Seat design causing neck strain and health issues!

Take a look at these seats and tell me- why are they all concave and curved forward at the top?!
I understand 'safety' is the reason given for the design, but try having TOS and have to sit in one of these seats for any length of time...you find out pretty fast that your pain is about to flareup!

  

Topping the list of seats that are terrible for TOSers, is the car seat. There has been nothing worse for my pain flareups than having to ride in someone elses car with a head restraint/headrest that pitches forward.
This paper addresses some important issues in car seat design, (Link)Automobile headrests extending too far forward with solutions.
A quote from that paper- "In most cars, the contour of the seat backs do not adequately match the contour of the drivers back and the headrests are too far forward."
As this Forbes article confirms, there are alot of people unhappy with the strain on their neck caused by the car seat head rest.
You may write and express how car seat design is affecting your health (a cause of TOS pain flareup) to:
U.S. Dept of Transportation
National Highway Traffic Safety Administration

A few ideas for TOSers to adapt their seat:
As the paper suggests, with warning, you may remove and turn your head rest around.
I have to do this or I cannot drive. I may be taking a whiplash injury risk, but leaving the headrest in the curved forward position is not an option for me.
 (Maybe this is not as much of an issue for those living with TOS who are taller?)

My recommendation for furniture for shorter to average people is furniture made by Best furniture Company.
I realised our living room furniture was contributing to my pain because it was SO slouchy, big and caused me to have terrible posture.


Other options to adapt include:
http://www.necksolutions.com/car-seat-neck-support.html

http://www.addonheadrest.com/backpain.html

http://www.amazon.com/Car-Neck-Pillow-Soft-Version/dp/B005C7ZR5O

http://www.amazon.com/Astar-Memory-Foam-Pillow-M139/dp/B002DBS9KM/ref=sr_1_20?ie=UTF8&qid=1407160243&sr=8-20&keywords=car+seat+neck+support

Happy driving fellow TOSers, gentle hugs~

Two TOSers Meet for Lunch - Guest Post - Dianna

Recently, I had the chance to meet up with a fellow TOS-er, Dianna, who lives in my area. Very exciting! We've chatted several times since she saw the listing I posted in a 'Recommended Doctors' file in a  facebook TOSsupport group for the surgeon who treated myself and my two kids.  

Getting the chance to swap stories and commiserate with someone who really gets it, well it's just really refreshing to not have to explain TOS, or be defensive, or put on an I'm fine face about living with TOS. Being able to just be honest about the crap that living with TOS brings to your life is therapeutic, especially when some people in your life can be dismissive or don't even take the time to try to understand what you are going through because you don't look sick.

It was a great lunch. The time flew by as we talked about our TOS journeys. It was interesting to recognize the same neck rubbing, arm movements, pointing to the same places on our backs, arms/armpits, and heads that hurt. 

Lots of head nodding in understanding and agreement as we listened to each other. The only thing I'd change is cushier chairs. We were both sore the next day from driving 40 min one-way, and from sitting for almost two hours in those stiff chairs. If you live with TOS, you understand.

I'm really glad Dianna agreed to be interviewed for today's guest post. 

Dianna developed TOS without having cervical ribs. Many fellow TOSers can relate to her situation. Your life was going along pretty well, you're working hard, or playing a physically demanding sport, and pain develops in your arms, shoulder blade, hands, neck, head, chest...you can't shake it. The ache, swelling, throbbing, stabbing becomes relentless. You get referred to several different doctors who have different ideas about what your problem is, and eventually one of them tells you " you have TOS", and that becomes the beginning of a journey.

Here is a little of Dianna's TOS Journey...

1. What type(s) of TOS do you have? 

I have NTOS. (neurogenic = invoving nerves)

2. What contributed to TOS symptoms developing for you? 

Long work hours with heavy lifting, repetitive overhead work, working in unfavorable body positions. This first picture was from before TOS changed the path of my life. I was physically fit and in great shape. The prime of my life and when plans for the future looked pretty good. Little did I know how much would change.  I'll never be able to do that type of work again, regardless of if I ever recover or not. It would only put me back in the TOS cycle again. Not that we ever really get out of it. I really believe it's for life.

