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


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Old 10-03-2018, 01:47 PM #1
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Wink TOS surgery OUTCOME DR Gelabert UCLA

Hi,

I thought I should post something on this thread since I was a patient that just view it and never posted anything like most people on here.

I'm 23 year old bodybuilder in college and got NTOS bilateral. My first symptoms were both of my elbows hurt and arms. I had double crush syndrome in my neck and elbows from TOS. First I saw PT and Chiro and they did soft tissue work to remove the impingement in my elbows, but my neck and arm pain remained. I saw many doctors and therapist almost 30 before I thought about surgery. The therapies I tired before was ART, Gradston, Neuro musclar therapy (steve murphy newport beach), rolfing, egoscue, Chiro, acupuncture, PT, and working on my posture at home. These help a little but the pain remained.

I then saw Dr Mikhael Medhat F MD to preform the bilateral brachial plexus injections in my neck. The results were it decreased the pain significantly in the front of of my neck not the arms for maybe 3-4 days. Then the pain came back. After a positive brachial plexus injection I decided in my heart to go see Dr Gelatbert in UCLA about the first rib removal. Basically he told me 70 percent of patents get better 29 no results and less than one percent get worse. Since I was young healthy motivated person I thought I would recover fast and improve. I did the surgery 8/25/16 at UCLA with all the medications they gave me I wasn't in much pain after the surgery. I have a high pain tolerence.

My surgery failed...... Caused me more pain in the front of my neck and and arm pain than before and more than the non surgical side. I'm posting this because I want everyone to know that the Doctors statistics they give you at the office aren't necessary correct. I feel like I don't fall in the less than one percent category and there are many postings on here saying there surgery failed.

Do I regret having the surgery..... No, because I couldn't live without trying everything possible to cure my NTOS. If you feel like you must try it I would say go for it.

I never got to try botox bc my insurance declined and my doctor when per to per and lost. This took about 8 months to do. I come from a family that has many MD's and they warned me before doing the surgery.

What helped me out the most you might ask???

1. Working on your posture with these videos
a. posture pump helped me out somewhat this stupid thing kinda worked Posture Pump(R) Cervical Disc Hydrator(R) (Model 1) Instructional Video - YouTube
b. massage
c. str upper back

How do I manage my pain now????

1. Medication 1800 mg gaba, 25 mg nortriptyline and noninflammatory

What's the best advise I can give you???

1. Never give up
2.Try all alternative approaches before you get surgery

What's my plan for the future???

1. I'm so tired of doctors and procedures. I just going to stay on medication and hope for a cure in the future for NTOS.


I hope this was somewhat informative for you guys, and I wish you to have a pain free life.


I've posted my rib picture below from my surgery just in case you were curious. I wish I could find the pre surgical paper that Dr Gelatbert gave me so I can post that also. If I find it I will.

Good luck,
Michael
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TOS surgery OUTCOME DR Gelabert UCLA-63ad74840-01aa-4ba6-b59f-9728fcd08dd0-2-jpg 

Last edited by micaheldorseyNTOS; 10-03-2018 at 03:21 PM.
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Old 10-12-2018, 04:02 PM #2
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If you have any suggestions or ideas on what I should do can you please post them below. I feel I have tried everything for my NTOS.
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Old 10-17-2018, 07:26 PM #3
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Did they remove the scalenes along with the first rib?

I'm sorry your surgery failed. That's rough. I've found massage and back strengthening has given me best results, though I'm still a work in progress and have only had this a few months, so I can't speak to the long term results of them.
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Old 10-18-2018, 12:06 AM #4
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yea first rib and they cut my scalenes away from the rib they are still attached to the spine cervical part just 2 of them.
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Old 10-28-2018, 12:43 PM #5
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Thank you for sharing your story; I could not agree with you more. Gelabert is an excellent surgeon, don't get me wrong. But keep in mind, those success stats include vascular TOS cases....not just the far more treatment-resistant neurogenic cases like yours and mine. That automatically inflates them, you could say. Hotshots like Donahue, Freischlag, Gelabert, etc. not only screen surgical candidates very carefully but define "success" differently than a TOS post op patient probably might - it's always a good idea to ask, imho. How many vascular versus nTOS cases are in the mix, of the nTOSers what's the dx timeliness, post op tracking, pain measure/weight, average age or physical condition prior, how would you know the percentage of surgical patients who seek re ops from a different TOS surgeon under a separate healthcare system,
etc. Break it down, foxy, iow.

