I'm an Ogre, or an onion

I really am in a bit of shock after my doctor's appointment today.
Doc acts like its perfectly 'normal' to have shooting jabbing stabbing pain down my arm. At least for the whole two minutes he had to talk to me before leaving the room.

I'm just flabbergasted b/c my kids both did great, and now here I am feeling so stupid for going ahead with this rib resection, over-riding my own doubts.

Honestly, I feel my family sorta pressured me into the surgery b/c they were concerned for me and tired of my hurting all the time and just wanted me 'fixed'. But now instead of being fixed I'm just complicated!

The last thing I wanted to hear today from my doctor was that -"You're(I'm) an onion with layers of problems."
Yep, he actually said that to me.

Remember from the movie Shrek-

". . .Layers. Onions have layers. Ogres have layers.
Onions have layers. You get it? We both have layers.
-Oh, you both have layers. Oh. You know, not everybody likes onions."

I really do not know how to mentally deal with this. Instead of progressing and getting better I am feeling like my life is regressing.

My doctor is an old military surgeon, and sure he knows his stuff, but he almost has a suck it up attitude.
I dont have alot of suckitup in me, I'm a wimp.

I never figured being bent and twisted into my life plans.
It is what it is I suppose.

Might explain all the crying...ha.

All I can do is keep on keepin' on.

The devil is in the details

Details to follow that would probably only interest a fellow TOS patient...

Tomorrow will be exactly 6 weeks postop for me.
My neck-scalene muscle cramps up into my ear, jaw and upper back,
Right side of chst still aches
Jabber pains in my arm, knife in upper back, end of shoulder still feels different...frozenish, knotted.
Even had a few tingly jabby pains in my pinky & ring finger earlier.
Drove a whole half hour to town today...feelin it now too.
Sore. Though only pain meds once today-otc.
Really thought by now I'd be more back to my old self...doing more, with less pain.
Ready to see the doc this week and see what he has to say.
Not much of an update, same ol' same ol'.
Thats the scoop.

The ripple effects keep on going

I have gained enough weight over the last 6 sedentary pain pill laden months that none of my clothes fit.

I couldn't take it any more and put all the clothes I cant wear right now away and got just enough 'fat clothes' to get my by for 2-3 months until I can loose this flub.

And I have been a little more active recently.
Though every night i realize I've overdone it and I hurt all over.
Especially right in my incision (armpit) and in my back where the rib used to be...up high. Slight arm ache.

Funny thing I'm noticing is I cant fully yawn, a muscle in my neck kicks in and does something in my jaw that stops me, also into my ear there is pain.
and It hurts all the way down my arm into my hand if I sneeze of inhale deep really fast...hurts.
Weird.


The weight I've gained is not doing me ANY favors due to a heavier 'chest'....very big problem for women with TOS.
So ready or not, time to get moving (somehow), and stop snacking so much, and get the weight off!

One week till doc visit, really interested in what he has to say to me about how im doing, if there will be phys therapy...?
Thats the update folks.

Driving, sleeping and mowing-oh my!

So true to my post yesterday, I drove the two miles to town last night.
Driving did make me slightly uncomfortable as it was windy out.
I forgot how much driving, even driving a car with easy steering, can make your arms & upper back flare up. I do wonder if its the stress from driving in combination with engaging the arm muscles that cause a problem for TOS patients.
TOS folks do seem to be more sensitive to stress than most folks, causing pain in our neck/arms/ upper back. I wonder why?

Anyhow, I also did sleep the night through in my own bed...ah, it was nice in one respect, yet this morning my arm is aching and the knife in my back..well, its there.


Yesterday after I posted I did wind up having to take meds 3x, my back up high-I assume where the rib was cut away, was killing me.
I tried to stay busy as a distraction to the discomfort.
Baked a cake. Did lots of dishes.
Wound up hurting more. Took more pills.
Im concerned taking so much pain reliever is not good for me.
Whats the choice?
Need to talk to doc about that next week.

Today, neck into ear pain is slightly there-it wasnt yesterday.
Mostly arm is just hurting, like someone is pulling a nerve through my arm from my shoulder to my hand. Pinchy stabby achey.
So fun.
Right breast kills, so sore all the way to the chest bone.
Hurts to put my arm all the way down and my underarm to touch my side still.
Shoulder muscle still has a hang up, wont let me get my arm all the way up, hurts alot when I try.