3. What treatment have you had?

I've had trigger point injections, three rounds of physical therapy, and two surgeries. Bilateral rib resections and anterior scalenes removed.

4. How are you now?

I still have a lot of symptoms. 

Notably, my hands turn white when raised in an overhead position, arms still tire, and still have a lot of nerve issues especially if I do any one thing for too long. Examples: sitting, standing, housework. 

This picture was taken right around the time I was first diagnosed. This one reminds me of how much the little things like holding a baby really mean. After this past weekend trying to hold our grandson my left arm feels horrible. It was worth it though. :)

5. What advice would you give someone new to TOS?

Advice I have for someone new- Talk to your doctor right away, research as much as possible, knowledge helps, be presentable to doctors. Write down all your symptoms for the doctor. Don't take no for an answer. Self advocate.

Please let Dianna know if her TOS story is helpful to you, or if you have any questions/comments for her.

I encourage my fellow TOSers to connect, talk, share, encourage, commiserate, vent- in whatever way you are able. In person is fun, via skype, chatting online, email are all great options. One thing is for sure, for those who are on this TOS journey - it sure helps to have others who understand to talk to about it.

Gentle hugs~

Interview- The daughter

As promised, the interview with the daughter about her continuing journey with TOS.
For some of the backstory, check out this previous post.  It is now seven years since her one-sided rib resection surgery.

So, daughter, how are you feeling lately?
"Lately, I've been having some pain (in my resected arm) and I'm not sure why.
This happens to me occasionally. I haven't been to a doctor about it in over six years, so it's probably time for a check up in the near future.
I don't want to discourage anyone else from surgery by admitting that I still have pain sometimes, because having that surgery was the best thing I could have done. I'd do it again if I had the symptoms in the other arm or (continue to have them) on the same side in the future."

What do you remember about your rib resection surgery?
"I had my surgery done a month before I turned 13. I suppose I should have been more nervous about surgery than I was. But, I  had just witnessed my older brother go through the ordeal a year earlier.

He came through it fine, so I guess I just assumed that it would all be alright."

"I had one nurse who was relatively new, and tried to take my blood pressure in my surgerated arm once or twice. (*I stopped them!) Other than that, it was all fine. Not scary or anything."

*In this photo, two hours after waking up from surgery, she has a keyboard and is sending emails to her friends. The resected arm side of her face droops. Her brothers face also drooped postop. It went away in a few days. She has an automatic morphine pump in her side. She went home with it the next day and it lasted several days. A wonderful thing.

"It took me a while to recover and stop having pain in my arm. Even while I was still having arm pain (postop) I didn't regret surgery. The pain was 10x worse before- constant and terrible.

Even though it took me about a year to stop having pain (after surgery)- it wasn't the same pain as before. I think it might have been due to my nerves being messed with, or agitation caused by physical therapy? I also had a biking accident two months after surgery... oops."

*Yes, eight weeks post-op, she was feeling good and riding a bike. Cringe.

What do you remember about physical therapy?
"Well, I think it's necessary to help build back up movement and muscle and make sure that you don't heal all frozen up. But I think at times, my PT's pushed too much and flared up symptoms. I'm not sure they were used to working with people with TOS?"

Do you feel TOS is affecting your life now, and if so, how?

"It still limits me. I've had to learn my limitations for doing things.
Had to learn to explain my "mutation story" or "extra bones" to people so that they wouldn't hug me too tight, or hit me in the shoulder playfully, or heaven forbid- try and give me a neck rub!

My armpit/back of my arm is numb/hyper sensitive now. If I ever bump into things or get hit there, it feels like I'm being stabbed with needles. I think a nerve of mine was affected a bit in surgery.

Also, carrying purses hurts my neck. I try and always pull through parking spaces because it hurts to crane my neck to back up. Washing my hair takes a long time, and I wake up every night with my arms asleep or in pain because they weren't in the right position.

I use heating bags a lot on my neck when it hurts. I use a nifty little clip for my seatbelt when I drive- which helps a ton! I even bring it with me when I ride in other people's cars."

