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Advice for Fellow TOS Sufferers

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    Advice for Fellow TOS Sufferers

    Although I am not a regular visitor or poster to this site, I wanted to share some of my experiences and provide some recommendations for my fellow TOS suffers. The post is long, for which I apologize, so although I hope you read this, if you want to skip my ramblings and get a quick summary, scroll all the way to the final paragraph.

    I have been quite fortunate to have been guided by some great doctors and medical professionals, over the years, as I have battled with TOS. I understand completely that my experience may not at all be typical, so with this in mind, I wanted to share some information and my experiences, in the case that it may help reduce someone’s struggles with this condition.

    In full disclosure, I still struggle with the symptoms and limitations of TOS every single day. However, the great team of medical professionals on my side, help me deal with these issues, and it makes the world of difference in managing my condition and in improving my quality of life.

    One of the biggest challenges with TOS is that with it being a relatively unknown condition and a syndrome with so many wide ranging symptoms, medical professionals either don’t know very much about it or they typically confuse the symptoms with that of other conditions. Many of us are either misdiagnosed, ignored, or looked at like we are crazy. I have gone through all of that.

    The first thing I would recommend is that everyone go on the website The website was put together and maintained by Dr. James D. Collins of UCLA. Dr. Collins is a Radiologist and a TOS expert (huge understatement). I definitely recommend reading as much as you can on his website, since he breaks down the basics of the condition, common symptoms, overlooked symptoms, and the anatomy involved in TOS.

    Although many of the discussions on the site are very technical and feature anatomical references and medical terminology foreign to most laypeople, I highly encourage everyone to make a full faith effort at reading as much of it as possible and trying to understand the fundamentals of why many of us suffer from TOS. The site also features many of Dr. Collins’ medical publications for those wanting more detailed and in-depth discussions of TOS. His work has been published in a wide range of medical journals, and for those feeling adventurous can be found at: Only registered and activated users can see links., Click Here To Register...

    Dr. Collins has also compiled a list of medical professionals, knowledgeable about TOS, who he recommends, across the country. The list features both surgeons and non-surgeons. This list is extremely helpful in guiding anyone who suffers from TOS with finding medical professionals to form a support team to deal with the many symptoms and limitations arising from TOS. I have personally seen three of the surgeons on the list, from California, and four of the doctors who don’t perform surgery. The medical provider list can be found at the following link: Only registered and activated users can see links., Click Here To Register...

    It is not to say that there are not other doctors who specialize in that condition. The list is not all inclusive, but is comprised of the ones Dr. Collins is familiar with and recommends.

    It is of the upmost importance to see doctors like the ones on the list, if possible, since going to other doctors who are not very knowledgeable in TOS may end up being a waste of time or may result in unnecessary continuation of suffering or incorrect procedures and surgeries being recommended or undergone.

    In my experience, diagnosing TOS is done through a combination of clinical examination, certain provocative tests, evaluations of medical history, and diagnostic imaging, such as MRIs or ultrasounds. While many of the doctors on Dr. Collins’ list conduct some of these evaluations, many of them refer their patients to Dr. Collins for imaging studies to confirm or rule out a TOS diagnosis.

    Dr. Collins has been performing TOS related studies since about 1985. Although these are not the only imaging studies he performs, it is his specialty. For me and for many of the medical professionals familiar with his work, his studies are second to none and a vital component to a proper TOS diagnosis.

    I was initially made aware of Dr. Collins and his work during a discussion with another absolutely terrific doctor who specializes in TOS, Dr. Ernestina Saxton. Dr. Saxton is a Neurologist and just an incredible person. She recommended studies with Dr. Collins, which I was fortunate enough to eventually have.

    Dr. Collins is extremely thorough and sees a very limited number of patients. He has a waitlist, with people waiting months to see him. The experience of sitting with him to review your studies can be overwhelming, due to the incredible flow of information, but it changed my life in helping me understand my condition, what it was that was causing it, and the reasons why I felt the litany of symptoms I felt.

    Like Dr. Saxton, Dr. Collins truly cares about the well-being of his patients and often spends hours meeting directly with his patients to discuss his findings, tips, and to ensure that patients walk away armed with the tools necessary to be their own best advocate as they navigate trying to obtain the best medical care necessary to manage their TOS.

    What I mean about being their own best advocate is that he wants to share as much knowledge as possible about TOS and provide access to resources so patients continue to learn about TOS. The hope is that patients are able to become experts in their own condition, effectively communicate with the medical professionals they are treated by, and to make sure that they don’t fall victim to well-intentioned doctors unknowledgeable about TOS making erroneous diagnoses or recommending incorrect procedures or treatment.

    Dr. Collins not only directly oversees the MRI/MRA/MRV of the brachial plexus with the MRI technician, he meets with you afterwards, and gives you his contact information, in case you have additional questions or concerns. He is definitely not your typical Radiologist. I have unfortunately had many MRIs over the last 15 years or so, and I never met a single Radiologist prior to this or had one personally discuss my results.

