Der Parbie,
So nice to hear from you after all this time. I am sorry you have had so many family troubles but happy you have found Dr. D. Are you living in Boston now? I do Yoga and mindfulness meditation classes to help calm my nerves and I am doing pretty well right now. with all I have gone thru this past year it is an absolute necessity.My right side is much better. I started having some trouble on my left side tho and am going back down to see Dr. Ando

I am also trying :
Frequency Specific Microcurrent with an acupuncturist which seems to be helping calm the nerves in my neck
Pool therapy-not sure how much this is helping
Am Starting Strengthening with an Osteoball
Neurontin-600 mg at night-may try it during the day

Hoping to be able to go back to work in May. Take Care-JKL

Hi JKL,

I am glad to be back and to hear from you as well. I am so happy you are doing better, that is such great news! I hope your left side will get better, and there is a lot of hope since PT and the other therapies you have incorporated in your recovery have been working well for your right side. I am not in Boston, I will PM you later, I am trying to keep my whereabouts known to very few people due to the issues I have recently been through. What is an Osteoball? And did you continue the similar things you were doing before the past few months to help your right side feel better?

I am also on the same dosage of Neurontin but I also take it at night and I cant live without it which is sad to say. The meds I have been on since surgery I have not been able to taper down due to my difficult recovery and I am REALLY hoping that when I get rid of the seroma, things will go more smoothly, as I also want to get back to school and work. I do not have much support where I am but I am getting along ok I guess. Just staying focused, also working on changing what I eat a bit as I am always feeling very exhausted and get through 1/2 a day before I need to just lie down and do nothing.

Please keep me posted on how you are doing, will PM you soon

So my surgery is finally scheduled, I opted for sooner than later although it is going to be quite expensive since I have to pay OOP (no more US insurance). It is on April 16th back at MGH, Dr. Donahue plans to place a catheter inside when he opens me up to make sure that the seroma is the only issue. I'll have it inside me for 2 weeks but I don't plan to stay in Boston more than 1 night. I am also opting to do local anesthesia vs general which Dr. D does not recommend but says he will do it. I am only opting to do that because it saves me a lot of $. I am living off disability and paying up front for this is hard enough.

Only downside is I KNOW I will feel everything and the pain and I am beginning to freak out about it...

Hi everyone,

I haven't posted in a very very long time, and meant to update those who are oldtimers on my last surgery. I have gotten some messages asking about how I am doing now, and apologize for waiting this long to post again. I had actually been going through a lot of additional personal issues over the past year and was trying as well to recover as best I could or live a "normal life" without preoccupying myself with this evil monster we have called TOS.

In June of 2014, I had my seroma drained by a surgeon in Vancouver, Canada. I was in the hospital for longer than expected due to some leakage from my surgical site and needed to avoid any serious infection. When I went home, I had a nurse coming in to change my dressing because I had to keep my drain pump in the site for a few days until it was low enough to remove. Overall, the surgery was minor in my opinion in comparison to the rib resection and scalenectomy and pec minor tenetomy I previously had. To give some background, the first surgery was unsuccessful due to the surgeon not removing my ribs (I have a c-rib-well 2 but this was all the right side) although he was supposed to and a long thoracic nerve injury. I went to a second surgeon and things went well however I soon after developed a seroma. This was in my opinion and the surgeon's, due to the fact that I had a redo surgery. If I had gone to the second surgeon in the first place, I might be doing a lot better.

Anyhow, it took me a few months to recover following this last surgery, and it was very difficult as I had little support and was living alone. I eased back into daily activities and went through physical therapy, but it was not making things much better. Overall, my symptoms did improve in comparison to how bad they had been prior to my last surgery and even the first surgery. But not on a level that I am happy I had it. I began removing limits on myself and became determined to return to my life. I had been out of work for 2+ years and I am still young (29). So just recently, end of February I landed a job and relocated to Orange County, California. Starting a new job and transitioning to driving (a lot) when all I used to do was walk or take public transit has really increased many of my symptoms. Especially recently, with all of my commuting and sitting in uncomfortable chairs for long periods of time I am not surprised by this. But this is the sacrifice I am making to continue with my career, because without it, I will not do well mentally.

