Use of regenerative technologies for TOS
 

a number of doctors out there are showing that they can decrease scar tissue and increase our new organic tissue using PRP or stem cells. If scar tissue is a problem in thoracic outlet syndrome then it would make sense at least attempt this. I spoke to Dr Hugh Gelabert at UCLA's mentions this and this made sense to me because I have heard of stem cells converting heart attack scar tissue to actual heart muscle tissue. He does not have experience or numbers to discuss with me about it but I am on the lookout. I have a consultation with Dr Miller that is here in the Los Angeles and Orange County area. apparently he does PRP injections for this TOS.

Any comments?

Very interesting! I am convinced apart from multiple crush syndrome for my TOS my biggest issue are scalenes on my left side, injured from a bike accident. Scar tissue resolution is like the holy grail for us TOS'ers.

http://www.scientificamerican.com/ar...dicine-injury/

Theoretically, many of the athletes may have a type of tendonitis, [such as] Achilles tendonitis or, say, patellar tendonitis in the knee or tennis elbow. Many of these tendon injuries become chronic, and involve microscopic tearing of the tendon and formation of scar tissue. A reason why it's difficult to heal these tendon injuries is related to poor blood supply to the region. The perfect example would be the Achilles. It's a tendon with, in general, a poor blood supply, so when there are these microscopic tears or chronic scarring, the body has a difficult time healing it. The theory is that the body can't on its own get enough of these healing or growth factors to the area, but now this concentrated platelet injected there just enhances the nutrients and growth factors to allow the body to heal it.

http://www.ncbi.nlm.nih.gov/pubmed/22182435

http://www.shoulderdoc.co.uk/article/1324

Need to be careful though.. no need to add more to scar tissue

https://www.orthop.com/pdfs/JBJS_Rev...ew_Figures.pdf

But is it really the scar tissue? How do we really know that? it seems like the drs don't really know what it is, they just assume and make speculations. I don't think TOS is understood enough.

There is definitely an inflammatory component to TOS and other items. But people get back from far worse, so if you can reduce the main drivers of pain, rest will fall in place. I think accupuncture has its place in muscles but not near nerves.

Akash I believe you're right. PRPn increase scar tissue who knows, i'll take a look at your paper link. I tend to think scar tissue is reaction of bad inflammation. I was looking recently at serrapeptase an enzyme to break down fibrin or the precursors of fibrin, I'm not sure. I don't know of its use for actual developed scar tissue. I was wondering if injections might help. It has been shown in mice to reduce scar tissue post surgery. Even when taken orally.

Jheumann, do you mind posting on how your experience with Dr. Miller goes and what is his information? I'd like to do some research into this and him as well. I recently moved out to OC and need to find new doctors (have had 3 unsuccessful surgeries in the past 3 years). Thanks!

[QUOTE=Akash;1138489]There is definitely an inflammatory component to TOS and other items. But people get back from far worse, so if you can reduce the main drivers of pain, rest will fall in place.

Yeah, exactly. How can people recovery from near death car crashes and such and we can't recover from this?

What I am saying applies to me. I don't mean any offense to you or anyone else so I don't know how specific your situation is.

Basically, I was a disaster waiting to happen and it did. My luck. I was near asleep when my accident occurred so I couldn't protect my most critical area - the neck.

Next, a prominent PT says "accidents expose weaknesses in your body". I completely agree with this.

In my case, I was a classic case (still am) of overstressed movement muscles acting as stabilizers (my stabilizing muscles were weak to begin with) and a collection of issues. I am still figuring them out by reading.

When you have a weak core and improper upper body musculature, and the wrong overactive lower body musculature, you develop over stressed upper body muscles, forward head posture, and all sorts of movement dysfunctions which trundle along happily. Add sedentary habits (mine) and rapid activities (crazy stressful running around doesn't compensate). Computer work is the worst.

Bad posture is a result.

Now, along comes an accident and switches off a few of the critical muscles that are needed to maintain the above house of cards. Bang, everything collapses.

Add faulty breathing so that accessory muscles which were anyways near nerves become even more hypertonic.

Point is though that theoretically its all reversible, but you need to find/fund a 100 PTs each specializing in some different attribute and work your way through them. Suppose you learn deep breathing and can relax your accessory muscles like the scalenes. Suddenly they will disengage and things may be better.

