TOS. Upcoming surgery. Terrified. And HI!
 

Hello, all.

I have been suffering from TOS (and possibly Pectoralis Minor Syndrome) for about 3 years now. I am all too familiar with the doctor shuffle, the frustration, the chronic pain, the mental stress, etc.
I have been out of work since January - when my doctor finally acknowledged that the 8+ hours per day sitting at a desk, using a computer, needed to stop. Worker's compensation has actually been mostly helpful. Although finding something new that works within the restrictions I've been given is proving near impossible.
Over the last few years, I have tried physical therapy (multiple times), acupuncture, massage, nerve pain medications (currently on Gabapentin)....
Nothing has caused any improvement in my symptoms.
I have finally been referred to surgery as my last resort.

On one hand, I am terrified of having the recommended surgery. On the other hand (the very cold, weak, numb one), I just want my old life back.

I am at the point where I would do anything not to continue suffering as I have over the last 3 years. But the thought of surgery terrifies me.

I would love to hear from others who have TOS, who got to the point of having surgery, what you decided and why, and how you are doing now. Or I just need to hear from others with TOS. Because nobody else really seems to understand just how devastating this condition can be to all aspects of one's life.

Thanks for listening.
-Melanie

The restrictions are a real problem for employer & Dr to figure out.
I ended up walking the parking lot at work as "security" - my restriction at that time was "no hands use" -since previously my dr had wrote "no repetitive hand arm use" and HR person in charge had me sorting papers & putting in 4" binders that were over stuffed already - :rolleyes:
repetitive to the max -IMO
anyway I didn't last at that very long - 1 day and I was hurting as bad as if at regular job duties.:(

The goofy thing was that I still had to drive 20 miles to get to work.

Dr tried to write out workable limits but in an assembly job not much is non repetitive .. we tried a few other departments but scanning & entering large blueprints into computer system was hand /arm intensive, QA - testing same thing...

About the only thing I could do long term was receptionist , but sitting at the front desk 4 hrs was about all I could handle - sometimes it was boring as all get out & sometimes it was crazy busy.
We did have a head set w/mic for the phone and did not have to hold the handset at all.

Do you have any obvious cause showing on MRI or Xray?

Do you have more of the vascular or nerve type TOS, did the dr say anything about that?

Any trigger point work?
Sharon Butler style stretches?

PT during the time I was still working did not do much at all to help, it was only after I was off work that we started to make headway.

And I also focused on reading everything I could find about RSI and then TOS and then explored therapies, posture/bodywork & alternative care.

check out the sticky threads above the main thread list as well as some of the other threads to find more information.
We have some polls on symptoms & surgery & therapies.

This is so true for me too, Jo*mar.

You have to think outside the box with TOS and related and unrelated symptoms. It gets complicated. You have to be your own best advocate.

Your body is talking to you. You have to stop and listen and work things out from there. Each one of us are very unique, but still, I can so identify with you. :winky: :grouphug:

I copied this URL from the intro page. Just click on it and it will take you to my post to you. :)

http://neurotalk.psychcentral.com/sh...800#post683800

Melanie,

I had surgery 5 and 1/2 years ago with an experienced TOS surgeon in SF. I'm much worse off. In addition to worsened daily pain and headaches, I've added migraines. I've never returned to work as an attorney or anything for that matter.

I took much less pain medication before the surgery. I wonder how I would have done if I'd had better pain management and not done the surgery.

I know some people have good results from surgery. People with cervical ribs and vascular TOS seem to have better outcomes. I have mostly neurogenic TOS, the result of repetitive work, and I developed scar tissue after surgery. Unfortunately, there is no way to predict how one will scar.

I chose surgery because I'd tried everything else and wanted to give myself a shot at getting better. You really need to do a gut check. If you are having serious misgivings or worry about surgery maybe you need to listen to that.

Good luck. If you do go forward with surgery, get yourself to a very experienced surgeon who specializes in TOS and have a physical therapist who knows how to treat TOS as part of your team.

Take care,
Kelly

Hi,
I was diagnosed with vascular TOS in October 2008. I was experiencing chest/left arm pain,severe numbness and aching in my left arm, color changes and swelling in my arm.

It was found after numerous trips to the ER after experiencing heart attack type symptoms.I had every type of cardiac test done including an angiogram. It was after one trip to the ER that the ER doc ordered a CT scan wih contrast and that was how the TOS was discovered. I had 90% compression of my artery and was scheduled for immediate surgery for a 1st rib resection.

