New Member Intro
 

Hello,

My name is Teresa and I wanted to introduce myself to the group.

I have been recently diagnosed with Bi-lateral TOS.

I am here to try and learn more about this syndrome and what more I can do to try and manage my pain and get back some quality of life.

My story is probably similar to yours it includes but is not limited to daily pain, Job loss, depression, and major frustration trying to figure out what is wrong with me.

I take daily pain meds, muscle relaxors, and anti-inflamatory's.
I have done multiple tours of duty to Physical Therapy, acupuncture, chiropractic, and massage. I also wear a Spinal Q brace from 2-3 hours a day. All have some benefits, however they are fleeting and the pain returns when I try to get back to a more active lifestyle.

I am now in limbo waiting on a bi-lateral MRI of the brachel plexus (sp) as I am being told I cannot move forward with any shots until they have the images.

I would really love to here back from any of you as to what has worked for you and how you are managing your pain.

Welcome. I'm glad you found us. I wish I could say what has helped me but I haven't found it yet.

I just wanted to say hello. I hope you'll find support and useful information here.

Kelly

Hello tat
 

Welcome to Neuro Talk. You will find alot of information and help here. Many have TOS, and you will the get the support you need to find good therapies.
I hope in your case, that some resolution can be found. I wanted you to know that people on this site do care. Glad you found us. ginnie:hug:

It helps to have people understand
 

That have the same issue and can understand what you are going thru so I am glad you all are here and I thank you for your response and your welcome.

It's great that you get some benefit from the various therapies you've tried. If the pain returns when you try to resume a more active lifestyle, perhaps you would benefit from taking it slower. I think it's pretty common among the people here that we sometimes rush ourselves because we want so badly to reclaim our lives. It's always beneficial to really listen to your body; if something causes pain, stop doing it if possible. There's no muscling through TOS.

How long have you had TOS? How did it develop?

Retake care,
Kelly

rushing yourself
 

i so agree about not rushing! i broke my neck when i was 18 and i was in such a hurry to get back to my old self that i think i just hurt myself even more!!!! i now know exactly how important it is to take things slow!!!! and everyone here is so helpful!


QUOTE=kellysf;922593]It's great that you get some benefit from the various therapies you've tried. If the pain returns when you try to resume a more active lifestyle, perhaps you would benefit from taking it slower. I think it's pretty common among the people here that we sometimes rush ourselves because we want so badly to reclaim our lives. It's always beneficial to really listen to your body; if something causes pain, stop doing it if possible. There's no muscling through TOS.

How long have you had TOS? How did it develop?

Retake care,
Kelly[/QUOTE]

Hi Kelly,

Thanks for your suggestions and you are right I am learning that I cannot tackle what I used to all at once, I have to do things little bit by little bit and rest.

It is hard to say how long I have had TOS as I can look back over the years and see where the odd pains that I had were probably related. It was originally brought to my attention that I may possibly have TOS about 1 year ago and more formally diagnosed in Aug of this year.

I was told by the Doctors it probably developed due a few factors.
1. Several years ago I had a bad car accident when I cut my head literally half way off and my muscles and nerves were sewn back together.
2. Broken Clavicle that mended incorrectly from the same accident.
3. Long neck, droopy shoulders apparently makes me more prone.
4. Chronic Stress, depression and bad posture.

How long have you had TOS? What type do you have and how did you developed yours? Also curious as to what your major symptoms are.

Let me know when you get a chance and again Thank you for your post and suggestions.

Teresa

Hi, Welcome to the forum. I am glad you found this site. Everyone here pretty much has similar symptoms if not the same exact history of how they got TOS.

My motto is when you are feeling better is when you land yourself in pain again by trying to reclaim your life as it was before.
So remember all the do's and don't do's that you have figured out for your body, that keep you out of pain or make you go into pain.
( Somehow, remember them all the time!) That helps me a lot:) Also, my surgeon once told me that once you have TOS, and even if you are recovering well, you will always have about 20 percent of TOS all your life, so you always have to be cautious. I take that advice seriously as most of us TOS er's are hypermobile and go out of range easily and therefore go into pain easily.

Also if you put a general area where you live, it helps everyone recommend someone, since most people on this forum are very helpful and very knowledgeable and will guide you to the right PT or specialist to help you if they can. I have benefited tremendously from all the local people in Ca who have guided me in the right direction. I would have headed for another surgery, if it wasn't for them. God bless them all and everyone on this forum.:grouphug:

Theresa,

My TOS developed while I was working as an attorney. It was a very sedentary job but I was only working 3 days a week, so my story is kind of atypical. My symptoms began gradually. I have all the usual symptoms above the naval plus chronic headaches and frequent migraines (about 10 a month lately).

I had surgery with James Avery in SF almost 8 years ago. I developed scar tissue on my Brachial Plexus following surgery (shown on an MRI I had 8 months after surgery). Now I'm a chronic pain patient using Hydromorphone daily which helps some but not enough.

I'm glad you found us.

Take care,
Kelly

Hi Teresa,
Sounds like you got a quadruple whammy for TOS...:(

Did the PTs , DCs, etc, do any manual trigger point work, massage, low level laser therapy, e stim, rib mobilizations, posture/body work?

I also got these things for at home use

Digital IF stim & fist had a dial EMS stim - digital controls are much easier and no accidental bumps to a higher level like with a dial adjustment.
IF stim is less prone to give zaps/zingers.

Far infrared heating pad

foam roller/ Swiss exercise ball

tennis balls for floor or wall trigger work

Most of us do have to adjust our lifestyle & activities.
I know it mentally takes a lot to readjust & come to terms with it, but it's better to avoid those flares and sometime later on, you slowly can take baby steps to more activity.

Many of us have gone thru the 5 stages of grief, with any significant loss we tend to go thru those..

Hi Jo*mar

Curious to know if you recall any members on the forum that have experienced facial numbness on their operative side that starts acting up when laying down and as a result even when getting plenty of sleep creates aching type pain and when rising in the morning feeling just awful dizzy/lightheaded & nauseous and great fatigue throuhout the day. This is now occuring 20 months post op in addition to neck & chest tightness & BTW I can only sleep on my non-operative side only as when I sleep on my operative side I get almost a choking feeling which in turn brings on coughing and more pain.
I also have had shortness of breath quite a lot post surgery which has been very slow in improving....now mostly with exertion. I have been told that with phrenic nerve injuries it takes a long time even when it heals that the diaphragm takes time to get stronger to move as it should......also curious to know of others who have this problem.
Can this be scar tissue creating compression on nerves, etc.? and have others who also have experienced these symptoms found any answers?

chloecasey

chloecasey, Many have had TMJ sx w/TOS, I don't recall anyone mentioning facial numbness or symptoms like that.
You could try a forum wide search (link in my siggy) for posts about that, make sure the time frame goes back to 2006 the forum start up year.

Jo*mar

Thanks for responding....I don't have TMJ at all.
Forgot to mention that I had Horner's syndrome (operative side eye) that still is evident especially when fatigued.....another symptom of injury to the sympatheic nerve chain, as is the phrenic nerve.

chloecasey

Hi Stos,

Thanks for your welcome. I live in the Los Angeles area and think I have a pretty good team of help at the moment, but am open to any/all new suggestions.

My goal is to get back to work so anyone that can help me get there I am good with. I was in Sales when this hit, and it became impossible to drive for extended periods, sit for extended periods and the stress of the industry I have been in for about 20 years brought on more pain. I have been out of work for almost a year and really would like to get back to something.

Out of Curiosity what do others do for work out there that does not aggravate their symptoms?

Thanks Kelly,

Everyday is a new and different experience. Sometimes the regular pains I have subside, only to have new stuff. This is the oddest thing I have ever gone thru.

Are you able to work at all?

Hi Jo-mar,

Thanks for your response and all the suggestions. I have done all of those therapy's at one time or another, all seem to give some relief, however fleeting.
Some bring on more pain and issues, but I still keep doing them. The best relief I have had is with the Spinal Q brace, it lessened the pain in the scapula and shoulders to a manageable level, however did not take care of the neck pain and arm and finger(s) pain.

I want to avoid surgery at all costs, and I am wondering if you or anyone else have had any experience or success with shots like botox etc?

Teresa,

When this all started I felt like my doctor was looking at me like I was nuts. Every time I saw her I had a new ailment.

I haven't been able to work since I went out on what I thought would be a two month leave (that was in Feb. 2003). It's been a huge adjustment to go from a busy person who got to use my brain to one who spends most days leaving the house once a day for a cup of coffee.

Take care,
Kelly

Hi Kelly,

I relate to all you are saying and my heart goes out to you. It has been difficult for me as well to go from a very busy person to basicly a pile of rubble.
It has been a very rough year physically, mentally, and spirituality for me. I lost my Dad, my Mom is terminally ill, lost my job and my health all in 6 months time....it has definately taken a toll.
I am hoping that I can get back to some form of work soon, it is difficult when you don't know day to day what your body is going to do.

You are so Lucky you are in L.A.
 

Hi Teresa,

If you are in the L.A. area, You are very lucky as Ando and Aston physical wellness therapy is in Anaheim Hills. Dr. Art Ando and Dr. James Sposa are very highly specialised and know TOS very well. I travel from Northern Cal just to see them. I highly recommend them unless you are seeing them already! They truly are masters at what they do. They will teach you how to be able to sit, maybe mobilise your ribs whatever is needed and help you with getting better, they can just see and feel whatever is not right in your posture, your musculature, any myofascial issues and have ways to fix it. It was the most thorough evaluation I have ever had. Their exercises are helping me a lot.
www.andoaston.com, Phone (714) 974 0330.

I also do Peter Edgelow's diaphragmatic breathing routine which I learnt here in Northern Cal along with the L.A. therapy exercises. Any Abdominal Breathing is so important to help you relax and feel more in control than out of control and there is so much more to it when you have TOS. It reduces the compression on the nerves and vessels.

I also believe in doing cardio almost everyday for 20 to 30 mins atleast to warm up those muscles, essentially breaking out in a sweat. Just walking or whatever form of cardio that does not aggravate symptoms. No incline,no swinging arms etc.

I have never benefited from any kind of shots, always got more injured, so please research and study it properly before you go ahead with them.

Qs. What kind of bilateral TOS do you have? Is it mainly neural? Who did the diagnosis?
Qs. Are you taking any nerve medication like Gabapentin/neurontin?

also in L.A.
 

Hi I am in L.A. too-I am having the same trouble trying to go back to work. Take a look at my response to Tic2 and also search my thread JKL's journey or how I am seeing all the dr's in L.A. I would like to compare notes and find out who your "team" is. I recently tried to work part time after a year but dont know if I will be able to go back to my regular job.

My deepest sympathies on the loss of your father, and your mother's illness.
:grouphug:

************************************************** *****



If you are taking rx'd pain meds, have they added an anti depressant with it?
Often the combo will work together to lessen pain levels.
Of course meds won't fix the TOS, but you might feel a bit better to deal with symptoms and such.

Jo*Mar,

Thank you for your condolences.

I am on depression meds and have been for many years.
For the most part they seem to do the job, and leary about changing anything up in that area right now. Thanks for the suggestion though.

Teresa,

I'm sorry that you've had to deal with so much simultaneously. I'm overwhelmed just dealing with how I feel let alone what you've been dealing with. I hope you'll find some comfort here.

Kelly

Hi JKL,

I read thru your story and now am not sure about some of the folks I deem my team.

I am going to give you a little more history about me.

TOS was suspected by my Spine Dr. Along with. Herniated disc C/6-C7 and mild cubital tunnel in my right elbow.

Spine Dr kept sending me to various therapy's but never really explained TOS. I really thought I was more dealing with the herniation then the TOS and set the TOS aside.
The therapy team I am happy with is
Playa PT- Aaron Willis
Synergy Chiropractic- Dr. Dilo
Dear friend of mine who is a massage therapist and learning trigger point
After all these guys got me to a certain point and the pain continued to return I started to seek out more info about TOS.

I went to Dr. Gelabert at UCLA, he is the one who diagnosed the bi-lateral TOS and he sent me to Dr. Willams with Kerlan & Jobe.
Dr. Williams ordered a Spinal Q brace and a bi-lateral MRI of the Brachiel Plexus. The brace came, and it works great, it takes care of the scapula and shoulder pain that has plagued me for over a year. It did not take care of the muscle pains in the neck.
My insurance company did not want to approve the MRI until they spoke with Dr. Williams as to why it was needed. Dr. Williams did not talk with the insurance company and it was going on over a month since the MRI was ordered so I solicited the help of my Spine Dr. Since they are in the same group. My spine Dr. Got the MRI approved which I had last week and I am due to see Williams this coming week.

I took some time and read thru yours and others stories that reside in the LA and OC area and now I am Leary of Dr. Williams. I thought he was the right guy since Gelabert sent me to him and Gelabert from the research I had done seemed to be the TOS guy.

So now I am a little lost and thinking that Willams is not the right guy. I am still going to keep my appt with him next week as I want to see what he has to say as well as address the lack of follow thru on the MRI.

Most of my pain has been the neck, scapula, shoulder and upper arm region and affects the left side more than the right.
Within the last 3 weeks or so I am noticing some weird issues with my hands, arms and fingers. What I get is mild burning down the arms, itchiness, swelling, and what feels like my nerves are sitting on top of my fingers as if I hit them on a counter it is painful....not sure if this is related to TOS or not...it sounds like it from what I have read.

Sorry for the lengthy reply....I am now just so lost with this thing. What I thought before I joined the forum was I would get some shots that Williams mentioned and my life would turn around, and I would put and end to this mess, but after really reading thru the posts, the onset of the new symptoms I am in a lot of fear.

Hi STOS,

Thank you for the suggestions, I am starting to realize there is a lot more to this TOS than I originally thought.

In regards to your questions
Please see my reply to JLK626 on the Dr.'s who diagnosed this and whom I am dealing with.
I do not take any nerve meds, up until recently I really did not have any constant never type issues that I was aware of.

Dear Tat,
I am sorry you are more confused after reading my thread. That is not the intention. I also went to Dr. Williams and I am grateful that he was the first dr to diagnose TOS .I also have a bulging disc at c5-6 and it is still questionable whether that is the cause of some of my pain. I have similar symptoms as you do but also occaisional nerve pain. I just didnt feel like there was any communication with dr. williams and nospam had the same reaction. He wasnt answering my questions and I had to ask him for the scalene block as I had already gone thru 8 months of PT and Chiro. I wasnt comfortable with the interface between him and the surgery center even though it would have been covered through my insurance. One problem was that they couldnt tell me if it would be him or another Dr doing the injections.

In the meantime I had gone to see both Dr. Jordan and Dr. Filler and got confirmation diagnosis. Dr. Williams trained with Dr. Jordan. After meeting Dr. J , I decided to use him as my primary Dr, but I also see Dr. Aufiero at Orthohealing who is fully covered under my insurance and only now see Dr. J for things that no other dr. does.I may be having a diagnostic epidural with him to find out once and for all if the disc is problematic. At one point I had called Dr. Miller but canceled my appt after I found Dr. J. so I dont know him. The VERY best thing I have done is going to O county to see Dr. Ando. He has been the most help. I am about 60% better but still not able to go back to work as i use my arm and shoulder and it is a Repetitive Strain injury

The bottom line is you need to feel comfortable with your Dr's. and if you do then please dont let my experiences change your mind, but a 2nd opinion is always a good thing. I think you should follow up with Dr. Williams after the MRI and see what he tells you and if you are not happy with him, then you might try Dr. Jordan. Does Dr. Williams do Botox injections? It is interesting that Gelabart referred you to dr williams and not Dr jordan since they work together at UCLA and wrote a paper together. Maybe it has to do with insurance. Dr. J doesnt take it and you have to submit it ourself and it can get expensive but it was worth it for me.

It is also interesting that Dr. W prescribed the spinal Q as he only prescibed for me the alignmed shirt of which he has a stake in the co. The spinal Q is much more superior. Dr. Aufiero prescribed for me it much later.

Who is the spine dr. ? I am also looking for a good Massage therapist and good chiro closer to home . Maybe you can recommend your friend. What does the chiro do ? Also what drugs work for you. I have tried Relafan, Celebrex, Flexeril and Tramadol. I dont like any of them and none of them seem to work very well. I havent tried Nuerontin Dr. Aufireo gave me some compounded creams some of those ingredients which I am trying now.

Sorry this is so long too. Where in L.A. are you? I'd like to talk more, but too much typing isnt the best. I will pm you and maybe we can talk by phone. Take Care,JKL