Ever get pain in non-resected side?
"I've only ever had TOS-y pain in my non-resected arm a handful of times. If I ever started to get constant TOS pain in that arm, I would definitely have surgery.

However, I would definitely glean more knowledge about different ways it can be done, like resecting the cervical rib, or having the surgery above the rib instead of under the arm.

I'm just curious if other people's experiences are better with different kinds of surgery. The only people I know (you and my brother) have had the same surgery and seemingly the same side-effects, so...yeah."

What advice would you give someone new to TOS?

"Learn about the monster- learn what makes it tick. Your life won't be the same, but you will only make it worse if you resent and ignore it and try and carry on like usual.
But don't be discouraged!
If you don't know TOSers, get to know some!
Get advice and gain knowledge about your options, and find people you can empathize with.

I was fortunate I had two other people to go through this with."

~ ~ ~

*I hadn't thought of feeling 'fortunate' that all three of us have to go through this TOS journey... interesting positive outlook on our situation. We do have each other, like a mini TOS Support Group.

Guess that does make us oddly fortunate :)

A Day in MY Life With Thoracic Outlet Syndrome

It is 6:48 am. My dog is staring up at me over the edge of the bed, whining and doing her potty dance. I roll to get up off my chiropractic mattress and realize I should not have slept with that pillow last night.

My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out. I attempt a 'systems check', turning my head slowly, left and then right, and back to the left, bending my arm and rotating slowly at the shoulder.

Feeling pretty good this morning, I think to myself.

Mind you, this is compaired to having constant ear, neck, jaw, back, and arm throbbing for several years due to Thoracic Outlet Syndrome before my right first rib was surgically removed through my armpit. Yes, compared to that- I think I'm feeling pretty good this morning.

While the dog does her morning business outside, I get the coffee started; half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I recently decided I had no choice but to chop off my long hair. The weight of it all was just too much for my weak and grumpy neck muscles that have to compensate postop from having been partially removed.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not fully rebound postop. Turns out that having a large mans hand in that small space stretching out your nerves complicates things a bit.
Did I get it on? I wonder.  I have to actually watch myself smear it on to be sure.

Before I head out the door I take a deep breath and wash down some pills, stuff my cell phone in one pocket, my little pocketbook and keys in the other pocket, and head out the door. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really; cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and I cannot bear that. So I compensate, and pray as I drive with my seatbelt sortof on that God might protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor-per state law- stating that I need to adjust my seat belt for medical reasons, and have begun using a belt clip that holds the belt away from my neck.)

I get a text from my daughter, who is away at college. She wants to followup with the surgeon soon because she is having recurring symptoms since her resection in 2005. Both our kids also have Thoracic Outlet Syndrome due to cervical ribs (an extra set of ribs in the neck) and have had a rib removed through their armpits too. We have comiserated about our numb armpits. I sigh as I read her text, breathe a little prayer and make a note to call the doctor when I get back home.

After my apointment, I stop at the grocery store. I've gotten used to parking far away from the store, out where I can pull through two parking spaces so I don't have to wrench my neck around to look behind me to back out of a parking space. A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non-resected TOS side prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk. I know from experience that the weight of several pounds of milk hanging from my arm would definitely pull down on my neck and shoulder, squish nerve,s and set off that darn chain reaction that does not stop once it starts up. It also makes my hand turn a nice shade of blue; and blue doesn't match my outfit today -so I'll just grab a cart.

I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience has taught me that I am always just one too tight hug away from a flare up of nerve pain misery.

The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. My physical therapist would remind me that awareness is key in managing my symptoms.  I must always be aware of what my body is telling me. Listen. Pay attention. I have to do regular mental systems checks. Is my posture off? Is my head turned slightly to one side?  It is definitely a juggling act to live with TOS.

Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.

The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing by letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring? What adjustments will need to be made?

Whatever it brings, I'm just thankful I've gotten this far along on the journey, even with TOS.