Today I look out the window of the farmhouse here where we live and I sigh.
I sure do miss mowing.
Crazy, yeah, but it was always time alone with my thoughts.

I've had some good talks with God, or with myself, over the years while mowing.
I sure wish I could just go jump on the ol' mower and have a god talk today.
I could use a good talkin'.

5 weeks postop tomorrow~

I spent two back-to-back, insomnia-laden nights reading a book I picked up I thought might help me cheer up...Always Looking up-the adventures of and incurable Optimist, by Michael J. Fox.
Turns out it's not so much a self-help book on how to obtain optimism in your life as it is simply a book about Mr. Foxs' Hollywood and political exploits, and his experience with Parkinsons and personal opinion on embryonic stem cell research.
I'll be donating it to our local library, it's not a keeper for me.
Guess I'll keep looking for that how-to manual on changing ones pessimistic nature into a sunny upbeat outlook:)

This morning I am sore, but its been since yesterday afternoon that I took any pain meds (Advil). Pretty good for taking a tumble over the weekend.

Still sleeping in the recliner, though I've tried sleeping for little bits here and there laying flat on the couch or in bed, and for a little while it's ok.
As long as I don't move that certain way that makes that wierd feeling in my chest where my rib used to be...that pinching feeling that freaks me out and reminds me they actually took a rib bone out of me and gets me to thinking about the gory details of it all.

I watched the tv show about Farrah Fawcett and her battle with cancer over the weekend too. Shes fought so hard to live.
Gives me a different perspective on my puny troubles.
I have my aches and pains, but I do have my life to look forward to.
I need to start living it.
Tonight I'll try sleeping in bed again...with my hubs.
Miss that terribly.

What else?
I am going to drive today.
Two whole miles to a book discussion at the library in town tonight.
It'll be a first in 6 weeks. I'm looking forward to it.

Yeah, I'm stiff, sore, arm still isn't right.
but I gotta plug away doing what I can do, stop focusing on what I can't.
Trust me, when the pain rears its ugly head, what I can't do becomes the only thing I see, brain shuts down.

I havent been doing docs exersizes like I should.
Just the arm walks up the wall.
Today I'll try doing the others.

All-in-all I'm not feeling too bad this morning.
We'll see whats up after the day is over.
I tend to over do it and have regrets.

Now what??

Discouraged today.
I decided to have rib resection surgery because of the arm pain.
Now that I'm weaned down to bare bones with the pain meds, the arm pain is back today with a vengeance!

This blog is not about whining.
It is about recording for my future memory and possibly the benefit of others struggling with TOS my journey.

Today is a bump in the road.

I am a firm believer in being good to ones self when you're healing.
Being gentle, talking to yourself in positive ways.
Today the pain has my thoughts all knotted up and I feel restless and stuck.

I reach for a pain pill and pray for relief.

But most of all I pray this does not suck me down the hole of despair.
I want to still have hope this surgery was good for me, today is just a fluke.

Another restless night

Not sleeping well lately. Very restless.
Started getting shooting pains down the underside of my right arm-they really kill for about 15-30 seconds, like a needle being jabbed down my arm
jab
jab
jab.

Neck kills today.
Not sure Advil will do the trick.
Arm exactly the same,frozen at the full range, hurts all the way down my arm after raising it up high.
Ear pain-connected to the neck pain.

Stabbers in my upper back.
Thats how I am at 31 days postop.

I want off!

It's been a month and a day now since my right sided Transaxillary rib resection and thoracic outlet decompression...
I have decided to try to stay off the prescription painmeds as much as possible now..
I absolutely hate the side effects.



So today, for the second day this month I feel fluish...
I am guessing its from withdrawl from the meds
Hate this.
I also wonder if the weather isnt a factor in how I'm feeling today-extremely lethargic.
Still working on getting my arm to work right.
Never had the problem before surgery.
I also cropped up with a nasty sore inside my mouth on my gums I wonder could be from the tubes and stuff they cram in your mouth/throat during surgery??
My ear and jaw are killig me also, again, I wonder if its from the stuff they put in my mouth??
I suppose its a trade of pains eh?
No throbbing pulsing arm pain, but now I get shoulder pain and mouth/jaw problems...such fun.

