Sufferring in Orange County, CA
 

Hi,

I'm a new member who has browsed these boards for the last 14 months but not posted. I've noticed that folks that remain with pain or complications are primarily the ones who continue to contribute. I'm guessing that many with positive outcomes no longer have a reason to visit here. I want to use this thread to chronicle my own journey and hopefully a return to normalcy.

I grew up in Southern California but attended college in Alabama as well as my first job after college. After 10+ years, I moved back SoCal at the end of 2005. A few weeks before moving I had a low speed accident where I rear ended a truck that had stopped abruptly while I was distracted. I did not believe I had any injury. My new job I worked from a home office but I did a lot of driving and flying to cover my new sales territory. As an engineer I was also carrying 50 lb demo kit in addition to my laptop and luggage. I was working solely from a laptop. Hunching over it in airports, airplanes, and working on the couch.

In 2007 I knew something was wrong. I had always been active and played basketball for the college team. I noticed that I didn't have my normal strength when I rebounded or tried a layup when my arm was somewhat behind my head. I had random shooting pains in my shoulders. My primary care doc sub-specializes in sports medicine. He MRI'd my shoulders and determined it was just rotator cuff tendonitis/bursitis and sent me to PT. The therapist only made me worse. I sneezed in the shower and went to the floor with pain shooting from my trapezius down the scapula and I could barely get up. My doc gave me a Medrol Dosepak and that seemed to clear everything up for a month or so. I never went back to that therapist. When the pain returned, it seemed to be centered in the upper trapezius on both sides. Celebrex seemed to help matters but each time I noticed improvement I would shortly regress further.

In 2008 I married a medical student. By 2009 things had gotten so bad she insisted I see a neurologist. I started seeing Dr. Vernon Williams though Kerlan-Jobe in Anaheim. He sent me for an MRI of the C-Spine. The MRI showed Cervical Stenosis (congenitally small spinal canal) w/Degenerative Disc Disease. When a Cervical Epidural Injection offered no relief Dr. Williams stated he suspected TOS as well. He prescribed PT for me along with a S3 brace by Alignmed. He sent me for MRI of the Brachial Plexus. The day of the MRI an unlicensed driver ran a red light and broadsided me. Luckily, I was able to brake and she hit my driver side front wheel instead of the door. She went to the hospital and I walked home. However, a few days later my left subclavius was noticeably inflamed and my symptoms were getting worse. I was given another Medrol Dosepak and the S3 brace. The S3 brace seemed to immediately eliminate my symptoms.

I returned to PT as the S3 brace was far too hot and cumbersome for me to wear to work or bed. The therapist insisted I not wear it to therapy even though I was in pain without it. My symptoms went right back downhill and the S3 brace was not longer effective. I quit therapy again. Dr. Williams performed a scalene block on the left side right before Xmas of 2010. I had a negative reaction to the block and formed huge knots at the injection sites. I was unable to get in contact with Dr. Williams. Kerlan-Jobe told me the earliest appointment was in 6 weeks. I left a message for the nurse but my call was not returned. After this, my wife did not want me to return to Dr. Williams.

My symptoms started going downhill fast! All of my pain had been in my shoulders, traps, and scalenes near the shoulder. I now had neck pain that seemed to be coming directly from my C-Spine. I was taking Hydrocodone every 6 hours to function. I also started having a fibromyalgia type reaction to any sort of pressure and could not sit and watch TV for more than 15 minutes or stand to have my wife rest her arm on me in bed. We figured that since the scalene block had not worked that there was no TOS. I found a new neurologist and neurosurgeon who ordered an EMG. I ended up having ACDF surgery C5-C6-C7 2/28/11.

Immediately after ACDF the fibromyalgia type symptoms were gone. I felt great 3 weeks after surgery and planned to return to work. That 4th week the scalene tension returned in full force and I felt pain from the surgical site. They gave me a 5-day course of Toradol and I was feeling good again. I returned to work and PT and continually improved. The scalene tension kept returning every 2-3 months. A cervical facet block injection seemed to do the trick on 2 separate occasions.