    I originally saw Dr. Collins in September of 2009 and since then, I’ve had the opportunity to share hours with him over the years, asking questions and picking his brain. Without a doubt, he is one of the main reasons why I finally received an accurate diagnosis, was able to finally understand what it was that was wrong with me, and to have my disability recognized by my employer and even the Social Security Administration for disability purposes.

    Part of what is incredible about what Dr. Collins does is that he doesn’t present an opinion to make a point or a diagnosis. He presents and displays actual anatomical findings from the MRI/MRA/MRV images taken in order to provide the evidence necessary to back up a diagnosis with FACTS. He doesn’t tell you that he believes something but he actually points everything out in immense detail, that which he sees as contributing to your condition.

    It is extremely hard to just brush off his findings or overlook them, if he finds that you do in fact have TOS, since as previously mentioned, he is extremely thorough, detailed, and an expert in human anatomy. He was even recognized with the Honored Member Award of 2017 by the Clinical Association of American Anatomists.

    If possible, get out to see Dr. Collins. He’s a young 86, extremely passionate about what he does, and one of the more interesting persons you will meet. If you can get out to UCLA, get on the waitlist. You can’t call directly though. You have to be referred by a doctor. That doctor can be one of the ones on the list on his site or one of your existing doctors, willing to make the referral.

    I will emphasize that you should insist that only Dr. Collins perform your studies. The referring doctor should state this on the referral. Even then, the scheduling department at UCLA may offer, on multiple occasions, to have you see another radiologist who does the “same studies.” You will be offered almost immediate appointment availabilities with this other doctor. DO NOT consent to this in any way. The doctor they talk about is a Dr. Villablanca. To be frank, it is only the same study, in name.

    I can’t profess to have the medical knowledge to judge Dr. Villablanca’s medical expertise, but I had studies performed, which he reviewed and reported on, and there is no comparison to those done by Dr. Collins. I say this as politely as I can but avoid having him be the doctor performing your studies. For me it was a complete waste of time. Although there were plenty of MRI images taken for Dr. Villablanca to review, in my opinion, his report was far too brief, not detailed enough, and made far too few references to anatomical landmarks when compared to the report put together by Dr. Collins. I complained to UCLA about this, but have no expectation of anything really coming from the complaint. I certainly would not have other studies for my TOS related issues performed by Dr. Villablanca. I wouldn’t hesitate waiting as long as it took to see Dr. Collins and I recommend you do the same.

    The fact of the matter is that there is a very stark contrast between the work Dr. Collins does and the work of almost any other Radiologist. Dr. Collins has a saying that “you only see what you know,” with regard to studying and reviewing radiological images. Dr. Collins knows so much about human anatomy and in particular has so much knowledge of TOS that he produces 10+ page reports on his findings. The reports point out in great detail, every muscle, nerve, atery, vein, etc affected by your TOS, if that is what he finds. He’s very honest and frank, so he won’t sugarcoat his findings. He will tell you exactly what he sees, nothing more, nothing less. I could go on and on about Dr. Collins, but I will sum it up by saying that he’s the best. Get in to see him if you can.

    To follow up on something mentioned previously, I see a team of medical professionals that have been critical to my care over the last 13+ years with TOS. I see my neurologist, a pain management doctor, Dr. Collins, a physical therapist, an acupuncturist, a massage therapist, and a surgeon. I really don’t know where I would be without all of these people, and many of these contacts either came from Dr. Collins or through someone on the list compiled by Dr. Collins.

    Despite still struggling with TOS every single day, and having to work terribly hard at all times to manage my condition, I am happy to at least have an accurate diagnosis and knowledge of the things that I can do to take back some of my life.

    In summary, If you have TOS or think you might have TOS and want to learn more about it, go to to read up. Then, while you’re on the site, if you need a doctor or doctors to see for treatment of your TOS, look for the link for doctors and medical professionals recommended for people with TOS. Among the doctors you should see, find a way to get referred by your doctor to see Dr. James D. Collins at UCLA to have brachial plexus imaging done. You may be offered to have another doctor perform or review the studies, but you should not agree to it. Insist on only seeing Dr. Collins, but understand that he does have a wait list and it may be a while. Despite claims of other doctors performing the same studies, especially at UCLA, it is not at all true. Dr. Collins’ studies are on an entirely different level from that of his peers. He has focused almost exclusively on these studies since 1985 and is extremely knowledgeable about TOS. Whether you end up having surgery or decide to go with conservative management, if you are diagnosed with TOS, you are going to need a team of medical professionals to guide you and treat you, so make sure you see people like Dr. Collins who really know TOS. I hope this is of some help to someone.

    Although it would be nice to have a team of professionals I only have the VA.

    Although I have a great doctor the VA has it own way of doing things and one of the things is taking all of us with Chronic pain off our opioids. I am so messed up now that I'm not sure how much longer I'm going o survive.

    I've had TOS for over 30 years now. I was diagnosed by Dr. Annest who is a founding member of the Vascular Institute of the Rockies. I was diagnosed with complex TOS.

    I know there is nothing any one else can do but I wanted to thank you for your letter. I used to post under Charli and FTMCWAC.

    I'll try to stop by more often.