[arlsandstrom]

Hi everyone,
i have a question. i am trying to figure out how bad my daily life is with TOS. there is so much i can't do, but so much I can do. i have a week every month where the ribs raise in a flare up with hormones swelling my whole system putting extra pressure on my extra rib area and whole thoracic. Before I list what I can't do, I want to say that I love my life as it is now. I am singing lots, even on classical radio this week in Australia. I love the choirs that I conduct and the kids I teach. Life balance is pretty good but for the chronic pain, tiredness, grumpiness and brain fugg.

So what is all this worth if I can't;

Cuddle my husband on the lounge
Feel my left pinky
Cook, chop, stir, bake
Carry groceries
Swim
Yoga
Clean my house
Hang washing out
Lift stuff in general

When it hurts to;
Play piano ( left hand)
Do actions to songs with kids
Type, write,
Play computer games ( first world problem )
Drive
Hold folders of music
Put petrol in the car

When I suffer most days from;
Headaches
Stiff jaw
Stiff nck
Neck and back pain
Hand numbness
Shoulder pain
Elbow pain
Thoracic pain whe the whole area throbs ( luckily only occasionally)

When I am spending $100 dollars a week on a mixture of chiro, Alexander Technique and massage. not to mention specialists -instead of nice shoes. Sure it keeps me mobile, but I am willingly subjecting myself to a fair amount of pain twice a week on the table just so I can rotate my shoulder sometimes.

In my journey figuring out TOS with extra cervical ribs recently I have had a lot of help from various practitioners. i decided that i just didnt want to sit around being affraid any more. So instead of being angry and sitting around in pain, i decided to go for all the testing i could afford. Starting with a sports medicine clinic, i have finally had somone with TOS knowledge listen to me. He ordered a nerve conduction test again as the last results were inconclusive. Apparently my nerves are all fine.

the next hurdle is a vascular surgeon again. The last one said lets whip those ribs out, how about next Tuesday? I did not. That was in Dec 2012. Since then with Chiro, massage and Alexander technique, my overhead loss of pulse seems better according to my chiro and the sports Dr. So please wish me luck for October 9 for my second opinion. I love my life, I really don't want to take 6 months at best out for ribs each side to be removed. And God only knows what I will be like after surgery of that magnitude.

So how do I compare apples and oranges with a life on ibuprofen and codeine and 1out of every 3 1/2 weeks where I am on four hourly meds and a ***** to anyone who comes near?

Thoughts? Comments from this amazing community of sufferers?
How bad is it compared to what you are going through? Is there a scale for this sort of thing. It is hard to tell as it is just my life, the more I do the less I think about it all, but then I also have to take more drugs to keep going.

All my best wishes to you all as we make lemonade out of lemons.
X Anna

[kellysf]

Are you trying to figure out if you should go for surgery? With cervical ribs, your odds of a good surgical outcome are higher. However, scar tissue can undo anyone's situation, as it did mine.

I've been at this for 11 years. I tried everything before surgery and nothing worked. Surgery didn't work, either. So, obviously, my perspective is not as optimistic as it might be.

It seems to me that TOS is a lifetime experience for most of us. My surgeon said that even if surgery was successful, I shouldn't go back to my previous work (as an attorney), because the risk of re-injury was too great.

Many of the activities that you can't do now without pain, you would probably still need to limit in the future if you were to have surgery. Some people are fortunate enough to have complete recoveries but, usually, folks need to be careful with their activities. So I think you need to factor that into your assessment of your situation.

Good luck to you. It's sounds like you have a lot of good things going on in your life. I read a book that said we need to fill our lives with lots of good things so chronic pain is 1 of 100 things in our life, rather than 1 in 2 or 3, or the only thing. That always made a lot of sense to me.

Take care,
Kelly

[Jomar]

I think everyone has to figure that out for themselves, how long will they continue as is or go for surgery..


Extra cervie ribs do have better outcomes- with a very good surgeon in most cases.

Scar tissue can be a factor, pre op and post op- you might be developing it as it is right .. those ribs rubbing around crowding things..
a good question for the doc...

You're lucky your voice has not suffered, mine cracks all the time since my RSI/TOS started (03) and I love to sing along with the radio..

How long have you been having issues due to this?

[20YrsTOS]

Originally Posted by arlsandstrom

Hi everyone,
i have a question. i am trying to figure out how bad my daily life is with TOS. there is so much i can't do, but so much I can do. i have a week every month where the ribs raise in a flare up with hormones swelling my whole system putting extra pressure on my extra rib area and whole thoracic. Before I list what I can't do, I want to say that I love my life as it is now. I am singing lots, even on classical radio this week in Australia. I love the choirs that I conduct and the kids I teach. Life balance is pretty good but for the chronic pain, tiredness, grumpiness and brain fugg.