My symptoms right now are numbness in around 70% of my right hand, the remainder is pain, and numbness in my clavicle area and shoulder, as well as pain with increased use. My left side symptoms were gradually worsening and lately that has been become more of a problem, but I really want to avoid surgery only because of my personal experiences with them. This is not to discourage anyone from surgery, as I truly believe it had a lot to do with the surgeon I chose and also to each of us being unique in our own symptoms and level of severity. I would say I have a very severe case of TOS, and I am finally coming out of denial since I am experiencing a lot of neck pain and increase in symptoms again and need to address all of this if I want to keep living life the way I am right now.

I haven't had much of a chance to go through the forum yet, but I would like to help in any way I can for those who are newbies or are not sure whether they have the diagnosis. I am also hoping to learn if there is anything new in terms of physical therapy or even alternative medicine that has been helping others. I may go down the route of injections because at this point, I know I will not achieve anything close to permanent relief and just want something that can help me get through day by day. As for medications, I had a pretty rough battle, but managed to get myself off of some major medications, with one left, Gabapentin. I have been reading up and been trying to figure out why I still feel very tired and unable to concentrate or think clearly a lot of the time and I am attributing it to still being on this medication. My memory is also definitely not near as sharp as it used to be and I wish I could have it back. As much as medications can help, I have learned the hard way to be very wary of the short and long term side effects. Has anyone come across any type of treatment or medication that is working for them without a major side effect? I would love to find out!

One thing I cannot wait for is to go to Ando Aston Physical Therapy since it is right in Orange County. Ando is supposed to be an amazing PT that specializes in TOS and has treated 3 old members in the past who had some great success in PT.

Thanks for reading. I am so sorry to see so many of us dealing with such a debilitating condition. I hope my experiences are helpful to some of you.

Hi Parbie
Sorry u had to go thru all you've been thru. Are u originally from Canada? I was wondering how long u had your sx bf u had your 1st tos/Pec minor surgery? Did u have an injury bf your sx started, like a car accident, etc.? There's a fairly new User (toslady) who also has a long thoracic nerve injury and is having a redo surgery w Dr D soon.
Looks like u had your last surgery in Canada did your insurance end up paying for it?

Best wishes w your new job and pain mgmt. Let me know if u find med w/o altering your mental state, as I too would like some what of a normal life back!
Rhonda

Hi Rhonda,

Thank you for the kind wishes. Yes, I am originally from Canada. I had my symptoms for about a year before my first surgery. I had an injury but from lifting weights. My long thoracic nerve has healed according to my last EMG in Canada, but I have had EMGs done incorrectly in the past so I am not so quick to trust the results. I did have my last surgery in Canada and yes because I am Canadian, it was fully covered. I received a message from toslady and recently answered some of her questions as well. I hope this helps!

Thanks for responding Parbie
Had another? Was wondering if the Pec m tenotomy helped at all, and if u had specific sx from the Pec m problem?

Have you tried Edgelows protocol? Its much more gentle than mobilizations etc which IPA does.

Hi Parbie,
its so good to hear from you. i'm happy to hear you are in S. California and that you are able to work even if there is some pain. I am curious if you do go and see Dr. A. I still highly recommend him and his team but after seeing him for a couple of years off and on, i realized I was not really getting much better. Sometimes it flared me up because it is very aggressive. I stopped doing all their exercises for awhile but now am trying to add some back in. I can fill you in more by e-mail or PM...
I have found a new PT closer to me in Santa Monica that has helped me alot (very gentle)and I am also trying Prolozone injections. Once a month-3 times. it is now mostly covered by my insurance. I can feel a difference so fingers crossed.
I have had good luck with injections: Trigger point and now ozone so I would recommend them for tight muscles.
I may still go back down to see Dr. A, at some point to get my ribs adjusted . if I do come down we should try to meet-or if you ever come up to L.A.
I have tried to go back to work a few times and I get really bad flares, but I havent given up yet.
i have been on Lyrica for the past year and it definately helps me more than the Gaba and doesnt make me as spacey. i dont take very much though-also cannibis oil at night!! its legal here! It helps with bad pain and helps me sleep. Tumeric and Fish oil also.
BTW-Ocylyn has a website-"TOS society" that has some other O county practitioners listed. Massage therapists etc. Also Marc has seen some massage therapists and pilates instructers at A&A
Good Luck and Take Care of yourself,
jkl

When I first had the pec minor tenetomy done, I didn't feel like it helped much. Right now, I am numb in a good part of the area, so I would say no to sum it up. I did have symptoms, lots of tightness and both nerve pain and sharp pain and also if I press down on the pec minor I get tingling in my fingers, even now.