Mark Twain was quite fond of this quote, probably from the mid-1880s although its original authorship is in dispute (no, it was not the dead prime minister): there are three kinds of lies - lies, damned lies, and statistics. (OK, the Oxford comma points towards Disraeli but it's just a tease ...)

I happen to have a severely progressed case of what used to be called "true" nTOS (bilateral, for extra fun), replete with Gilliat-Sumner hand on the left. Just luck, I guess; don't even have a good story to go along with it. Damnit. But despite the fact that every. single. EMG. from jump was positive (!) and the hand atrophy obvious....still it took over 25 years for some of the best doctors in Los Angeles to diagnose me accurately. I know now this was because I fell victim to the ugly debates in the sixties and seventies between the late Dr. Wilbourne of the Cleveland Clinic and Dr. David Roos of Denver (grandfather of the transaxillary surgical approach for TOS) as to the "validity" of nTOS as a valid diagnosis and surgery as a viable tx. According to Wilbourne, unless you had (i) a cervical rib; (ii) unilateral symptoms; (iii) a positive EMG; and/or (iv) visible hand atrophy, you had "disputed" nTOS, which meant that either you were a big fat faker or your TOS surgeon (namely, Roos) was bilking the system. Lovely, lovely stuff. This is why to this day, many neurologists and workers comp systems alike refuse to accept nTOS diagnoses or claims. Vestiges.

By the time I walked into Sam Ahn's office (Sam trained Hugh) I was fully cooked. But to try to save what was left of my hand, I proceeded to jump up on the table anyway. Dr. Ahn was at least honest about the pain probably not going anywhere but was fairly certain he could keep the hand from getting worse. You pays your money and you takes your chances.

But I will never know, if I'd had a timely diagnosis, whether TOS surgery might've given me a shot against severe intractable nonterminal pain. It's a life sentence for some of us. And let me just say, it does nothing for the disposition ... (Those who know me can attest.)

Please, if you have nTOS and it's diagnosed reasonably early, hear Michael's story or try to remain open at least to the idea of exploring every non- or less invasive treatment option available to you before considering TOS surgery. Any surgeon worth his or her salt will encourage you to do this, and also to seek second opinions. Also, post op care (esp self care, which is both good news and bad news) is monumentally important and healing can take over 18 months, as nerves heal very slowly. Technically, syndromes are not 'curable', so maintenance becomes the goal. You get to define what that looks like.

To paraphrase Pogo, we have met the enemy and he is scar matter. That is the reason a lot of us need re ops. Subclavian city approacheth, when that happens; what Dr. Illig calls a "recurrent TOSer" (has he landed in the Carolinas yet btw, anyone know?).


Quote:
Originally Posted by micaheldorseyNTOS View Post
Hi,

I thought I should post something on this thread since I was a patient that just view it and never posted anything like most people on here.

I'm 23 year old bodybuilder in college and got NTOS bilateral. My first symptoms were both of my elbows hurt and arms. I had double crush syndrome in my neck and elbows from TOS. First I saw PT and Chiro and they did soft tissue work to remove the impingement in my elbows, but my neck and arm pain remained. I saw many doctors and therapist almost 30 before I thought about surgery. The therapies I tired before was ART, Gradston, Neuro musclar therapy (steve murphy newport beach), rolfing, egoscue, Chiro, acupuncture, PT, and working on my posture at home. These help a little but the pain remained.