In December 2011 the scalene tension was back along with the SCMs (Sternocleidomastoid), along with a new symptom: Cervogenic headache. Trigger point injections would relieve things only for a day or two. Massage would help but only for a day. They sent me back for new MRIs of the C-Spine and brain. No problems with the fusion, but still headache. Back to Toradol, headache disappears but returns immediately after Toradol 5-days ends. I go on another 5-day course but headache returns again. Headache is now getting worse and includes occipital neuralgia. Occipital block trigger point injections w/steroid help but now headache seems to have intensified below the block.

By February I start to notice my hands are cold and numb. I start to have problems opening water bottles and jars which my wife opens with ease. We go back to the neurologist and we are all thinking TOS!!! I try to wear the S3 brace to see if it helps but only a little and just too annoying. I ordered a garment from Intellishirt since alignmed never responded to my inquires regarding their postureshirt. I had ordered the wrong size, but luckily they are in Newport Beach and let me exchange that afternoon. Upon wearing the garment I immediately feel a reduction in hand pain & numbness. My grip strength returned back to normal and my headache decreased. I start researching Vascular Surgeons with TOS experience immediately.

We were able to see Dr. Gelabert 2/29/12. We liked him very much. Surgeons are often very clinical with little personality...often jerks, but not Dr. G. We never felt rushed and he wanted to hear every detail of my history. He states that his physical exam of me supports TOS, vascular symptoms appear more evident than neorogenic. He did the exam with my Intellishirt on as it only gives postural reminding rather than extreme correction. He told us that the failed scalene block doesn't rule out TOS (too bad follow up with Vernon Williams never occurred). He wants the scalene block repeated as well as SSEP testing. He recommended we see Dr. Sheldon Jordan but gives us the caveat that he is cash only. He gives us a good amount of reference information and contacts for TOS. He also made a referal for us to get a scalene block and SSEP test at UCLA since they take just about any insurance. I have decided that seeing Sheldon Jordan at least once will be worth the out of pocket expense.

Dr. G also spoke of Dr. Ahn and spoke freely about differences in philosophy. By my recollection, Dr. G does everything transaxially while Ahn will go in both transaxially and supraclavicularly in some cases. I had not read johannakat's "How I chose my surgeon thread" yet so I did not ask about the supraclavicular approach being needed for complete scalnectomy and a potential 2nd set of surgeries being needed down the road when just supraclavicular approach is taken. I will definitely ask at my next appointment.

I meant "....when just transaxial approach is taken" above.

I saw my neurogurgeon, Dr. Ty (BASICSPINE) on 3/1/12. He was familiar with 1st rib resection and scalenectomy. He said that the fact that the intellishirt provides a measureable and immediately noticeable effect on symptoms that I should not give up on conservative treatment just yet. He referred me for an eval by a chiropractor, Dr. William Leach who he thought may be able to help. Apparently he utilizes the Pettibon system for posture correction (I've never heard of it), a search here returned no results. I'm a bit skeptical, but I'm desperate at this point.

In the afternoon of 3/1/12 I visited the clinic at the (UC Irvine) Susan Samueli Center for Integrative Medicine for a therapeutic massage. Melissa Ricker is a massage therapist with experience in successfully treating TOS. After just one session I have to say she is amazing. She was able to eliminate the pain & numbness in both hands. My neck was like a brick, and my headache did not improve. She said she would try and help more with the headache next visit. If you are in Orange County, you need to look her up. She's easily the best massage therapist I've encountered. She gave me hope that the chiro along with massage therapy can allow me to work.

My hopes were dashed 3/2/12 when the headache spread to the front of my face around the eyes and mouth. I went straight to the neurologist and I went downhill right in the office. My lips were numb, my face hurt, and I was losing my voice. He sent me to Hoag Hospital for an emergency workup to make sure there wasn't something wrong in the c-spine. They did MRI of the c-spine and brain and there were no problems. The neuro allowed me to come in Saturday for trigger point injections to give me some relief. I'm taking more hydrocodone now and my hand pain is returning in force. I'm unable to drive and I'm starting to believe that surgery is inevitable.

