probable TOS
 

Hello all, first post so I'll start with an introduction.

About 4 years ago I start getting RSI like symptoms on the right side of my body. My back would ache all the way up to the right side of my neck. my right arm would tingle and burn and I'd find it hard to sit in front of the computer or play piano for more than 10 minutes at a time. Anyways, so, I didn't go to a doctor about it. Part of why that is, I read a lot of books about RSI and it seemed there was a lot of unnecessary surgeries and such. I would up just trying to eat healthier and exercise more. I took up swimming for a while. I do bikram yoga now, which may or may not be good for TOS.

Shoot ahead 4 years... I recently said enough is enough. My symptoms havent worsened over the years. Its more of a day to day thing... somedays its manageable, others I cant do much more than lie in bed. So, first I went to a homeopathic doctor which turned out to not be the solution I was happy with. He just put me on a really restricted diet and charged me a fortune. After 3 weeks of the 6 week diet I decided I'd better see an RSI specialist. Not really sure of my type of RSI, but confident that my symptoms sort of matched TOS, I called up a thoracic surgeon in my area. I went in and talked to him and he did a few tests. The most notable was that I held up my right arm and it produced a lack of color or something similar. He sent me to see a neurologist, too, and Im waiting to hear back from him.... The thoracic doctor also gave me a prescription for a MRI and xray. My insurance won't cover it [Im unemployed, but my parents got me insurance about a year ago]... so, I'm stuck with the bill, which will be about $800.

What I'm wondering is if I jumped the gun to quick by seeing this thoracic doctor. I dont have a primary care physician because I just moved to Santa Ana and my old one is far away. The thoracic doctor I'm seeing seems.... well, uninterested and detached from my problems. I felt like I was talking to a wall when I was at my last appointment. He didn't do what I felt was a very thorough analysis. It didn't seem like he really gave a damn. I feel very suspicious in that I am worried he'll just end up recommending surgery which is probably the last thing I'm willing to try [Ive read too many horror stories]...

I'm taking Alexander Technique classes for 2 weeks now. I want to start with a physical therapist... maybe myofascial release or cranio sacral therapy. I think I can get fixed without surgery. Ive experienced moments of "no pain"... if that makes sense. I also notice relaxing and sometimes talking about things that stress me out seem to help my symptoms quite a lot... so that's the whole mind/body or fibromyalgia side of things.

I'm confused. I'm not sure if I should go through with the MRI/Xray or not or if I should use what little money I have to see a PT and posture specialist. Any recommendations or advice would be very appreciated.

thank you,
James

welcome to NeuroTalk, James

things are often quiet here at weekends and early mornings, and so I know the members of this forum will be along soon to respond to your post

all the best

James, there are alot of TOS'rs on this site from CA who can give you info on good doctors to see. I saw a neurologist before a thoracic surgeon. I did have surgery in 2000. I was pain free for 6 years and now a flare up from my own doing. This site can offer alot of information. I am not as knowledgable as everyone else here but you have come to the right place. I'm sure you will get some good advice.

Linda

1. Find a good neurologist in your area. The board has a list. If need be and you can, travel to one that may be a bit farther. It may be worth it.
2. Ask questions of the doctor. He/she is there for YOU. Be proactive. This is a learning experience. You need to understand YOUR situation before you can get help or knowingly consider the treatment options offered.
3. If Physical Therapy is prescribed, ask about the goals of that PT. Again, be proactive and ask questions. You want to understand ALL that your situation entails.
4. Get an anatomy book. Look at the pictures of the structures and tissues in YOUR situation. Find out and learn how they are all interrelated and IF and HOW they may impact YOUR situation.
5. Pay VERY CLOSE attention to your day to day activities. You'd be amazed at something as simple as reaching for a comb may bring all sorts of problems. It may not be the act of reaching, but it may be the WAY in which you are reaching. It is that detail oriented, IMHO.
6. Do not assume that you aren't doing anything to cause this. You may not be, then again, it may be just normal everyday simple tasks. Some things can be corrected and some may not be able to be corrected. Try to understand and know the difference.
7. Know that there is good pain and bad pain. Understand and learn the difference.
8. Try to understand what YOUR pain is trying to tell you IF it is trying to tell you something. Know that in many instances your pain may not be an immediate response to an action but may surface several hours after the aggravating event/activity.
9. Read the posts and thread on this forum. Know that some of it may help you and some may not. We are EACH unique and different. We each have some things in common but what therapy works for one, may not work for another. Hence the comment to get to know YOUR unique anatomy and YOUR unique situation.
10. There are many modalities that have helped people on this forum and many of us are seeking others in an attempt to get cured/relief. Some that have been expressed are: Stretching, exercise, aeorbics, swimming, massasge, acupuncture, chiropractic, ART, Yoga, Hot tubs, Ice packs, and many, many others. There is a list or two on this forum. Check it out.
11. Know that professionals are there to HELP you (if you find competent ones) and that it is a TEAM effort. They are not in YOUR body and thus need YOUR assistance to help you and you need their expertise to help you.