I'm almost 2 years post-op and have had no ill effects from the surgery other than some slight numbness around the incision site (which is in my arm pit). I had a follow-up CT about 2 months ago and so far everything appears good and my TOS symptoms have disappeared.

I would highly recommend the surgery if no other option is available. I had immediate relief as soon as I woke up from surgery and was home the next day. I spent 6 weeks on light duty and quickly recovered to my normal life style.

Good luck with your TOS and know you're not alone! I never realized how TOS can affect your life until I was diagnosed with it.

Ken

Thank you for the replies. :)

It's comforting to know other people understand the stresses TOS puts on our minds and bodies. I just wish the medical field understood more about it.

I've always been extremely self-reliant, independent, strong (both physically and mentally), and active.
No more. TOS has changed my life.

My thoughts are that surgery may be the end of TOS. But from what I'm reading, it's not that simple.
But if I opt out of surgery, what would I do next? I am not sure I can handle the possibility of living with TOS for much longer.... trying one thing after the next to soothe my pain and getting nowhere.
That is not living! And it is not the life I want.

I have just over 2 weeks until my surgery, so I feel pressured to make a decision ASAP.

I'll keep reading through this forum for advice and insight. I so appreciate all of your kind and encouraging words. Thanks for sharing your stories with me! I would love to read more.

Thank you all for sharing your stories, and offering words of encouragement.

I'm indecisive about the surgery because for every positive result I read, there's a negative result story to go with it.
I have this fantasy that the surgery would be the end of TOS forever. Wouldn't that be wonderful! :) But then I have the fear that surgery might not help... then I'm left still suffering from TOS, without a rib and some muscles. And from what I've read, the pain and recovery time is ridiculous.

I know for certain that I'm at the point mentally where I just do not want to deal with TOS anymore. It has changed my life. I used to be a fit, strong, athletic, independent young woman.
No more. I resent TOS. Is it even possible to resent a "syndrome"? :)

The doctors I've seen believe I have mostly neurogenic TOS. I suspect there may be some vascular thrown in there; my right arm/hand often feels like it's sitting in a bucket of ice, and both arms get so heavy and fatigued easily if I do anything over my head. But the doctors aren't convinced. Haha!
I also suffer from lower back pain, sciatica troubles, and pain/stiffness in my back and ankles (this all came on gradually, after I had already been dealing with the TOS for over 1 year). I mentioned these ailments to my main doctor. Since I am a worker's compensation case, the doctor suggested I just focus on the TOS for now.
I was concerned that all my aches and pains may be connected. I hoped the extra ailments would be explored more. But the doctors and worker's comp stay focused on the TOS.
My MRI showed disc bulge/herniation in an area (I forget the actual letter/number combo for the vertebrae.... I have my medical records stored in my bedroom and I just don't feel like getting them now. Hahaha!)... but he said the herniation was not in a place that would cause or contribute to the TOS, so he dismissed it.
My Xrays showed that the natural curve of my neck is reversing. So instead of (, I'm more like ). But those xrays were taken a while ago. Maybe I'm normal again now?! I was told that over time things could change.
My physical therapist insisted I have arthritis in my neck. When I mentioned that to the doctor (the very first doctor I had), he told me I was too young to have arthritis and ignored the possibility. I'm 34. C'mon! Needless to say, I switched doctors after that.

So most recently I've been consulting with a vascular surgeon. I was referred to him by my usual doctor. The surgeon is considered a specialist in TOS. According to him, he has about 4 new patients a week who present with TOS symptoms. He does a surgery for TOS every few months only. Which means about 1 out of every 50 patients he sees has the surgery. He is one of the only doctors who does this surgery regularly, in the New England area.
I've read up about him and I am confortable and confident with his background and skills. Each meeting with him, he has been compassionate, informative, and kind.
If I had the surgery, I feel like I'd be in good hands with him.

Now I'm rambling and my gabapentin and muscle relaxer are kicking in. Feeling sleepy. :) Forgive me if I talked too much with no point. I am so excited to have found this forum that everything I've kept inside wants to pour out.
Thanks for listening!

We do truely understand...

*** W A R N I N G ! ! ! ! ! LONG POST ! ! ! ! ! ***

I will tell you 7 1/2 years of suffering won't be good for you mentally, physically, emotionally or financially. It's also very hard on your friends, family, work and social life.

Having said that, I will say this: What you're doing now is not working. It will not go away on its own. There's a few more things to try, but they will not get you better quickly. There are no quick fixes for TOS. No medicine specifically for TOS.

I took the Neurontin. It certainly helped my symptoms but it was the hardest drug I've ever taken. The brain fog and the out of consciousness after medicating is scary :eek: weight gain too.

