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

The UCSD Center for Thoracic Outlet Syndrome

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Unread 04-06-2012, 12:19 PM   #31
jkl626
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Default Also interested in UCSD

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Originally Posted by supersickchik View Post
I have been reading on this forum for a very long time (thank you for all the knowledge and guidance) after I was hit head on by a drunk driver back in Feb. 2011. I have been in constant pain for over a year and nobody could tell me what was wrong with me. The two regular docs and 2 neurologists all said they didn't know what was wrong because all my MRIs and NCS/EMG studies were coming back normal. After hours and hours of research I was able to diagnose myself with neurogenic TOS. I was given injections, PT, drugs, the works, with minimal to no results. I was ready to give up when I called some of the specialists on this forum. I went to a Dr. Aaron Filler solely for this MR Neurography. I finally got a diagnosis and learned why all my previous tests were coming back normal and why all other forms of treatment weren't working. First, a regular MRI can not take a picture of the peripheral nerves unless it is within centimeters of your spine. The neurography, in which Dr. Filler discovered, is able to take pictures of the peripheral nerves and because of this he was able to pin point my problem which is in the Scalene triangle and within my armpit. My scalene muscles were torn in the accident and the scar tissue is now compressing my nerves making my life very painful. The NCS/EMG were normal because they did it in my hand and forearm because my pinky and ring fingers don't really work right. This test should have been done in my brachial plexus and I was told it is quite a science to do correctly. Now Dr. Filler was very expensive and his office staff was very 'sales pitchy' which turned me off. Dr. Filler was very knowledgeable just would have preferred more eye contact and timeliness plus he is an out of network doctor. I needed a doc that was In Network and that is how I stumbled upon Dr. Justin Brown. I am scheduled to see Dr. Justin Brown April 10th. I am very optimistic because I have been through so much over the past year. I am anxious to get some resolution to this or at least some relief. I will come back with an update.
Hi. I am also in L.A. with neurogenic symptoms. I also saw dr Filler but chose not to do any procedures with him as he is tooo expensive.I didnt like the sales pitch either. I chose to go with dr. Jordan who is also expensive but 1/3 the cost of Filler.I dont know how much my insurance will cover plus Filler does not have a good rep. I did a scalene block and botox with Dr. Jordan.
I am just now starting to feel the effects of the botox.I am going to see how much I can heal with pt etc. Meanwhile I am going to start seeing some surgeons.I am also interested in seeing Dr. Brown, so will be curious to see how it goes for you.Did you see Dr. Ahn or Dr. Gelabart? I am interested in scalenctomy without rib re-section.
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Unread 04-06-2012, 04:44 PM   #32
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Originally Posted by cjennett View Post
I am brand new to this forum. I just saw Dr Justin Brown at UCSD. He is a neurosurgeon on the TOS team. He is very likable and knowledgeable. He has recommended surgery for me unfortunately, as I failed PT. I have both neuro and vascular symptoms bilaterally. He is going to do a scalenectomy which does not involve any rib removal. Hopefully my recovery and complication rate will be lower than what I have been reading about in these threads.
have you had your surgery yet? If so how did it go? I am interested in seeing Dr. Brown as well.
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Unread 04-06-2012, 11:28 PM   #33
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Hello, I am just now 4 weeks post op. I have venous TOS, and unfortunately was unaware until I had a blood clot and swollen, blue left arm. I live in San Diego, though and was rushed to UCSD Hillcrest hospital. They first went in with catheter, and then did perform first rib resection. I would highly recommend them.
Dr. Bandyk (vascular surgeon and professor of surgery) performed my surgery and I was very impressed with him as well. I would recommend setting up a consultation if you are able. I was in the hospital for a total of 7 days, including both procedures and surgery though. I ranked the ER, hospital, and staff (nurses and doctors alike) very high. Hope this helps.




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Originally Posted by ecstyle483 View Post
Has anyone visited this clinic in San Diego?

I currently live in Los Angeles and have been seeing various doctors at UCLA.
My TOS is getting worse and really need to get relief. I have tried physical therapy and all types of conservative treatment. MRI of the cervical spine is normal and there were no abnormalities with my chest Xray. I will be getting a scalene block soon to confirm TOS.

I am to the point where I want surgery. I am 28 years old but I have been suffering from this since I was 26, most likely due to weight lifting.