Seat belt clip Review #2 - The LooPo - and more on proper seatbelt use for TOSers

Loopo clip review- http://www.seatbelttensionadjuster.com

My experience of the LooPo seat belt tension adjuster clip is- Thumbs up! It is really fantastically easy to use, clips on and off with no effort. Simply clip the LooPo onto the shoulder portion of the belt- up by where the belt retracts, clip your seat belt on, and then set the tension of the shoulder strap where it is comfortable for you.  You could easily use the same clip on any belt, easy on and off.
I found driving with this clip on my seat belt provided peace of mind.  I am still able to wear a shoulder strap, and there is no pull or tug on my arm or shoulder.
My daughters review of the LooPo is- "I like it!"
I just ordered more of therre I like them so much...one to take with me in case I ride in someone elses car, one to leave in each vehicle, and I will order more to give as gifts to people I know would find these helpful. I LOVE to find things that are helpful for TOSers!

**3/3/13 Update! I've been using the LooPo seat belt adjuster for several months now, and I have learned that if I do not slide the locking switch and slide the LooPo down the belt so it can retract, then my seatbelt flops around, gets shut in my car door, is hanging on my seat when I go to sit down. It is still the best seatbelt adjusting clip I've found, but not without its minor hassles.

~ ~ ~

On another note, I ran across several posts in an online forum regarading seatbelt exemption and tickets given for improper use. One lady in California got ticketed for putting the shoulder part of the belt behind her, even though her belt was fastened, she got ticketed anyway. Officer told her-"Belt must be fastened in the manner intended by the manufacturer."
This is why I got a note from my doctor-one for my glove box, one in my wallet.  I am also testing different seat belt adjusters so I can still wear a belt and be safe, but do it more comfortably, without causing a flare up when I drive. 
More on Michign belt law and How to wear your seatbelt properly.
This link states there should be no slack in the belt, unless you have a doctor note that states you need to adjust our belt due to a medical condition. You could also opt to request a note from your doctor stating you are exempt from wearing your belt due to TOS.
I personally am more comfortable continuing to wear a seatbelt but using some type of clip that provides a slight slack. The belt will still kick in and serve the intended purpose and it's better than not wearing one at all.
I am continuing to look for other types of seat belt clips and will give my reviews of them in future posts. For now, I am happy with the LooPo seat belt tension adjuster. Check it out, and above all, stay safe out there on your journey with TOS.

Seat Belt Clip Review #1 - Master Design waist belt clip

Seat belt clip Review-

This particular clip by Master Design is very hard to re-open once you snap it closed. I had to pry it open with a screwdriver. You would need to have a clip for each seatbelt you use. My experience with this particular clip was that once you slide the shoulder portion of the belt in the clip, the tension pulls up on the clip and twists the whole belt up so that the shoulder portion of the belt can slide out. My daughter, and fellow TOSer, gave me this review of the clip- "It still leaves the shoulder strap against my shoulder, still putting pressure on it, so it really does not help at all." 

I have a different kind of seat belt clip on order. It clips up where the belt retracts and holds a bit of slack in the shoulder portion.  I will post our review of that type of clip soon.
Above all, stay safe out there on your journey...with TOS.

TOS Driving Dillemma

My family has become so frustrated and concerned about my holding the seat belt away from me while I drive that they found our State's regulations online for seat belt exemptions and sent it to me.
I printed this information and took it with me to a recent doctor appointment. I asked nicely for a letter to exempt me from wearing the shoulder belt, or at least to be allowed to adapt it. I was given two letters, one for my car glove box and one to carry. Today I ordered these seat belt adjusters. There are several styles to choose from. I've read reviews on several styles about the clip slipping-more frustration, and who needs that? I will update you on how well these particular clips work. I will give one to my dear TOS daughter who struggles with the same seat belt issues-actually more since she is slightly more vertically challenged (love you;).

I encourage all my fellow TOSers to check on your State regulations regarding seat belt use and how you might adjust to make driving or riding in your vehicle easier for you to do. Moving ahead on our journey...with TOS. Stay safe!

TOS-friendly vehicles?

I think my new dream car is a voice-command K.I.T.T. car. Recently I have been looking for a car. This is quite a feat when you have TOS, because there are several things I consider a must in a TOS-friendly vehicle. First, tilt steering. Forget keeping hands at ten and two, hands on the wheel lower is helpful. Secondly, the head rest. Could someone please explain to me why the head rest in cars curve forward the way they do? Being shortish, the head rest always forces my head and neck forward in an awkward position. *I actually take my head rest all the way out, flip it around and stick it back in so it curves back. Third, seat belt tension. If the belt is not height adjustable-forget it. My daughter uses a velcro-on shoulder pad that helps keep the belt away from her neck. I hold the belt away from me alot of the time. (I need to get a doctor note about my TOS in case I get pulled over.) Also important would be seat comfort-very hard to find in newer vehicles. Visibility is a huge issue-not having huge blind spots but nice open windows in the back so TOSers don't have to crank their necks around so much. Also, four doors, not heavy long doors. Steering that is nice and light and not tough at all. Optimally a car that would be great for me with the TOS issues is a car with no steering wheel but controlled by a hand held joy stick. The rearview backup system that warns and stops you if there is something in the path behind you would also be a great option. My cheapskate way of getting around the problem of backing up (cranking your neck around to see behind you and possibly cutting off the blood supply to one of my arms) is to always move forward. I always park where I can pull straight out, even if it means walking farther. Backing up is a bugger with TOS.

A day in my life with TOS.

It is 6:48 am.
My dog is at the edge of the bed, whining and doing her potty dance.
I roll to get up off my chiropractic mattress and realise I should not have slept on that pillow last night because now an ache travels down my neck into my back and all the way down my arm with just the lightest little throb.
My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out.
A few attempts at turning my head slowly, left and then right, and back to the left, bending my arm and rotating at the shoulder. A systems check if you will. "Feeling pretty good this morning", I think to myself.
Mind you, this is compaired to the constant ear, neck, back, and arm throbbing I had before my first rib was surgically removed through my armpit two years ago because I'd been living with constant arm pain due to Thoracic Outlet Syndrome. Yes, compared to that I think I'm feeling pretty good this morning.
While the dog does her morning business outside I get the coffee started, half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I will be driving today, a good half-hour from home, so as I get myself around for the day I know I must wear my hair down. Putting it up would force my neck into a position while I'm driving that would cause my neck to cramp, nerves to pinch and arm to ache. So today I will brush it back and reconsider chopping it all off.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not grow back postop.
"Did I get it on?" I wonder. I have to actually watch myself smear it on to be sure.

Before I head out the door I wash down some pills, stuff my cell phone in one pocket and my little pocketbook and keys in the other pocket, and head out the door. Sigh. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really, cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me with one of my thumbs as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and that I cannot bear. So I compensate, and pray as I drive with my seatbelt sortof on that God will protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor stating that I need to adjust my seat belt for medical reasons, and I also ordered a belt clip that holds it away from my neck.)

After my apointment I stop at the store. I've gotten used to parking far far away from the store, out where I can pull through so I don't have to wrench my neck around to look behind me to back out of a parking space.  A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non resected TOS arm prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk.  I know from experience that the weight of several pounds of milk hanging from my arm, pulling down on the cervical rib bones in my neck will cause spasms, possibly pinch off blood flow, which makes my hand a nice shade of blue. Carrying milk would definitely squish nerves and set off that darn chain reaction that does not stop once it starts up. Besides, blue doesn't match my outfit today -so I'll just grab a cart.
I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience is that I am always just one too tight hug away from misery.
Later in the day I hop online to check a few things, propping the laptop up on pillows or books so I don't have to look down.
The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. Awareness, as my physical therapist would remind me, I must always be aware of what my body is telling me. Why is that pinch in my neck there? Listen. Pay attention. I do a mental systems check. Is my posture off? I notice my head is turned slightly to the left as I'm watching tv.
I need to change where I sit so I am directly in front of it.
Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.
The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing my letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring?What adjustments will need to be made?
Whatever it brings, I'm just thankful I've gotten this far along the journey, even with TOS.(Thoracic Outlet Syndrome)