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 :)

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.

Hope for the fellow TOS traveler

In my research for something to help my own continuing TOS symptoms,
I have seen recommendations for Feldenkrais, a method of gentle mental/physical therapy.
After much online research, I decided to purchase the book Awareness Through Movement by Moshe Feldenkrais, the man who developed the method.



I am impressed by the structural knowledge this man had, as a physicist, into the human body and how it can function optimally.
I located the nearest Awareness Through Movement group class and attended recently. It was a relaxing, plesant, informative experience.

In the matter of an hour, I learned a few things about myself and how I move and use my body that I had not realised. Simple, gentle, helpful.
The nearest class is an hours drive away, so for convenience purposes, I decided to purchase a cd of 48 Feldenkrais lessons I can listen to and do daily at home.

I find with each session, I learn more about my body's patterns and I see small yet noticeable changes in the way I move and think about my body and its ability to overcome habits developed from TOS.

I have had difficulty with some of the shoulder circles due to the Cervical ribs I have, so I simply imagine myself doing them, and relax.
I have found this method to be quite helpful so far...I'm only 10 days into it.

If you are a fellow TOS traveler I hope you will consider looking into this simple, gentle, helpful method.

Be well.

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.

Pep talk from someone who really understands

My daughter actually gave me peptalk a few days ago thats really helped.

Sitting across the table from me, she said

-"mom, youre GONNA get better. Dont you remember how I had trouble after surgery the whole year in gym class, I couldnt hang my arm down, but eventually the pain went away. Yours will go away too."

Boy, did I need to hear her say that.
See, she understands.
I'm really blessed by my kids, who unfortunatly have both had TOS (& cervical ribs)to deal with.

Several people, who are 'normal' or who have not lived with TOS, have tried to say encouraging things to me during my recuperation. But when someone who has been through what you are going through says the exact same words of encouragement-theres depth of understanding along with an empathy to the words that give them authority to authentically encourage.

So now I'm trying to change my mindset and move on with my life.
Trying to not marinate in my physical situation with TOS, but find a way to keep living.

The pain is not as bad, but still my daily companion.

Sure has a way of changing your life, pain does.

Day 14, better

I am very glad I stuck it out and switched pain meds yesterday.
Today is much better, not feeling jittery, emotional, confused, it was scary to feel like that.
I am in more pain on these lesser pain meds, but I'll live with it over that alternative of those crazy strong narcotics!
I am hating anything touching the back of may arm, it is numb/sensitive.
I can raise my arm 3/4 of the way up-it kills, and I feel a knife in my back, my breast hurts, my arm feels like I dont have complete control.
I can't keep it bent for long or it stiffens up, gotta move around.
but overall a better day. Daughter drove me to get groceries...it was wierd to be out of the house after 2 weeks.
A nice sunny day though.
K, I'm tired, more tomorrow.