I know some of you have had re-do surgery recently to deal with scar tissue or problems left behind by the first surgery. How are you all doing?

I had surgery 8 years ago by Dr. James Avery in SF. It was clear pretty quickly that things weren't better. And within a few months, things were quite a bit worse. I know I have significant scar tissue on my brachial plexus. Until recently, I hadn't even considered more surgery. But, it's been 10 years of this mess and pharmacological pain management isn't helping much.

I'd appreciate hearing from anyone who has had re-do surgery.

Thanks,
Kelly

Hi. I haven't. Had a redo surgery. I hope u went back to ur surgeon when things Bc worse. My surgeon Dr D. In Boston. told me scar from surgery occurs within 3-6 mos.
He also told me he's never had reoperate on his patients but has redone other drs
patients. If u want an expert opinion he would be a good bet. I v e heard he doesn't do phone interviews. Where do u live?

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, I've never had a re-do surgery but I did consider it about 10 years ago. My original surgery was 22 years ago but about 10 years ago I had one of those MRI/MRA'S done with Dr. Werden. The interesting thing was, it showed that the blood flow was better in my surgical arm but I have much more pain in that arm.

I had an appointment with Dr. Avery and his opinion was scar tissue was causing my problem. He said he could remove it but it would probably grow back. I asked him about removing a rib and he said that from the looks of the tests he didn't think it was a problem. Dr. Stoney was the one who did my original surgery(scalenectomy) and Dr. Avery thought he made the right call by just removing the scalenes. After all that, I just decided to leave things be.

Kelly what is ur surgeon recommending u do now? What did u have removed? Maybe the area wasn't fully decompressed. U should get another TOS expert opinion from a separate hospital /affiliation. Dr Jordan supposed to be good w dx & treating tos. I believe hes in west LA. U probably have seen him in this forum.
Good Luck!

Hi there
I was just wondering if u hadxa 3d Ct scan bf ur surgery probably not its a fairly new test at mgh in Boston. I had brachial plexus mri. & mra. also ultrasound & nothing showed my extra rib & narrowing of the arteries tip I had 3d CT scan. I recommend u try to find someone who does this test (tos specialist) bf u give up on surgery. My thoracic surgeon does it and I think a vascular & neurosurgeon here at mgh also.

I had a 3D MRI/MRA performed by Dr. James Collins (UCLA) before surgery. The TOS diagnosis was also confirmed by Dr. Louis Messina at UCSF. After surgery I had an MRI of my brachial plexus by Dr. Scott Werden (his area of specialization) which showed scar tissue on my brachial plexus on the surgical side (I had rib resection and scalenectomy).

I no longer see Dr. Avery. I haven't seen him for 7 years or so. He said he wasn't "washing his hands of me" but it certainly felt like he was.

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

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.

I have gone to a massage therapist several times. I went to deep tissue myofascial massage for about 6 months, once a week. Unfortunately, the MT was not able to do much as my nervous system behaved as though it were under assault. I wish I were able to tolerate massage but I don't seem to be able to.

What massage therapist do you see? Maybe I'll give it a try again.

Take care,
Kelly