I am going to try and see Dr. Sheldon Jordan and Dr. Ahn as soon as possible. I would like to go see Dr. Brantigan but I'm sure I don't want to have surgery out of state. I think it will either be Gelabert or Ahn. I will keep this thread updated as I progress.

Hello Nospam
 

I wanted to welcome you to Neuro Talk. This site should help you while you address all the issues pertaining to TOS. I have major cervical issues myself, so I do understand the suffering you are going through. There will be others that have the condition, who can address some of your issues. I hope that while you seach for answers, that you keep track of all this that you've gone through in writing. No matter who you see, they will appreciate the effort you took to document your case. I hope a permanent solution can be found for you, where you have a better quality of life. Again, I am glad you found Neuro Talk, this site has helped me to cope better with all my medical conditions. You will make a few friends along the way. take care, ginnie

Hello
 

I have posted here since approx. 2004-

I have neurogenic vascular TOS, which then prompted RSD, bedridden, Right sided surgery after long attempts to get work comp hearings, but surgery in Denver (flew myself out first after denial from work comp and got two great reports that I needed surgery.)

My doc for surgery was Dr. Annest. He was very professional and competent, and honest - he said he may only get 10% better due to long wait for surgery. But what happened was the TOS slowed down extremely, and then, the RSD left for an entire year.

I believe there is a very big difference between men and women in surgery outcomes, how they got TOS and how the TOS reacts.[/U]

TOS has many flavors - try the advanced search for threads on many symptoms, or main 5 symptoms. My TOS testing thread is complete and tells you all I know about TOS.

Now I fight after work comp judgment - you must not quit or give in. See as many free consults as possible.

I will never work again. I am lucky to have nurses, stable mate, good doctors...I can't write to everyone - I'll hurt for weeks.

But my love and prayers go to all.

Did you mean Intelliskin? Is it this place? http://www.intelliskin.net/

That is correct...sorry for the confusion. I had another flaring episode tonight after I showered...then I realized I hadn't put back on my Intellliskin. I started feeling better immediately after putting it on. I'm going to buy a third shirt as I am wearing them 24/7 now, and having to wash constantly.

I wonder if I had worn the Intelliskin regularly when I was still feeling good if I would still be in the condition I'm in now?

Now that my pain is a little more under control I have noticed that my left side has worsened. Left arm is heavy and grip strength is weakening.

Dr. Fish's office at UCLA still has not contacted me for an appointment for SSEP and scalene block as referred by Gelabert (Dr. G gave me the referral he faxed over and had his assistant call them. I have decided to skip Dr. Jordan and Dr. Fish for now and go see Dr. Ahn.

Dr. Ahn's office has scheduled me for tomorrow morning. Dr. Ahn apparently does the same Ultrasound and scalene-pecminor-subclavius block procedures that Dr. Jordan does, and is covered under my insurance.

I'm looking forward to the appointment and will hopefully gets some relief and answers.

Thanks. Which of the products are you using? http://shop.intelliskin.net/

I wear the POSTURECUE™ V-TEE during the day and the POSTURECUE™ TANK at night. Just be warned that you must raise your arms above your head to get these on over your shoulders. The shirt is very lightweight and just feels like an exercise shirt once you get it on. Shirt can be machine washed but hung to dry.

Hi again
 

I've had tos for about ten years. I am a professional, with several degrees.

I don't want to sound like a pig, herel... But rsd has nothing to do with posture...and if you search rsd or crps, you will see that neuro tos can tip off a skin hot-fire pain for months that is called perhaps the most painful condition of all illnesses.

I have gone through weeks without any, and i mean any sleep. Some of us stop responding because our fingers, hands and forearms puff up, to the point we can't eat, hold a glass, or wipe.

And men and women are so much different... Men get surgery and go on to a modifed type of job where they maybe just talk. Today i went to a doctor's appt. And i am to the point of screaaminggg!

The only thing i can say, friend and human kind, is do not give up. Get free consults. Play it smart. Don't lose your poker face. Advance search my threads also in the work comp section.

It has been the fight of my life, but you will be x age no matter what, so do you want to be x withought help or x with help.

Search my advanced best testing so far.

I cannot give you my name.

God bless you and us as we fight these evil insurance co.s., ok?'

whether politics or not, fight man!

