Treatments Has anyone had Permanent Relief?

[Wolverine]

Hey All, I have been through the gauntlet of treatments only to find nothing has worked on a long term basis for me and helped with my tos..

I had one surgery already and now I am awaiting a re -do..

I have severe pain and the treatments are all not covered by medical..

So not only is the med expensive as well as the treatments but I find I have had no long lasting relief as to date..

Any one can share their treatment experiences that have made any difference with their pain and their tos can you please let me know thank you ciao Wolv*)

[j55]

Hi wolverine,
I don't know if you caught many of my posts from before the crash here, but I had some real good help from an expert chiro and 2 really good PT guys.

I had some of that info & posts saved on my computer but it got viruses and the hard drive crashed at about the same time as BT.
darn it all!
I only read here once in a while now - many of the old TOS gang are at a new place and working to rebuild some of the lost info.
PM me if you want any info so I'll be sure to get the message.

[Wolverine]

Hey J55 , good to hear from you and yes i would love any info that has helped I am feeling so frustrated right now I am needing some hope..

I will be in contact.. hugs ciao wolv*)

[tshadow]

Also Wolverine,

At times like this, I forget that TOS has cycles to it, and that when I'm at my worst, usually some "good" time is ahead...so hang on, and keep doing whatever you can that does give you any measure of relief. I am bed-ridden, but once in a while I do have an ok day and I hang on for them.

God bless.

[atypicaljane]

I wish I was replying to offer you a Miracle cure, But alas I am also not having any permanent relief. I am just writing to offer supoprt

I would like to know about your redo.....why are they redoing it? is this common, I am asking becasue I am wondering If I may need a redo?

thinking of you

[Wolverine]

Hey Tshadow and Atypical thanks for you reply and the support I appreciate it.

I am having a re-do due to the fact that 6 months after I had the 1st surgery I was rear ended and in chain reaction hit the car in front as well.. And it ruined everything that was done surgically.. I believe the seat belt caused alot of the problem as well.. It went right across my surgical area..

Now the re-do is much more then the 1st one and I though that was alot..

I am in alot of pain as well having severe problems with the tos progression..

Having the 1st surgery and 2 scalenes removed , bone out of neck and fiberous band makes your neck so much more fragile when hit .. you only have one scalene on that side .. They can not remove that one of my neck would just flop to one side..

So it is irritated all the time and with no rest.

The re-do they can not know for sure if it will work and I am in a continual limbo now of pain and problems associated with my tos.. No relief from treatments and surgery that they can not say for sure will work and cure this.

Also my tos is bilateral so after hopefully that re-do is done and iam healed then I have to also consider the other side for surgery as well..

So now I am just trying to maintain and help myself the best I can till I have the re do surgery..

Take care ciao Wolv*)

[ginnybean32]

I too was in a severe car accident not quite 2 months out from my post op TOS surgery on the left side. The injury I sustained was that of the long thoracic nerve which mimics Tos pain so it took them awhile to diagnosis me. I got wonderful relief when I had surgery in Houston with Dr.Nath who specializes in this nerve as well as any Brachial Plexus injury. My long thoracic nerve was stretched nearly to tearing and chocked off by scar tissue. Before a redo surgery perhaps asking your doctors to test that nerve or the spinal accessory nerve would be in order with NCV and EMG tests. Yes our necks are very vulnerable to whiplash after surgery and need the upmost care. We also need knowledgeable physicians that know what to look for if we have been hurt after surgery.
I was told as tossers our nerves are very close to the skin in most cases...and that is why we get TOS and nerve injuries in general so easily.
See my "Its been awhile post" It will be 2 years since my accident in Jan07 and I am pretty much pain free. The key I believe is time, medications when needed, surgery only when needed and again TIME!!!! Time heals all as they say but only with good doctors and a positive attitude. Just dont stay on the meds too long...they can create a whole different person...at least they did to me. Good luck, I know in Denver you will be in good hands...just look at all options on what can be going on in your body...It may not be the Tos again...wishing you the best. Amy

[flying_buttress]

I've had about 3 years of relief and gotten completely off all meds. My symptoms are increasing a little this year. I think it's a combination of getting a little bit too brave for even a recovered TOSer, and what appears to be a more intense winter coming up this year.

[humorme]

1. Can't emphasize enough exercise and stretching. Listen to your body. IT will tell you what it needs and doesn't need.
2. Massage and/or physical therapy and/or chiropractor as often as you can afford it.
3. Stress management.
4. Natural anti-imflamatories. Vitamin C, fish oil, L-Theanine, Zyflammend etc. All have helped me.
5. Do the exercises your Physical Therapist gives you. If you have a bad PT, get a better one. Too many people try for a "bit" and then give up and claim "it's no use." BS! Recovery will take a LONG TIME. Repeat...a LONG TIME. Yes, we all want results right away...I didn't truly start to feel SOME results for 4-5 months. It's definitely better....but not 100%. It will get there....I may take another year. Patience is a virtue.
6. There are some yoga poses that have helped ME. Don't know if they will help others...because each situation is unique to that individual. My symptoms were in my left neck/shoulder and clavicle area. Neck stretches for scalenes were helpful. Cable rows at the gym with shoulder down and pinched as often as possible helped to STRENGTHEN the mid-traps and rhomboids which I needed to bring my shoulders back to give room for the area and open it up (reduce compression). Yoga chest openers. NO eagle poses (if you know Yoga, you know what this is). Lying down on a foam roller length wise with sand bags on my shoulders to reverse the rounded shoulder forward. Lying down and stretching out the left arm so that the shoulder blade would pinch back. Doorway stretches. Google "Eric Cressey" and find articles he wrote about "shoulder savers." Don't over do stuff, but sometimes working through a stretch or some pain is a good thing....again LISTEN to your body IT will tell you what it needs/wants. Sitting in chairs with a verticle cyclindrical pillow against my spine length wise to again OPEN THE CHEST. You want to reverse any concaveness to your chest area. You want to open up the flow of BLOOD in the thoracic outlet. Do not sit at a computer for more than 20minute without MOVING the area in reverse. PINCH your shoulder blades back as often as you can. These are what help me. Again...this is ME...may not help you...but I'm betting much of it will.

[Wolverine]

Thanks everyone for your replies on here i appreciate them alot!!

And every bit helps..The more we connect and help one another through this the more of a chance we will be able to cure this .. Forever!

Letting everyone know how to rid themselves of this! We want no one to suffer from this one more day..


I appreciate you all so very much ..


Hugest hugs Ciao Wolv*)