Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-19-2015, 09:51 PM #1
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Default Partial Rib Resection vs Total Rib Resection?

Anyone have any insights, or history, of the pros and cons of Partial rib resection vs Total rib resection?

My Long, draw out fight with TOS and apathetic doctors seems to have reached another battle field.
I finally met with a vascular surgeon who agrees that there are some obvious, debilitating nerve issues and suggested rib resection. ... 2 surgeons actually.
After almost 2 years now of being put through the ringer of doctors passing me around (last doctor was Dr # 46) I made sure to have a back up surgeon scheduled in case I got passed off. They both panned out, and have different surgical approaches, and I'm having a hard time deciding which one I should go with.

(Brief history, super active climber and kayaker living on the road, also did stage work for years holding 100+lbs over my head for hours a day. Dislocated my arm in a kayaking wreck, resulting in a long thoracic nerve and brachial plexus injury and a winged scapula like a shark fin. Was unable to get it treated, dislocation became chronic resulting in nerve issues which became so debilitating I could no longer care for myself and had to leave my home, and work, to move back in with my parents and be taken care of like a house pet. I can't drive, pull things, or remain sitting for long periods of time. Most days are spent in bed. Recent shoulder surgery to correct chronic dislocation has failed to help continuing TOS disability)

Dr Sohaila Ali (In Westminster, MD) is doc #1. She's a very compassionate, and thorough doctor. She plan on a surgery of trans-axillary rib resection, only taking out a small part of the rib, and then cleaning up any scar tissue, fibrous bands, and carve out the scalenes to remove the compression.
She was actually recommended to me by her vascular technician, Ms Rikki, who spoke very highly of her and how personalized her surgeries were. Dr Ali apparently started her own practice after becoming fed up with the "Cookie cutter" approach her colleagues took to surgery. Mr Rikki did the ultrasound and dopplar testing on me, and did the Unthinkable as she altered her testing positions to include the ones I specifically said caused me the most issues. It was my 2nd dopplar, and this one found that I had significant venous compression, as well as some arterial, and of course my clavicle smashing my nerves.
Dr Ali took days after my test results to read them over, and familiarize herself with my case before deciding if she could help me. She also explained the entire surgery in great detail. She said that with the partial rib resection, I would have my arm immobilized for 2 weeks, and could probably never go back to kayaking or over head sports like climbing again because of the risk of re-injuring my nerves on the remaining pieces of my rib...

Dr Reifsnyder at Johns Hopkins is doc #2. He only had my thick stack of medical notes, negative MRI's, EMG's, etcetcetc.. and of course me writhing around trying to hold my head up, sit up straight, and breath at the same time. He said he didn't need any further testing, as far as he was concerned I'd tried everything else, and cavalierly suggested he cut the rib out and see if it helped. I spectacularly failed a few positional tests, unable to even hold my arms out straight, and he told me I should get the surgery. His plan is a Total first rib resection, saying it's import to avoid recurrence or re injury by getting every piece of the rib out. My arm won't have restricted mobility, and the stay in the hospital afterwards is a day shorter. He sees no issue in me going back to sports or climbing as long as my shoulder agrees with me

Dr Reifsnyder, however, is from one of the institutions Dr Ali criticized (privately to her tech, not to me a patient) for performing THE surgery by the book rather than a personalized approached. Dr Ali also took the time to find and document the extent of my issues, where dozens of other docs have blown me off.. However, her surgical method leaves room for the symptoms to come back, and will have a serious impact on the active, rough and tumble life I'm used to. (She said I'm a petite girl, I'm just not made for sports. I think most of central Asia may disagree). I've looked up the medical articles on the benefits of total resection over partial.. but they were all at least co-written by Dr Reifsnyder.

WHEW! Long winded.. But any ideas? Suggestions? Anyone have to go back for a round 2 of rib resections to clean up remaining pieces of ribs? Anyone actually get the full rib resection?

Thanks!
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Old 07-20-2015, 07:20 PM #2
Eddiemaverick Eddiemaverick is offline
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Can you travel? Many of us have had surgery with Dean Donahue of Mass General Hospital. If you read through this forum you will find that he is one of the most well known and respected TOS surgeons.

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Originally Posted by SnappleofDiscord View Post
Anyone have any insights, or history, of the pros and cons of Partial rib resection vs Total rib resection?

My Long, draw out fight with TOS and apathetic doctors seems to have reached another battle field.
I finally met with a vascular surgeon who agrees that there are some obvious, debilitating nerve issues and suggested rib resection. ... 2 surgeons actually.
After almost 2 years now of being put through the ringer of doctors passing me around (last doctor was Dr # 46) I made sure to have a back up surgeon scheduled in case I got passed off. They both panned out, and have different surgical approaches, and I'm having a hard time deciding which one I should go with.