So what is all this worth if I can't;

Cuddle my husband on the lounge
Feel my left pinky
Cook, chop, stir, bake
Carry groceries
Swim
Yoga
Clean my house
Hang washing out
Lift stuff in general

When it hurts to;
Play piano ( left hand)
Do actions to songs with kids
Type, write,
Play computer games ( first world problem )
Drive
Hold folders of music
Put petrol in the car

When I suffer most days from;
Headaches
Stiff jaw
Stiff nck
Neck and back pain
Hand numbness
Shoulder pain
Elbow pain
Thoracic pain whe the whole area throbs ( luckily only occasionally)

When I am spending $100 dollars a week on a mixture of chiro, Alexander Technique and massage. not to mention specialists -instead of nice shoes. Sure it keeps me mobile, but I am willingly subjecting myself to a fair amount of pain twice a week on the table just so I can rotate my shoulder sometimes.

In my journey figuring out TOS with extra cervical ribs recently I have had a lot of help from various practitioners. i decided that i just didnt want to sit around being affraid any more. So instead of being angry and sitting around in pain, i decided to go for all the testing i could afford. Starting with a sports medicine clinic, i have finally had somone with TOS knowledge listen to me. He ordered a nerve conduction test again as the last results were inconclusive. Apparently my nerves are all fine.

the next hurdle is a vascular surgeon again. The last one said lets whip those ribs out, how about next Tuesday? I did not. That was in Dec 2012. Since then with Chiro, massage and Alexander technique, my overhead loss of pulse seems better according to my chiro and the sports Dr. So please wish me luck for October 9 for my second opinion. I love my life, I really don't want to take 6 months at best out for ribs each side to be removed. And God only knows what I will be like after surgery of that magnitude.

So how do I compare apples and oranges with a life on ibuprofen and codeine and 1out of every 3 1/2 weeks where I am on four hourly meds and a ***** to anyone who comes near?

Thoughts? Comments from this amazing community of sufferers?
How bad is it compared to what you are going through? Is there a scale for this sort of thing. It is hard to tell as it is just my life, the more I do the less I think about it all, but then I also have to take more drugs to keep going.

All my best wishes to you all as we make lemonade out of lemons.
X Anna

Anna, thanks for sharing your story. As a 20 year suffer of TOS, I know what u r going through. First, I'm glad u were able to continue to sing and teach those kids. I say this all the time, we should not give this TOS all the power. If we do, we r not going to fulfill our purpose GOD has call us to do.
Now, I know about going to chiropractors, neurologist, vascular doctors,etc. I've been to so many doctors and had so many test, I think I need to become a doctor. Lol But after all of that, I'm still having problems. The pain is on a scale of 10 plus. I have numbness, swelling, elbow, neck, and shoulder pain. So I know about everything u r going through. I have to agree with Kelly, as u can see, I'm 20yrs or so into this, and nothing has helped. I've had two previous surgeries, and the first one was the removal of my first rib. It lasted about 3 to 6 months, and all my problems started back. U can read my story, and read about everything I've been through. But scar tissue will form, and they claim this was one of the reason for the second surgery. Now they want to do a third one.
Yes, u are going to feel good after seeing a chiropractors or others sometime, but as Kelly stated, once u start doing the same things, the problems are coming back. I was told mines has been going on so long, that I could lose one of my arms. Mines started in my right arm, and now it's affecting my left. I'm thinking and praying about leaving my job because of this, because the pain, numbness, weakness, etc. has gotten worse. I'm on the computer all day doing accounting work, so this is why I'm praying about this decision.
Despite it all, I'm still laughing and enjoying this wonderful thing called life, that GOD has blessed us all with. I pray u all would do the same. This hasn't been easy for my wife, but we pray and trust in LORD.

Don't allow TOS to get in your way of singing and teaching those kids. We are more than a conquer. I'm praying for everyone on here. GOD bless u and your family.

Rod

[astern]

Hi Anna, it seems like you have found a good balance between pain and your activities. If pain meds every few weeks is your 'new normal', you should stick with that. Sounds like a good life to me!

True, you could be building scar tissue right now. I believe your body will tell you when it's time to consider the rib resection surgeries. When every day is miserable and you feel as though you just can't function without help, it may be time to find that top notch surgeon and let them make the recommendation.

I had the resection surgeries 9 years ago and am just now getting the scar tissue and adhesions, but this could be aggravated by the 2 serious car wrecks I have been in since then. (yes, I did lots of PT to stretch and break up scar tissue post-surgery for about 7 years) Remember, every body is different and you may or may not have scar tissue problems.

I think the big question you should ask yourself is, "what will I no longer be able to do without the cervie+1st ribs?". For me, it's lifting things, using my arms away from my body, any percussive movements (dancing, etc.).

Good luck as you weigh the options before you.

Anne

[shop2apples]

Originally Posted by arlsandstrom

Hi everyone,
i have a question. i am trying to figure out how bad my daily life is with TOS. there is so much i can't do, but so much I can do. i have a week every month where the ribs raise in a flare up with hormones swelling my whole system putting extra pressure on my extra rib area and whole thoracic. Before I list what I can't do, I want to say that I love my life as it is now. I am singing lots, even on classical radio this week in Australia. I love the choirs that I conduct and the kids I teach. Life balance is pretty good but for the chronic pain, tiredness, grumpiness and brain fugg.

