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Old 08-10-2013, 10:42 AM #11
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Parbie and Nospam, how are you following your surgeries?

Nospam, I know you have your hands full with a new baby, but how is your recovery going?

You are probably both rightly focused on your recoveries, and not posting here, but I'm curious to hear.

Thanks,
Kelly
My TOS symptoms seem to be resolved aside from some occassional sensations of cold along the ulnar distribution when I don't take my Neurontin. My hand and arm stregnth is finally back to normal.

I'm still having bad, constant headaches but it is believed to be my C4-C5 disc causing the remaining issue (adjacent disc disorder from my previous fusion).

I'm sure the sleep deprivation from having a newborn isn't helping my situation.
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Old 08-15-2013, 02:20 PM #12
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Marc,

I'm happy to hear you are feeling better. I hope the headaches resolve soon.

Take care,
Kelly
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Old 08-20-2013, 12:40 AM #13
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Yes, I did go back to my surgeon for periodic check ins for a year after the surgery. He did not offer any suggestions for how to relieve my symptoms. He concluded that they stemmed from scar tissue.

I am in the San Francisco Bay Area, California.
Hi Kelly,

My previous surgeon did pretty much the same thing. As you know, I recently had a redo surgery and I do not have any regrets. I highly suggest you get in touch with Dr. D, and he actually does do phone consults, he did 2 with me prior to my visit with him, he just won't conclude if you are a surgical candidate without seeing you first, which makes sense. Also, please read my thread for my recent update on how I am doing 1 month post op Please feel free to ask any questions!
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-6/20/14 Seroma Drainage Right Side

-7/18/13 Re-do of Right sided Supraclavicular Thoracic Outlet Decompression by Resection of Cervical Rib, First Rib, and Neurolysis

-8/30/12 Unsuccessful Right sided Supraclavicular Thoracic Outlet Decompression via Scalenectomy, Brachial Plexus and C2 through T1 Neurolysis, Resection of fibrous band attachment to Cervical Rib and Pectoralis Minor Tenetomy
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Old 08-21-2013, 12:39 AM #14
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Hi KellySF,

Sorry I have not been on the forum as I have been going thru some personal issues. I remember you as one of the first people to welcome me on the forum.
Have you been to a good CFMT for scar tissue issues? worth trying it out as it has worked for me. I had only had a scalenectomy and after 8 months of being good after surgery in feb 2010, scar tissue developed and all the previous sx returned. I almost had a redo ( with rib removal) last August, but I am over with the TOS issues now with myofascial release and mobilization of scar tissue and some good exercises. It took about a year for me to get back, but it was worth it. Redo can always be the last resort, as I do believe in surgery when necessary. I am also off Gabapentin ( Neurontin) now.

Infact it was people on this forum that told me to try myofascial release and give it try. I postponed my redo surgery 3 times and eventually cancelled it as I didn't need it. I am so glad I listened to the people on this forum, they have been my Angels in guiding me.
I am in the SF Bay Area as well.
Hi stos2., can u tell me what CFMT stands for? I'm. disappointed in PT 's. My hip surgeon ordered pt w/myofascial release for 6wks., due to havingbuttock pain &spasm after surgery. The pt did did what he called myofascial release for 2mins. on one visit only out of the whole 6 wks. All he cared about was giving me more ex. to do. I'm not to keen on pt 's anymore.
Where do u look for someone with these credentials, the phonebook?
Appreciate any info.
Thanks Rhonda
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Old 08-21-2013, 07:54 PM #15
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Hi stos2., can u tell me what CFMT stands for? I'm. disappointed in PT 's. My hip surgeon ordered pt w/myofascial release for 6wks., due to havingbuttock pain &spasm after surgery. The pt did did what he called myofascial release for 2mins. on one visit only out of the whole 6 wks. All he cared about was giving me more ex. to do. I'm not to keen on pt 's anymore.
Where do u look for someone with these credentials, the phonebook?
Appreciate any info.
Thanks Rhonda
Hi Rhonda, stos2 isnt on here much, but I know what she is referring too. Certified Functional Manual Therapist . Dr Ando in SoCAl is one and stos went to him as well as myself,nospam and some others on here. This is the best list for CFMT's http://www.instituteofphysicalart.com/ipa/referral/list has referrals for all over on it-some may be old-but it means they received the same training that Dr. Ando did and may know about TOS. Where are you located? I have done alot of research so have many resources archived.Good Luck, JKL
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Old 08-24-2013, 01:51 PM #16
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I had a phone consult with Dr. Sanders 2 months ago. He's working with my surgeon Dr. Annest in Denver consulting on TOS (but not doing the actual surgeries). He said I sounded like a candidate for a cleanup surgery. So, I have an appointment mid-September to have a face-to-face consult with him to confirm wether a cleanup procedure would help me with the pain, spasms and breathing issues when I have a flare-up.

