Hello all,

Since my previous thread, I have been diagnosed with bilateral neurogenic TOS by Dr. Freischlag at UC Davis and was told that change of my hand color is sympathetic nervous system overreacting. My pain is quite severe, I feel like my both shoulders are burning. I'm so afraid of losing my nerves as I've had an EMG that showed chronic neurogenic changes in C8 T1 both hands muscles with mild poly phasic units in paraspinals.

I have few questions I want to discuss with you:

1. should I see a neurologist ASAP?

2.Also I'm trying to decide between taking a trip to UCLA to see Dr. Gelabert and Stanford to see Dr. Jason Lee. Any thoughts about this choice? As I mentioned, I've already seen Dr. Freischlag and really liked her. She gave me 8-12 weeks of physical therapy. Coincidentally, I have two appointments with Dr. Lee and Dr. Gelabert on the same day and if I reschedule one, both will have to wait for another month. I have been trying physical therapy, mostly myofascial with manual therapist for about a month and haven't seen any improvement. I just had a big flare up 5 days ago and in pain 8-9. I started feeling tingling in my legs as well...(I really hope that this sensation is from lying down and also from doing Edgelow breathing with my pelvis moving consttantly...) No relief from Edgelow either, as far as I can tell, although it's been only 4 weeks..

3. I've been rejecting to take gabapentin, but with this pain, I think I will have to try. If it calms down my pain, will it make my injury worse since i will move more??

4. When I'm in severe nerve pain like now, should I cancel the manual therapy?
Most of my pain is nerve pain and I found so far no relief from any manual modalities.


Any thoughts on doctors? Taking meds? Any future to-dos?
Thank you in advance for any input!!

I'll link your other thread to refresh others that may read.
http://neurotalk.psychcentral.com/thread233039.html

Other opinions shouldn't hurt, they may see or know of PT that might be better for you. As long as you can swing it financially.

Always request the most advanced PT/DC that you can get, or find on your own..
Even with the best PT it will take a lot of time, it took many years to develop TOS and it won't get resolved in weeks or months. Home follow up & lots of self care many times a day is very important too. PT sessions alone rarely does it.

I didn't do Edgelow , but did learn by you tube proper diaphragmatic breathing.
DC & adv PT adjusted by top ribs.
I used Sharon Butlers gentle stretching , as sticky/tight fascia was mostly my problem.

Does PT talk with you while doing treatments? About what they are doing & why?
Do they mention rock hard muscles (spasms) or trigger points?
That is a way to learn and then gauge how experienced they are.
Do they assess each time & adjust per how you report sx & pain levels?
If not , seek better PT.

If spasms or tense muscles - a muscle relaxer may be helpful as a first option before a major pain med.., sometimes those tight muscles clamp down on the nerves.

As far as Rx pain meds , if you use them to go back to the actions that injured you, then you will do more damage..
If mainly to drop pain levels so you can do daily activities & PT and such, focus on healing, then should be fine..

Thank you Jo*mar.

To answer some of your questions, my PT does listen to me and adjust to what I need however after reading many of these forums I wonder if I am just too disabled and into bad of a shape to show improvement. My flareups are major with pain going up to 10. They happen fairly regularly. Standing up or simply sitting makes me far worse. I cannot walk for longer than 510 minutes, without increasing pain and for the last month have been going to the car and back.
My wife has been doing pretty much everything for me like driving helping me dressing up, sometimes even feeding me when I am bad. Those days I can barely hold a toothbrush to my face. Spend most days lying dowb

I think that the fact that I've been through many modalities and people before getting diagnosed, made me worse. My symptoms started in the left arm with incredible nerve pain. Then right shoulder. And currently are in both arms. I cannot bend my left arm - the nerve is still irritated at the elbow - and it's always always in pain 4 at least. I can barely lift something with my right arm, but the right shoulder is killing me again 3-4. At first it was suspected that I hadtendinitis in my left elbow, and then followed by tendinitis in my right shoulder. After not getting better for 3-4 months, I go to PT three times a week now for about a month with TOS suspicion, but for the last month only see very very little if no improvement.

My physical therapist believes that my sympathetic nervous system is over reacting to any input with severe pain, which prevents me from doing any exercises or gentle stretches. Simple shoulder shrug or shoulders back instruction, send me to several days of laying in bed. So I've been doing gentle manual myofascial release and not much more. Flare ups happen regardless, and I almost see no pattern.

