all too true- do not rush your recovery, because as you can see for many of us this is going to be a lifelong condition. what you do now during and after surgery can shape hoe you recover in the long term.

i know it is hard to take time out of your life and your work to care for yourself, but go easy....it is certainly important.

Johanna

surery in July 2005
 

Hi Shellie,

Welcome!!! I had surgery for TOS on the right side due to an injury at work. I lifted up a patient (I am a nurse) from a toilet with my arm under their arm. I was never the same again....went through the whole thing not knowing what was going on with many different diagnoses.....so in December 2004 I was dx with TOS. Since then done PT which has only done me poorly.

I had my first rib removed and a scalenectomy July 2005. I was in a lot of pain post op. I had a morphine pain pump....but it was then changed to a stronger medication dilaudid. I was in so much pain ACUTE pain, but not the same horrific pain I had pre op. I was a new woman....what hurt the most was the chest tube. It came out the next day. I had my surgery from the clavicle entrance.

My surgeon informed me that the first rib must be totally removed or it could grow back. If it is not removed at the base of the rib and the part where it grows from it could grow back....causing more problems.

I had physio post op and it started in October with pain control.....and I was doing well and was PAIN FREE until physio over did it and I am now in a position of more pain than pre op!!!! Still working on dealing with it.

The most important thing to remember is that if it hurts DON'T DO IT!!!!!!!
this is key to recovery. I started washing my hair about three weeks post op and I was just letting it go and put it up in a clip so it didn't look as dirty as it was.....:eek:

My Mom did it for me for a while. I was discharged the day after my surgery. I was then not given enough pain meds at home.....this is very important. Make sure that you get this sorted. If you are on any pain medications now that must be factored into your post op pain medications.
I took my time at everything....as I said no pain!!!!!!! Pain is damage. you want to minimize your scar tissue formation. I did light stretching in the shower when I was able. I would gently walk my arm up the tiles and then move shoulders around so I would have mobility increased....It took about a month to be able to do house hold tasks like unload dishwasher one dish at a time...but was doing it to keep up my activity. I was out in my garden (parents...my mom was looking after me) a lot and made a huge effort to keep moving.

Lung function post op is important especially if you have a chest tube...even if not....after surgery there is always a chance that you may get pneumonia. Deep breathing and coughing is important. you take three deep breaths and then give a cough....it WILL HURT.

OH sleeping is a Big issue!!!!! I had to sit up on many pillows to keep comfortable an easy chair is best to sleep in if you have one, but you will still need to have many pillows. Lying flat is not an option...or for me anyhoooo....it was way to painful..

I am saying pain a lot, but it is all relative. Hopefully you will find that you have enough pain control so that sleeping is good.

For washing your hair you can use a powder type cleaner and just brush it through your hair and it cleans it. You should be able to find it at a drug store.

I was pain free so ....it can happen.!!!...PHYSIO is key after your surgery...follow your doctor's orders, but don't get caught with a bad physio!!!!!! I can't say that enough. they need to know how to rehab u properly or you will have a massive issue, like me and your pain could come back......my physio put me on the treadmill and made me carry too much weight and it was horrible pain after and now I am back to square one....but we all have to deal with what is given to us!!!!!!!!!!!!!

Hope this helps...feeel free to PM me if you want to ask questions!

Take care,
hugs:hug::hug:,
Victoria

Post-op
 

First, Victoria, I cannot believe you were released one day after surgery. Mine was done in 2000 and I was in for 5 days with morphine pump and tubes. I could not imagine having gone home. Also extreme pain after surgery which subsides but ONE DAY! That's tough. I was in one day for a disc replacement and that was ridiculous.

Best of luck and hope everyone has a good day. Linda

I was in shock as well
 

Hi,
I too was in disbelief when they sent me out in to the big bad world...I wanted my dilauded pump to go home with me....:(

take care,
love and hugs,
Victoria

Feeling a little better about things...
 

Sea Pines raised a lot of questions about my surgeon's qualifications that I failed to ask about prior to scheduling surgery. I got a little worried after hearing horror stories, so this morning I scheduled an appt with him for Monday.

This afternoon I met with my neurologist, and asked her how she felt about my surgeon. She said that she sends all her TOS patients to him, and they have all had good outcomes. She feels 110% confident that I have been diagnosed correctly (I was still a little skeptical after all the years of being misdiagnosed!), and that Dr. Bottsford is the man to do it. She told me she ran into him at lunch recently and they had a "long conversation" about me. This made me feel VERY relieved, because I have been seeing this neurologist since my car wreck in 2001, and she's one of the best in my area. When I mentioned that one of the concerns raised was whether he would do a partial or full rib resection because of the risk of the rib growing back, she was surprised to hear that the rib could grow back. I don't know if she is going to look into it herself or not, but I plan to discuss it with Dr. B on Monday.

