is there any way you can stay longer there? its so hard to get the right care and now that you have found it - it would be a shame not to be able to continue it at least for a couple of weeks....

parbie, I am so happy you liked Susan and she is so good. She sounds like the perfect PT for us TOS' ers, with the right combination of philosophies.

I wish they would accept insurance, but thanks for letting me know, I thought it was only mine that they didn't accept. Let me see, you have inspired me to maybe pay her a visit one of these days.

parbie, Keep positive. You are very fresh from surgery yet, it takes time specially for nerves to bounce back. I admire your resolve to travel so soon after surgery and keep searching for a good therapist.

The road to good health is not straight but there definitely is a way always, we have to keep searching and sharing.. for ourselves and others on the forum. Good luck with finding one in Toronto. You will feel more relaxed and calm being with family.
You will feel much better and " in control " ( golden words from Edgelow..).
When you feel out of control is where the emotional side of pain comes in and squeezes those muscles even tighter. It is important to address the emotional as well as the physical side.

parbie, you are doing a great job, rest well and pamper yourself other than the cardio, the breathing and exercises.

Also, someone on the forum mentioned a winged scapula improving with the right physical therapy. ( It may have been someone who saw Dr. Thompson's physical therapist in St. Louis.)

Did Sander's or Annest say what to do with the finding of the extra phrenic nerve? Also, does Susan do any rib work, like rib mobilizing manually?

Thanks for sharing your experience. Good luck with everything. Keep in touch.

I have bilateral neurogenic TOS. I've been disabled on social security for almost a year (after fighting for four years).

I wanted surgery in Denver with Sanders & Annest. They first said they would operate but their office was horrible to deal with. They couldn't get the paperwork right for NYS Workers Comp. Then when I got Medicare they did a 180 and said they would not operate because I had the condition so long, and because Dr. Annest didn't want to mess with "his" 85% success rate (in so many words).

I am turned off to surgery now. I, like you, have researched doctors all over the country.

I do, however, want to get the pec release. Can Brantigan do this?

Has the person who got surgery with Annest gotten better? I find the stated recovery time by a lot of the doctors in your post pathetically quick. Most of the people I know have a 2 year recovery time. Please post again because I am desperate to know how you are doing and how your recovery progressed. At this point I dont' trust any of the doctors and am scared to take the jump myself. I am bad, but I could be worse.

Parbie: i am also anxious to know how you are doing. Please Post!

Chimarin: I think Dr. Thompson in St. Louis also does the pec minor surgery, but not many do- it would have to be determined whether you need that or not. i have pec minor compression too , but am reliving it with pt and exercises.

Parbie is just settling in Canada and it has been a difficult journey for her! Fresh from surgery and trying to find a therapist there, she will post soon she has promised.

Chimarin, I too had tight pect minor issues and have almost all resolved with Pect Minor mobilizing by PT and some self massage exercises taught by PT. Has to be a good PT who knows TOS well.

Hi Chimarin,

Please see below as I have given a detailed description of my recovery and no it is not short and yes doctors do say it's quicker than it really is.

Brantigan I do believe can do the pec release as he also studied under Sanders but the only way to be sure is to call his office, and he WILL get back to you.

I am shocked about Annest! He and his office staff have been nothing but wonderful to me since the day I called him from NY to last week when I spoke with him over the phone to update him and get some advice. I am not sure if they are treating you this way because of the Medicare but to say they don't want to mess with his success rate is so out of line, I honestly do not know what to say about their treatment toward you! But one thing I can say though about "having it so long", that is true for any doctor. I have read many many articles and done my research before surgery, and one factor in having successful neurogenic TOS surgery is how long you have had it. It definitely has been shown to impact the success of the surgery. I am no doctor and my memory has not been doing me well since surgery, but just try not to take that comment too personally. I only had TOS for 1 year and 2 months and I am still very unsure if the surgery helped and I am not going to base it off my 8 weeks post op although its a long time, many doctors and research on this forum has indicated it takes 6 months to a year at least to really know if the surgery "worked" per say, or if you improved at all from it. So although I have definitely had a tough recovery, I am sure many people have after such major surgeries and am not ready to give up and say it didn't work for me.

I would recommend calling Brantigan for sure and see what he thinks about your case. Also, what are your symptoms and how "bad" are you?? Also, I am sorry to hear you are having such a hard time with this, but you have come to the right place, this forum is so very helpful and you have people who really understand TOS and have experience, both surgical and non-surgical. Let me know if you have any more questions after reading below and I will be happy to answer them. Good luck!


Stos2, I couldn't have put it in better words, difficult journey for sure! I don't just mean moving to Canada for recovery but the recovery process itself in general. You read and you prepare and you think you are ready for surgery and the recovery but you don't really realize how tough it is until you are actually going through it. But that's not true for everyone, I guess some people recover sooner and have more support, etc. JKL, thanks for the concern and your advice throughout this whole thing as well.