I have read several reviews of Edgelows protocol which point this out.

The United States, Europe and Australia are the best in this regard. You have a plethora of options.

Highly educated PTs who know their stuff. They may not know everything. But each person you visit, learn from, will give you one more key to your puzzle and its possible that a year or two from now, your symptoms may be inconsequential.

That's the approach I'd follow in the US. I am amazed by the number of skilled professionals there.

Akash, great insight on all this. Here's what happened to me.

I was born with abnormal first ribs, there was a 4cm piece on each side that was connected to my sternum. These extra pieces of bone made my first rib very immobile and were pressing on arteries, veins and nerves. I had a bad posture my entire life but not because I didn't want to sit up straight, but because I couldn't. My first rib wouldn't allow it due to being immobile. Then I worked on a computer for 10 years.

Obviously I found out all this at 34. I didn't know I had abnormal ribs, tos or bad circulation.

The big question is...what now? I also have a long neck and I am fairly tall for a woman. 5.9 or 175cm

Thanks for your kind words. I am not a medical professional so I can only point to things I have discovered along the way.

TOS is the hardest thing that I have faced in my life and has completely dominated it for the past six years. I am in my late 30's & hence I have had to do my own reading to come out with fixes.

Your abnormal first ribs are a structural defect - those need to be fixed for optimal results. But suppose we look at it the other way, if you have bad posture and those ribs, yet you weren't in pain, what changed? I would suggest your computer work which pushed your neuromuscular system into overload, stressing some muscles and letting the rest "switch off".

For the obvious shoulder part

If you have a long neck, chances are that your clavicles droop downward (do they? check the angle at which your collar bones are- do they point downwards and/or are flat) and you have a stretched upper trap and your scapula are positioned lower than they should be (droopy neck, depressed shoulder syndrome).

Typically, the dominant arm (right for most of us) is more forward and downward/than the other one (that's normal). However, if both scapula are lower - have a PT check this, then chances are that your following muscles are overactive:
-Upper Traps, Levator, Rhomboids - with Upper Traps likely being weak as well
-Weak/Inhibited: Middle Traps, Lower Traps, Serratus.
What this means is when you attempt to raise your arms up, your scapula are lower than they should be, and rotate out upwards too much (leading to shoulder instability, and compromising the space through which nerves travel near your neck).

So how to fix this? Your PT should help with the exercises and you should do them gradually.

For the not so obvious part

Take a look at your posture. Is it tilted? Do you tend to favor one leg over the other & do you hyperextend your knees? Do you have a lordotic or swayback posture?

Typically, posture begins from our base, the pelvis. If you can gently, by relaxing muscles elsewhere make subtle changes in your system so your head no longer needs to go forward, it might take some of the strain off your ribs and shoulders.

Stuff to explore.

My posture has fixed itself after my surgeries. The extra bone was cut so I no longer have this issue.

I'm sure I still have a lot of muscular imbalances but I'm not allowed to do PT right now. The computer still aggravates me immensely.

What do you do for work, Akash? I don't know what to do for work in the future with this pain.

Post surgery please take time to heal. You dont want to add scar tissue.

I work on computers 24/7. Very stressful

However, I take a look around me & I see people with 5x worse posture, so its not the only thing & I remain hopeful I can fix things. My understanding is that its buffers - we guys used up our buffers so the fire alarm that is in the nervous system wont stop. Multiple crush syndrome.

Now let me work this the other way. If the body has a buffer wherein compression > certain level triggers pain, then if we take over the compression at other places, perhaps we can reverse the issue.

When I look back at my experiences and talking to knowledgeable members on this forum (chroma, smaug, jo*mar and many many others) who volunteer their information, I realize how many things are interconnected.

To explain - I accumulated even more injuries over the past two years to the point I was literally crippled all over. But as things go, I was too stupid to figure that out so I continued & what has surprised me is that what I thought was linear - TOS- > neck/shoulder issue alone - probably isn't. For instance, I am fairly convinced that bad posture from tight hip/calf muscles can accentuate compression at the shoulder/neck complex. So one has to fix things everywhere.

