So...my daughter just had more TOS surgery

My daughter had rib resection surgery on the left side this week.
Symptoms have been increasing on her left side for the last four years.

She has restricted her arm movement and done what she could to avoid pain

and numbness for a long time. 

When her arm started going numb washing her hair, it was time to consult about surgery.
Everything went great. Transaxillary (armpit incision). 

There was lots of extra muscle from the small cervical rib. 

All of first rib and cervical rib tip removed along with excess muscle. She found a new surgeon who trained with Dr. Brantigan in Denver not far from home. 

She kept her rib bone this time.

The doctor said he "expects things should really improve for her now".
She's done physical therapy for her right side for nine weeks  to strengthen and prepare for surgery.
Now for recovery...
I'm looking forward to seeing her not have to restrict herself and be able to give bear hugs...just not to me.

I'm an old Grandma now, and I pretty much just avoid what causes flareups- pretty much.

Watching what my daughter is going through recovering from surgery...I think I will just keep living with TOS the best I can.

Gentle hugs~

Would I have rib resection surgery again - ??

Maybe.
I would seek a second opinon from someone who removes the cervical rib...especially since my daughters first rib grew back-entirely, and all wonky, and all three of us had pretty much the exact same surgery and have had symptoms return.

The specific physical therapy I've had this past year has been so helpful that I think If I'd had good p.t. 5 years ago (with someone specializing in neck trauma who knows TOS) I probably would not have had the surgery.

Because for me, with surgery-which was somewhat helpful, I also now have new complications-mostly from the missing neck muscle taken with the first rib.
So if I'd had good p.t years ago, instead of bad p.t...then maybe no, I would not have had surgery to have my first rib removed through my armpit.
To be clear, all three of us are thankful for the surgeon who did our resections. At the time, surgery was our best hope. We didn't know any different, didn't know of any options, and it did improve things, somewhat.,.for a while.

The journey with TOS goes on.

Fellow TOSers, Don't hang in there, & Gentle hugs~

Guest Post - Tara

I asked Tara to share her TOS story with us because I’ve appreciated her hard won knowledge and encouragement (in the TOS facebook Support Group), and I’m sure you will too.

I asked Tara to answer the following questions for us:

1. How did you come to learn you have TOS?
2. What treatments have you tried?
3. What is helpful to you now in living with TOS?

I just had to put this part of Tara’s response here at the beginning-it is so important I wanted you to catch it right away…

“Try to avoid toxic people and encounters whenever possible and learn who your real friends are. You will need them. Our lives may feel diminished, but learn what you still have and embrace it.”
~ ~ ~
“It appears I was born with all the elements that predisposed me to developing Thoracic Outlet Syndrome.
I have two cervical ribs as well as elongated C-7 transverse processes on both sides. The only indicators I had growing up were heaviness and loss of strength in my arms when doing overhead activities like swimming or arranging my hair or fussing with my blankets in bed.

Ironically, I was exceptionally strong, easily doing necessary things like chopping wood and hauling water from the spring near our wilderness home. I don't recall suffering any ill effects from those "arms down" activities. Straight and strong, I didn't notice my posture changing until I was about sixty years old. By then I had gone from slim and buxom to plump and heavy bosomed. My body had gradually curled forward from the extra weight.

Everything came crashing in when I was working with a rather large three-year-old boy, who had to be contained over an eight hour shift. He jerked and pulled and twisted my arms the entire day, while trying to escape--wanting to harm other youngsters in the room. At the end of the day, my arms felt as if they were dislocated--weak and painful. Sleep became nearly impossible, because almost any position I lay in, my hands would lose circulation and start throbbing. I reported the injury to my supervisor.

I was diagnosed with a shoulder impingement and sent to physical therapy. Unfortunately, the type of therapy I was given was the worst type to be used for TOS. My work-outs included exercises with weights, therabands, and an arm bicycle. While the impingement improved, a deeper pain began to develop, sending shooting pains down my arms along with burning, tingling, and numbness into my hands.

