New TOS'er - Please advise!
 

Hi, my name is Shellie, and I was diagnosed with TOS in December of 2006. I had a car accident in 2001 and had a whiplash injury, and I've never been the same since. I did PT in 2001 and 2002 for my neck injury. In 2004 I started having numbness in my thumb, and happened to mention it to my neurologist. I did more PT for a "pinched nerve" in my neck. The numbness eventually spread to all of my fingers and up my forearm. She diagnosed me with CTS, and sent me back to PT in 2005. When my CTS had not resolved, and she was ready to send me to surgery, I did my own research and ran across an article about TOS being misdiagnosed as CTS. I mentioned it to my neurologist, who then did the 90-90 test, and immediately diagnosed me with TOS and referred me to a surgeon. The surgeon was not impressed, and sent me to PT AGAIN. This PT only made things worse (they believed in no pain, no gain). Back to the neurologist, she recommended a different PT office and for me to find a surgeon who specializes in TOS. I found Dr. Bottsford of Foothills Cardiothoracic Center in Spartanburg, SC--he's the best, so I've heard. He reviewed my medical records, did a 90/90 test and some other tests, and confirmed the TOS dx. He recommended surgery, but told me to try PT a little longer. After 2.5 months of unsuccessful PT, he has scheduled me for TOS surgery on August 21st of this year. I am happy, because I've felt like surgery was the answer for several years now, but I am terrified at the same time. I will be having some muscle cut and a partial rib resection on my right side. He's is going in under my arm. I've been told I'll be in the hospital a few days, to bring a pillow to prop my arm, that my head will be heavy, and that it will hurt. He advised me to "take as much time as I can from work" after surgery. But I don't want to use up all of my sick leave and vacation leave because I will need to go to PT post-surgery. I would love to hear from others specifics about their post-surgery experience, such as how bad the pain was, how long until you could drive, dress and bath yourself (I have long hair, it's going to be very difficult to wash with one hand! My husband will have to help me), type on the computer (I do a lot of that at work), etc. How long were you out of work and do you think I can go to the beach a month after my surgery? I've already paid! Thanks in advance to all who respond.

Shellie,
 

I'm not the one to tell you of their surgery experiences, but your story is familiar to all of us. I wanted this thread to get bumped up and not disappear so that one of our many "surgery people" can advise. Also, look at the stickies at the top of the page for further information.

Welcome to our forum and although I'm sorry you have to be here, it's a great place for information and caring people. :) phoebe

Hello and welcome,
here is the Useful Stickys link - some of our polls and articles listed in the newest posts.
http://neurotalk.psychcentral.com/showthread.php?t=84

I haven't had surgery either - but I believe it can take many months to recuperate - slow and steady is the key - not something to rush.

I don't think you would be comfortable at the beach at 1 month post op.

Have you had MRIs and xrays of the C & T spine?
to verify no c- spine vertebral cause and that there is no extra cervical rib?

have you considered seeing an expert chiropractor or body worker?
To address any postural or alignment issues?
see the stickys post #1 for chiropractic info {C1 C2 misalignments}

Shellie, I posted on another site to you but just so you you know, I spent a long time in horrible pain. Hospital traction, misdiagnosis, disc replacement that was unnecesary. After finding the right doctor I had rib-resection and scalanectomy. For six years I was COMPLETELY pain free. I am suffering a flare up due to my own stupidity. The difference in my life from before and now is unbelievable. One reason you do not see the success stories, is, once you are "better" you don't go back to the site. I still e-mail DiMarie ocassionaly, but I think you want to forget the pain. The support should always be there. I also think that there is guilt. When I feel better and others don't. But we all share the same thing. Keep writing to this forum. Everyone is great with information. They have helped me alot. Linda

i just had surgery 8 weeks ago on one side, and waiting to have it on the other side.

post surgical pain/healing is different for everyone and seems to be dependent on what kind of shape you are in going into surgery.

I was driving short distances two weeks out. I still cant drive long distances because i get back spasms- but if you don't have those driving may not bother you. i was also washing my own hair within a week and a half, though maybe not very well :)

My neurologist (who was NOT my surgeon, but treats many people who have had surgery)suggested to me before surgery that he sees wide variance in surgical recovery. He told me to expect 6 weeks to 3 months before i could go back to work for one surgery. Given that i am having two i expect to be out more like 6 months.

My surgeon told me I'd be back to work in 4 weeks...needless to say he was a bit optimistic!!! However, if i had a lesser case of TOS, the SURGICAL pain was well under control by the 4th week. I'd say by 6 weeks i was back to my pre surgery self, and now I am starting to make some progress past that.


If your beach trip is an easy vacation where you expect to be laying around a lot, it probably will be fine, but you are the only one who knows how you are travelling and how you can generally withstand that. Adequate pain medicine will make it all much much easier.

this is just my experience...like i mentioned, very different for everyone.

best of luck to you.

Johanna

PS, I has a complete first rib resection coming in at the armpit as well with Dr Ahn in Los Angeles.

Still Concerned
 

hi, it's me, the dead horse beater...

is your surgeon really planning to only remove a portion of your first rib?

i had posted this question to you i think in the general part of the forum a couple of days ago (hard to recall because i've been in a pretty bad flare).

thanks.

alison

I've had MRI's of the brain (to rule out MS, Lupus, etc.) and of the cervical spine, and x-rays of the cervical and thoracic spine. In 2005, I was diagnosed with degenerative disc disease (at 27 years old!!) with protrusions at the C6-7. No extra ribs. I've been seeing a chiropractor and massage therapist (although not experts in TOS) since the accident in2001, and we've addressed posture. My posture isn't great but it's definitely better, but my symptoms have not improved.