Regarding your concerns, if you are in the US, I believe you have disability provisos. I'd seriously suggest you take that (it should pay some bills and frankly, you were paying taxes so its society's responsibility that they pay some back to you and in turn you take the time to get better).

I don't have that where I am at. I work so as to pay off the stuff I have invested in looking for answers.

Please use that time you are not on work, to slowly but consistently explore for alternatives even post surgery. Alternative methods to relax your nervous system, which in turn will reflect on your muscles.

I was told for instance by the net/official .gov sites that accupuncture is nothing but placebo.. however each time I did try it, it had a noticeable effect on my muscle guarding.
High power TENS like system (InterX) made me happily go months without discomfort.

I sincerely believe (based on what I have seen), that the US is the place to be, to fix things like TOS. There are a multitude of options and some amazingly skilled PTs. Please be optimistic. I know you are going through a tough time (We are all in the same boat) but given your structural issues have been fixed, it might just be a bit of time to fix things.

Akash, yes, I am in the US and I do have disability through my ex employer. The problem is I am very isolated and miss the social interaction and I also feel...useless. I also have too much time to worry about things which is not good for a person with a history of depression like me.

I am seeing a neurologist soon, that's what my surgeon wants me to do. I really hope they don't pump me with medications, that is the last thing I want. Hopefully my surgeon will let me do some PT soon so I can work on these muscle imbalances.

Acupuncture was not good for me, it triggered a big nerve flare.

I understand the issue about being active and so not having too much time to worry. But in the long run, you'd be trading your health as versus exploring what needs to be fixed. So I'd say you have it right currently, that you need to convince yourself that health comes first, that things will be ok & you can fix things.

Please don't worry about PT right now. You are healing, you need a break from everything, including PT and need to feel better and stronger before working on imbalances and all. Let me explain, when you have surgery, your body is concentrating on taking all available nutrients and healing that area, why spread out the nutrient focus amongst multiple areas? Let your body adjust to your new you, with those pesky ribs gone.

At best do the light PT advised to keep yourself mobile and flexible and what is advised by doctor post surgery.

Drugs - I'd go with what is advised. You might need those drugs to calm your nerves down post surgery and reduce inflammation. That's vital. One of the big mistakes I made post my horrible accident was to not use my full dose of painkillers - might have reduced my scar tissue .. always things i shoulda done in hindsight.

Re: other items for healing (more passive than accupuncture) once you heal.

One of the big things that really helps this sort of stuff, and which is #1 on my to do list is pranayama or yogic breathing. Its relatively (or so I read) gentle, has a profound impact on the nervous system and stuff like depression. TBH what is depression (everyone in chronic pain would have it, otherwise they wouldn't be human beings would they?) - its due to circumstances - the injury and concern about whether it'll get better and second, due to the negative hormone/chemical imbalances that develop in our body due to continued pain, inflammation & sleep issues. Pranayama is supposed to address all these.

There is this institute called Art of Living, which trains folks in all these - please see if somebody around your area has this available & do it gradually. They call it Sudarshan Kriya, but its basically yoga & yogic breathing (the postures are actually secondary to breathing) so you can do breathing alone once you heal. Art of Living has disciples and trainers WW. Other guys who are really good are BKS Iyengar Yoga folks.

Way to look at your life right now (and I apologize if I come across as preachy) is a) you were hurt b ) you got good medical care c) you need time off

I mean, after all you have been through, isn't it your turn to take some rest and take things easy? And you will only do so long as you become better.

Of course, you will also be productive in that you can explore things that make you better & you can always come and tell us about it. :)

So...your job right now is to fix yourself, and if you find things along the way that help you, by sharing them you would be helping all of us too!

Thank you! And I didn't think you sounded preachy at all.

I've always been a very goal oriented, focused person...I like to work, to feel useful, independent, etc. Type A personality which is not always good as I've learned the hard way.

It is difficult to not feel guilty about doing nothing when everyone is rushing off somewhere every day. I think society here also make it hard because they have no empathy for sick people, we are all just...lazy. The insurance company makes you feel that way too. There is a high expectation to be ok all the time, to be happy all the time and to work until you drop all the time.

