[momzpeachy]

Hi everyone...just thought I'd throw another question out here.

I've been trying to research TOS but it's hard to sit at the computer for more than 5 minutes at a time. I get so frustrated and give up. I can't even get through these threads...it's so frustrating. I'm feeling a bit better tonight but after a few posts...I'm in pain and ready to quit.

I' m a little confused as to how this all works. Once you have TOS and you get treated for it (nerve blocks and therapy) does it go away and "stay away" or is is always going to be an issue? Also, how long is therapy usually needed to treat a severe case? I found some info that has me thinking that once you have TOS ..it never really goes away...but it's manageable. Is that right? I'm just trying to look at what might be ahead. Am I going to have to learn to do things differently, will I be able to get on my bike and ride for an afternoon again? Will I be able to hold a job sitting at a computer all day. At the moment...it doesn't look promising...i can't do any of those things. I'm just wondering if thing do change for the better.

Oh man..I have to quit..pain is back! I'm just wondering if any of you can give me some insight on how this all pans out. Also, will I ever have normal muscle strength in my right arm again. I can't hold my keys without dropping them anymore. I can't even go shopping anymore because I drop everything and look rediculous trying to pick stuff up. My brain thinks...I go to do...then WHAM..can't do it...can't even hold a coffee cup. So, does this ever come back or will I have permanent damage? The Dr hasn't said much on that. I just hope it's not that severe and all this can be fixed eventually.


Good night all..gotta sign off

[johannakat]

I' m a little confused as to how this all works. Once you have TOS and you get treated for it (nerve blocks and therapy) does it go away and "stay away" or is is always going to be an issue? Also, how long is therapy usually needed to treat a severe case? I found some info that has me thinking that once you have TOS ..it never really goes away...but it's manageable. Is that right? I'm just trying to look at what might be ahead. Am I going to have to learn to do things differently, will I be able to get on my bike and ride for an afternoon again? Will I be able to hold a job sitting at a computer all day. At the moment...it doesn't look promising...i can't do any of those things. I'm just wondering if thing do change for the better.

in a word, yes. It never really goes away. You and your doctor strive to make the symptoms manageable. My doctor told me that my long term goal was to be on the computer 2hrs or less per day......... forever....Good thing my husband was there to hear it straight from the doctor's mouth.

I spent a lot of days crying as I digested that, I was only 33 for cryin' out loud. Didn't expect to be permenantly damaged quite that early.

After a year of PT, botox, and life modifications, I am giving up and going for surgery, just hoping to regain the ability to get through an occaisional day without the help of vicodin.


With a little luck, you'll be back on your bike, or at least walking. All day computer job? well, that's a recipe for disaster unless you have some really good voice software. Many people here, myself included, use Dragon NaturallySpeaking. It is very helpful if you have a decent computer to run it on. Look on ebay for good deals.

Relieveing the nerve compression either by PT, surgery, or injection will help your arm strength and clumsiness...shopping is still something I do pretty well

I know that isn't what you really wanted to hear....none of us did.

[cindyj]

Once a TOS'er always a TOS'er hun. However I have read on here that alot f people are finding ways to manage it. I am 6 weeks post op right now, but had alot of complications after suregry so I don't know how much the surgery has helped yet. I ended up with my chest full of fluid so they had to put a chest tube in to drain it.The chest tube site has actually caused me more trouble than the surgery site. Im just getting over pneumonia also and I ruptured another disc in my back and am just getting back on my feet from that lol. When it rains it pours!! Even through all of this I do believe the surgery has helped.I havent had a headache since 2 weeks post op.The strength, I dont know yet if that has been helped because I am still weak from the other complications. I know it's very hard to go through things when we feel we are too young to have such problems. I started with severe fibromyalgia as a teen, graduated to bladder cancer at 27, Tos set in around the same time as the cancer,hysterectomy at 31, hyper active muscles so they rip very easy, 2 knee surgeries, rotaor cuff repair,bowel surgery and the list goes on lol.......raised 2 boys during all this....I guess my point is you keep putting one foot in front of the other each and every day. You learn to adapt to what you can and cant do. It took me a long time to stop saying,
'I used to be able to do this or that" and instead put the past behind me and start new every day. Everyone finds there own way to cope, this site is invaluable as are the people here! You will find so much help here where people are going thru the same things you are. Try to keep your chin up hun.Take one day at a time ,don't over do it, and learn to listen to your body.For myself, I couldn't have gotten this far without God! He is my rock and the people here are angels in disguise waiting to help!!! You will be in my prayers, cindy