I know that there are injections and botox treatments but I am afraid as I have read stories of serious injuries.

*edit*

Back to my original question, has anyone tried attending "The UCSD Center for Thoracic Outlet Syndrome" or have heard any thing from this group?
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Unread 04-09-2012, 03:18 PM   #34
supersickchik
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Unfortunately I haven't had any improvements for quite sometime. I believe after about 4 months was when I noticed the plateau and nothing getting better. I then learned what my triggers are and the signs of when I need to stop doing what I am doing. Before, I would ignore these things hoping, I guess, that it would just heal itself, or that it would go away if I pretended it didn't exist, (I'm a bit stubborn) but then paid for it for days after. Some days are better than others and some are just different than others pain wise.

It has been very difficult for me mentally and physically. My entire life I have always been VERY active: soccer, running, hiking, swimming, you name it I did it. Then, to one day not be able to do any of it anymore because somebody was drunk driving and hit me. It has been quite an adjustment and am just ready to, hopefully, get some relief. Tomorrow is the day~!
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Unread 04-09-2012, 09:56 PM   #35
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Quote:
Originally Posted by Laur3d View Post
Hello, I am just now 4 weeks post op. I have venous TOS, and unfortunately was unaware until I had a blood clot and swollen, blue left arm. I live in San Diego, though and was rushed to UCSD Hillcrest hospital. They first went in with catheter, and then did perform first rib resection. I would highly recommend them.
Dr. Bandyk (vascular surgeon and professor of surgery) performed my surgery and I was very impressed with him as well. I would recommend setting up a consultation if you are able. I was in the hospital for a total of 7 days, including both procedures and surgery though. I ranked the ER, hospital, and staff (nurses and doctors alike) very high. Hope this helps.
Thanks for this!

Here is my problem. The "UCSD Center for Thoracic Outlet Syndrome" seems to have no association with the UCSD Vascular Surgery dept. (Dr. Brown is a neurosurgeon). I am going to ask Dr. Niren Angle what he knows about this as he used to be the head of Vascular Surgery at UCSD.

If you have only neurogenic TOS and want scalenectomy only, Dr. Justin Brown seems to be a good option. I'm guessing Dr. Brown will send you over to the vascular guys if he determines rib resection is needed. Perhaps he is among those who believe rib resection is only necessary when a cervical rib or similar anomaly is involved.
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Unread 04-11-2012, 05:20 PM   #36
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Quote:
Originally Posted by cjennett View Post
I am brand new to this forum. I just saw Dr Justin Brown at UCSD. He is a neurosurgeon on the TOS team. He is very likable and knowledgeable. He has recommended surgery for me unfortunately, as I failed PT. I have both neuro and vascular symptoms bilaterally. He is going to do a scalenectomy which does not involve any rib removal. Hopefully my recovery and complication rate will be lower than what I have been reading about in these threads.
Have you had surgery yet? How did it go? I am very anxious to hear because I too have seen Dr. Brown and am scheduled for surgery the first week of June.
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Unread 04-11-2012, 05:57 PM   #37
supersickchik
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Default My visit with Dr. Justin Brown

Let me start with the fact that Dr. Brown is the second surgeon I have seen. I liked him. I found him very informative, knowledgeable and likeable. His office was very punctual, I waited less than ten minutes to be taken into the room and once in waited maybe 5 minutes for the PA to come in and take my history. I had a ton of information to give which is sometimes hard because I find myself forgetting some detail and found the PA getting lost in the details. Once my history was done Dr. Brown came in and the PA and I filled him in with all the pertinent information. Dr. Brown did his exam and diagnosed me with TOS. He recommended surgery because PT wasn't successful along with all the other steps I have been through. He will do a scalenectomy and he thoroughly explained to me with pictures what he will do, how he will do it, and what the outcome will be. He also told me the dangers of surgery, which scared the hell out of me, but if this will make me close to normal again I am all for it. This seems to be a very routine surgery for him. I also watched his hands the entire visit and they are very steady. Another thing was his poor opinion of Dr. Filler. And I quote "it is amazing how Dr. Filler sees things nobody else can see."

What I did not like:
I felt a bit rushed, but am unsure if it was from being overwhelmed by all the information. Also, that after giving my history, him never seeing me before, he jumped straight to surgery. Also, I feel like he didn't really look at the neurography films I brought him. He stated he didn't see anything completely obvious, but that is usually the case with TOS. He kept my disk and said he was going to have his radiologist look at it with him.

Overall, I feel there will never be a perfect surgeon, that I will find a fault somewhere with everyone. My insurance covers him so he has to be the guy... Dr. Brown has a great reputation and his staff speaks very highly of him. I have researched him and have found very minimal reviews about him, but they were all good. My theory on that is...more often than not it is the unhappy who write reviews to complain. I will be doing the surgery the first week of June....

I know this is kind of all over the place, my apologies, I am still processing all the info and the experience.
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Unread 04-11-2012, 11:19 PM   #38
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What tests did Dr. Brown do when he examined you? Is he ordering any new testing? What testing had you already had done?
Quote:
Originally Posted by supersickchik View Post
My insurance covers him so he has to be the guy...
Who else have you seen?

Quote:
Originally Posted by supersickchik View Post
I felt a bit rushed, but am unsure if it was from being overwhelmed by all the information.
My advice is to schedule as many follow-up visits as you need to get all of your questions answered and feel comfortable. The better you and your surgeon get to know each other the better.
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Unread 04-12-2012, 11:13 AM   #39
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Quote:
Originally Posted by supersickchik View Post
Let me start with the fact that Dr. Brown is the second surgeon I have seen. I liked him. I found him very informative, knowledgeable and likeable. His office was very punctual, I waited less than ten minutes to be taken into the room and once in waited maybe 5 minutes for the PA to come in and take my history. I had a ton of information to give which is sometimes hard because I find myself forgetting some detail and found the PA getting lost in the details. Once my history was done Dr. Brown came in and the PA and I filled him in with all the pertinent information. Dr. Brown did his exam and diagnosed me with TOS. He recommended surgery because PT wasn't successful along with all the other steps I have been through. He will do a scalenectomy and he thoroughly explained to me with pictures what he will do, how he will do it, and what the outcome will be. He also told me the dangers of surgery, which scared the hell out of me, but if this will make me close to normal again I am all for it. This seems to be a very routine surgery for him. I also watched his hands the entire visit and they are very steady. Another thing was his poor opinion of Dr. Filler. And I quote "it is amazing how Dr. Filler sees things nobody else can see."

What I did not like:
I felt a bit rushed, but am unsure if it was from being overwhelmed by all the information. Also, that after giving my history, him never seeing me before, he jumped straight to surgery. Also, I feel like he didn't really look at the neurography films I brought him. He stated he didn't see anything completely obvious, but that is usually the case with TOS. He kept my disk and said he was going to have his radiologist look at it with him.

Overall, I feel there will never be a perfect surgeon, that I will find a fault somewhere with everyone. My insurance covers him so he has to be the guy... Dr. Brown has a great reputation and his staff speaks very highly of him. I have researched him and have found very minimal reviews about him, but they were all good. My theory on that is...more often than not it is the unhappy who write reviews to complain. I will be doing the surgery the first week of June....

I know this is kind of all over the place, my apologies, I am still processing all the info and the experience.
Hi , I agree with Marc, try to get all of your questions answered so you feel comfortable. I am curious also who else you have seen and what are dr Browns reasons for scalenectomy only. Also you said he has a great reputation.I am wondering where you heard that. I am also interested in seeing him, but I couldnt find much information on him.How many scalenctomies has he done?

Dr. F does not have a good reputation. My Dr.(Dr. J) also disbelieved Dr. F's diagnosis even though it sounded good to me.and told me "there is a reason Dr. F is no longer at UCLA". I was also turned off by the reviews , sales pitch and price!! Dr. J says the MR neurography is out of date and the Ultrasound guided injecitons is much more state of the art. The literature supports this also.
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Unread 04-12-2012, 11:16 AM   #40
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Quote:
Originally Posted by cjennett View Post
I am brand new to this forum. I just saw Dr Justin Brown at UCSD. He is a neurosurgeon on the TOS team. He is very likable and knowledgeable. He has recommended surgery for me unfortunately, as I failed PT. I have both neuro and vascular symptoms bilaterally. He is going to do a scalenectomy which does not involve any rib removal. Hopefully my recovery and complication rate will be lower than what I have been reading about in these threads.
Hi CJ did you have your surgery yet? if so how did it go?
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