Thanks for this. I'm blessed to have a physician for a spouse and very good health insurance. My neurologist and neurosurgeon (from my ACDF) are also very supportive and caring and have stayed involved with my case.

I went 5-6 days with only 2-3 hours of sleep per night last week. I finally slept 6 hours last night. I believe the trigger point injections, an increase in Pamelor to 20mg, Norco 5/325, and Mobic combined gave me enough pain relief to sleep. I believe Pamelor has provided the same relief I use to get from Cymbalta (had to stop because of tachacardia) with no noticeable side effects.

The symptoms on my left side are getting worse as my hand went into some wierd spasms trying to type this morning. I've also noticed a loss of dexterity when I hold a phone without even raising my arm. I'm beginning to believe that surgery is imminent. I'm hoping to get some definitive details from the ultrasound with Dr. Ahn tomorrow. I'm really looking forward to it.

Dr. Ahn is a butcher and should be avoided at all costs. Of course that is just my personal opinion based on a friends decompression surgery from him, which had to be corrected by another surgeon later on.

I saw Dr. Ahn today.

After a review of my history and a brief physical exam, he believes this is TOS. After just a few minutes with him I felt that he is ahead of the curve vs. the other surgeons in this area. Here is why:

1. He stated that he has now done over 1000 TOS surgeries to date!
2. He stated that he and Sheldon Jordan no longer use the scalene block or Doppler ultrasound for diagnostics due to false negatives (I had a negative scalene block in 2010). Instead he uses fluoroscopic balloon angioplasty to image where compression is taking place as well as decompress those areas temporarily. It made a hell of a lot of sense to me.
3. He no longer holds a preferred surgical approach but plans surgery based on the angiogram. He also stated he does not always take the rib either if it is not necessary. He didn't want to talk specific details about surgical procedures until after the angiogram. I really like this vs. what I thought I knew about TOS surgery in my prior research.

My angiogram is scheduled for 4 weeks from now (hopefully, earlier if there is a cancellation). My pain is no different, but I feel better about my outlook and that has helped me feel better overall.

If you are on the fence about Dr. Ahn or are even pursuing conservative treatment options, I highly recommend you consult Dr. Ahn. I am convinced that everyone should have the fluoroscopic balloon angioplasty before going into surgery with any surgeon. Ahn's bedside manner may be relatively cold and clinical, but he sure seems to know what he is doing.

On a side note, UCLA still hasn't gotten back to me regarding the tests and follow up Gelabert ordered.:confused:

Can you send me a link to your friend's story?

All the complaints on here about Ahn seem to be secondhand, or trolls who post a negative comment and are never heard from again. Do you know of anyone here that has posted about a negative outcome with him firsthand?

No surgeon in this world has a 100% success rate. There is a chance that my surgery won't be a success no matter who it is with. I am sorry for your friend, but I think Ahn has proven his competence with TOS.

Thanks for the heads up, I will continue to research.

Numbers dont matter, outcomes do, I agree there are many reasons why people have less than perfect outcomes for tos surgery. That doesnt change incompetance. That being said, everyone is entitled to choose their own surgeon. Do your reasearch and feel comfortable with whomever you choose.
All the best, and I wish you a good outcome.

nospam: I agree with Tossucks commentary on Ahn.

Due diligence on him. If you feel safe and secure in your decision, then that's all that matters, along with a good outcome.

Nospam: How do you feel the Intelliskin differs from the S3? I was prescribed the S3 and it made everything worse. Guaranteed a vaso-spasm as soon as I strapped it on. It now sits dormant collecting dust somewhere.

I showed the S3 to several PT's and none of them liked the design, especially the strapping which runs over the collarbone. The TOS surgeon who prescribed it to me said it was the downfall of the garment, yet thought it would still be beneficial. Although the Intelliskin looks of better design, the ribbing which comes over the shoulder and down over the collarbone harkens of S3 misery. Do you feel downward pressure in this area when you wear it? Thanks.