It's funny--I brought a book with me today while I waited at the neuro's--"Having a Mary Heart in a Martha World." It's a great book for those of us who do too much and have too little time. The chapter I read today was about worry, and the difference between being concerned about a situation you have some control over, and being worried about something that is completely out of your control. And that there is no need to worry, because if we give it all to God he will carry us through. So I am giving him my surgery today, and I know that He will take care of the rest.

So I'm feeling pretty good again about surgery. I know it's the right thing to do now, and I'm pretty confident about who I've chosen to do it--we shall see how I feel after Monday's meeting. And if I change my mind, then I'll just have to find someone else. Even if it means going to Denver. ;)

surgery
 

Shellie, You have the right outlook. Be positive and go with your gut feeling. Your Faith can help in your attitude. Just realize there are success stories out there and YOU WILL be one of them.

Linda

faith is key
 

Hi,
Faith is key and will help you through everything. I hope that all goes well.

I do have an issue with ANY doctor no matter how amazing when they say that they will be able to 100% cure tos......the post op failure rate is high and for a doctor not to tell you the post op failure rate is irresponsible. I am not trying to rain on your parade.....I am happy that you are making the decision you are and I am not questioning anything...know that...I am just making sure you are AWARE of all of the possible outcomes. I too went into this knowing that I was going to get better and that made a world of difference. I know I would not trade in having the surgery...I had six months pain free!!!

I was told that over 30% of surgeries fail. I have found documents to say that 80% of surgeries do not relieve all pain or fix the problem. so documents change attitudes change, but there is no 100% in medicine, which is why the PRACTICE medicine!!!!!!!!!!!

I just want u to be aware is all....awareness is key....no there are so many things you can't control, but knowing all outcomes is one you can control.

Just a thought from a fellow believer!

love and hugs,
Victoria

My Experiences
 

Shellie,

I am 4 months post-op now so fortunately (or unfortunately) alot of this is still fresh in my head. I too was in a car accident which may have lead to TOS but no one is 100% positive on that. I had done PT after my accident and then for close to a year before surgery...my problems started out as numbness in my 4th and 5th finger and grew into the intense pain I was in (from finger tip to the base of my shoulder blade) at the time of surgery.

I have a rib resection done in late March of this year (right side). They removed the entire rib (which as Victoria has mentioned is very important) through a clavicle approach. I spent two nights in the hospital (issues with my diaphragm) and was sent home on multiple pain meds. I had been off work for nearly two months prior to surgery and am still off work today. My doctor (GP) did not think I would return to work for 6-9 months after surgery

Pain was bad - I won't lie. I had problems lying down but solved that by using a wedge pillow...I lived with heat and ice packs...and basically lied in bed for weeks. It was over a month before I felt comfortable enough to drive and even now I am good for about an hour as a driver in the car. I bought a chair to sit in in the shower which made life a lot easier to shower and wash my hair...I still don't ever dry my hair, as that makes the pain worse.

I started physio about 8 weeks post-op and am still going 3x a week plus 2 massage appts a week. That east up time but is crucial. I have known my PT for about 15 years and I trust her...so far we are in agreement about my treatment and I haven't been pushed too hard there.

My pain is still there and pretty intense at times...don't give up and don't do too much. Ask for help...thats sooo important! I still limit computer time to about 1/2 hour and I find I don't sit still for long. I have learned everyone is different...I question every medical professional I meet about their experiences with TOS patients (many have none!)

I just got back from the beach...it was relaxing...I was cautioned against sun on the scar (and I will admit I can be bad as listening)...at the end of the day NOW I am sore...not sure how I would have felt a month out of surgery. Trust your body!

Take care...and good luck. Feel free to ask any questions!

Just to clarify what I wrote earlier, I know there is no guarantee about the success of the surgery, and I've heard about the 30% failure rate. I am prepared to accept the good as well as the bad re: post-op. My neuro doc isn't telling me that she's 110% confident that the surgery will work, only that I have been diagnosed correctly and that I have picked an excellent surgeon. And just because the neuro doc hasn't known any of my surgeon's patients to have poor outcomes, doesn't mean that there aren't other patients out there who had surgery with my doc and who weren't so lucky. I made an appt to see the surg on Monday, and I plan to ask him a lot of questions.

Thanks to EVERYONE for all the comments and support. And I pray every day that God will give you comfort and peace, and that He will continue to heal your bodies.

Take care,

all the best
 

Good luck Shellie,

I really hope this helps you. I am so glad you are prepared and aware of what is going on!!!! Awareness is key and knowing the facts are as well.

God Bless you and you will be in my prayers!!

love and hugs,
Victoria