Diagnosed with TOS - Need Scalene reduction Any advice.
 

Hi I was just told I needed a scalene reduction. I'm in Orange County CA. Going to UCLA for a MRI/A/V. Any suggestions on surgeon. Has anyone had this procedure done at UCLA?

Search this forum for "collins"

http://s91524683.onlinehome.us/rsi/articles/collins.htm

Hi,
What kind of symptoms are you having? Vascular, nerve, both?
What is your avg pain level in a day?

We may have some self help ideas that might help you feel better.


Scalene reduction?

Did they clearly tell you the reason why, and how it will be a good thing for you?
Any other options, PT chiropractic, etc?

Dr. Hugh Gelabert
UCLA Gonda Vascular Center
200 UCLA Medical Plaza Suite 510-6
Los Angeles, CA 90095-6908
310-206-6294
FAX: 310-206-3885
Website: www.surgery.medsch.ucla.edu/asp/doctors.asp

The UCSD Center for Thoracic Outlet Syndrome

My recommendation...give PT with Ando and Spousa a try before opting for surgery.

I second Marc's recommendation. I used to have a lot of scalene pain even after my scalenectomy(2010). After few visits to Dr. Ando and Dr. Sposa in Anaheim hills, they have been able to help me tremendously with my scalene pain along with the couple exercises that they have taught me.
It's really worth giving them a try first before you think surgery. ( I am not against surgery if it is needed further along the way.) Surgery definitely does not fix everything, but these people are masters at what the surgeons can't fix, in my case and opinion. I can't recommend Ando and Aston highly enough. I travelled from Northern Cal to see them and it was worth every mile. Good Luck!

I also have a thread on Ando and Aston on this forum, if you would like to read it.

Who diagnosed you and what is the actual diagnosis?

Hi and thanks for all the info.
Short version
Diagnosed neurogenic TOS in 2007 bilateral SSEP positive 2009 by nudleman in Santa Ana
Became coach potato
Started to get pulsating Tinnitus and venous hum which has taken over my life.
So decided to figure out why. Had cerebral angiogram found cerebral aneurysm which was clipped last year. Still have tinnitus and now syncope.
Found Collins at UCLA. Talked to him and he said there was connection between TOS and tinnitus. So he sent me to Dr Lawrence Miller. Doppler ultrasound showed damage to scalene and vertebral occlusion with arm extension.
Miller suggested PT but thought a scalene reduction was necessary. Have appt for MRI/v/A with Collins and just made appt with Ando (Wu) for PT in Anaheim hills. Who does everyone recommend at Ando PT?
Pain is 0 - 10 depends on what I have done in past few days.
So arterial TOS is new diagnosis.

Thanks for your reply. I found Ando and Astons name on this forum. Called today for appt.
Does anyone have pulsating tinnitus or venous hum? It is literally. Driving me crazy.

Thanks for all info.
 

Have contacted Ando PT and Melissa Ricter? And have appts.
I have neurogenic and vascular TOS. But the tinnitus is driving me crazy. I can either hear the IJV backing up with turbulent flow in sigmoid sinus or the scalenes spasm? Anyone else have this?
I have appt with Collins at UCLA for MRI etc.
Just tired of this. I can deal with pain but the tinnitus is ruining my life.
At this point not sure of who to see on regular basis. My neuro lost interest. Need internist or GP who can help me figure this out.

I don't know if those are the same or similar to a bruit?

For a long time I had a whooshing/pulse like sound that I could hear inside my head, very annoying... mine was the worst during times of severe spasms.
Some nights it was like an old time train running thru my head chug a chug all night long..:(

My chiro was the one that actually told me the name of those sounds.
Luckily he was able to resolve those bad spasms, took about 2 months and then my top ribs were stuck in a raised position from the spasms..
An adv PT guy found that and dropped them down, and then chiro followed up after as they tried to raise every once in awhile.

But all has been pretty good for about 4 years now.