When the sports medicine specialist I was seeing declared himself stumped, I told him about an EMG I'd had a few years earlier which had shown nerve irritability. The neurologist had told me about "Droopy Shoulder Syndrome" and said I had the body type for it. Looking up the term on Google, I'd learned of TOS.
My specialist snapped his fingers and said, "That's it!" He ordered a new EMG, and an MRA, then referred me to a local surgeon whose wife has TOS. The tests showed compressed veins, and True Neurogenic TOS was diagnosed. I was rushed into surgery.

Unfortunately, the surgeon I was referred to has a history of being very experimental. The first doctor I saw was very kind and seemed to possess good surgical skills. But his senior partner, who stood in to help, decided to try a different surgical method. The records were falsified to say the surgery had been done as I was told it would. A year later I was back for a second surgery on the left, as I had gone bi-lateral. The second surgery was disastrous! From all appearances the senior partner left early and turned me over to his students. Falsified records said, "complete rib removal and scalenectomy".


Nothing resolved correctly and it took two more years to find and be treated by a TOS specialist, Dr. Dean Donahue at Massachusetts General Hospital in Boston. Dr. Donahue's special contrast CT scan, imaged my cervical ribs and the terrible surgical techniques used on me previously.
Since our first meeting in 2010, Dr. Donahue has performed clean-up surgery on both sides and identified the combination of issues involved. I have "true neurogenic TOS" with classic Gilliatt-Sumner Hand--nerve damage and wasting muscle at the thumb base. The elongated C-7 transverse processes sent fibrous bands into the scalene triangles, where adhesions clamped them to the scalenus minimus (small, extra scalenes )-trapping the arteries between them.

With just chunks of both first ribs removed, the prior incomplete surgeries left the periosteum/bone casing's cut ends drifting. Those casings caused a healing response from my body and new bone regenerated in them-like it would from a fracture. The anterior scalenes had also been cut and left drifting until they met and attached to those loose bone casings. From that response, a sling formed across my brachial plexus on each side and then adhered to each pleura, creating new compression. The repair surgeries were lengthy and difficult--the one on the left was not enough to reverse all the nerve damage. I am left with weakness and loss of function in that hand.

The right side was especially bad, with the brachial plexus wrapped twice in thick slabs of scar tissue. Despite the surgery taking 4 1/2 hours, the damage has been significantly reversed and strength is returning to the hand.

Workman's comp has dogged my every step, with adjusters stalling my medications and procedures. In spite of that, I have tried PT, lidocaine injections, Botox, radio-frequency ablations, intermuscle stimulation (IMS), aka dry needling and numerous medications. The two most beneficial treatments have come from my manual physical therapist. He has pioneered some gentle stretching methods that are especially easy on TOS patients. He also learned manual lymph drainage (MLD) and dry needling therapy (IMS) which when used in conjunction work miracles on my trapped lymph build-up.

Living with TOS is especially discouraging, knowing it is for life and will not be cured. We need to develop arsenals of pain-relief methods--each will be as individualized as the people developing them. Many pharmaceutical medications have been tried, but nothing has proven especially useful to me. Things like Cymbalta and Lyrica are caustic to my gut and I have had to eliminate them from the list. At present, I use Wellbutrin and flexeril in conjunction with curcumin/turmeric and several vitamins and supplements. They seem to take the edge off daily pain. Soma helps when I can't sleep.

Distractions are very important and I use them frequently. Books, movies and music all help me to switch focus from pain. Travel in general is pleasant, but my very favorite is road-tripping! My tens unit and infra-red lamp are soothing, frequent companions at home and on the road.
I try not to dwell on my afflictions or tell my lengthy tale to everyone I meet. Just accepting that we have TOS can help us move forward.

Getting the best medical help you can afford is primary, but you may have to hire and fire several doctors before you find someone truly helpful. A TOS specialist can be beneficial if s/he has more in his/her lexicon than surgery. Pain specialists can also help, if you are willing to be experimental. You may find that your best and most consistent help comes from your trusted GP.
Devise coping methods that help get you through and learn what you can do to normalize your situation as much as possible.
Learn to respect your new limits and ask for help.”

~ ~ ~

Thanks for sharing with us Tara. 

If you have any questions or encouragement for Tara, you may contact her here.

Gentle hugs~

They're baa-aack!?

One member in our family of three with TOS - the daughter- has been experiencing recurrence of pain. We obtained updated xray and MRI recently, and requested a copy on disk to take home.
Our mouths dropped open when we saw what looks to us to be a fully formed, regrown first rib...which was *removed* years ago.
*We are not radiologists, with no experience reading these test images....but it sure looks like the rib grew back.
We are flabbergasted.

**Update--We got a copy of the xray that was done immediately after rib resection and compared it to the new xray, and sure enough...the whole rib is now present where it was once just a stump.  Not cool.
I'll post the pics after our second opinion consult.

We are told it takes forever to get into the specialist we are waiting to hear back from for a second opinion on the situation. When we know more, we will let you all know about the next step in this TOS journey.

Some interesting information I've run across online about rib regrowth...

http://www.drbrantigan.com/physician/multidetector.htm
"... the first rib has regrown..."  (shown in CT scan pictures).

From this article- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
"...patients with recurrent TOS symptoms for removal of rib remnants and regenerated fibrocartilage..."

"The primary technical factor involved in recurrence seems to be incomplete extirpation of the rib during the first procedure. If a rib remnant is left (as most surgeons outside of our group do), osteocytes, chondrocytes, and fibrocytes grow from the end of the bone and produce fibrocartilage and regenerated bone that compress the nerves."  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/

I'm not broken, just bent

I learned at a consult a few weeks ago that my upper spine is curved a bit, possibly as a result of having a rib removed on one side and not on the other.

I was counseled that I should reconsider resection of the opposing side rib because the imbalance may be the cause of my continuing back spasm and pain issues.

A new MRI and a consult are in the works.

I'll keep you posted.

My tips for TOS surgery recovery

-Pain meds. Be SURE you have enough pain meds before you leave the hospital to last at the very least one to two weeks...but preferably longer. Do not leave the hospital without sufficient pain meds for your recovery-which I have heard of happening. I also highly recommend nausea meds. (Zofran)

-My surgeon recommended B vitamins to help with nerve healing.

-Both my kids who had resections and myself all lived and slept in the recliner for the first couple weeks. *Make sure the footrest handle is on the opposite side of the side you are getting resected-you will not be able to maneuver a lever with your resected arm! Laying flat was difficult. A wedge pillow is nice, or at the very least lots of pillows to prop yourself up in bed or on the couch!

-Have a notepad and pen handy to write down every time you take any med, and also write down the next time you can take that med. Trust me, this is a good idea!

-Freezer meals, and lots of easy snacks- plan ahead meals for at least two weeks, longer of you can.

-Have movies to watch, books to read stocked up. My daughter says not movies that are too funny because laughing hurts for a couple weeks postop.  My son played video games for two weeks postop, which I think got him moving his hand more. You will be naturally tired, your body is working really hard while you heal and meds may add to that tiredness. But you need to take it easy and if you have tv, movies, video games, magazines, or books its a nice distraction.

-Lemon water, real lemon juice-two-three tablespoons in a glass of water, hot or cold as often as you can is good for keeping kidneys working with all the meds you will need for a while. Lots of liquids are important for healing.

-Magnesium capsules, helps keep your bowel movements naturally regular and is also a natural muscle relaxant. Constipation from pain meds is common, so stool softeners, drink smoothies with added ground flax or citrucel, whatever helps keep things moving.

-A speaker phone, or earpiece for your phone so you don't have to hold the phone up to your head.

-Help. If you can line up help with housework and even with showering and personal assistance for a few weeks you will be glad you did. At a minimum get help for the first week at home even if it's just someone checking on you once a day.

-Loose button or snap front shirts, easy pull-on pants, slip on shoes. Loose zipup exercise jacket with front pockets-in case you leave hospital with drain or morphine pump you can stick it in the pocket. Three weeks postop I bought a strapless tube bra at Walmart for $5 so I had enough support to feel comfortable leaving the house. I highly recommend the strapless bra by Marena.

-A driver. If you have follow-up appointments postop, you will not be driving for a minimum of two weeks, I couldn't drive for several weeks postop.

-Ice packs. Bags of frozen peas in a ziplock or a ziplock bag with 1 cup water and 4 tablespoons rubbing alcohol make good ice packs.

-Easy hair. I do not recommend pony tails as that tilts the head forward when you are resting, also hard to put up with one hand.

-I found a shower seat at a yard sale, it was very handy the first couple times I showered postop as I was SO tired.

-A squeeze bottle filled with water to squirt clean yourself after using the bathroom, or moist wipes.

-An arm sling- for when you leave the house to protect yourself from people who may want to hug you, and to keep you from overtaxing your arm if you are out and about.

-My daughters recommendation, a handheld shower sprayer, makes it a lot easier to shower especially if you don't have a lot of help.

-Tv tray to keep drinks, remote, beverages close at hand.

-Avoid sneezing at all costs for a few weeks-plug your nose, avoid sneezing triggers!

-Do not carry or lift anything remotely heavy. Break things down to smaller sizes, half gallons of milk or smaller, single servings.

-Do not allow pets to jump up on your chest postop, get help with pet care for a couple weeks if you can.

-An alarm, to wake you to take medication on time. You do not want to oversleep and miss a pain med dose and wake up in agony!

-Chocolate of some kind...very soothing :)

So how are things? Four years later...

I'm so glad I've kept this record of what it was like for me to go through rib resection and healing postop. My four year resection anniversary had me going back to refresh my memory of what I was feeling and experiencing at this time four years ago.
*See new, 4 year postop, pictures at the end of this post. To compare, see postop pictures from 2009 here.

It's interesting to go back and re-read posts from that healing phase. I remember it well.

Truth is, four years after right sided rib resection, I feel a bit stuck in that healing phase...in my mind and emotions. Having rib bone and muscle cut out of my body was dramatic and left me with emotions I am still working on getting past.

The initial healing phase postop was brutal for me because of my nature. I am a very sensitive, type 2 person, always picking up other peoples vibes. I have even been called "touchy".
When I am in pain, my nerves are already on total overload, so any talking, touching, loud noise or movement feels very jarring and abrasive to me. Just ask my husband about trying to comfort me years ago while I was in labor, poor guy. He wanted to help and each time he started rubbing my back I would hiss at him- "Don't touch me!"

However, healing takes time, that cannot be overstated-especially after rib resection surgery where nerves are stretched, things are removed and muscle rearranged. No one can expect to remain still and undisturbed for that extended healing period. I remember feeling so incredibly frazzled all the time after surgery.
Other folks with different natures probably do not experience the same emotional postop healing issues and would take my comments here as overly dramatic. In my experience (and that is what I share here on my blog) that postop phase was traumatic- in fact my psyche has still not recovered. 
Thus, the left sided resection that was recommended, that I realize would spare me from some of the left sided TOS issues I deal with, well it's just too hard for me to fathom signing up for more trauma.

Having said that, my current state is- not too bad.

The long red hair is shorter now. It had to go, too much weight for my TOS neck.

I had additional surgery two years after resection that improved more of my TOS symptoms.

I currently go for ABM (Anat Baniel Method-a type of Feldenkrais) sessions once every two weeks. The mind/body education and gentle movement of this therapy are teaching me how to organize my movements to lessen the stress on my neck, shoulders and upper body. Through this therapy it has become clear that my right side, the side that was resected four years ago, moves more, is free-er, less restricted, and my left side-where I have the bigger cervical rib and still need resection- is more frozen, stiff, and very guarded.

I have many of the common issues I see other TOS folks commenting about on TOS support groups.

Weather affects my pain level.
I have lost upper-body strength from limiting my arm movement.
I juggle a lot of things to minimize the flareup's of TOS pain.
Driving more than a quick trip always leaves me needing pain meds afterward.
I worry about a left-sided blood clot (I'm super careful with that arm when I sleep at night).
I, like most TOSers, continue to seek ideas to manage my life with TOS.

On my list of things to try are; acupuncture, taping, botox injections, Melt method therapy, anti-inflammation diet. My doctor prescribed an antidepressant to help with the pain. I was *very* skeptical and resistant to the idea, but dealing with pain has a way of wearing you down.
I gave in and decided to give it a try. Once I was past the initial startup side effect phase, I am happy to report that I have noticed a reduction in TOS achy pain symptoms.

I take omega 3, B12, magnesium daily. I will be adding vitamin D soon also.

I recently went back to working as an in-home caregiver, very part time, very light duty.

I have gained weight, up two sizes- partly from restricting my activity to avoid TOS pain, partly because donuts make me feel better-at least while I'm eating them.

All-in-all, my life with TOS has its challenges, but they are manageable.

I have found great support and ideas from online TOS groups. I appreciate the people who share their common TOS struggles and encouragement however they can-with suggestions, a word of support, or just offering a place to vent where everyone understands, because we are each living our own journeys... with TOS.


Four-year postop pictures below.
You can see my right resected side is lower than my left side. My neck on the right is straighter also.

The transaxillary scar is barely visible, 2 1/2 inches below the crease.
My armpit is mostly numb, including part of the back of my upper right arm .

 

So that's the scoop four years postop. As always, if you have any TOS questions, don't hesitate to email and ask.

Is this our fate - scar tissue and repeated symptoms post decompression surgery?

http://www.nervemed.com/thoracic-outlet-syndrome-treatment/adhesions-causing-recurrence-after-1st-rib-resection

I wanted to shared some information for all you TOSers out there who've had rib resection surgery.
I believe knowledge is power. If you don't know about these things, you cant stick up for yourself or ask the right questions.

When my daughter and son each had resection surgery in 2004 - 2005, our surgeon told us it was possible they may have recurring symptoms in the future because they were having resection at such a young age (13 & 15).

I think the link provided shows clearly why-regrowth of scar tissue and/or muscle.

Very interesting indeed, for those of us who have had surgery, especially if you have had decompression surgery in your younger years, you need to pay attention to this information.

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 :)

TOS...it's complicated.

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

The Labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

TOS Questions

I was recently asked via email if I regret having the rib resection surgery, if I have returned to work, and if I plan to have the left side resection.


My response...

"I do not regret having the surgery.

My pain was constant and unrelenting prior to rib resection, as was the case with both my kids resections.

However, all three of us continue to need to be mindful about our TOS and not do certain things that aggrivate it.

We each continue to have flare ups and intermittent pain.

Recovery from rib resection was difficult for me, being older.

I may have surgery on the left side-if the pain becomes unmanageable.

And no, I have not returned to work per my Dr's recommendation to avoid work requiring "lifting, repetitive arm movements, extending the arms, etc. Once you have TOS, even after surgery, you always have TOS." Very difficult to find work with all those exemptions!

I hope my experience is helpful to you.

Take care,

~Robin"

**I am always happy to answer any questions-feel free to email me.
My hope is that at least my pain can help someone else dealing with their journey with TOS.

Still on the TOS path...

I can do more than before, but not without consequence.
The stern speech my surgeon gave me about "Not doing repetitive arm motion, or overhead, or heavy lifting or else..." runs through my head every time I pick up the pruning clippers, or pull down on the garage door, or push-mow around the house.

Believe me, I pay for doing those things with increased inflamation and pain.
But life goes on and things need doing.

The side I had the resection feels good.
The side that still needs it feels tight inside-which would only make sense to a fellow TOSer. It's achey, lightly throbby, comes and goes.
It is liveable for now.
I just DREAD having that surgery (most especially the recovery) again.

I think about an elderly woman I cared for once, back when I did home-caregiving.
She'd had knee surgery years before, and it was striking to me the difference.
Her knee that had been operated on was great, held her weight, gave her no pain, no trouble. Her other knee however, was a constant source of pain and kept her from enjoying life.
"I should've had it taken care of years ago like my other knee", she told me one day.
"I know I should have, but I just didn't want to and now what's the use, I'm too old for that."

Yes, that moment, that conversation, that vision of her two knees, one good, one so painful that kept her from living...it runs through my mind when my arm/neck throbs.

I know....I know.

TOS ladies, consider reduction surgery.

I am addressing the women with TOS today.
I will be candid-Do your bra straps dig into your shoulders?
Do you find it difficult to even wear a bra?
Do you have cervical ribs?
Do you have weighty breasts that pull down on your neck and shoulders?
Have you already had resection surgery, but find some if not all symptoms returning?

I've read several reviews and personally talked to women who have had tremendous relief from back/neck/shoulder/arm/jaw pain from breast reduction surgery.
If you are a woman with TOS AND large breasts, especially if they are pendulous, please consider the following...
*Breast Health Online Forum has testimonials of many women who have found pain relief from reduction mammaplasty.
*Pain clinic website recommends breast reduction for pain control for women with Cervical rib syndrome and overly large breasts.
*emedicine mentions large pendulous breasts as an implicating factor in TOS symptoms.
*Breat reduction for TOS?
*Patient testimonial of relief from reduction.
So if you are a busty woman who also has TOS-especially if you have *cervical ribs*, consider the idea of looking into breast reduction-may give you alot of relief and alot of times insurance will cover it.

TOS in the news...

Link->Saltalamacchia says yips are gone

Hey, whatever helps, I say!

The symptoms continue

I talked with my son on the phone the other day, asked him if his arm ever bothers him now since his rib resection in 2005.
He said yes.

My heart dropped.

"But, he said, not like before surgery.
It hurts sometimes, when I'm walking around for a long time with it hanging down. I still have to hang my hand on my opposite shoulder to relieve the gravity pulling down on my arm.
Only once in a while, but yes, it still happens."

My son was the first one to blaze the trail of rib resection surgery in our family.
My heart is sad at this news of his continuing symptoms, because I know all too well that ache can keep you from plugging into life when it gets intense.

I wonder what could help him now?

Sigh.

The Journey takes a new twist

Lately I've been back to the familiar cycle of aching, spasms that wear a person out.
Still have not had left side rib resection.
Saw a new Dr. with hopes of some cortisone shots, and a referal for some refresher physical therapy.
I walked out deflated, in tears.
He flug a new diagnosis on me like a stinky wet blanket.
One that I disagree with...but is rolling around in my mind today.

Well who the hec with extra flippin bones in their neck like mine wouldn't develop chronic muscular pain?!

I guess I'm just not fond of 'labels' if they cannot be proven.
And even then, why the focus on the label for the problem and not on educating and equipping people to deal with it? Find some relief?

hmm?

One year rib resection anniversary

I read a book recently that greatly helped adjust my attitude toward pain.



My synopsis of the book, Dr Paul Brand talks about the life of lepers, who lose the ability to feel, no pain, and that is what kills them. He goes on to talk about his life experiences with patients and how fear, lonliness, helplessness and other emotions affect our perception of pain.
I gleaned much from this book and highly recommend it to anyone dealing with chronic pain. So much of the pain we feel is in our minds. There is hope to deal with that and live more fully-even with pain.

Hauling buckets of dirt,
pulling and carrying armloads of weeds,
carrying armloads or rocks,
dragging bags or mulch,
planting bushes,
using lightweight weedwacker.
On the anniversary of last years' rib resection,
this is what I was doing.

All in all, I'm better.
I have learned to adapt.
And I try to adjust my attitude.
To not be a victim.
Life is good.
Don't touch my neck or shoulders-raw nerves!
And on rare days when the pain flares,
I take it as divine signal to slow down,
tune in and readjust whatever I'm doing.

My left side is actually affected more than the right one, with my pulse instantly stopping when I just turn my head toward the right-cuts it right off...but I was having more pain on the right side last year.
Doc recommended surgery for the left side whenever I'm ready.
At this point, I'm not.
More than the surgery, the helplessness was excruciating, for me. (I hate asking for help-being dependant).
Even though I'm good now, mostly happy with my surgical outcome.
Not sure I ever will be ready to sign up for another one.

I thought

For the rest of my life, my body will be missing a bone it was born with.
My entire first rib.
Gone.
In it's place is an un-natural empty space.
I rub it, it aches.
I get pokes and zaps occasionally.
I imagine it's scar tissue forming, filling up the space, attatching and getting jerked on as I move around.

The scar in my armpit is numb.
It is painful to put on deodorant.
A nerve in the underside of my arm feels pinched most of every day.
That light, constant feeling of a needle sticking in there, then rubbing around as I move my arm.

I do not do the stretching exercises the doctor and physical therapist gave me to do.
It hurts too much, causes inflamation that send me into a whole cycle I'd rather avoid.

Although these things continue to pester me, the arm throbbing only comes on occasionally now.
My need for pain med to be able to think or function has greatly reduced, for that I am thinkful.
I thought surgery would restore me to myself.
I thought I wouldn't miss my rib.
I suppose I might not if the soreness and poking feelings didn't remind me.
I thought "hey, a little surgery and I'll be good as new!"

No.
There is no going back.
Only doing the best I can with what now is.
What more can any of us do?

If you're wondering if I am regretting surgery, I'd say that while I certainly have had those feelings during this healing process, I don't exactly feel that way right now.
I just feel a tad bit sad.
I had unrealistic expectations I suppose.

A fork in the road of my TOS journey

I have decided against having another surgery at this point.
I am just not ready.
It's only been six months since a rib bone was cut out of my body.
It's just too much to soon, even though the right side resection is accomplishing what I had hoped for... so far.
No constant arm aching, neck has not locked up in months.
I cannot express how happy that makes me!

For now, the left side will have to wait on surgical intervention.

So onward I travel, on my lifes journey- with TOS.

Second, third, fourth, and fifth thoughts

I have decided that I made a hasty decision about having the left rib resection.
I was in the presence of my surgeon, who was so pleased to hear of my outcome from the right rib resection that he was all smiles and even asked for a hug-which is quite the opposite of the first time I met and spoke with him about our son several years ago...he seemed to have quite a 'god-complex' back then.

So now I am thinking it over. I'm still on the schedule, but Im feeling pretty sure by weeks end I will cancel the surgery.
I am just not up to spending another 3-4 months being dependant and healing and in so much pain again...not right now, not so soon.

I believe a large part of my current issue is the weight I've gained from being inactive, thus the chest size has gone up and that impacts my shoulders and arms greatly. The bra straps that dig in are a problem too.

I believe if I lost the extra weight I've gained, and stopped wearing a sports bra thats too tight, that my left side TOS symptoms may very well feel alot better.
I think I want to give it a try before committing to being cut open again.
I think.

There is the insurance-which is paid up for the year...
but how lame is it that I would let that dictate to me to have a surgery before I really feel its necessary?!
Yeah.
So Im mulling it over.
Pretty sure I'm going to put it off though.
and now you know.
If I'm doing the wrong thing, please feel free to comment and let me know.
Thats the scoop.