Good luck.

A neurologist is often the primary treating doctor for TOS and will probably give you more attention on office visits.

there are several good ones in LA- check out the doctors list.

TOS will not show up on a normal MRI- so unless you are trying to rule out cervical disc problems, i would skip it.

Dr Jordan does a very nice ultrasound- with or without a scalene block to very accurately diagnose TOS. The ultrasound itself is not all that expensive, and you can Check on the charges for the scalene block (i don't remember, sorry) but it is definitive and might be a lot more efficient route to travel than seeing many docs who don't care or another doc who would send you for the $12000 MRI/MRA that dr collins does. If your insurance won't cover a regular MRI i doubt they'd cover that sucker.

best to get it figured out so you can figure out how to get better. I think Olecyn is in your direction and has found a PT that she likes- maybe she could offer up a name.

Hi James
 

Just want to extend a warm welcome!

It looks as though you've already been given excellent advice. Off the top of my head, not sure I have lots to add, except that maybe the xray would be in order to rule out cervical ribs? (Then again, maybe not absolutely necessary if you were to get a definitive scalene block....I guess Dr. Jordan or whoever could make that judgment.)

If it turns out you can't afford PT, maybe another possibility would be Sharon Butler's downloadable (Hellerwork) thoracic outlet self-care program. I think it's only $29:

http://www.selfcare4rsi.com/thoracic...-syndrome.html

Had to smile/nod my head at your description of the "uninterested, detached" doc....Heck, I think I've seen that guy myself. :winky: Seriously, I think many of us had had similar experiences.

Best of luck, and keep us posted.

Well, I still feel confused. The thoracic doc I went to did send me to a neurologist. I haven't called him [thoracic] back because I am unsure if I need an MRI. An xray seems more justified, but, indeed my prescription says MRI of Cspine [cervical?]...

Alexander classes are interesting. I'm not entirely happy with my first two but I'll stick with it. I'd rather find a good myofascial physical therapist in the Santa Ana area then spend $800 for a MRI... :rolleyes:

I'm not sure what to do right now. I can type. I can get through the head. Theres a dull aching pain in my chest, neck and a burn in my arm but its manageable. I want things to get better, I don't like the idea of waiting another 4 years to get this fixed... :rolleyes:

So, thank you all for the advice. I think physical therapy might be my next best bet, unless I decide to put some faith in the thoracic surgeon I saw.... sigh. :confused:

A good PT who can get you going in the right direction can be very useful- you can then do as much as possible on your own and see them 1-2 times a week for help. It will be cost effective that way. It is useful to rule out cervical spine issues- hence probably the order for the MRI, but if you can find relife with the PT first, you may not need it.

It is somewhat of a gamble either way...if only we all had infinite time and money.

If it is not too much to ask, why will your ins not cover the MRI? Seems perfectly reasonable.

TOS testing to rule out other issues
 

DiMarie: the doctor said he thinks I might have TOS after only 10 minutes and a few questions. He didn't even do a physical examination of me besides gently poking my back for painful spots and making me raise my arms. That's why I am suspicious of him. He was recommended to me from the UCLA TOS department [i found the number for it on the LA RSI group]....