I then saw Dr Mikhael Medhat F MD to preform the bilateral brachial plexus injections in my neck. The results were it decreased the pain significantly in the front of of my neck not the arms for maybe 3-4 days. Then the pain came back. After a positive brachial plexus injection I decided in my heart to go see Dr Gelatbert in UCLA about the first rib removal. Basically he told me 70 percent of patents get better 29 no results and less than one percent get worse. Since I was young healthy motivated person I thought I would recover fast and improve. I did the surgery 8/25/16 at UCLA with all the medications they gave me I wasn't in much pain after the surgery. I have a high pain tolerence.

My surgery failed...... Caused me more pain in the front of my neck and and arm pain than before and more than the non surgical side. I'm posting this because I want everyone to know that the Doctors statistics they give you at the office aren't necessary correct. I feel like I don't fall in the less than one percent category and there are many postings on here saying there surgery failed.

Do I regret having the surgery..... No, because I couldn't live without trying everything possible to cure my NTOS. If you feel like you must try it I would say go for it.

I never got to try botox bc my insurance declined and my doctor when per to per and lost. This took about 8 months to do. I come from a family that has many MD's and they warned me before doing the surgery.

What helped me out the most you might ask???

1. Working on your posture with these videos
a. posture pump helped me out somewhat this stupid thing kinda worked Posture Pump(R) Cervical Disc Hydrator(R) (Model 1) Instructional Video - YouTube
b. massage
c. str upper back

How do I manage my pain now????

1. Medication 1800 mg gaba, 25 mg nortriptyline and noninflammatory

What's the best advise I can give you???

1. Never give up
2.Try all alternative approaches before you get surgery

What's my plan for the future???

1. I'm so tired of doctors and procedures. I just going to stay on medication and hope for a cure in the future for NTOS.


I hope this was somewhat informative for you guys, and I wish you to have a pain free life.


I've posted my rib picture below from my surgery just in case you were curious. I wish I could find the pre surgical paper that Dr Gelatbert gave me so I can post that also. If I find it I will.

Good luck,
Michael
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Old 10-28-2018, 01:15 PM #6
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I don't think the anterior or middle scalene muscle attaches to the spine, Michael....so the hope is that once resected away from that first thoracic rib, they will both simply atrophy up the cervical spine without causing any further problems for you. Gelabert probably explained that what can sometimes happen instead, is that one or the other finds a way to reattach itself by way of scar matter to another soft structure within the outlet or to the pleura or some other fun place where the popular kids hang. If yours is the type of body that forms a lot of scar tissue (I'm genetically gifted in that way, myself) you may be more prone to this and it's good to be aware of in your post op recovery and rehab phases so that your PT, OT, bodyworker, etc. can help you to prevent or discourage it from forming (Sharon Butler has a good kit out right now <+/- $40.>, her website and book/s have some interesting stuff about fascia and TOS if you're interested). I'm hoping of course you won't need a re op....personally (and assuming you're not lifting weights or at least are backed way off from before and are gradually trying to get to where you can start to strength-train again - PT has to be done with a TOS protocol, as I'm sure you know) when and if you're ready for a surgical opinion I'd probably see Donahue, Illig, Pearl or Thompson as well as one of the "UC" people (Gelabert, Freischlag, Humphries, or the 2 at Johns Hopkins in Baltimore), simply to get a genuine different perspective. I don't pretend to know where you're at with things, just sorry to hear you're still suffering and I sure know what that's like. Believe you me.

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yea first rib and they cut my scalenes away from the rib they are still attached to the spine cervical part just 2 of them.
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Old 10-29-2018, 01:21 PM #7
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Scalene's attach indirectly to C spine ..
The Scalene Muscles - Attachments - Action - Innervation - TeachMeAnatomy
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Old 10-29-2018, 07:19 PM #8
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I'm really not sure on what to do at this point. Gelabert offered me another surgery to remove the rest of my scalences by cutting me open in the front of my neck, but if my first surgery made me worse then why should I get another one. Really doesn't make any sense to me...