I really dread having another surgery and will do what it takes if one can be prevented. But if it really will help me, I will schedule it to happen in a few months. I have to line up care for myself and my Mom first!

I would have had this consult sooner, but had a family emergency.

Will keep you all posted,
Anne
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Old 08-24-2013, 02:07 PM #17
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I had a phone consult with Dr. Sanders 2 months ago. He's working with my surgeon Dr. Annest in Denver consulting on TOS (but not doing the actual surgeries). He said I sounded like a candidate for a cleanup surgery. So, I have an appointment mid-September to have a face-to-face consult with him to confirm wether a cleanup procedure would help me with the pain, spasms and breathing issues when I have a flare-up.

I really dread having another surgery and will do what it takes if one can be prevented. But if it really will help me, I will schedule it to happen in a few months. I have to line up care for myself and my Mom first!

I would have had this consult sooner, but had a family emergency.

Will keep you all posted,
Anne
Why choose Annest over Donahue, Pearl, Thompson, or Brantigan? I did a lot of research and I chose to avoid Annest. Have you read Parbie's thread? Don't go solely by the phone consult.
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Old 08-25-2013, 04:20 PM #18
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Why choose Annest over Donahue, Pearl, Thompson, or Brantigan? I did a lot of research and I chose to avoid Annest. Have you read Parbie's thread? Don't go solely by the phone consult.
Haha... thanks for your concern marc, but "this ain't my first rodeo". Meant with all respect of course!!

We could discuss how things were in '04 between all the Dr's you mention (when I was having my cervie+1st rib resections w/Annest), or we could discuss what people say now... but the Mods don't allow this kind of talk on the threads out of professional courtesy. Do feel free to PM me and I will tell you what I have actually experienced - not guessing or listening to others.

Dr Annest and his Associates are top notch. I recommend his office to anyone who wants the most experience. His staff is super-helpful. If anyone wants more detail please PM me and you can decide for yourselves.

Best,
Anne
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Last edited by astern; 08-25-2013 at 04:46 PM.
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Old 08-28-2013, 03:34 AM #19
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I too am going for a consult with Dr. Sanders mid-September. I was diagnosed last November with a blood clot in my right arm. I just underwent my right rib resection August 8th at the University of Utah. Contrast MRIs showed full vein occlusion bilaterally, but the U of U will not do a rib resection on my left side until I receive a blood clot on that side. Dr. Sanders and his associates have outstanding reviews and agree that proactive is better than reactive. In the long run the reviews don't matter, it's how comfortable you are with your surgeon and his/her answers to all your questions.
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Old 10-12-2015, 08:20 PM #20
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Kelly,

I had redo surgery on Aug. 13, 2015 with Dr. Donahue of Massachusetts General. Years ago I had "surgery" with another doctor at another institution.

Like you, I emerged from my original surgery in worse shape than before my surgery. In addition, I was in severe pain after surgery.

Although it is too early for me to consider the redo surgery a success, I am cautiously optimistic. I am slowly but surely improving. I have not experienced much pain from my redo. My flight back from Boston was much less painful than my flight to Boston. Occasionally I overdo my physical activities and have painful episodes.

In my opinion, redo surgery is riskier than original surgery and many surgeons are reluctant to do redo surgeries, particularly if the original surgery was by another surgeon. However, if you select a competent, skilled surgeon (like Dr. Donahue), I believe you have a reasonable chance for a successful redo surgery.

Good luck to you in whatever you decide to do.
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