These expectations lead to depression as well. Life is not supposed to be happy all the time. I do practice meditation and I read a lot about these things. I haven't been very focused lately, it seems like I can only do these things when I'm calm. It also doesn't help that drs make unrealistic promises about recovery. This gives the patient anxiety when they have not recovered as well as they were supposed to or as fast.

PS: Pranayama aka yogic breathing has many many types. Please avoid the forceful ones & do the gentle ones - which is why a good teacher to do the gentler sudarshan jkriya ones should be ok

Well, those people are rushing off everywhere because they can and we have a tougher task ahead of us. I dont think you should feel guilty at all. Its tough to be in your shoes and its not like you asked for all these things

I do think TOS is linked to being a Type A/Type AB etc - we are generally harder on ourselves.

And yes, society generally has healthy people or folks who don't have such chronic syndromes. So some act insensitive.
We go through this everyday and folks don't get it.

The stuff you said about being able to do meditation (to calm ourselves) only when we are calm (paradoxical) is so true, LOL!!

Today, I wanted to do some gentle movements to fix my Nervous system etc. But I was just too keyed up!!

Talk about a catch -22!!

I had some prp injections in my knees for arthritis pain and ankle for which was thought to be from peroneal tendonitis but now know is tibial nerve compression (tarsal tunnel).
What I have read about prp and told by the Dr who did this on me, was it helps to heal your tendon that are weakened from injurys or loose its. It will never heal to its original state but can strenghten tendons by helping to form scar tissue. It did help my knee pain short term but did nothing for my ankle Bc its nerve comp not a tendon problem.
So, I dont know how it could help tos where there usually is already a lot of scar tissue involved and this is what's compressing the nerves. Tos is not a tendon problem.
Watch out for false advertising! Some drs promote prp and prolotherapy as curing just
about everything! I wish it were true, as I have spent $18,000, most of my savings, on prolotherapy alone. Most insurance co.s do not pay for these treatments, mine didn't and I have one of the top rated plans.




about everything! I wish it were true, as I have spent 18,000

thank you. I guess I was just hoping to avoid surgery. The way I have been feeling the past couple of weeks however, things have changed. I'm getting a little of the swelling and some purple hand at some times in the day. I hope Dr Gilbert is good.

Feedback from Dr. Miller Consult?
 

Hello J Heumann,

I am interested in your feedback from your consult with Dr. Miller. I have longstanding TOS, bilateral scalenectomy/pec minor and now believe that I have scar tissue in upper left portion of brachial plexus. I had one revision surgery with Dr. Gelabert- it initially helped but know I think that scar tissue grew back after a year. Do you have information/sources that I can read about regarding the PRP injections? Hopefully you are doing better?? What can you tell me about your experience with Dr. Miller. Where is he located? What is his speciality etc...

Thank you
MarcB
Santa Barbara
Bilateral Scalenctomy first rib resections
Bilateral Pec Minor

Dr Miller
 

His name is Dr Lawrence Miller. He is in Beverly Hills, Long Beach, and Santa Ana. He requested PRP for the scalenes, no word back yet. He said if my pain is severe enousgh, f it, get the surgery. :confused:

PRP or A2M may help
 

My issue is more the middle scalenes as far as we can tell. Not only that, but I have a nice fibrous band from a CT cervical process that has developed a connection to the 1st rib. So, while I would pursue the PRP or A2M (Sheldon Jordan), I have a built up obstruction that is hard to work around, o surgery of some sort is my option, perhaps with PRP later for spasms, or A2M which is suppose to relieve inflammation, as per Sheldon Jordan. I had PRP for my anterior scalene, no noticeable difference.

Hi 16r honda, can you tell me about from where you got your prolo done and what your experience was?

Any results on TOS Therapy
 

Hello Jheumann, we traded messages a few years back. I wanted to know if you had any success with the PRP to reduce the scar tissue associated with you TOS? I'm hoping you've found some relief! You also mention in your posts that you have a fibrous band in the CT cervical process. How did they diagnose that? Did you do neurography? If so, any recommendations? I am hoping to follow up with Dr. Gelabert in the next month or so to see if there is anything to be done about post surgical scar tissue and pain associated with post surgery ( had surgery 5 years ago). Still have daily pain and severe limitations. I also found the Centeno Clinic in Colorado for PRP. Not sure if you have any information/experience with them. Thanks for any information. Marc