So what is all this worth if I can't;

Cuddle my husband on the lounge
Feel my left pinky
Cook, chop, stir, bake
Carry groceries
Swim
Yoga
Clean my house
Hang washing out
Lift stuff in general

When it hurts to;
Play piano ( left hand)
Do actions to songs with kids
Type, write,
Play computer games ( first world problem )
Drive
Hold folders of music
Put petrol in the car

When I suffer most days from;
Headaches
Stiff jaw
Stiff nck
Neck and back pain
Hand numbness
Shoulder pain
Elbow pain
Thoracic pain whe the whole area throbs ( luckily only occasionally)

When I am spending $100 dollars a week on a mixture of chiro, Alexander Technique and massage. not to mention specialists -instead of nice shoes. Sure it keeps me mobile, but I am willingly subjecting myself to a fair amount of pain twice a week on the table just so I can rotate my shoulder sometimes.

In my journey figuring out TOS with extra cervical ribs recently I have had a lot of help from various practitioners. i decided that i just didnt want to sit around being affraid any more. So instead of being angry and sitting around in pain, i decided to go for all the testing i could afford. Starting with a sports medicine clinic, i have finally had somone with TOS knowledge listen to me. He ordered a nerve conduction test again as the last results were inconclusive. Apparently my nerves are all fine.

the next hurdle is a vascular surgeon again. The last one said lets whip those ribs out, how about next Tuesday? I did not. That was in Dec 2012. Since then with Chiro, massage and Alexander technique, my overhead loss of pulse seems better according to my chiro and the sports Dr. So please wish me luck for October 9 for my second opinion. I love my life, I really don't want to take 6 months at best out for ribs each side to be removed. And God only knows what I will be like after surgery of that magnitude.

So how do I compare apples and oranges with a life on ibuprofen and codeine and 1out of every 3 1/2 weeks where I am on four hourly meds and a ***** to anyone who comes near?

Thoughts? Comments from this amazing community of sufferers?
How bad is it compared to what you are going through? Is there a scale for this sort of thing. It is hard to tell as it is just my life, the more I do the less I think about it all, but then I also have to take more drugs to keep going.

All my best wishes to you all as we make lemonade out of lemons.
X Anna

Good Luck to you Anna!
As long as you have good surgeon with experience things will get better here's to lots of prayers headed your way.

[arlsandstrom]

Thanks Rod. I hope you find daily relief and happiness. It is so hard sometimes to step back from the pain. But you sound in a lot worse shape than me. I am so lucky that my career for the most part doesn't involve computer work. When I do have to about once a term I really feel the pain for a week after. So I can only imagine how bad it must be for you day to day.

So, the app is today, and I will just see what the surgeon says and see how well he can answer all my questions.

Good luck with your journey!

[arlsandstrom]

Hi,

I first notice these probs about 15 yrs ago when doing my school leaving exams with all that writing. We thought it was chronic fatigue. Then I found the extra ribs at 24, but didn't know that it would cause problems. I had been diagnosed with mild carpal tunnel and RSI. Luckily with lengthy bouts of unemployment as a singer and not much computer work doing opera and music teaching I have managed to keep ok. Major modifications to life stuff, which seems to be th hardest area to control activities like cooking and cleaning. But postural methods do help with e erythema are helping every day.
Thanks so much to your support and help o re he last couple of yrs. I have found extra strength and valuable knowledge through you and this site.

Try to release your neck and yawn into your voice to retract all the muscles in your throat. It might help you to sing along with the radio, also try to stretch your sternum up on the breath.

Thanks,
Anna

[arlsandstrom]

Amazing thought- thanks or the 1/100 thought. Very wise.

Will post more after the appointment .

[arlsandstrom]

Originally Posted by arlsandstrom

Amazing thought- thanks or the 1/100 thought. Very wise.

Will post more after the appointment .

****** this was me at for JoMar, I am still getting to grips with how the replies will appear!

Originally Posted by arlsandstrom

Hi,

I first notice these probs about 15 yrs ago when doing my school leaving exams with all that writing. We thought it was chronic fatigue. Then I found the extra ribs at 24, but didn't know that it would cause problems. I had been diagnosed with mild carpal tunnel and RSI. Luckily with lengthy bouts of unemployment as a singer and not much computer work doing opera and music teaching I have managed to keep ok. Major modifications to life stuff, which seems to be th hardest area to control activities like cooking and cleaning. But postural methods do help with e erythema are helping every day.
Thanks so much to your support and help o re he last couple of yrs. I have found extra strength and valuable knowledge through you and this site.

Try to release your neck and yawn into your voice to retract all the muscles in your throat. It might help you to sing along with the radio, also try to stretch your sternum up on the breath.

Thanks,
Anna