[redjpwranglergirl]

Originally Posted by cindyj

Once a TOS'er always a TOS'er hun. However I have read on here that alot f people are finding ways to manage it. I am 6 weeks post op right now, but had alot of complications after suregry so I don't know how much the surgery has helped yet. I ended up with my chest full of fluid so they had to put a chest tube in to drain it.The chest tube site has actually caused me more trouble than the surgery site. Im just getting over pneumonia also and I ruptured another disc in my back and am just getting back on my feet from that lol. When it rains it pours!! Even through all of this I do believe the surgery has helped.I havent had a headache since 2 weeks post op.The strength, I dont know yet if that has been helped because I am still weak from the other complications. I know it's very hard to go through things when we feel we are too young to have such problems. I started with severe fibromyalgia as a teen, graduated to bladder cancer at 27, Tos set in around the same time as the cancer,hysterectomy at 31, hyper active muscles so they rip very easy, 2 knee surgeries, rotaor cuff repair,bowel surgery and the list goes on lol.......raised 2 boys during all this....I guess my point is you keep putting one foot in front of the other each and every day. You learn to adapt to what you can and cant do. It took me a long time to stop saying,
'I used to be able to do this or that" and instead put the past behind me and start new every day. Everyone finds there own way to cope, this site is invaluable as are the people here! You will find so much help here where people are going thru the same things you are. Try to keep your chin up hun.Take one day at a time ,don't over do it, and learn to listen to your body.For myself, I couldn't have gotten this far without God! He is my rock and the people here are angels in disguise waiting to help!!! You will be in my prayers, cindy

Cindy,
What an awesome attitude from someone who has been through so much! When we were dealing with my husband's cancer and his kidney disease my mother always told me the same thing you said- "just take one day at a time and you'll make it." I too have been dealing with the TOS symptoms, neck pain, and a back injury since I was 18 yrs. old and I'm 49 now. I hope you continue to feel better every day and that soon you'll feel good as new!

[dreambeliever128]

I think it is true. Once you have it you always have it.

I also found Johanna that after 3 yrs. of almost nonstop PT that surgery was the only option. I had some very good Physical Therapist but after the 3 years of crying in pain, going to PT 2 to 3 times a week, I realized the only way I had a chance of getting better was surgery.

I had the first rib resection on the right side and had 3 inches of muscle took out from under my arm on the left side and although I feel like I am 99% better I realize I will always have to watch what I do. I have been lifting weights and I hadn't been able to do that in years.

You always know that there is a limit on what you can do. I still have trouble hangin clothes in a closet or looking at clothes on a rack that is taller then I am.

No, I don't think it goes away.

Ada

[DDayMBB]

Mom... pace yourself upon what you do. As far as the computer is concerned try and get the most erog-dynamic setup that you can, ex; having the monitor that you do not have to look up or down to, but straight ahead, seating a comfortable chair that you can sit upright and the armrests even with the keyboard and if need be, place cushions or pillows upon if they are not padded and as soon as you start feeling tensed up take a break!! the following are some things that I have found to help... moderation is the biggest help!!!!!

Mine and Goobers best to you!!

[ginnybean32]

I was diagnosed with bilateral cervical ribs in Nov 04 had surgery in Dec 04 on the left side and after many complications from a car accident in Jan 05 and another surgery for LTN injury I am doing great I am no longer taking meds at all. My right side is still a little weak but not hurting. I can clean my house do laundry and other household things with no pain but I watch myself on lifting heavy items. I dont spend much time on the computer because that aggrevated me in the past. I never thought Id be pain free again. Everyone is so different on pain thresholds, things that aggrevate you may not aggrevate me. You have to find your own rhythm in your daily activities. Surgery may be an option for you and could be the answer your looking for or it could make you worse. As I said everyone is different. Knowing your limitations though is crucial I think. Knowing when to stop doing an activity is another. Thats my take on it. I wish you well and remember sometimes it just takes time for the body to heal and recover. Surgery or not.