One month ago today...

I cant believe a month ago today I was just coming out of surgery.

I do think I'm coming along, Im just really impaient, and a wimp about pain.
I want it all healed and gone yesterday.

I've gone back to drinking coffee...I'm just SO tired all the time and it gives me a pep for at least a little while.

I am concerned now that surgery messed up my shoulder.

I had NO problems with it before surgery, now its like the muscle is not working, all frozen up and hurts like the dickens when I do my 'walk your hand up the wall' exersizes...ow!

I had hoped the verdict would be in as to the rib resection being a success or not by now, but I'm still waiting to know for sure.

I'm giving it till my next doc appointment at 6 weeks postop...
then if things arent looking better I may go bezerk.

Just givin' you fair warning:)

One month post-op tomorrow...

I woke up feeling SO stiff...slept in the recliner.
Still can't lay flat for very long or it feels like a knife is going through my upper back.

I have been able to go longer periods w/o prescription pain meds, and also able to do a little more each day.
Which is good now that our son is home from college for summer break...there's more of everything to do!

My kids & i were all standing in the kitchen today compairing notes on where our rib resection scars are, where we have numb areas, how we feel post op.

I still feel hopefull when I look at my kids and how well theyve done, that I will feel better and be glad I had this surgery.

Wheather or not I get to the place of wanting to do the other side is another story...
I have been feeling the TOS symptoms on my left side more the last few days.
I need to give it enough time to be sure I have relief on my right side first.

I survived church yesterday.
I'm very glad I went.
I noticed two 20 year old down syndrome brothers smiling and singing their hearts out, and that made my day, reminded me that ALL life is precious and anyone can encourage someone else.

Doing my exersizes is going slow. I'm a wimp.
If I could just get past the tiredness, thatd be a major help.

Doctor visits and sleeping situations~

I saw my doctor/surgeon today.
He looked at my underarm scar,asked how I was doing, asked me to lift my arm up as high as I could, said I was doing well for 3 weeks post op.
I talked to him about my shoulder being frozen, and the chest soreness, he explained some shoulder anatomy to me and said its all normal for the healing process and he is pleased to hear that much of my TOS symptoms are gone now...(the TOS throbbing, not the healing from surgery throbbing-yes, I can tell a difference).

"Keep up with the exersizes-twice daily, and check back in 3 weeks."

ok.

So I will dutifully follow his orders and see where I am in 3 weeks.
I've been so inactive for months that just the little trip to the doc and stopping at a couple yard sales on the way home have made me so sore now.
I did find some fat pants at the yard sale though, which I unfortunately need.

I slept in my bed last night for the first time in 3 weeks.
Made an incline/wedge out of pillows and blankets...which all fell apart in the middle of the night so it feels like my back has those knives stuck in it again.

Motrin's not cuttin it today....ugh.
That's day 24 for ya.

Day 22...

I am SO sick of sleeping in the recliner!
My back was in knots this morning.
I'm back to more prescription pain meds, and muscle relaxers.
I dont want to move if I dont take somthing for the pain, so I give up.


I feel like knives are stuck in my back.
Shoulder feels frozen, tired, neck pain running up into my ear.

I am doing alot of thinking about 'getting a life'.
I did a couple hours of reading online about vocational rehabilitation today.
Just reading all the hoops you have to jump through to get help wears me out.

My family has slacked off big time, they're sick of me...so am I.
The first week or so they were great.
Last night when I called for my huby he hollered back-"What?", instead of coming to see what I needed.
Nice.

I hate asking for help, and now that I feel like a huge inconvenience it only confirms to me that I should just take care of myself as much as possible, less disapointment that way.