---------------------
johannakat:

Insurance won't cover it because I have a $5000 deductible. Up until then, I think they only cover office visits, some labwork, and medication.... :rolleyes:

exam
 

Hey, James
 

welcome, sorry for the reasons you've found us but sure glad you're here. yes, the thoracic guy sounds like a surgeon alright. won't be much interested in you, either, no doubt, since in all likelihood (and let's keep our fingers crossed it's not TOS in the first place, man!) you're not a surgical candidate. TOS surgery SHOULD be a last resort, unless your sx are (acutely) vascular or you have that rare case of true neuro TOS.

so your best bet really is what your heart is already telling you and you have some excellent ideas. alexander technique, craniosacral massage and myofascial release, etc. be aware that the WRONG kind of PT can not only NOT help a TOS'er but can actually do more damage, james, so you must be very careful. olecyn will tell you, her personal search took her i think 5 years to find the right guy, but she has, and is very happy with him and he is right there in your area... so ask her about her "doc of PT"---:D

as far as a PCP goes, you don't really need one. what you do need is a neuro who specializes in TOS (again, i'm presupposing that dx in your case but just bear with me for the sake of argument here...). i'm going to second what johannakat has suggested and recommend dr. sheldon jordan for you. while i realize there are some drawbacks in that he is located in LA county and does not accept private insurance, james, the fact that he is a pain management dr., a neuro, AND a TOS specialist may give you something to consider... at least as far as getting the dx confirmed goes. for dr. j. is an excellent diagnostician and can perform scalene blocks as well as do botox injections and other therapeutic measures for you down the line if you've an interest in that. or perhaps he could recommend someone in OC to tx you, better still... not exactly non-invasive, some of the things i mention here but still, a far cry from surgery and in reading between the lines of your post i sense that you are suffering so i just wanted to give you some options, that is all.

you also could look into purchasing voice-activated software (dragon naturally speaking is the program for PC users, less than $100 all-in, i think - there's another one for MAC users). sign up for the sorehand list out of ucsf.edu and you will get tons of ideas about ergonomics and gain access to its archives as well (there was some interesting material recently about the difference between playing the piano and computer keyboarding in terms of aggravating RSI which would be right up your alley...).

also, if insurance coverage is an issue (it is for me sometimes) or you do decide to go for posture or bodywork because that seems a better way to address your issues right now, then maybe look into some of the low-cost or free classes offered through the national MS foundation - you do not have to have MS to participate in the national MS society 'being active' program, and by signing up for the 'better living' catalogue i'm told you can get a heads up as to upcoming events and MS programs within your own community. as you know, the national MS foundation is nationwide and extremely well-funded, with lots of public awareness. great programs. so take advantage of that, james.

you really touched on an important aspect when you said how important it is to talk things through. i think emotional support is key. it can be one of the hardest things for a TOS'er to find, sadly, even among medical professionals - there is so much controversy, political nonsense, litigation, etc. and it does such a great disservice to the patient. we just want to get better.

the answers lie within, james. stay close; we need you here! we can help each other by giving information and support. you have the right attitude. and you are very fortunate to live in a part of the country where there are some good treating professionals. hopefully members here can help you find ones you are comfortable with.

i wish you the best of luck. hope you join us! i can tell you've already earned your seat; so pull up a chair, kid...:cool:

alison

awesome replies so far, thank you all. thank you so much Sea Pines 50 for your support, and to DiMarie and everyone. I really need to sort through a lot of options and figure out some sort of game plan. I am very confident I will get things fixed, it's just gonna take some time. I'm already feeling better just talking about it, seeing doctors, doing yoga and alexander... in the past I just tried to ignore it. I hit rock bottom a few months ago and things are getting better and better since I've stopped ignoring ITS existence.

DiMarie: The doctor I'm seeing actually did send me downstairs to a neuro. I had the needles and all that weirdness done to me. I've been ignoring the thoracic doctors calls about why I havent been in for the MRI/xray and the results of the neurological exam. I dunno, maybe I'm being too judgemental against the guy. He was recommended to me from the UCLA TOS department.... I guess where James Collins and Dr. Sheldon are located [see the numbers on http://www.geocities.com/la_rsi/treatmnt.html?200730 ]

Maybe the best thing todo would be to call Dr. Collins or Dr. Sheldon directly to see if they know and can recommend the Doctor I'm currently seeing. I got my doctors number from one of the secretaries there. I asked if they knew of anyone in my area and they gave me the number.

I mean, it's just a complex problem. I don't know if I HAVE TOS... what I have is symptoms that make a match... but, as everyone knows, these sort of symptoms could be related to a lot of other things, too.