The S3 brace was useful for one thing. My postural muscles in the back were completely asleep 2 years ago. The S3 brace helped me stretch my overly tight chest muscles so I could activate the muscles in my back. Once I had done that, the S3 brace was nothing but trouble. The S3 brace is cumbersome, overly tight, and has that irritating zipper. Even though they "custom" fitted me at Alignmed in Santa Ana the S3 was never comfortable.

When I showed the S3 to the physical therapists, they did not like it (these therapists shared an office with the physician who prescribed it, not a good sign). It just pulls your shoulder back and down. Not only does it do the work for you, its posture correction is not even correct. Another therapist pointed me to Intellishirt, but I didn't try it until much later. Since insurance paid for the S3 brace, I thought maybe they would pay for Alignmed's PostureShirt...they would not.

I pulled the trigger on the Intellishirt when they released the sleeveless tank version (it was called GUN SHOW at that time). I figured this had to be more comfortable than the S3 and it was. I don't feel the stitching at all, it just feels like an exercise shirt (like Nike DriFit). The only problem I have is that neck bothers me a little. I have a thick neck (17.5") and I don't like shirts touching it (I hate turtlenecks!). The posture correction is mild but effective, you can't really feel a noticeable correction but yet your posture is improved. My therapist says this is because the shirt offers a suggestion/reminder but your muscles are doing the work.

I moved to a new therapist last year because my insurance changed. The new place is actually considering selling the Intellishirt. My therapist tried the Eve shirt for women and she liked it. The only downside was that it could be seen under the short sleeved shirt she wore that day, so it wasn't very fashionable. I'm thinking of buying one for my wife (she gets tensions headaches from bad posture when she is stressed). I just wish these weren't so expensive!

When I saw they had a V-Neck for men I jumped on it. Not only is the neck comfortable for me, the postural correction is better than the tank. Stand with your hands at your sides, keep your arms at your side and rotate your thumbs away from your body. Your posture should automatically correct. This is the effect of the Intellishirt (this is also the most effective stretch for my TOS). I don't notice any downward pressure on the shoulder or collarbone. This shirt is designed to be worn by athletes and exercised in, no one would use it if it were cumbersome.

Maybe your therapist can ask for a sample so the both of you can see it in person and try it out? $100 is a lot of money to take a leap of faith (I was desperate, so I jumped right in when my pain kept getting worse).

Are you sure it's not the Intelliskin you're wearing? :wink:

I can't seem to stop typing Intellishirt can I?

Intelliskin...Intelliskin...Intelliskin. LOL

I don't even wear it and I got Intelliskin correct :). Seriously, at this point in the game, what's another $100? lol

Thanks for the good details and comparisons between the two. I've been muddling over something like this, not to wear all the time, but when I'm doing tasks where I know i use the wrong muscles. Maybe if I stopped and thought more before I moved or did a task, I wouldn't be battling the scapula-trap-pec fight for hierarchy.

Cooking is my nemesis. I get so absorbed in chopping, stirring, lifting pots, bending over like a hunchback and doing stuff I shouldn't that I need someone screaming at me "posture", "posture, "posture." This little shirt could be my coxswain or a friend for my retired S3 collecting dust. :rolleyes:

I'll bring a picture to my PT for an opinion.

Thanks for this info. Please keep us posted. I'm suffering in Orange County as well. I find it fascinating that he uses an angio to find where the compression is. Guess it's not just a nerve problem after all --- still think the nerve compression is the primary insult and blood flow probs are secondary to that. When I had my pec minor sx, the doc wouldn't even look at my 10k MRA --- woops.

I am officially on short-term disability from work now. I am going to move forward with surgery. I have seen Drs. Gelabert, Ahn, and Niren Angle. I will see Dr. Roy Fujitani at UC Irvine next week. I plan to select a surgeon by the end of next week. I am already heavily leaning towards Angle...my wife and I really liked him as well as the facilities at St. Joseph's Mission Hospital in Mission Viejo.

I have finally found a Physical Therapy provider near me which specializes in treating TOS. and is accepted by my insurance, Ando & Aston
Physical Therapy in Anaheim Hills. This helps ease my post-surgical anxiety as the people I have found previously are too far to drive regularly and/or don't accept my insurance.

