Pain and the weather

Today it is quite humid in the Midwest, USA.
My hands are swollen, arms, neck throbbing the moment I got out of bed this morning.
I'm getting a slight bit of tingling in my hands.
The skies are grey, rain and thunderstorms are in the forecast.
I would love to understand how and why weather affects my symptoms.

Today makes me want to move to the North Pole.

http://www.intellicast.com/Health/AchesPains.aspx

Mini update

I have several things on my 'list of things to try' to see if they bring some TOS relief.
I tried a couple recently.

I thought massage would maybe help loosen tightness.
It felt great while I was getting the massage, an entire hour. The massage therapist was diligent in avoiding my neck areas that cant take pressure...but on my drive home my right arm started burning, aching, and three days of that are enough to convince me to stay away from massage.

I also got some trigger point lidocaine injections in my neck, and for about ten days my arm pain was GONE and I was singing my Dr's praises. But I overdid it last weekend doing yard work, and the arm pain has returned. Maybe the shot wore off? I had a trigger point injection in the left side of my back two years ago and that pain has not returned since, so I'm disappointed this last right side neck injection isn't helping as I had hoped. I will ask about more injections, maybe Dr. didn't hit the right spot?

Also, the ABM sessions are on hold, for now. I plan to return, but I've had some flare up's of pain lately, and my ABM therapist says the brain is not available to learn and change when it is locked in dealing with pain. So, I need to address that first and then I could go back to those sessions.

So that's three things on my 'to try' list that are not panning out as I had hoped.
Next on my list are:
Acupuncture, more trigger point injections, lidocaine patch.

I'll let you know how those work out.

Another TOS story in the news...

Guitarist has a bone to pick, and a survival story behind it
Read the full story here...


http://herald-review.com/lifestyles/health-med-fit/guitarist-has-a-bone-to-pick-and-a-survival-story/article_a47a14ba-a222-11e2-bdcd-001a4bcf887a.html
 

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.

TOS in the News

The following story was so encouraging for me to read.
Sylvia Sabin is living with TOS and not letting it keep her down!

Woman needs only one arm to get a hole in one

"Sabin's left arm hasn't been of much use to her since a 2002 car accident prompted thoracic outlet syndrome, multiple surgeries and a combination of pain, numbness, tingling and weakness caused by pressure on the nerves or blood vessels that pass into the arms from the neck.
It's certainly no help in swinging a golf club.
"My hand would turn blue," she said.
So Sabin, 64, swings with just her right arm..."
Read the full article here.  

Read more here: http://www.sacbee.com/2013/03/06/5239478/woman-needs-only-one-arm-to-get.html#storylink=cpy

Givin' up some praise

I recently took part in a TOS survey.

One of the questions asked if I used social media to praise or give credit to my doctors/surgeons. Another question asked if I used social media to refer others to the doctors who have treated me for TOS.

I have and will continue to refer people to my TOS doctor.
But I must confess, I have not given proper acknowledgement nor been nearly as thankful as I should have been for the treacherous work he does attempting to fix peoples bodies. I mean, he literally gets inside, delicately rearranges the things that cause pain- it's just amazing to me the work that fine surgeons do!  The possibilities for renewed life and hope people can have through the work doctors do...so awesome.

Nurses, a caring nurse is seldom thanked for going out of their way to do extra little things to make their patients more comfortable. We leave the hospital and move on with our lives. I know for myself, I intended to send a few thank you notes to some nurses that never got sent in the postop haze of life.
But I do remember them. And I am so very thankful for the nurses who were excellent in their care of me and my kids after our rib resection surgeries.

I think what has me expressing all this gratefulness is that our personal family doctor moved away recently, and I will miss that doctor greatly.

Unfortunately it seems to be true in life, you don't appreciate what you have sometimes until it's gone.
A doctor who listens...really listens, takes time, works with you, and takes you seriously is a treasure.

A treasure that all of us with TOS should be thankful for.
Don't be afraid to tell your doctor you appreciate them either.

After my sons rib resection, he was all healed and back to normal teenage life, playing football.
I sent his surgeon a thank you note with a picture of my son in his football uniform, so he could see that he had indeed helped restore him to a normal life.

We've all read about and even experienced alot of difficult situations regarding some doctors lack of care . It's easy to find the bad stories.

Let's try to give equal time to those in the medical profession who have done a good job and are worthy of our respect and appreciation.

When you have a child, or in my case two kids with TOS, and they are in constant pain, and a doctor does his best to help them, and your child goes on to live life and not have so much pain--that is worth more than words can even say!

So to all the TOS surgeons, physical therapists, nurses, pharmacists, all those in the medical profession who have dedicated themselves to helping ease our suffering-
@>--Thank You!

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.