Hello Everyone,

Hope everyone is having a great week!

As most of you old time BT poeple know I had TOS surgery a year ago. I am doing much much better than I was prior to the surgery, but I just can't get off the muscle relaxants once, sometimes twice a day.

I get up in the mornings and within an hour (maybe due to my coffee), the anxiety starts and so does the flare up. In the shoulder and all the way down into my hand. I take a muscle relaxant and within an hour I'm good for pretty much all of the day.

If I do something too much thru the day, such as sitting in a chair for a long time, lifting alot...typing alot..I will most likely have to take another one at night.

Does anyone know, is this pretty much a normal thing I will have to live with forever? I just keep feeling like there is still some impingment going on.

I'm making another appointment with the vascular surgeon that did the surgery just to talk to him about it. I'm afraid he will stop the muscle relaxants. I will be misserable if he does, but as many of you who have had surgery know, some doctors think you should just be all cured now.... with no more problems.

Thanks for any input!

Peggy S.

Hi. i haven't had surgery for Tos yet (surgery on a herniated disc I have had). I know exactly what you mean about the anxiety. I worry at the slightest onset on moderate pain and get sooooo worried about it getting worse that I think I bring on the major flare ups! I so need some Soma again... I was on it 2 times a day but got pregnant and went off it.

I am starting Botox tomorrow for my muscles - did you ever do botox?
Don't let them take your meds away if you think you really need them!

Hi PEg,
Life with TOS even if it is in remission is a day of balancing and trying to know how to not over due.

That is a huge order! IF you pace and do a little typing, no more then 15 minutes at 4 times, then staying an hour in front of computer. No longer ironing, hang things when they dry. Try to do a small load of laundry instead of 5 on the weekend. Don't do floors on the hands and knees, put rags on the feet instead.

No lifting over the weight of a gal of milk more then once, and a quart size infrequently. USe a stroller or cart to get thigns from room to room, including children and pets. No painting wall, it is going to kill you, get help. I remember a few months after De's surgery she eanted to make apple pies from scratch for Valentine's day. She was never the same after peeling and cutting apples, a few bags of them.

When walking dogs, put the leash through a belt on your waist, not pull your arm. I have Clean-up wipers in the Bathroom to wipe everyday instead of scouring on the weekend. I use the pledge cleanups for all surfaces. I have the Mr. Clean mop and scrub for the bathroom for when I do clean.

Burn candles, hide clutter...sorry, house is not at all preinjury, can't do it. Between the hurting and no time with many family obligations and appointments. I always have help to change the sheets.

Also, I take meds, I will never stop my valium 5-10 mg for spasms and migrains, topomax, two darvocette or one percoette at night. I did not have surgery, nor am a canadate now for surgery. Just because you ahd surgery does not mean you were cured, you are better hopefully. Baby yourself to not have an increase in symptoms.

I use tons of Biofreeze, where the dagger is in my upper back and wings; ice on my neck when it is knotted. My bed buddy in the micro wave for across the traps.
Trigger point injections about three times a year.
Epidural spine injection in the C5 for long term nerve calming (lumbar too).

Use a cart, small grocery orders, not huge ones, Don't drape the arms with tons of bags, push the ones you do have. Applying for a handicap parking placard if it applies to you.

Keep a pillow on the lap when sitting, at the computer, even in the car to keep arms up not dragging. Oh, a hot tub or going to someplace like a health club that has one, or tanning booth to get the deep heat. A massage, if from the hot tub, or a great PT. Some use a infra red lamp with a clap light holder for aiming on their sore back.

Bio-feedback, many of us from the stress of daily TOS restrictions can have a form of anxiety much like post trumatic stress syndrome. Heart ache at not being able to be like we use to be. SHortly after the car accident I developed anxiety-panic disorder. When I am real bad the forum suportive family helps me through, I do my bio-feedback, and a few days it is much releived.

I think in most cases of tos, the rule is going to be to take care of yourself to manage TOS and not let it manage you. If your day is in a high level of anxiety, trying to get everything done that you wanted taht day (type A personalities) it is taking it toll on your body and mind.

I have a huge type Z personality as I call it. I can and will go away on vacation and know there is laundry to put away, the bathroom floors not done, can't remember if I swept in the last two weeks, Don't care if I remembered to make the bed, and think I had someone put away the dishes.