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Old 10-29-2018, 07:21 PM #9
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Quote:
Originally Posted by micaheldorseyNTOS View Post
I'm really not sure on what to do at this point. Gelabert offered me another surgery to remove the rest of my scalence by cutting me open in the front of my neck, but if my first surgery made me worse then why should I get another one. Really doesn't make any sense to me...

I was a predental bio major in undergrad and I'm thinking about going to PT school next year and I was already accepted into chiro school. I can no longer pursue dentistry with this monster.

The statistics I gave you where from Ntos only from Gelabert not vascular he has a separate pre surgical sheet for each type of TOS.
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Old 11-16-2018, 10:00 AM #10
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So Gelabert keeps track separately of his neurogenic surgical TOS cases from his vascular surgical TOS cases (venous and arterial); am I understanding you correctly, Michael? Because he does plenty of both kinds of cases, and in a lot of cases - especially re ops I would imagine - his cases have become neurovascular (if they weren't before); that is certainly true in my case.

One of the biggest reasons people end up needing a re op is that the body has built up scar matter, and likely rather than simply atrophying up the cervical spine as is hoped, one (or both) of the resectioned scalene muscles has reattached itself via scar tissue to other soft structures within the outlet, such as the neurovascular bundle, the phrenic nerve, the LTN or the pleura....and this is what may be causing the recurrent TOS symptoms. If you're blessed with a body that tends to form a lot of scar tissue, that's what you may be looking at (join the club), some people get off light....some of us, not so much.

So a re op consists of not only a complete scalenectomy, but removal of all that scar matter....which can involve lysis of the blood vessels as well as neurolysis of the nerves involved. Dr. Gelabert does not like to 'scrape' too closely, either during the initial rib removal/partial scalenectomy or any subsequent re op, in order to avoid the risk of damaging these vital structures. Because Dr. Gelabert orders scalene blocks performed with ultrasound plus EMG, both visual and aural guidance might help to determine what soft structures are being compromised in your case....for that matter, someone like Gelabert can also read a great deal just from your symptoms themselves. But as a scientist he'll want the diagnostics if you ever do decide to explore things further.


If you decide to explore a TOS re op at some point, Michael, it's naturally a good idea to get as many second opinions as you need to feel comfortable with whatever decision you reach. Dr. Donahue at MGH in Boston, Dr. Pearl at Baylor in Dallas, Dr. Thompson at Washington U in St. Louis, etc. are all nationally recognized, very experienced TOS surgeons who've performed hundreds of re ops. And of naturally, Dr. Sam Ahn in Westwood right down the street from Gelabert would be a good source for a second opinion, as well (he and Gelabert are likely to echo one another, of course <only Ahn will order an angioplasty instead of a scalene block....which could give you some new info>).

Re ops are challenging....the only surgical approach that makes sense is supraclavicular. If scar matter is indeed the culprit, the surgical field can become very cloudy; it can also cause the nerves (for example) to drift towards the spine, so that things aren't anatomically where you would normally expect them to be located. Why you need a top doc to perform the re op if you do decide to go forward at some point. You can also ask for the contact info for a couple of surgical patients who've been through the same procedure, so that they can share their experience with you, Michael. As long as the patients are willing, there's no HIPPA violation in the TOS surgeon facilitating that for you. S/he's not bloody likely to give you anything but favorable outcomes, mind you, but still....could give you a different perspective on things and some valuable info.

In the meantime, please tell me you're not still lifting weights....or at least, that you've backed way off from what you were lifting before. I know it sucks. But unfortunately and as I'm sure Dr. Gelabert told you, weightlifting can contribute to if not cause the aggravation of your symptoms.

Wishing you the best.

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Originally Posted by micaheldorseyNTOS View Post
The statistics I gave you where from Ntos only from Gelabert not vascular he has a separate pre surgical sheet for each type of TOS.

Last edited by Sea Pines 50; 11-16-2018 at 10:14 AM. Reason: preservation of world order
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