You can reschedule your surgery until you're more comfortable and are for sure it's your last resort. If that is your decision, let the surgeon's office know as soon as you decide. I know they will understand. No matter what I would ask my good surgeon about(alternative treatments) he would come back and say "You'll still need me." I had confidence in him too, but I didn't find him until 4 years later. By that time and all I'd been through, I really wasn't trusting anyone. One said this, another said, "Don't do that. Do this." and it was just as scary and risky.

Brachial plexus injections are risky, but I wish I had went for that, as driving is still an issue. I do it without pain now, but I can't go when and where I want. After 10 years of battling the highway/driving, I've worn myself out with wanting to go anywhere. TOS won that battle :mad:. I'm doing too good now to risk any ill effects from that injection, bilaterally.

The iced feeling you're describing is very familiar and very real to me. I did find (in 2007 or '08) that if I kept my arms, shoulders and scapulas "fleece warm" I was not in half as much pain. Imagine that. My arms and hands were so numb I really couldn't feel how cold they were when the pain would wake me up in the wee hours of the morning. That was back when it was just me, my dog and God in the darkness of the morning hours.

(BTW, pain would wake me up and I would already be crying, in my sleep :eek::o:(:confused:

I used a heating pad for years (2 heating pads died). not knowing heat was causing swelling on a microscopic basis. not good in the long term. I discovered Snuggies, blankets (hubby says I look like a 60-yr-old wrapped up in blankets all the time, even in the summertime :p)

I also have "arm socks." My PT started off with what they use to cast people's arms with. it helped but wasn't heavy/warm enough. Do try a hot shower (blew out my water heater-got a bigger one :D ) and keeping your upper body wrapped for a day or two to see if you get any relief. I know I look ridicilous in the summertime with sweaters, snuggies and blankets, but that's just the way it is for now. I have manged my wardrobe a little better to suit my needs.

I do highly recommend you look into the LED/infrared light pads. (started using those a little in 2007 & '08) . Then, in Dec 2009 I ended up with 3 of my own.

In some cases W/C will pay for the pads. I wanted to start a business with them, but am too busy with my regular court reporting duties. I can sell them, though, if you want me to try with your W/C carrier.

Here is my upline's webpage. She is a wonderful person in this painwrecked world. I wish I didn't live so far from her.

http://www.healthlightz.com/

She has recently expanded her business into a spa/therapy setting. There's another webpage for that. Smart Skin Solutions, but I couldn't find her page.

It took me a while using those pads, but they have got me back up and canning (My husband and I raise a garden now and can for my household and several others in our family. I'm able to do that this year, and am enjoying it so much.) I got back into it the last two years before that but suffered a lot, and now can do it without pain but only because I found the lights.

PT had me doing a lot of stretches at home that helped too. Always something new to try. Not everything helped. Some things made things worse for a while too. I had 2 therapist, at 2 different facilities over the years. 7+ years is a long time to spend in therapy. Many, many stories to tell about those adventures. My therapist and I have a very good friendship now. She only wanted me to get better and tried many things and she was the one that introduced me to the lights. With TOS, it's challenging and painful to PT your symptoms away. It helped a lot, but still miserable with pain.

Yoga is good too. (that was hard at first. Yoga master was very understanding and would prop my arms for me :o) Yoga helped too but wasn't going to get me back to where I am now.

I do not want to see another person suffer as long as I did. It has been unreal and I'm really trying to get past those bad memories. If anything I write or say can save you or anyone else from a day of pain, it's worth it to try to tell you my experiences.

(FYI: rear ended by an ambulance at a red light in 10-2000. Had cervical epidural injections X3 in 2006 - helped my cervical and lumbar back, arms some too. I've also had botox injections into my scalenes -helped but not a lot. lasted about two weeks. Just long enough to let me know I was really in trouble :D.)

Sorry so long. reading not as hard on TOS and typing. You don't have to get things right in typing... don't make the extra to correct typos. do your best and we'll figure out those little mistakes. I keyboard for a living, but it certainly don't help my symptoms. I won't give it up. I've won that battle!!!! :D)

I wish there were more success stories to read about. I'm sure they're several success surgeries that we don't get to read about.

Here's a webpage from another NT member who is suffering from TOS. She has started a much needed TOS Society.