For anyone in Orange County, Melissa Ricker is an amazing Masssage Therapist for TOS:

Melissa Ricker, MT
The Susan Samueli Center for Integrative Medicine at UC Irvine School of Medicine
http://www.sscim.uci.edu/Clinic/melissa-ricker.asp
http://www.sscim.uci.edu/Clinic/melissa-ricker.asp

I am no longer convinced that Ahn's angiogram/angioplasty is for everyone. It is an invasive procedure that has risks and may be unnecessary (this is based on several other medical opinions I've received). I've learned that there is no gold-standard test for TOS, that the diagnosis is mostly clinical. My personal opinion is that Ahn's practice is a surgery mill and his patients are guinea pigs to him. I'm sure he is highly skilled, but I've lost confidence. Drs. Gelabert and Niren Angle were so much more thorough and empathetic (Ahn didn't even look at my brachial MRI films, just scheduled me for the angios). He also wasn't truthful about what Dr. Sheldon Jordan does and doesn't advocate in regards to ultrasound and angiogram/angioplasty.

I have eliminated Dr. Ahn from consideration. Drs. Gelabart, Angle, and Fujitani remain. I'm very disappointed that UCLA still hasn't scheduled me for the tests and follow-ups Gelabert ordered even though I've been reaching out to them to inquire of the status. What a slow moving machine!

Congratulations! Due diligence well done :).

The Eve Intelliskin arrived while I was out of town so I didn't get a chance to mess with it until recently. My initial impression was tiny! I pulled it out of the bag and it looked like it could fit a Barbie. I had ordered a medium based upon their online sizing and 90% of my tops are mediums in my closet.

Once I wrangled it on, I wore it for only 10 minutes. The instructions say to wear it for 30-60 minutes the first time, but TOS has made me not stupid. Live and learn - less is ALWAYS more. Although I liked the overall design of it, the shirt was very uncomfortable, not being able to breathe and loss of your well padded Victoria Secret bra could be a sign the thing is to tight.

Took it to my PT and she too liked the design of it, but felt I would harm myself more trying to get it on and off. The sleeves as well were compressing the life out of my arms and I have thin arms (lack of use will cause wasting of muscle mass :)) Back in the bag it goes and sent back to the manufacturer for a large.

If the next size is correct, I do think it has a drastically better design than the S3, especially concerning the collarbone/rib area. It doesn't address getting the sternum up at the base of the diaphragm, but the scapula design seems well constructed.

Keeping fingers crossed the large will have some potential in it.

That definitely sounds like the medium was too tight. I have relatively large arms, chest, and neck and don't have any discomfort or breathing impairment (I wear the men's XL). I'm hoping the large works out for you. I don't think you are supposed to wear anything under it, even a bra...but what would I know in this regard? My wife wears multiple different women's sizes depending on the brand and the garment. I've learned to always by the smaller of the sizes and let her exchange if she needs to rather than insult her. ;)

I had the unpleasant experience of having to take the IntelliSkin on and off while having an IV in my arm in the ER. With my wife's help I was able to very carefully get it on and off one arm at a time only having to raise one arm over my head. It may take a little practice but the stretchiness of the shirt helps you to maneuver it on if its the right size.

I saw Dr. Roy Fujitani at UC Irvine today. He was very knowledgeable regarding TOS and knew of all the other vascular guys in my area. He was specifically highly complimentary of Dr. Gelabert. Fujitani is definitely a good option if you are in Orange County.

I feel very confident in both Fujitani and Gelabert, however I am not comfortable having surgery in the UC system. The UC system is so slow moving and impersonal for my taste. Tests and follow up appointments are scheduled weeks out and sometimes it is over a week before they even call you with the follow up appointment. I don't any more extra time to navigate the UC system as my employment FMLA clock is now ticking. Also. medical residents are "learning" on you constantly and I fear that they will also be "assisting" in surgery.

I actually had a nice long conversation with Dr. Ahn. He called me after I cancelled my angiogram/angioplasty. I am still very impressed with his technical approach and evolution. He is obviously trying to be a trailblazer and I think he may be on to something. Only time will tell if his peers accept and validate the balloon angioplasty as a more effective diagnostic. I just felt more like a test subject than a patient, and I believe I made that clear to him (I think many surgeons operate like this).