Yes same as a bruit. Mainly when I lean forward , lie down or turn head, exercise. Sounds promising if you were able to get rid of the bruit.

I had a great experience with Niren Angle down in Mission Viejo. He trained at UCLA and was the chief at UCSD. He has been my Primary in regards to TOS treatment (my other doctors just don't know enough about it to treat). I saw doctors at UCLA and UCI but their system simply is not responsive. Dr. Angle has clinic just on Mondays, but he is quite responsive (even answers email). You can email him via his website: www.niren-angle.com

Tic2,

Thanks for sharing your history, I recommend Dr. Art Ando to be seen first and then Dr.James Sposa, they both do different kind of mobilizing but very necessary stuff. I always make my appointments with both of them whenever I travel to LA but in that order if possible. Hope that helps. Mine was/is bilateral arterial TOS too. Still doing great on right side(scalenectomy 2002), left getting much better with (scalenectomy 2010) and really good PT.
What did Dr. Collins say about Tinnitus, will it get resolved with the surgery or is it a totally different matter?
Good luck with your appts :grouphug: Please post once you have your visits.

Response
 

I too have felt the whooshing sound. Only feel it on my right side (which is where I have most of my muscle tightness). I typicaly get mine even worse if I have a migraine and muscle spasms in the neck.

I had a migraine yesterday that was really bad, had me in bed all day. I was trying to listen to some relaxing music to relieve tension, had my ear buds in and it seemed like I could hear my heart beating in my ears. Hope that makes sense, is that similar to what you are referring to?

Sounds the same. Collins says it is due to compression on valve in jugular Vein. So blood backs up ans swooshes in jugular bulb near ear. Valve is near collarbone. I hoping that PT will help relieve compression and stop compression.
Have you talked to any docs about the whoosh sound.
I hear and feel the whoosh ad vibration.

Collins says Tinnitus is connected toTOS
Hard to post - too much pain
I'll try later

I haven't spoken to any dr.'s about it yet. Just after reading recent posts put two and two together that it could be the TOS causing it. I am going to see Dr. Robert Thompson, St. Louis, the end of November. Can't wait as the last few days have been an awful flair up.

I hope you have better luck with PT, I didn't have much success but I also don't know that my PT was real familiar with TOS. And we weren't certain at the time if it was TOS, shoulder instability, winging scapula, or what.

Does the corpse pose & relaxation help at all?
Have you heard of that or tried it (many times a day for a week or 2 or more...gives a best idea if it will help you or not)

https://encrypted.google.com/search?...Gc_YigKloYCgCA

I often suggest new members look thru our sticky threads , esp if lots of pain, you can just read and not have to type.
Useful sticky - http://neurotalk.psychcentral.com/thread84.html
TRPs - http://neurotalk.psychcentral.com/thread125577.html
Drs & PTs list - http://neurotalk.psychcentral.com/thread135.html

in L.A.
 

Hi Tic,
I am also in L.A. and I also see Dr. Ando. I drive 50 miles to see him. You definately want to see Dr. Ando to begin with. Dr. Sposa is good too but Dr. Ando is the Master. He has helped me alot.

Dr. Jordan is the best TOS Dr. for diagnosis in L.A.He also does pain management.but he doesnt take insurance so he can get quite expensive depending on your insurance. I dont think Dr. Miller is a TOS specialist . I have never heard the term scalene "reduction" i am assuming he means scalenctomy.

I have also consulted with all 3 Vascular surgeons here- Mckenna, Ahn and Gelabart at UCLA. ( I liked him the best).I have not seen Dr. Angle but Marc recommends him and he studied under Gelabart. The only one here that does scalenectomy only is AHn and he will require an angiogram and agioplasty first. There is a dr. in San Diego Dr. Brown who also does it. All the others here take your rib out. You will need to get the correct diagnosis before deciding whether you just need a scalenctomy. i was intersted in doing that too, but have since determined my ribs are a problem too. I have opted not to have surgery at this point but it has taken me a year + to start feeling better.

I am interested in finding out about your mri with Dr. collins. Does your insurance cover it? I have heard it is an all day event. There is another place by Cedars that does it too, but I dont know if it is as comprehensive. I am curious whether he can see the difference between disc pain and TOS pain. I may be calling him for an appt, as my insurance just started covering UCLA again.

You can also check out my thread: JKLS journey where I talk about all the Dr's I have seen in L.A.

Good Luck and Keep us posted!

Hi thanks for all the info.
I changed my appt to Dr Ando for monday.
Dr Miller is a pain management doc that Collins suggested I see, toget the MRI ordered but I think I need a vascular surgeon. Should I be worried about blood clots?
I think a scalene reduction is a scalenectomy. In process of getting MRI approved by insurance. I hope it is. Otherwise cash price is 3k.

Let me know what you learn about the Tinnitis.

I will definately update you with what I find out, but it will be the end of November before I find out anything a the earliest.

Thank you for the referrals. I had my first appr with Dr Ando today. Amazing he can just look at you at see what wrong. Told me I had c1 out of alignment. Explains a lot of my pain. Look forward to working with him.
Best PT I have seen.
Thanks again

Mary

Mary, I am so glad you could see Art and so happy for you! :D

That was my exact first impression when I saw him that he can just look at you and know what's wrong and then you stop feeling some of the pain once he fixes it. He is really like a human xray machine. You are in great hands! :winky:

I am so glad you were so prompt in seeing Dr. Ando. If he tells you to see Dr. James Sposa, he is really good too, they both do different kind of mobilizing, but very necessary and different kind of therapy that I wish I had come across 3 years back!

Dr Ando really is a true master!

I was there yesterday too! so was Marc! Good luck with that. He is the best!

I had an intern do most of the evaluation and but Dr Ando was observing and he checked out my neck. I see Dr Sousa? tomorrow and then Dr Wu.
I feel more normal today already and I think the tinnitus is less of a scream in my ear. I hope it is the start of getting back to normal. I read somewhere that any disturbance in the vertebral arterial flow can cause tinnitus. Subclavian steal caused pulsatile tinnitus.
Still trying to get the MRI/MRA by Dr Collins approved. I read the post above about the cost. Keeping my fingers crossed. Hard to get a Dr office to but in the effort and talk to insurance company for approval.
So what time were you at Dr Ando's? I was there at 2:30.
Mary

I was there earlier- at 11. I always go around that time to beat traffic. I wont be back for another 3 weeks though. Dr. Sposa is good too. Try to get an appt with Dr. Ando where he works on you. You may have to make it a week or so in advance. I dont know dr. Wu. Is she the acupunctuist? Good Luck!

My wife has seen Dr. Ingrid Wu. She is the female DPT. My wife likes her, she does rib and joint mobilization but I'm not sure how much TOS experience she has.

Mary,

I am so glad your tinnitus seems better. Wow, what a relief, hope it gets better and better over time.
Do you actually have pulsatile Tinnitus? A friend of mine in the U.K. has pulsatile Tinnitus, please post about your progress, maybe this can help her.
She might be willing to travel to see Dr. Ando if she does not find someone there to help her. Dr. Ando has been very kind to give me a link for good PT's or Osteopath's in the U.K. to help her.
Thanks for posting about your progress with Dr. Ando.