This is her profile here at NT:

http://neurotalk.psychcentral.com/member.php?u=234

Here is her TOSS webpage:

http://www.tossociety.org/

You're not alone... :grouphug:

To Broken wings
 

Hello, my name is ginnie, and I am new to this site as of several days ago. I would like to talk to someone on this list who is in my state of a cervial nightmare. I got some really bad news yesterday and I need to talk. I am very frightened. I am post C-6-7 fussion with plate. 6 years ago. Yesterday the results of my CT Scan were announce to me and I am freaking. So much is wrong and so much surgery needs to be done that I have not even called for the appt. I am a rabbit in the headlights right now, and need advise from any who will listen. I don't know all the ins and outs of posting these messages. I found the site looking for neuro help. Let me know where I find those individuals who have this kind of trouble. DDD and DJD. HELP

Hi, and welcome to NT

This is a great place to come. I have DDD and all that. No surgery was ever recommended for my bad neck at this time. I did have injections that helped a lot.

I also have a bad back, which is stable for now.

It sounds like you are in a bad way with new information. I'm very sorry you're faced with this bad news. You're not alone here either.

Here is the link to spinal issues:

http://neurotalk.psychcentral.com/forum22.html

Just take a deep breath and post what you're able to for now. Lots of people here have had surgery and then later would need another one.

Did you have another event that caused this?

Sometimes surgery is the only way. You've been through that once already. I know that don't make it easier this time around. :hug:

I can help with definitions and MRI results.

Look around the forum and let us know if we can be of any help. I'll go back to work for a few hours but will be back on NT later in the afternoon.

Hang in there. There's so many friendly people here who can share their experiences with you and relate to your upcoming surgery, you'll be amazed. :grouphug:

good luck Melanie, I live in massachusetts and in the same boat with mostly neurogenic tos, wondered if you could tell me the doctors name as an experienced tos surgeon is what I need? Appeciate the help and my prayers are with you. you can send me a message or post whatever is easier.

thanks richard

I would think about putting the surgery on hold until you are completely calm, confident & 100% sure you are ready for that step, once you go there you can't reverse it.
Never feel you are being rushed into something like this.
It is a big step but many do get better, we just don't hear as much from them here.

If we mention some therapies that you haven't tried yet maybe that is something to consider - none are instant though.

Although the PT guy that got my top ribs to drop back down after spasms had pulled them up and they were stuck - that was an instant thing.. but I don't think anyone else here had that sort of thing happen...but chiro was the one to get rid of the spasms & major TrPs for me.

For me it took at least 2.5 yrs to turn it around - would have been sooner if WC didn't stall me or limit treatment arms only {dx at the time was RSI bilateral} - not to mention trying to keep working while having PT & restrictions was a waste of time - my body needs complete down time so PT & then later chiro could make the good changes happen.

It's too bad there isn't some way to know if a body will produce excess scar tissue or not. :(
Maybe, if your skin scars easily or heals with no scars?? might be an indicator..:confused:

Post #18 in the sticky thread has a link to surgery results - plus other good info - http://neurotalk.psychcentral.com/thread84.html

This use to be posted on the forum all the time-
" the standard cookie cutter PT stuff is not the way to go"

To heal, or get improvement with TOS- it needs to be specific to that person, finding what helps and what doesn't.

PT suggestions {IMO}
# 1 Pain relief treatments = heat, ultrasound, massage, manual trigger point, LED lights, Low level laser, e stims {IF/TENS/other} probably more that I left out -like acupressure

#2 Gentle stretching & posture /body awareness/work

#3 strengthening ONLY when pain is below a 2 and very slow and easy, back off if anything increases pain or symptoms.


We each have our own thing specific to us that set TOS of so part of it is finding what your body needs.

[My Xrays showed that the natural curve of my neck is reversing]

I think most of us here have that - due to yrs of arm/head forward work postures and not knowing that we need to avoid the permanent changes it can cause.
I don't think the spinal curves will fix them selves without PT or body work.... I know the "hump" area for me was much less pronounced after a month or 2 of chiropractic care as my c spine curves became corrected. Good PT and the home work I did on my own helped too.

Ditto...

Just to add, once you're surgically altered, you may not be eligible or helped by conservative methods of treatment.

Also, the dressing mirror I put at the side of my workstation made me so aware of my bad posture at the keyboard, I think I was having problems from that, not to mention it causing my TOS symptoms to worsen... and the forward head position, looking at the monitor all day.

I also think my glasses may need to be adjusted, as I'm tilting my head upward and forward to look through the progressive lenses.

Unfortunately, it does take a long time when you finally do get on a better path to recovery.

Don't rush into surgery since the outcome for TOS is not always desireable. 24/7 pain is bad. We all know that here. :grouphug: