The UCSD Center for Thoracic Outlet Syndrome
 

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?

I have not, but I'm curious if you have tried PT with Joyce Wilkinson in Santa Monica? Perhaps you have as it was a vascular MD at UCLA who recommended her.

Hopefully someone has experience with the UCSD group and will write back.

Have you backed off of, or stopped the weightlifting?
I don't know if you were lifting for bulking up or just as an overall fitness thing.

Hypertrophy of the muscles can crowd the spaces needed in the areas.
Imbalances with any muscle size increase can cause all sorts of problems too.

What type of exercices give you tos please ?

Check out the pic of the football player from the back:
http://posturalrestoration.com/media...all_Player.pdf

Hypertrophied everything, especially traps, with rounded shoulders.

That's exactly what I have also and I am afraid of surgery but I do not know what other options I have. I used to bench press and it has caused a lot of damage to my body. I am worried, depressed, and currently seeking the best qualified surgeon...

I used to benchpress along with other strenous excercises and I am very sure that it has caused my TOS. I regret everything now and can only pray that I my symptoms will improve.

You can only pray??? You said you were in the Los Angeles area. Give Joyce Wilkinson PT in Santa Monica a try even if you have already tried other PTs. Takes me 45 mins to get there and almost the same to get back, but it is sooooooo worth it.

In a typical session she will:
1. listen to your symptoms and complaints
2. evaluate your posture and tension
3. perform hands on therapy that makes genuine changes in your body
4. prescribe stretches and exercises to do at home to improve your condition

#3 is where she really shines although she must be very good at #2 in order for #3 to work.

The contact info for the place is the web site pogsonpt.com.

After my first session, I walked out breathing easier into my left lung. I didn't even know it was restricted!

In another session, my left neck had been hurting. She determined it was fighting against tension in my right upper trap and spent all her time on that, never touching the left neck. And she was right. The left neck pain went away.

The conservative (e.g., non-surgical route) is a long one, but along the way you learn more about your body and how to fix it. In addition to Joyce, I recommend looking into books by Joseph Weisberg, Pete Egoscue, Peggy Brill and Craig Williamson. The books help and they are very interesting, although alone they are not sufficient. For those of us with serious problems, there is no substitute to having an expert observe and evaluate our individual problems.

Just went to UCSD TOS team
 

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.

I have bilateral arterial and venous TOS. What diagnostic tests and imaging studies have you had done (e.g., ultrasound, CT, arteriogram, venogram, etc.)? When you say vascular, is it the arterial or venous form? I will be getting partial rib resections on both sides in the coming months, and I've done endless research on this, as it is such serious surgery. I'm kind of surprised, if you have vascular TOS, that no rib surgery is involved, but if you could share any more details about the surgery, it would be interesting to me to hear about them.

@ecstyle483, How are things going for you?

When do you expect surgery? please let us how you're doing.

Also, interested in your recovery and adventure with Dr. Brown and UCSD's care

Any update? I'm very curious regarding scalenectomy only vs 1st rib resection. Dr. Gelabert @ UCLA is the only surgeon I've consulted so far.

What are your symptoms and what did Dr. G recommend so far?

hi
 

I just read your post. I too have TOS and live in the L.A. area. Your story is just like mine. I did weight lifting, the repetitive movements did it for sure, thenI had a car accident, from that it's been downhill ever since. What did you end up doing? What DR.'s did you see here in L.A.? What horror stories did you hear about injections? They want to do more on me & I think I too need surgery. Please share with me! I hope you are better.
Thank you, Mitsy

hi
 

I just read your post. I too have TOS and live in the L.A. area. Your story is just like mine. I did weight lifting, the repetitive movements did it for sure, then I had a car accident, from that it's been downhill ever since. What did you end up doing? What DR.'s did you see here in L.A.? What horror stories did you hear about injections? They want to do more on me & I think I too need surgery. Please share with me! I hope you are better.
Thank you, Mitsy

hi
 

I too have TOS and am trying so hard to find relief. Did you like DR. G? How did it work out for you? I am supposed to see him this next week. Any advice? I hope you are doing better!
Thank you, Mitsy

Overall he was good, although I've heard about people getting detailed TOS-specific ultrasounds (I think at John Hopkins) whereas he thinks the u/s is not so useful. I would have liked one.

He recommended me for PT and to also see a neurologist since I had some other symptoms, which turned out to be TMJD. Interestingly, my TMJD seems to be caused by chronic muscle tension which also seems to be the major contributor to my TOS. He didn't really catch onto that, but then most MD's don't really look at the whole body. We have to take some responsibility to gather this info from various specialists and piece it together into a coherent picture.

I only saw him the one time. I'm managing with PT, chiro and self care.

Do not underestimate Los Angeles traffic or the fact that you might get turned around, enter the wrong building, etc. I was way late for the appointment. He was nice about it, but I wish I had gotten there earlier.

Dr. G says physical examination and brachial MRI show evidence of vascular TOS while my symptoms could be neurogenic TOS but he wants to see the results of SSEP and scalene block before making a surgical recommendation. He referred me to a Dr. Fish at UCLA but I think I am going try and see Dr. Sheldon Jordan instead or in addition. I initially didn't want to pay Dr. Jordan out of pocket since he doesn't accept my insurance.

Please research
 

Prior to surgery, please research crps and the risks of rib removal. I had mine removed and now deal with crps. For me, the pain is worse than when I had venous tos. Also there is a large failure rate due to adhesions etc. my arm still goes numb when I lift it and I can feel the scar tissue pulling in my underarm. My docs won't touch it until they have to because of my crps. Make sure your doc knows what crps is! There are steps that can be taken pre op and post op tp try and prevent it.

Yes , CRPS/RSD does happen at times and with no rhyme or reason to it, same with the scar tissue.
:(

Really something to consider.

Are the risks for CRPS lower with scalenectomy only?

I don't know if the risks are any different, RSD/CRPS can even happen from a minor bump , or just out of the blue.

Our RSD/CRPS forum will have more posts about how each member got that condition.
Might be a good topic for a thread or poll there.

http://neurotalk.psychcentral.com/forum21.html

Has anyone ever followed up with these folks at UCSD?

My quick story: Dr. Aaron Filler and Dr. Justin Brown
 

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.

Thanks so much. I'm looking forward to your report on UCSD. Have you consulted any of the vascular guys?

Hi guys,

My story a little later, I'm a long time reader however. My surgeon explains that CRPS is a normal reaction to nerves being disturbed and they take time to heal. My research supports his point of view and useful information can be found at the National Institute of Neurological Disorders and Stroke web site. Search for CRPS. edit

I hope the info provides some supportive advice.

Blurto

No, I haven't consulted the Vascular Docs because my issues are solely neurogenic, thankfully. The other doc I saw was an Andrew Nguyen, who was fantastic but doesn't deal with peripheral nerves, he is more of a spinal tumor doc. Had to see him to get referred to Dr. Justin Brown (hoops for the insurance). A few more days till my appt. Wish me luck!

Good luck,

Have there been any improvements or changes to your symptoms?

Also interested in UCSD
 

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.

Hi
 

have you had your surgery yet? If so how did it go? I am interested in seeing Dr. Brown as well.

Ucsd
 

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.

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~!

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.

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.

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.

What tests did Dr. Brown do when he examined you? Is he ordering any new testing? What testing had you already had done?
Who else have you seen?

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.

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.

Hi CJ did you have your surgery yet? if so how did it go?