I am moving forward with Dr. Niren Angle. Dr. Angle and Dr. Gelabert were by far my favorites in terms of taking a detailed history but most importantly compassion. Dr. Angle went above and beyond taking genuine interest in my pain management and taking time to make sure he was answering every question to my satisfaction. My engineering background makes me very detail oriented and he was willing to go as deep as I desired regarding his surgical procedures. His confidence and encouragement has truly uplifted me.

Dr. Angle has ordered an MRA/MRV at my request just for my own peace of mind. My MRI in 2010 was without contrast, only in the neutral position, and a 1.5 Tesla. We'll see if a 3T scan with contrast yields any new information.

Marc:

I understand you don't like the UC system, but you may want to consider taking a look at Justin Brown @ UCSD. http://neurosurgery.ucsd.edu/justin-brown-md/

Anne

I've already considered Justin Brown. I'm just not comfortable with seeing a neurosurgeon who only does scalenectomies for this. I skipped Dr. Filler as well and Justin Brown seems to be along the same lines. It appears that Dr. Brown's team offers Filler's MR Neurography. The "The UCSD Center for Thoracic Outlet Syndrome" seems to be for marketing purposes as I believe the vascular guys are better equipped to dealing TOS than neurosurgeons (My TOS is vascular and neurogenic). Niren Angle was the chief of vascular surgery at UCSD until 2010. The fact that Justin doesn't have a vascular surgeon on his team doesn't add to my comfort level. I haven't found a single person online who has had surgery with Dr. Brown. If I was convinced I only needed scalenectomy, I would definitely see these folks as they are covered by my insurance while Dr. Filler is not.

UCSD Center for Thoracic Outlet Syndrome (TOS) and Upper Extremity Pain
Team members:

Neurosurgeon: Justin brown
Clinical neurodiagnostics: Geoffrey Sheean Intraoperative neurphysiology: Jeffrey Gertsch and the UCSD Interventional Neurophysiology Service
Radiology: Afshin Karimi (MRI of nerves), Tudor Hughes (ultrasound of nerves)
Pain medicine: Gregory Polston
Sports medicine: Natalie Voskanian
Specialist therapy for TOS: Carter McElroy
Basic science: Nigel Calcutt, Wendy Campana

Olecyn, did you ever follow up with these folks?

The LARGE Intelliskin arrived the other day and the fit is much better. Took it for a 10 minute test drive and had no vaso-spasms in my right hand. This was an immediate symptom I got while wearing the S3.

The Eve shirt is very long. I can't emphasize that fact enough, so if you are short it may be a negative feature for you. For me, it's perfect! The S3 came above my waist and the Intelliskin comes mid-butt.

I used it this morning to clean out the refrigerator and kitchen. Two tasks which require less than ideal posture. It feels good and brings me back to neutral when I'm done bending and twisting, but 20 mins will be enough for today as I feel some muscle twitching below my scaps.

I will be keeping it as a bottle of Sriracha chili sauce exploded all over the front, so it's now white with many red dots - don't think it meets Intelliskin's return policy anymore. :)

:laugh:
I'm glad the Large seems to be working out for you.

Re-posting this info into my thread for future reference

Hello Nospam
 

Hi I am new here but I have been reading your posts with interest. I am in the L.A. area. I have Ntos. I have seen dr. Williams at Kerlan Jobe who first diagnosed me ,Dr. Filler Dr. Carden and Dr. Jordan. I decided to go with Dr. Jordan even though he is not on my insurance and cash only. He was the most knowledgable most respected and most experienced in TOS. I had scalene block injections and botox injections last week. I feel like I was hit by a truck the pain was so bad for a week after. Now it is calming a bit and I am hoping I can do PT and strengthen the muscles without having to do surgery.I am also going to do myofacial release next week.But Dr. Jordan thinks I should see the surgeonsfor full recovery to be able to get back to work. I am planning to see Dr. Ahn who is in my insurance and Dr. Gelabart who is not. I am interested in the USCD center and am interested in Scelectomy without Rib resection as I dont have any vascular symptoms. Good Luck to you and thanks for any insight!

jkl, welcome!

