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


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Old 03-10-2012, 07:21 PM #21
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Are you sure it's not the Intelliskin you're wearing?
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Old 03-10-2012, 07:49 PM #22
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I can't seem to stop typing Intellishirt can I?

Intelliskin...Intelliskin...Intelliskin. LOL
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Old 03-10-2012, 08:11 PM #23
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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.

I'll bring a picture to my PT for an opinion.
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Old 03-11-2012, 12:55 PM #24
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Quote:
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.
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.
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.
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Old 03-14-2012, 02:47 PM #25
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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
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Old 03-15-2012, 04:10 PM #26
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Originally Posted by nospam View Post
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.
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!
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Old 03-15-2012, 07:33 PM #27
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Quote:
Originally Posted by nospam View Post
I have eliminated Dr. Ahn from consideration.
Congratulations! Due diligence well done .
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Old 03-22-2012, 08:28 PM #28
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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.
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Old 03-22-2012, 10:28 PM #29
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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.
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Old 03-22-2012, 11:22 PM #30
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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.
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