Don't get me wrong, things could be worse, I have alot to be thankful for.
I am thankful.
I'm also feeling like a burden.
I want to find a way to focus on something besides my stupid physical condition.
I'm tired just from thinking about it.
TOS stinks.

post-op day 20

Ibuprophen is not cuttin it, so back to prescription pain meds and ibuprphen in between.
I've been doing the 'walk your hand up the wall' exersize....ow.
I can get most of the way up...just dont look at how my lower half is contorted to get my arm up like that:) lol

Last night I tried a couple of the exersizes the doc wants me to do.
Laying flat on my back, arms up with hands tucked under my head, just rest like that to stretch the pecs...I cannot do it.
right arm will not go back like that.
Then there is the issue of having to get up off the floor from laying flat like that.
Which is discouraging.

The ol' mental challenge to be patient with the healing 'process'
and not get too woried (yet) or wound up wondering why I'm not very functinal (yet)...
it's definitely a challenge.
Especially when my neck starts cramping up, just like before surgery...and I start thinking "now, there it is, that daggone pain in my neck. That is the pain that is supposed to be gone now, so why am I feeling it?"
Thats a big mental roadblock.

It hurts to let my underarm come together with my side...like I want to have a space between my underarm and my chest at all times.

I'll try to end on a positive note-
I'm dressed in real clothes today, bra loosely, and I can deal with going 5-6 hours between pain med doses now.
so that's good....well, it's better.

Right Rib resection transaxillary photos & update-day 18

WARNING-GRAPHIC POST-OP SURGERY PHOTOS BELOW
Photos Copyright property of blog owner.
Do no copy or transmit without prior permission. Thanks.

Today is day 18.
My shoulder muscle feels frozen.
The neck muscle running up the side of my neck is hurting, again, like before surgery.
I'm down to taking prescription pain med at night and otc ibuprophen during the day.

Today I am beginning to wonder if this was a mistake.
The pain/discomfort I felt prior to surgery was a throbbing, pulsing ache.
Now, post op, it is a pulling jabbing, burning.
Maybe that's a good sign, a sign that its muscular in nature and can be overcome with physical therapy?

I can hope.
I've shed my share of tears the last couple days.
Today I will try to figure out how to wear a bra or some sort of chest support so I can go out in public.
Thinking about having to figure that out makes me want to cry again.

It is what it is.
Buck up and deal with it.

That's the scoop on day 18.

*Proceed to scroll down if you want to know what a rib resection transaxillary scar looks like.
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Earliest post-op photo taken at 4 days post-op



One week post-op



Today-day 18

Back track-about my kids' TOS experience-our son

Our family has the unfortunate experience of having three members who've had to deal with TOS.
My son began having constant nagging arm pain around age 14, when he went through a growth spurt. Suddenly, he could not walk around for long periods, even though he had been otherwise very healthy and played sports.
He would hook his hand onto his opposite shoulder instead of letting it hang by his side to try and relieve the aching, and after a bit he would have to go sit down.
We saw the doc, they took xrays, saw that he has bilateral cervical ribs and suggested we consult with a specialist.

We got online and started searching for a doctor.
It was 2004.
We saw graphic surgical photos that nauseated and scared us about the surgery that could possibly help our son.
We cried, we prayed.
He continued to hurt.

Then a few days into our search, we found a TOS surgeon who had run a TOS clinic for years...locally.
We consulted, he recommended surgery.
Our son had a left rib resection the summer of '04.
Three weeks later he was off all pain meds.
Three months later doc cleared him for football training camp.
He healed crazy fast, did excellently.
I had him send a thankyou card and picture of him in his football uniform to his surgeon.

Little did we know we would be back the very next summer with our daughter.

Our kids' TOS-the daughter

So you know our son had TOS, a rib resection, and did fabulous.
The following summer his kid sister grew a couple inches and began... having arm pain.
Yes, here we go again.
We xrayed. There were bilateral cervical ribs.
We tried some physical therapy for a few months, to no avail.
We requested a consult with our sons surgeon.
He did the tests, recommended a rib resection.
So, the summer of 2005, our daughter had a right rib resection.
She did great, she even emailed her friends from the hospital within hours of waking up from surgery!
She went home the next day.
Six weeks later, she was riding a bike and loving life again.
She did a month of physical therapy.
Shes doing great now.

Her only complaint, as is our sons, is that her armpit is numbish, which makes shaving difficult.
But the arm ache is gone.

So after all that, when I showed up 2&1/2 years later to see the sugeon for myself, I suggested we should get a punch card discount family plan for these rib resections!!
And I meant it:)