If the house burns down or burglers get in the cops and firemen won't know if it was me, the bad guys or fire that left a mess, lol. (although as cops we love when people leave things well cleaned and dusted, polished. Best for picking up finger prints!)

I highly suggest learning bio-feedback, the deep tummy breathing yoou feel your low stomach rising with breaths NOT your chest; Learn how to tell each inch of your body to loosen up and be floppy. Do this every single day!

Treat yourself like you are far into a pregnancy. Even if my body fails me, I like to have my mind active. Even if I will never work full time in my firld or social work, I will never have my degree taken away from me.
I did scrap booking, geneolgy, serve on committes in the town and support groups.

I have to take a nap, I get exhausted. But, I am now over 50.
Hope you can find something that helps you feel better.
Di

Thanks Ladies so much,

I understand everything you are saying Di. I really do feel good other than just a slight flare up for a few minutes each day.

Thank God, I am self employed so I work only when I feel good.

I hate the anienty more than anything. It causes the muscles to tighten and the hand to throb.

I don't know how some of you live in the cold weather with this TOS. I live in Florida and I know if I become just the slightest chilled, my chest hurts like crap. I could not imagine being in a cold climate. I could never leave home.

Thanks for the advice on the breathing. I do also get out and walk 3 miles everyday and I feel good with I breath deep breaths when walking. Releases alot.

Hope everyone has a wonderful blessed Thanksgiving!

Peggy

As I was running late for PT/Nerve block appointments the other day, my wife pointed out that I complained about higher pain levels when stressed. I hadn't thought about that before, and realized that she was right. However, I am a very Type A personality in a high-stress career. I'm struggling to control the stress-inducing things AND my response to them. Just letting go is a struggle for me. anyways- here's to hoping we all have (relatively) good days!

Yeah, that stress will do it to you everytime.

Since I develpoed TOS, it doesn't take much to cause problems for me.

Peggy

Hi,

I had surgery in July 2005 and had six months of medication free life and no pain. I then moved on to physio which completely ruined the entire operation. I am now over a year passed the surgery living in pain again and having to watch every exercise and move that I do so they do not cause more pain.

I am now taking lyrica, Zanaflex, diazepam, baclofen, amitriptyline, tramacet, axert for migraines, the diazepam is prn but I usually take it a couple of times a day or more if I'm out.

So there goes the pain free life and the med free life. But that's the way it goes.

I am reading an amazing book that my chronic pain doctor prescribed me to read. It is called managing pain before it manages you. As a nurse I have to say I am really getting a lot out of this book. I'm a chronic pain specialist nurse I worked with cancer patients for over seven years before getting injured at work.

The book has explained things that I already know but it reinforces how to relax and how to get rid of anxiety. It gives you control of your life again. It explains that you are in control of your life and the pain is not. So perhaps many of you should look this book out and read it have to say I would let everybody read it if I could. That way the whole world would know the pain we go through and how we have to deal with it. The things they say to us that make us feel worse would not be said.

I guess my point here is the we all have to make sacrifices and that perhaps the pain never goes away. But don't be afraid to take medications. And don't be afraid to modify your day which is what the book teaches which is what most of you have said for solutions to coping with the pain. We all learn these things but the book reinforces them!!!!!

I hope this helps. Feel free to pm me if you have a questions about the book or want to know more! More than happy to help you.

Take care to all,

Hugs, Victoria

Victoria,

I'm sorry to hear your pain came back after going thru the surgery.

That is kinda why I am staying away from any PT now or other methods they tell me to try to ease what little pain I deal with now. I feel like...it's not that bad that I can't deal with it and it's much much better than what it was prior to the surgery. So, I just deal with it and manage it.

I'm afraid anything else may make it bad again.

I'm just thankful that I all need now is Soma. A year ago I couldn't even go to bed at night without a sleeping pill. I took those for almost 2 years just to be able to sleep at night.

I'm going to check into that book. That sounds really good.

I guess we all take each day the best we can. I am pretty much convinced that I will never be completely pain free. I just enjoy the good days and on the bad ones.....I chill out. I don't know what it will be like in 20 years from now...........oh, that is a scary thought!

Thanks Victoria

Big Hugs to you Too!

Peggy