Hi
Tinnitus and pulsatile tinnitus are different issues. I have both but hard to differentiate at times. Many causes of pulsatile tinnitus which is usually vascular issue. The main thing docs look for is a Dural vascular malformation or fistula in the brain near the ear. Others are idiopathic intracranial hypertension, dehiscence of sigmoid sinus near the internal ear canal, a high jugular bulb. List goes on and on. Subclavian steal can also cause pulsatile tinnitus. I have had tests to rule out most sources. Since I have TOS and pulsatile tinnitus and the pau and noise seem to occur st the same time I figured they had the same source. That is when I found dr Collins at UCLA.. Who believes the swooshing sound goes from compression of the jugular vein and causes a back up of blood to the jugular bulb near the inner ear.
I know that when I am relaxed there is little pain and tinniitus is minimal.
There is a good website that has lots of resources about pulsatile tinnitus
http://www.whooshers.com/
Your friend may already know about that. There is also Facebook group that is very active. Great source for info on pulsatile tinnitus. Most info there is on vascular irregularities close to or in the brain.

I hoping I on the right track about this. Good luck to your friend.

Wow! Mary thank you for explaining Tinnitus so well and all the info. Also thanks for suggesting the facebook group, I will let her know.

I really appreciate you posting in such great detail, I will pass on all the info to her.

3D MRI authorized
 

Sorry I did not mean to overboard on all the issues of Pulsatile Tinnitus. Just that there are so many reasons for pulsating tinnitus and some are life threatening. However it can also be due to muscular issues.

My news is that I have actually had a couple of relatively quiet episodes and one very quiet night since I started PT with Ando and Ashton. So as things loosen up hopefully my tinnitus will fade away.

Also I just found out that insurance has authorized the 3D MRI/A/V with Dr. Collins at UCLA. Scheduled for next week. I guess it is the engineer part of me that wants to see the entire picture. Flow rates, blockages etc. :)

So happy for you!
 

So glad to know your 3D MRI/A/V with Dr. Collins got approved! Good luck and let us know how it goes.

excellent news! I am so glad you are getting help at Ando & Aston. Let us know how the mri goes! I would love to get one too. I wonder if it can tell the difference between disc pain and TOS.
What kind of insurance do you have?

I have blue cross PPO insurance.

Dr. Collins MRI/A/V
 

I had the MRI/A/V at UCLA on Wednesday and Dr. Collins spent hours with me afterwards going over the results. Dr. Collins is a very interesting and an amazing radiologists and person.
I definitely have TOS with a high left rib and tilted manubrium and compression of subclavian vein , artery and more. My trachea is even pushed off to the side. There was definitely compression of the jugular and venous blood flow at the sigmoid sinus near the left ear. Explains the tinnitus /pulsating tinnitus.

I was great to literally see what was going on and this information will help me get better.

The only bummer was the physician that ordered the test only ordered half of the exam. Found out at the last minute and then his office started to blame other people as to why it was not completely authorized. The office staff said the doctor would not talk to the insurance company to get the rest of the exam ordered. So I ended up paying cash price for part of it. Time to find a different doctor. The fact the doctor would not make one phone call cost me $2K. Insane.

Dr. Collins recommended Dr. McKenna at Cedars or Gelabert at UCLA.
:)

wow, bummer about the $, but thats great news that he can see all that! Do you think it would help just for nTOS too? I have blue cross ppo too- so I am going to check into it. I saw both Dr. M and Dr. G. for consults. I much preferred Dr. G. How is the pt going? I will be at Ando and Aston Monday and Wed.

I may still get approval for the second half of test. If the doc called them. But it was worth the cost. I would have never found out about everthing. Explains so many of my symptoms. I had no idea how much damage there was.
So I would definitely recommend it for any TOS patient. Itakes it more real than just the pain and stiffness. Collins can see all the nerves as they come off the c-spine and pass through the BP.
My contract with blue cross requires authorization. Just be careful because there are multiple ICD codes since he does MRI of shoulders right and left and the MRA of BP. Blue cross approved the MRA of BP but then wanted more info for the shoulder MRI.
I'll be at Ando pt Monday and Wednesday too. Monday 3:30 and we'd in am. So far it's good but have felt really crappy. The TOS which appears to be neuro and venous is affecting my entire body. Legs hurt due to compression of jugular and tinnitus is very mentally exhausting.

Mary