Longtime lurker ready to report
 

I've lurked this site (and BT) for several months now gleaning information. It seems only fair to check in and report what I've learned/done to share the knowledge. As background, my husband was diagnosed with TOS and had his initial surgery 3 years ago where a rib was removed and the scalene was partially removed. It worked for a few months and the pain returned. A second surgery was performed and the surgeon removed more of the scalene. Again, in a few months the pain returned and over the next two years the pain progressively increased. The surgeon at this point, as I'm sure many of you have learned, threw up his hands. The return phone calls came further and further apart. Several referrals were made that resulted in nothing other than more time lapsed. An MRI was ordered by a neurosurgeon that showed the brachial plexus was an "amorphous mass of scarring and tissue" brought about by the two surgeries. That doc, incidentally, was an ***, but that's besides the point. Around this time I decided to get involved and found the BrainTalk community. I read hundreds of posts and learned that Denver is the mecca for TOS. And further reading pin-pointed Brantigan, Sanders, and Annest as the docs to see. I made appts. with Sanders and Brantigan and down we flew in August. After our initial appt with Dr. Brantigan, he ordered a spiral CT scan which clearly, clearly showed the problem. The rib was growing back. Evidently the surgeon had not removed the periosteum when he removed the rib (look up the meaning in wikipedia if you don't know what it is) and the rib was regrowing. My husband and I both cried when we saw the CT because there was finally an definitive cause for his pain. (As many of you know, when docs stop returning your calls and have no idea why you're not better, you begin to feel crazy) Anyway, we're flying back down to Denver on Dec 17 for surgery, and we'll stay for 2 weeks to take advantage of the incredible physical therapy they have in Denver.

So we don't know what the outcome will be, although Dr. Brantigan's immediate recognition of the symptoms and quick diagnosis is encouraging. He'll go in through the armpit this time to minimize further scarring, to remove the bone that is growing right smack in the middle of the bracial plexus. And also, Dr. Brantigan had his specialist re-interpret the MRI with the scarring diagnosis, and this doctor said the scarring was consistent with two surgeries, nothing abnormal.

So there's my story.

As a P.S., my husband made an appt with this surgeon when we got back home to tell him the problem and apparently Dr. Brantigan had already had a "talking to" with him. He probably won't make this mistake again.

And finally, if you go to Dr. B's web site http://drbrantigan.com/physician/multidetector.htm - you can see what the rib looks like when it begins to grow back. I believe it's the second picture on the page.

Okay, okay, this is really my final comment - the spiral CT is such a great tool for diagnosing that area, as I said even I could see the rib growing, why isn't it used more often?

Thank you all for your collective wisdom and I'll keep you posted on the surgical outcome.

Hi Erin ,
nice to meet you.

Best of luck with your husbands upcoming surgery.

I'm glad you found the info so you could find one of the top guys to get your husband evaluated by. Seems like the Denver guys are the way to go if a redo is needed.
If only more docs would study on it, before doing a surgery.

I remember reading that no partial stump can be left - just for that reason.

How did your husband get TOS?

hi and Welcome to our world.....
 

Hi Erin Welcome to our world!

Glad you found us and our information. There is a lot of great help here and on the BT sites. I hope your husband does well with his surgery. I too had a rib resection with six months of pain free life and now my pain is all back when I had my physio. I hope I can get pain free again as I hope and pray your husband does as well. I can certainly appreciate your plight and your journey through this hell called TOS. I hope you can get what you need from the right doctors.

Take care and welcome again,
Victoria rn

Hi,

I am a long time post surgery patient of Doc Brantigan's. I had my surgery almost 8 years ago and have been doing fantastic! I had all 3 types of TOS and very bad too. The advances in medicine since then can have only gotten better! I recently had a check up & had one of the 3D CT's that he and a radiologist is working on developing for TOS both for the CT and MRI and they are fantastic for finding these things!

I am so happy that you found him and decided to go with him. His thirst for knowledge, wisdom to do what he feels is best for the patient, and his love for surgery and medicine makes him one of the TOP vascular docs in the Nation, he got another national award for 2006. One of many.

He will let the patient know if they have TOS or not and try to get them to whom ever they need to see to feel better. I know one patient who had some sort of brain thing, can't remember what it was, but it was so bad and critical that he sent her to NY to have surgery immediately and saved her life. All this time she was convinced she had TOS because of certain people on the old forum.

The person whose films is on his web site went back to college, got a teaching degree and is now teaching. So there is a huge amount of hope for anyone that has surgery by him.

I think your choice of lurking and gleaming REAL facts has paid off for you and your husband! You could not have made a better choice!!

Take it from me, life is great almost 8 yrs post op!!!!

You are in the best of skilled hands and a kind and caring man, (and a very funny sense of humor, albeit a bit dry, but still very funny.) :D Do not hesitate to joke with him!

Take care and your husband will do well!!

reply to jo55
 

My husband got TOS from a sports injury. As I understand it, anatomically he was TOS waiting to happen. He's about 5'11", but most of his height is in his legs. A short torso with not much room to fit everything in, so it was not a surprise that some things overlapped and aggravated other things. Which doesn't exactly bode well for the uninjured right side, but we're not going there!!!

Erin, I was diagnosed with TOS July of 05... the Dr who did this DX Dr. Togut hung up his scalpel several years ago, but he recomended 3 Drs in Denver Ahn, Brantigan and Sanders after speaking with all 3, I made my choice and flew out and seen Dr Sanders... I can not wait to see him once my WC comes through and get rid of my pain! Dr Sanders was all everybody said about him! His exam was quite extensive and and he also injected my scalenes and Pectoral minors with lidocaine which was the clincher as to the areas involved... My best of luck to you and your hubby, great to see one partner taking care of each other and I have a great support in my wife!!!!!!!

~~Mark-n-Goober~~

Bump for new posters

bump- here is the story about the rib growing back....

re-growing ribs? they grow back??
 

:eek:
if this gentleman had one surgery to remove ribs and they are growing back
wont they grow back again even if brantigan used axillary approach?
just wondering...
and if they grow back why do the surgeons remove the ribs in the first place if you have to have surgery again eventually?
We're like LIZARDS and FROGS...eeew

olecyn- the point is that if the periosteum is removed properly, the rib will not grow back.

The first surgeon did the surgery incorrectly.