On a side note I'm wrapping up a session with an Endocrinologist to rule out Thyroid or liver or Hormonal junk that could cause aches and pains. My blood tests came back and I was pretty healthy other than some low blood sugar, which I guess isn't actually very healthy. My second test was to rule out diabetes which I'll find out about on the 7th. I'm pretty confident the low blood sugar was due to a really restrictive diet at the time... almost exclusively green veggies and raw nuts... which was prescribed to me by a homeopathist, which I'm not seeing anymore!!

:eek:

It's all just craziness. My alexander teacher says I should hold off on the PT until I learn how to "release" as per the alexander method so I can get the full benefit of PT. That gives me some time I guess.

Where is this Ocelyn at anyways, she sounds like she could be helpful :D

I have PM'ed you both - hopefully that will work :)

GREAT idea on the endo work up...!!!!

Jal- you might want to attend the next meeting of the LA RSI group. You may find people to talk with that have first hand experience with many of the practitioners in your area. Luckily you live in an area that has several practitioners to choose from.

Hi there, welcome to our group. I can't be of much assistance since I live on the East Coast, but I'm glad you found us and I hope we can offer you some sort of advice and support. X-rays, neuro, and yoga/relaxation therapies sound like the Road to go, at least until you are given a definitive TOS diagnosis.

Good luck and keep us posted!

Jal
 

Your not sure you have TOS but you know you have RSI?
PM me with your docs name with the exception of Chambi.

1. Get testing done by one of the top docs here to rule TOS or not
2. Get yourself to a GOOD PT. I have been made worse by certain local PT's
3. Stay off of the compooper or piano or work or whatever made your RSI
4. Do cardio, swim, use ice for pain or heat which ever makes you comfy
5. Lay on the floor and open your pecs
6. strength your traps to hold up your shoulder girdle
7. breathe and use Peter Edgelows Protocol if Alexnder is not working
8. Do NOT life, raie arms, pull, grasp, or anything that creates discomfort, additional pain, selling, throbbing, numbness, burning or tingling

Send us your symptoms and where...lots of patients here can help

speaking of ouchy...
timer is yelling at me.
ok bye

Oh. My. God!!
 

ajaklsdjfklasdjfklsdjflsdfl.

turns out my overly judgemental suspicious outlook on doctors turned out to be valid for once. I tore up my MRI/xray prescription and am going to tell Dr. Chambi to himself if he calls up here looking to schedule an appointment again...!

Complements of OCgirl. Thank you!!

__________________________________________________ __________
Friday, September 12, 2003

Oc Register

Neurosurgery chief Chambi suspended

Western Medical Center takes action against doctor with long history of malpractice suits.

By CHRIS KNAP, BERNARD WOLFSON, and WILLIAM HEISEL, THE ORANGE COUNTY REGISTER

The chief of neurosurgery at Western Medical Center Santa Ana, a major center for head trauma in Orange County, has been suspended from clinical practice by top officials at his hospital.

The exact reason for the Wednesday night action by the hospital's Medical Executive Committee was not made public Thursday. Dr. Israel Chambi Venero has been accused repeatedly of malpractice, unnecessary surgery and incompetence - all of which were detailed in an Orange County Register investigation in May.

Hospital spokesman David Langness said the results of the hospital's investigation will be sent to the Medical Board of California, as required by state law.

Chambi's suspension comes at a time when the hospital's parent company, Tenet Healthcare, is under investigation by multiple federal agencies examining allegations of illegal kickbacks to doctors and unnecessary operations by high-volume surgeons. Last week, the U.S. Senate Committee on Finance said it, too, is investigating Tenet, and it told the company to hand over any documents regarding its relationship with Chambi.

After a full investigation, the Medical Staff Executive Committee (MEC) of Western Medical Center Santa Ana voted to summarily suspend Dr. Israel Chambi’s clinical privileges effective September 10, 2003. The summary suspension shall remain in effect until Dr. Chambi fully meets numerous conditions set forth by the MEC

Chambi would not comment. His attorney, Michael Zuk, said he was surprised by the hospital's action.

"That's the first I've heard of it," Zuk said. "Dr. Chambi has gotten nothing from the hospital."

The hospital committee set out conditions that could allow Chambi to return eventually. However, one medical expert said the conditions can be so onerous - involving extensive medical and ethical retraining - that doctors seldom come back.

