these muscles when I broke my one rib & when they healed got thicker from the tears & scarred causing the nerve compression now I asked if only those 2 muscles could be cared for & leave the ribs but he feels it may not do the complete job but right now they are still in there - but it only sort of froze the feeling of the compression right now, only temporary but def. showed this as being the source of my trouble. They can do Botox injections that give about 3 mo’s relief but not a permanent fix & each time takes more to do the job.
This doc in St Louis has done a Cardinal’s coach who pitches balls to the players is back doing this same job again, a Tiger’s ball player & a ballerina whose career was ruined all had this TOS & are back at their jobs. Plus others. I also met someone who had to have her surgery redone in the sense that she got scar tissue - so I felt he was not withholding anything & left us alone to talk. That is pretty darn good in my book - she said she got complete relief but she went back to working FT doing 12 hr's a day & is a nurse lifting patients is a sole provider so felt she needed to do some catch up she then ran into trouble some time after that - that is the thing is feeling good I have already read any of us must still take it slow & easy - overdoing can be a bad thing. BUT the good news is after he tried some conservative means 1st to see if it would help her he then opened up & found the scar tissue - she would have only gotten worse & no better if she had a doc who ignored this. I saw the scar amazing he was able to go back in on the same scar she had - looked pretty darn good for only being one month out from having this scar tissue removed. She could not say anything but good words for how he cares for his patients. For me the one of the hurdles is being away from home for 10 days - that is a long time. I get why he likes to play it safe if one gets into trouble at a remote place he is not as accessible for them as having them stay in the area. Overall a good visit, I told them to be working on the insurance to see what they say as I was told this could take a bit to get approved. I have to hope that I will be doing the right thing. The injections were good confirmation. In the meantime I figure ask about Prolotherapy if nothing else I could do the neck muscles & the outer shoulder muscles to try to help those. I still hate the idea of loosing those 2 muscles and 2 ribs so I must be sure I have looked at all options. He said the operation is hard & slow will feel like I got hit by a mac truck. I have no doubt on that score.
I just need to be sure one thing does not lead to another as that is how I got in this spot to begin with my simple break was more than just a simple break it led to other issues especially as nothing was done to address them for some time.
At any rate, this is long enuf -
Jill
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