Anyway, First off, want to apologize for not being around, especially since this forum has been the SINGLE most helpful and supportive thing since I began my whole TOS journey. I have been going through a lot, first in Cali, now here and I think some or at least one of my medications as well as the whole shock of major surgery (on my tiny body) has really impacted me emotionally as well. I have had a really hard time dealing with it mainly because those around me who I expected to "support or assist" me through this have had a very difficult time understanding what I am going through. I don't even expect them to, but again it has been hard but things are now starting to look up so that's a good sign. Dr Annest however, is recommending Cymbalta for my feeling that I am unable to control my emotions as well as for the pain. I am still deciding as I am in the mental health field and have always been against meds like this as they are addictive and difficult to get off of, similar to narcotic pain meds but even worse, depending on the specific med though.

My flights, had 1 stop, from SF to TO really really pushed me back. I believe in my last post I mentioned after seeing Susan only twice, I had improved within 4 days. I was so excited about that. Then I flew, and even with ice, pillows, towels, walking up and down the aisle, did not help I was ready to cry as that is the amount of pain I was in (and yes I was on all my meds too).

Since I've been here, I am now 8 weeks post op, I have had a very difficult time with managing my pain, and improving whatsoever. Until about 2 days ago, I felt some improvement and now I have some hope, finally, that I will get better, just need to be more patient, stick it out, and give it time. Before then, I was still feeling a LOT of pain in my occipital lobes area and my neck especially the back and right side, also my winged scapula isn't helping as my right shoulder blade is also causing lots of pain, still have shoulder pain at the front, also pain at my clavicle and def still have tight and sore pecs on both sides, and still getting pain shooting down to my fingers and occasional tingling. I thought the numbness was gone but have recently discovered it has not. Some of this is still there of course but I feel some improvement and will work hard to continue to ensure I improve as I have started to freak out that I am still feeling all these symptoms 8 weeks post op.

The TO PT I found was decent but not great. He definitely understood TOS but I realized after my 4 sessions that he is going through his own personal issues and always seemed anxious and stressed, which did not make me feel any better. He also just simply said I should stick to what Susan said and did not have much more advice to give, and during all of our sessions I usually felt more pain than better afterward. In addition, during our last session, this past Monday, he said he has to move clinics and basically I need to find a new therapist. This was something he told me AFTER I explained my lengthy phone convo with Annest and mentioned things he might need to back off on, like manual therapy on my pec minor and scalenes as I was clearly still very sensitive. Annest suggested he work on my shoulder and neck as I was/am having significant pain there as well too. Also, in the beginning, my pt had agreed to follow the Denver and Edgelow protocols, but I felt as if he did not even go through them properly as he was doing only what he thought best and when I mentioned I wanted him to follow them more closely, he was not happy.

Anyway, so now I am working to find a new qualified PT. I think I have found 2 nearby who are manually certified and familiar with pre surgical TOS but not post surgical but I think I will give it a shot as I have very few options here. They are also decent with their fees, given I have no PT coverage here at all so it is getting very expensive. Wow, I can go on for ages as it has been so long, but to sum up, now I am still continuing Susan's instructions and also doing some of my own aquatherapy (another one of Annest's suggestion) and since I began that, doing nerve glides and neck and shoulder movements in a hot tub, I have started to feel better. One thing I really need to work on now is, taking breaks! I push myself too hard sometimes as I am stressed with a lot of major things to deal with, job related, finances, insurance, visa related (I am Canadian, and my US work visa is ending) so all of this cannot be good for my recovery. And as always, any advice or suggestions on any additional things I could try would be very helpful and much appreciated! Oh and I was also trying to decide whether I was going to do the left side now or wait, and have definitely thought long and hard and feel I should wait it out until my right side is a lot better and am more hopeful now that it will be eventually! Ok this was way too much typing and I can never do this again, feeling sharp pains in my forearm . Anyway, happy to be back on here, will def be on more regularly now!

Wow so sorry this has been so hard. You are in Toronto right? I have a good friend who is in the pharmacological field who lives there. She used to be in home health. I will e-mail her and ask her if she knows any good pt's there. Do you still have the same e-mail address? is that the best way to communicate with you?

Yes, I am in Toronto, and yes same e-mail address, you can contact me through there. Thanks so much!

Parbie,

I am so sorry you have had to go through so much. What is commendable is that I feel a very positive tone in your whole post here inspite of all the difficulties you have gone through. Moving is no small matter, specially after surgery. You are a trooper!

You are right about the recovery process, it truly takes 6 months to a year to fully recover. Those nerves take the longest. Please, don't hurry into your second surgery till you are almost better on your surgery side.

Keep up the positive attitude, and wish for a really good therapist from your heart and it will happen. Please email us or post on the forum,when you need extra support. We are all always here for our fellow friends. sending you a big hug and good wishes your way.

Parbie: Geez, you've been through a lot and then some. I hope things settle down and you can move ahead on the road to recovery.

If you get a chance to check-in, I'd love to know what exercises Susan has given you. Did she do manual therapy as well on you? Did she keep to the Edgelow Protocol or have her own take on things? I gave her a call this week, but haven't heard back yet. Going to try again today.

Thank you and wish you the best.