(Brief history, super active climber and kayaker living on the road, also did stage work for years holding 100+lbs over my head for hours a day. Dislocated my arm in a kayaking wreck, resulting in a long thoracic nerve and brachial plexus injury and a winged scapula like a shark fin. Was unable to get it treated, dislocation became chronic resulting in nerve issues which became so debilitating I could no longer care for myself and had to leave my home, and work, to move back in with my parents and be taken care of like a house pet. I can't drive, pull things, or remain sitting for long periods of time. Most days are spent in bed. Recent shoulder surgery to correct chronic dislocation has failed to help continuing TOS disability)

Dr Sohaila Ali (In Westminster, MD) is doc #1. She's a very compassionate, and thorough doctor. She plan on a surgery of trans-axillary rib resection, only taking out a small part of the rib, and then cleaning up any scar tissue, fibrous bands, and carve out the scalenes to remove the compression.
She was actually recommended to me by her vascular technician, Ms Rikki, who spoke very highly of her and how personalized her surgeries were. Dr Ali apparently started her own practice after becoming fed up with the "Cookie cutter" approach her colleagues took to surgery. Mr Rikki did the ultrasound and dopplar testing on me, and did the Unthinkable as she altered her testing positions to include the ones I specifically said caused me the most issues. It was my 2nd dopplar, and this one found that I had significant venous compression, as well as some arterial, and of course my clavicle smashing my nerves.
Dr Ali took days after my test results to read them over, and familiarize herself with my case before deciding if she could help me. She also explained the entire surgery in great detail. She said that with the partial rib resection, I would have my arm immobilized for 2 weeks, and could probably never go back to kayaking or over head sports like climbing again because of the risk of re-injuring my nerves on the remaining pieces of my rib...

Dr Reifsnyder at Johns Hopkins is doc #2. He only had my thick stack of medical notes, negative MRI's, EMG's, etcetcetc.. and of course me writhing around trying to hold my head up, sit up straight, and breath at the same time. He said he didn't need any further testing, as far as he was concerned I'd tried everything else, and cavalierly suggested he cut the rib out and see if it helped. I spectacularly failed a few positional tests, unable to even hold my arms out straight, and he told me I should get the surgery. His plan is a Total first rib resection, saying it's import to avoid recurrence or re injury by getting every piece of the rib out. My arm won't have restricted mobility, and the stay in the hospital afterwards is a day shorter. He sees no issue in me going back to sports or climbing as long as my shoulder agrees with me

Dr Reifsnyder, however, is from one of the institutions Dr Ali criticized (privately to her tech, not to me a patient) for performing THE surgery by the book rather than a personalized approached. Dr Ali also took the time to find and document the extent of my issues, where dozens of other docs have blown me off.. However, her surgical method leaves room for the symptoms to come back, and will have a serious impact on the active, rough and tumble life I'm used to. (She said I'm a petite girl, I'm just not made for sports. I think most of central Asia may disagree). I've looked up the medical articles on the benefits of total resection over partial.. but they were all at least co-written by Dr Reifsnyder.

WHEW! Long winded.. But any ideas? Suggestions? Anyone have to go back for a round 2 of rib resections to clean up remaining pieces of ribs? Anyone actually get the full rib resection?

Thanks!
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Old 07-23-2015, 11:53 AM #3
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Default Partial vs Total Rib Resection

I agree with Eddie Maverick's advice about Dr. Donahue.

I had a partial first rib resection at Johns Hopkins (JH) and emerged worse than before surgery. There were other issues in my surgery (e.g., nerve damage) and I am not sure that all of my problems can be attributed to partial first rib resection. My JH surgeon was NOT Dr. Reifsnyder. Before surgery, I was told I was going to get a total first rib resection. JH never told me that only part of my first rib was removed and it was nearly 2 1/2 years after my surgery that I learned the truth.

All the medical literature that I am aware of recommends total first rib resection. It is true much of this literature was written by JH, but I would still be leery of a doctor that recommends partial rib resection.
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Old 07-23-2015, 11:58 AM #4
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Usually it is best to remove as much rib as possible , so no "stump" is left to rub or cause problems in the future.. rubbing/scarring inside...etc
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Old 07-23-2015, 05:17 PM #5
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I would see Dr Donahue if I were on the east coast. I hear too many good things about him. All surgeons here are recommending full rib resection. Don't know why but I do wonder in principle the use of the first rib But if best results are from full removal, so be it. I think you need to know more as to why she recommends only partial removal. Does she do full removal at all? Tel her you only want full removal and if she says she ain't done it.... Perhaps she is concerned with risks of going to deep for her skill level. I think either full removal or no removal.
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Old 07-26-2015, 08:33 PM #6
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Thanks for the replies!

I have seen Dr Donahue mentioned on this forum a lot. I am leery of traveling, since my symptoms have gotten so bad I wind up on the floor after a car ride, but I'll do whatever it takes to end this madness and get some form of normal, adult life back Hahaha.
Not the mention the all to familiar struggle on here of blowing all my dough on insurance to even be seen in the first place.

I'll def ask Dr. Ali about doing the full rib resection, and have a feeling it's her approach simply because it is an older way of doing it.

Either way, I'm becoming more and more of the mindset of Full removal is the way to go. No stump, less risk of re-injury, and severing more of my hateful scalenes.

Toslady- Yikes! I'm sorry to here that. This is definitely something I'm terrified of happening. When did you have you surgery done at JH, and do you remember who did it?
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