I have burning in both shoulders under both clavicles, numbness and tingling in all the fingers of the left hand and occasional numbness in the right hand. My EMG also show chronic neurogenic changes in both hand muscles, and I am afraid of losing my hands, which I so need for my work as a musician.

Even holding a cell phone to type is a major hassle. Well I dictate.

This is why I feel like I need to find the right doctor for a second opinion ASAP to not delay, since they are always months out to have a consultation.

Yes, if you can't drive, dress yourself and pain is that high, PT does seem a bit much to even be trying..
We had another member on long ago that did not respond well at all to PT , high pain with thyroid issues and maybe a somatoform, or autoimmune disorder?
She also had RSD/CRPS..not a good combo..

More expert opinions is a good plan..

If pain is that high affecting sleep , then sometimes meds are needed - sleep is very healing, as well as less muscle tension from fighting thru the pain constantly.
high pain = shallow breathing & tensed muscles & lack of good sleep = NOT good at all.
tense muscles do not get oxygen/blood flow and cannot remove the toxins..

Dacello,

Sorry about your TOS issues. I recommend that you contact a number of TOS specialists. Dr. Freischlag is controversial. If you do a search of this website and other websites, you will find a lot of negative (and some positive) reviews of her. I was operated on by her team in 2010 when she was at Johns Hopkins and was very dissatisfied. In August 2015 I had a reoperation by Dr. Donahue of Massachusetts General and some of the damage done by the Freischlag team appears to have been corrected. I am not familiar with Drs. Lee and Gelabert. In addition to Dr. Donahue, I have heard favorable things about Dr. Brown (UCSD), Pearl (Baylor), and Lum (Johns Hopkins).

Thank you toslady!Glad you are feeling better after the 2nd operation. I have scheduled a meeting with Dr. Donahue, but it is a couple of months away. Is it ok to wait this long? Will try to schedule with Dr. Brown. It's just travel in my condition is extremely precarious and I needed to really schedule carefully. Also any opinions on Dr. Thompson in St. Louis? I am trying to decide if I should fly there...

In my opinion, Donahue is worth the wait. I have no first hand knowledge of Thompson. From the reviews on this website and others, it appears that Thompson is a skilled surgeon, but has a poor "bedside manner." Many report that Thompson improved their condition, but still complain about how he treated them. I understand your fears about air travel. It was a challenge for me to travel from the Washington DC area to Boston to see Donahue. I always took nonstop flights even though they were more expensive.

From my research, Dr. Donahue is the most positively talked about among this forum, and Facebook groups. I am trying to schedule an appointment to see him, and will gladly pay the price of airline tickets to see the "best". If you can wait to see him, I certainly would. He has imaging available to him that others do not, and will use this to his advantage for treatment. I am trying to avoid surgery, but at a point where I need relief from this disorder. Best of luck to you, and I hope you get relief soon!

Dacello,

Second opinions are sometimes life changing. There is nothing wrong with getting more information, especially if potential surgery is at stake.

As someone who suffered a nerve injury and repair, then RSD/CRPS from a later and unrelated surgery I would encourage you to try medications to get your nerve pain more settled. Intense, noxious pain input is not healthy and over time can cause changes in pain processing. These can revert with pain reduction - thanks neuroplasticity - but your pain has to get controlled first.

Taking a medication that helps calm your nerves will make you more comfortable and help reduce inflammation in your nervous system. Gabapentin is a common choice for this as are some of the old tricyclic antidepressants in much lower doses than used for mood. I had luck on both gabapentin and nortriptyline. Separately not together, at least for me.

Either neurology or pain management can help you. Getting started on something may also help your PT. With ramped up sympathetic nerves it is quite difficult to tell what is what. You may be able to do more safely but just can't tell because of pain from upset nerves.

I hope you get relief soon.

Thank you littlepaw

I just have this weird symptoms, but I don't quite understand. When I sit up or stand up, I have this puffy stuff on both sides of my neck, right above the clavicles. Is that normal with TOS? This is why I have such a hard time doing anything. I feel like the puffy tissues are pressing on my nerves when I stand or move. They also press on blood vessels, because the palms of my hands turn dark red when I stand or sit. Obviously a problem with circulation. Does anyone else have these symptoms? Any way to reduce the puffy stuff? Is itinflammation in the scalene muscles? If so, does anyone know how I can reduce that?
My PT thinks it's inflammation and she suggested that I put ice on it. However I do not think that icing my scalene's is a good idea because it tightens them up. I almost feel That if I solve this problem, I could do so much more in PT and in general. Right now I even have to put Edgelow on hold...