Vernon Williams was also the Dr. who first diagnosed me. I was able to do the PT he prescribed to strengthen muscles and correct posture but in the end it made no difference. My posture is much improved but my symptoms are worse now. I think seeing Dr. Jordan is superior to Williams in regards to treating TOS. Dr. Williams didn't do much for me in terms of pain management.

Check and see if "Joyce N. Wilkinson, PT, OCS" is covered by your insurance - http://www.pogsonphysicaltherapy.com/contactinfo.html. I was referred to her by Dr. Gelabert and but unfortunately she doesn't accept my insurance. Other members of this forum swear by her.

Dr. Ahn told me he will perform scalenectomy without rib resection in some cases. You will have to endure his angiogram/angioplasty procedure to determine his surgical recommendation. I did not want my ribs removed, but Dr. Angle has convinced me otherwise based on his clinical findings (in a later conversation, Ahn admitted that would have likely been his recommendation as well). If not for Dr. Angle, I would be still be considering Dr. Ahn and Justin Brown at UCSD. I think you are on the right track with Dr. Ahn and UCSD.

If you are willing to go to UCSD, it won't hurt to consult with Dr. Angle. Get as many opinions as you can. www.niren-angle.com

Thanks
 

Yes I am already seeing Joyce. My insurance covers 16 visits per year. She is good, but unfortunately so far it has hurt me more times than helped because my muscles are in such spasm. I just got the botox injections so I will be going back to her for the remainder of the sessions starting next week. After that I will be looking for a chiropracter or osteopath to help me with strengthening (hopefully).

Does Dr. Ahn have to do an angioplasty even if you only have neurogenic TOS?
Is Dr. Angle at UCSD? I have never heard of him.

Dr. Ahn has you do fluoroscopic angiogram/angioplasty before he recommends a surgical plan. He no longer uses scalene blocks or doppler ultrasound for diagnostics and indications for surgery. His logic is that the neurovascular bundle follows the same path so even though you don't have vascular symptoms he will find vascular constriction. He will then blow up the balloon catheter (angioplasty) to open up the constriction which will open up the path for the nerves as well. He says that this should give immediate relief for neurogenic TOS and let him know what surgical approach to take. His peers do not currently share his enthusiasm over this approach as it is an invasive procedure which may not tell you anything that other non-invasive tests do. I believe he is preparing a study and will be presenting at some vascular conference later this year. I ended up having MRI/MRA instead which Dr. Angle believes will show the same results minus the balloon angioplasty. Read through this thread's history to see more opinions regarding Ahn.

Dr. Angle studied at UCLA under Gelabert and Ahn then practiced there. He went on to be the head of vascular surgery at UCSD. He is now in private practice at St. Joseph's Mission Hospital in Mission Viejo. Since I have chosen him as my surgeon, of course I recommend you consult him for an opinion. I spoke to my own neurosurgeon, and he believes the vascular guys are best equipped to treat TOS and I agree based on my own research.

Since you believe you only have neurogenic symptoms, did you get the MRN (Neurography) study developed by Dr. Filler? If so, what did it show? I believe UCSD can perform these now as well. I once thought my symptoms were only neurogenic until my condition worsened and Drs. Gelabert, Ahn, and Angle honed in on the vascular signs. Eventually, I was able to psychologically accept that letting go of the rib was necessary.

I had a EMG/NCS several months ago by my original orthopedist. it came back abnormal but he was confirming a diagnosis of C6 raidiculopathy. Dr. J says it is flawed, I will ask him tomorrow what he means. i had a brachial plexus mri which showed neural edema and the scalene block which dr. j used to diagnose the TOS. i havrnt heard of dr. fillers MRN. he wanted to do the mri scalene block but it costs 3x what dr. J's cost $15,000and dr. J says that the MRI is more outdated then the Ultrasound anyway. Also Dr. F had many bad reviews and several people told me to be careful about using him. I dont know if anyone on this site had good experiences with him.
There is also something called a MAC test that Dr. Sanders espouses and I think there is someone at UCLA that does it.