Western Medical Center has hired a professional search firm to find another neurosurgeon for the hospital. In the meantime, trauma coverage at the hospital is being handled by other doctors.

In the Register's stories, patients and their families described how Chambi persuaded them or their loved ones to undergo brain or spinal surgery that left them severely disabled. In some cases, other doctors reviewed the records and suggested surgeries should not have been performed.

Chambi has been sued 36 times for malpractice or wrongful death since 1992. He won most of the lawsuits. But 10 patients obtained verdicts or settlements totaling $3 million. Four cases are pending. Chambi also lost his teaching post at UCI after doctors there accused him of incompetence and poor judgment.

But Western Medical Center, the flagship Orange County hospital for the Tenet Healthcare chain, made Chambi chief of neurosurgery in 1998.

On Thursday, former Chambi patients and other neurosurgeons applauded the action by the hospital but said it came much too late.

"It should have been done a long time ago," said Tim Kling of Fullerton, whose mother, Frances, suffered permanent brain damage after an operation by Chambi. "Too many people suffered because of him."

A Register analysis of public records found that Western Medical billed $38 million for neurosurgeries in 2000 and had the highest per-patient charges in Southern California.

"The action by the hospital's medical executive committee is certainly appropriate in the context of the numerous well-documented deficiencies of Dr. Chambi over several years," said Dr. James Doty, a San Francisco neurosurgeon who has reviewed a number of Chambi's cases and is scheduled to testify against him in a trial this year.

"It is unfortunate that the peer-review system requires a major investigation by a news organization before such action is instituted," Doty said. "The delay only confirms my belief that major financial producers for a hospital are not closely scrutinized."

A letter to Trevor Fetter, Tenet's acting CEO, from Sen. Charles Grassley, R-Iowa, chairman of the Senate Finance Committee, shows scrutiny is coming. He asked for documents pertaining to Chambi's compensation; office space, equipment or services provided to him by Tenet; and any reports or audits of him, including anything "regarding unnecessary medical surgeries and procedures at Western Medical Center."

The committee has oversight for Medicare and Medicaid. The federal government warned Tenet last week that Redding Medical Center could be kicked out of Medicare.

"The investigation itself, though focused primarily on the Redding facility, is really a broad-brush look at Tenet and its corporate governance practices," said Jill Gerber, Grassley's spokeswoman. "The situation with Dr. Chambi presents another hospital under Tenet's control where similar allegations have been made.

"Senator Grassley is particularly concerned about the type of peer review Tenet is doing or not doing and whether the company is prohibiting the peer review of these doctors with the goal of keeping them in place and keeping their high billing practices for the company."

Langness, the spokesman for Tenet, said the company follows the law with regard to physician payments.

"We have a team of attorneys who make sure any payments to physicians are within the law," Langness said.

Added Zuk, the attorney for Chambi: "The U.S. Senate is fishing for financial inducements, but Dr. Chambi doesn't have any. They never gave him a penny. They are looking for stuff like that, but none of it exists."

Zuk also said he received a notice from the Medical Board dated Sept. 2 saying that its investigation of Chambi was completed and that there would be no further action.

But Candace Cohen, a spokeswoman for the board, said Thursday that Chambi remains under investigation and that the board will scrutinize closely what it's sent by Western Medical Center's doctors.

"If information is brought to our attention that a physician is an imminent danger to the public, we will seek an interim suspension of his license."

CONTACT US: (714) 796-2240 or cknap@ocregister.com

Yikes
 

This is unbelievable- kickbacks to drs. and unnecessary surgeries?! There was a dr. in the Houston area (ortho) who lost his license and has 60 something lawsuits filed against him for doing unnecessary spinal surgeries and many people came out much worse than before they went in. There's a website for Texas where you can look up any dr. in the state and see if their licenses are up to date and whether they've been sued,etc. I don't know about other states but they'd probably all have the same kind of thing.

red..i'm in texas too...do you have that link? if so..could you post it or pm it to me? :hug:

Oh My God!
 

Thank goodness you found out this information now and not later. That is one reason this site is helpful. Sharing of information can lead to each of us researching a little further. Linda

Hi Curious!
Will do- just need to go "dig" it out....I'm pretty sure I cut the clipping out of the newspaper at the time because I wanted to make sure all of the drs. I was going to weren't on it.:eek: