TOS surgery. Does anyone have any experience/insight?

[Fly4free]

I have been suffering from thoracic outlet syndrome for almost a year now. I had an injury last May and unfortunately my nerves are still giving me a great deal of pain. I have had many tests done, MRI and x-rays before TOS diagnosis. After dx nerve conduction and arterial tests. Besides the nerve damage I also lose my pulse when arms are raised.

I saw a vascular surgeon yesterday, for the second time, and he agrees with my pt that I have reached all the improvement that I will get with just pt. I am unable to perform even moderate tasks without aggravating the nerves and can't sleep at night. I can't take it anymore!

The surgery is very invasive and the recovery long. I don't know of anyone who has had this surgery so I am looking for some input from anyone familiar with TOS.

 

[disneymarie]

There is a facebook page many members post on.
For surgical advice, Dr. Scott Fried in the Blue Bell area is the MAN.

We have 4 family members with Thoracic outlet syndrome. History of the first surgery was 1997. The problem is there is no cure surgery with the mechanism of TOS. It can help, maybe for awhile; or it can get worse.

My daughter had her first surgery which was from a stretch injury to the brachial nerves. She had a spasms start in the neck, shoulder and it only spread not calm down. We discovered she had anomalies that incited this to become TOS. She had a long neck, and short fibrous bands to the collar bone that support the neck.

When the injury happened and spasms began, knots across the upper plexus and her neck had a reverse curve. Half of society has the short bands that support the muscles of the neck, (Scalene area) in her case, for unknown reason a band was caught in a spasm and when the doctor went in through the arm pit to remove the first rib to free up space around the Brachial bundle, he discovered this short band pulled in the spasm down to the armpit. Later in the collar bone entry to free the scalene he located the rest of the band. The measure was less then 2"....being pulled all that way. We though great a reason and fix....

However, then scar matter developed, within three months she had pain and spasms really bad, adhesions such as a white/gray fibrous bands entangled around the surgical area nerves. So she had a redo. That surgery about 18 months later the attempt was to wrap the C4,5,6,7,8/T1 nerves in a gortex type mesh to prevent matter from reattaching. This did not help.

She never had relief from the day she was injured at 16 years old. I was in a car accident and had a brachial stretch injury mainly lower plexus, her had been upper and lower involvement. The upper is the higher Cervical nerves C 3,4 and the lower, lower cervical nerves of the bundle; c5,6, 7 8 T1.

EMG often cannot find the nerve impingement because it is often the sensory nerves involved, not the larger motor nerves. When the motor nerves are showing the Brachial damage, there is scarring and damage already,

I did not have the surgery, I had to leave police work my passion and eventually went on disability. Returned to school pt, and attained my BA and also PI license; additionally, a certification to teach criminal justice to vocational high school.

Unfortunately my daughter had one of the most extreme cases and body that created a lot of scar matter.

SOME people have an extra cervical rib, or vascular TOS referred to as TRUE TOS, this is because an x-ray will show an extra cervical rib, or misshapen ribs that can compress the outlet site.

The THORACIC OUTLET, is the area behind the collar bone and in front of the first rib where the brachial nerves travel from the neck into the arm, down to the fingers. This is a long way, 3 ft from spine to finger tips.

The brachial bundle of nerves leave the spine, travel behind the collar bone to the arm becoming the Ulnar, pinkie side; Radial, thumb side; and medial, the three middle fingers mainly.

Often it is mistaken for Carpal tunnel, but the impingement is not in the wrist, it is in the neck.

Unfortunately for our family, my son has suffered for 2 years since a fall with head pain, the arms. After the doctor wanted him in a Migraine study I insisted that the headaches are CERVOGENIC, not vascular migraines.
His EMG study showed damage to C5 and C6....he asked about surgery and I told him, after what his sister suffered, if our body structure has these short bands, and the predisposition to scar matter...that he should accommodate his life to the TOS.

You have to rule the TOS not the TOS rule you. There is a lot that may not be tolerated, and need to do things differently.
Blow-drying hair, we buy the holder from the wall to hold the dryer.
Telephone we use hands free set
Computer, I have dragon dictate, or limit my time and make breaks. Also use a wrist pad and support the arms. My area is ergonomically set up. Best position though is a laptop on a table I bought at Barnes and Noble for about $9. with a bean bag type pillow, and gel strip along the edge; they have them with coolers at Big Lots.

I have medication; it has been since 2001 that I manage....the worst thing is the housework. I would love to have my family take over what I can't do. Even pick up after their selves. Walking around with a rag on my foot because I can't hold a mop handle.

I did have a Bissel Flip it and worked really well, but broke. This week I bought a Bissle 14 lb floor scrubber, yet to try it.

I am not sure where you are but the top doctors for surgery are in Denver. There are two I recommend, and one avoid.
The top doctor in Phila area is Dr. Schwartzmann. He is retired, a lot of time in Germany, but still heads the Neuro at the Hannahman not sure if it is call Penn something now.

Well, I did not use my dragon and over did it, so if you would like any information feel free to ask.

Oh, recuperation....some doctors will do surgery release back to work the same place the repetitive action escalates in weeks...TOS surgery takes minimal 6 months to feel mostly better; which is also the cut off to feel if there was improvement.

IT depends on the method of TOS surgery, if vascular; there is scalene operation through neck to rewire the passage of the veins. ( they travel alongside the nerves)

The rib resection they will have to get to the ribs, and cut through the bone. Your body will have the intrusive pain for recovery. Surgeons I knew used a lidocain wrap and lay it on the area to numb it before closing. This helps calm the nerves that were tugged and probed.

There is a drain post op to get the most of the bleeding out of the post op site, this left behind could adhere to any structures in the body and create scar matter also.

Just our exp, but on the whole as your doctor can tell you, it may help. Not sure for how long, or it can get worse. Especially if one of the nerves are nicked or cut during surgery....this is horrific life altering event and does happen.

Medication that helps, I found the muscle spasms best treated with valium when flared or long day. Toradol for a flare, otherwise it is 3 Advil @ 2 times a day. Long term I have had percocet for pain, I use maybe one every other day when working.

I work special investigations sub contract work for ins adj company pt, my husband drives me, he is retired; scene diagrams, photos for accidents, fire flooding etc.

My PI business I do subpoena work and supervise court ordered visitations. I have a minimal income a month from Soc Sec and my husband is retired. He is only able to find some low paying security work so I am carted around to work. Last year under my ticket to work was my highest year. But most of the income was reimbursement for travel.
I cannot hold the steering wheel long, or sit for long periods. There are several lumbar herniations also from my car accident.
Sorry that you were afflicted, but relieved you did find a diagnosis.

 

[Fly4free]

Thanks for all your insight Marie. I hate to hear how your family has been affected by this awful syndrome. It's amazing how debilitating it is! I did find a good pt who really helped me to temporarily release the nerves, unfortunately the rib always pushes back on it. Any house work, especially sweeping (forget mopping) aggravates it again. The flare ups last a day or 2. So not worth the pain! I am very limited how far I can drive. Now my "good" shoulder is also giving pain, just not the shooting nerve pain. I have to stop trying to carry everything on the better side, b/c it is quickly getting bad too.

There doesn't seem to be a lot of Dr.s that perform this surgery. I did see a dr. @ Jefferson yesterday that I felt confident in, unfortunately he doesn't take WC insurance. This being a work related injury is really making it difficult to arrange dr. visits. I paid for this visit with my own health insurance. The dr. was great and did give me some recommendations of other dr.s to call about the insurance situation. 2 are in Philly 1 is at Johns Hopkins. I am really getting depressed and am feeling desperate for a solution. The pt and dr. made it very clear that this surgery is a last resort. I feel that I have reached that point now. So sad I may never enjoy my formerly active lifestyle again.

 

[disneymarie]

Former life, WOW did I just say that yesterday, I kicked the towel I was trying to clean the floor on my foot, Sweeping I made the adult son do. DH wanted his laundry done before work today, reminded it takes two days to do it, if he does the carrying. I should say his work uniform and dark socks, works pt security and then my designated driver.

Sunday's work I have to go to an antique flea market for a trip and fall they had some weeks back. 2.5 hr ride doing site photographs, and diagram, check the warnings if any, and liabilities in anticipation of litigation.
The work helps keep the medical coverage, but kills the body.RIght now I am working about 10 hrs a week.

I miss how nice my home always looked, fresh paint, carpets shampoo'd even the beds made up and vacuumed. OMG, if I don't scour the bathrooms, not one adult in this house would dare be botherd even if it crawled. My best friend is the handheld power steamer, and Clorox wipes.

If you are that close to Dr. Scott Fried www.nervepain.com he is an amazing person. Can rule in or out surgery helping, lots of tricks of the trade to help with the pain.

Scott has treated TOS and W/C for many years. He did surgery, now only suggest or will recommend as last resort. There are a few doctors that do the surgery, I have to see if I can find my internet df from your area.

His website is amazing, he has a couple of books out. Our Dr. Togut in Wilkes Barre retired a year ago but he went from surgery to treating by moderating life style and researching eveything that flares.
There was one doctor at Hershey did the surgery, but not his forte'. There is a thorcic outlet forum on neuotalk.com with a doctors list on the top.

Our ordeal started in 1993 when my older daughter was injured w/c. They did CT surgery sent her back to work and the w/c doc told me it was not going to help her, but she did have ganglion cyst to remove at that time. He knew but never told us the diagx. It took 3 more years, until Dr. Schwartzman saw her. Even the nuero that referred us never used the word TOS.

You know most doctors NEVER heard of TOS, or do not believe in it unless it is True TOS. If surgery were not so invasive, if it could be done with a scope would be so much better.

Have you stopped by the FB page?
One of my friends is having surgery next week, a clean up, redo. I am not sure her last surger was. Dr. Sanders is doing her surgery as she is in Denver.

My son will be starting consults with the neuro this week and we will discuss treatmetns. I think the first will be the epidural in the C5/6 where is EMG is worse, and lidocain patches. They want to try the Neurontin on him, but he did that before and the high dose makes him feel like bugs under the skin.

People ask if it is heridatary that three of us have it; it may be that we have similar anomolies, and the accidents we had triggered. My uncle was a first patient of Dr. Fried and had ulnar surgery, swinging a sledge hammer triggered his. His dil had a rear ended car accident and treated, no surgery with Dr. Fried.


I hope that you can find a reduction in pain, surgically, or treatments. There are several out there the real pros ONE in your area actually was with a hyberbaric chamber for hyper O2 for the with.nerves, another was Lidocain IV treatment to calm the nerves down. The third, is botox.....many find greater long term relief with that. They feel like a life back.

If you would like any of my links, referalls, pm me.
di