After surgery, I plan to go to Palmetto Pain & Rehabilitation in Spartanburg, SC for PT. The doctor there is supposed to be very experienced with TOS.

Thanks for the info, and I welcome all comments/suggestions.

Thanks for all the great info Johanna! I hope that I recover as well as you are. Like I said earlier, I will be having surgery on my right side only. I have minor symptoms in my left side, but not enough to warrant surgery. I pray I will never need the left side surgery! I've been pretty freaked out by reading so many posts about folks who are in a lot of pain, recovering slowly, and/or not working anymore. I'm only 29 and my career is well on the right track--I'm not ready to give that up yet. I would be SO bored for the next 45 years! :eek:

My surgeon told me to take as much time as I could from work, and that I could not lift my arm above a 90 degree angle for at least 4 weeks. I have about 6 weeks of leave to take from my job, but then I'll have little to no time to take for PT appts and bad days. So I really hope that I can get back to work, even if it means I am sitting in my office all day doing nothing. I am in social work, so I can do the counseling piece with no problem. It's the documentation and the driving that I worry about. I did purchase voice recognition software (Dragon Naturally Speaking, it's great!!) which will help a lot with documentation. I usually drive about 300 miles a month on the job, some local, some long distance. So again that will be the biggest issue, next to managing the pain.

My beach trip should be pretty low key. It's a 3.5 hour drive, which my husband can do, and then we'll pretty much be either on the beach or at the house we are staying at. Most of my friends that are going will be partying, but I guess I will be feeling pretty good on my pain meds so I won't need to party. I can just sit and be mellow and laugh at them while they make fools of themselves.:D

Hey there,
I cut and pasted my reply from the other forum so that people over here could see my reply.


Hi Sea Pines,

Thanks to you and others who have replied. I feel so loved already! And I apologize for taking so long to get back to you...I've been away from my computer for several days. To answer your question about my rib resection, I am about 90% sure that he is only doing a partial rib removal. But because you raised the question, I am now skeptical. My pre-op should be Aug. 14th (I'm waiting for a call to confirm the date), and I will definitely ask him about it.

Thanks again for your support, and I'll "talk" to you again soon!

surgery
 

Hi Shellie, Best of luck with your surgery. Mine was in 2000. I am suffering a set back right now but have had great success after surgery. Just do not over do anything and don't rush recovery. Recovery takes time and patience. Best of luck. Linda

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

Hi Shellie,

I'm really concerned about your work causing problems post-op, especially during the first 3-6 months post-op while scar tissue is being laid down.
An ergonomic work station is really key - if the agency can't provide everything due to budget you may have to kick in some $, but it will be money well spent if it prevents future problems. A really good computer chair with lumbar support and a high back and padded arms is one recommendation. There are many different mouse models, and keyboard options, I can't advise on those but someone will come along with their favorites I'm sure. Be sure the monitor is eye level or just below. Most importantly, take frequent breaks from the computer work, change positions, get up and stretch, get a drink or walk about the room. Set a timer if need be, no more than 15 minutes at a stretch without some type of break, after an hour do some other type of work.

Can you get a headset for phone calls? Can you ask the agency to have someone drive you to appts for the first month back? Can you go back 1/2 days the first week back? Talk with someone now and see how flexible they are willing to be. Explain that you want to be back at work and productive as soon as possible, but you don't want to push things too fast and end up undoing the good work that the surgeon has brought you.

Ask your surgeon Monday about post-op restrictions, driving, return to work, etc, as he will have his own orders. And maybe you could talk to the PT place in advance, so you could let your work know ahead of time which days of the week you will be leaving early or coming in late.

Hope you get everything answered Monday!

beth

Post op
 

Shellie, I don't know if you have a reclining chair but that helped me after surgery. I couldn't lay flat and it also made it easier to get up. Also, I slept in our family room downstairs and my husband upstairs. I kept a portable phone with an intercom with me so I could get him at anytime. As I recall, I was given a special foam cushion for my arm to rest it on after surgery. Over the years I've collected so much medical paraphanalia that I could open a medical supply store! Need crutches, give me a call. need doorway traction device, I've got that too! I should sell everything on ebay.

Best of luck. Linda.

Bumpity Bump Bump
 

hi, shellie, hi brad!

i hope you guys have internet access somehow there at foothills cardiothoracic center (if that is the name of the hospital dr. bottsford performed shellie's transaxillary rib resection in yesterday); anyhow, perhaps there is a medical library there and you are able to log on and will see this...

we are all thinking of you shellie. nothing about this easy, but know that you have tons of support here. i know you did your research and are no doubt well prepared as a result, but still - ask any question you want to, let us know through brad or anyone you may have to post on here for you, we'd love to know how you are doing or to help you through this in any way that we can, OK.

sometimes relief is immediate, some report that they don't feel anything "release" for quite some time... it varies so widely. but we get through. for me, finding this motley bunch of safe and supportive strangers made all the difference in the world!:D

i did have that one question while i was in CO having TOS surgery, though that nobody would answer for me. it was a simple one, i thought and quite rude of these people not to respond in 'my time of need' shellie:confused: ...

and the question was this: if you have sex in denver, do you still need to join the "mile-high club?"

because jet airplane bathrooms are tight and rather uncomfortable spaces to do that in. ahem, i mean i would IMAGINE that they are...

especially for a TOS'er. and denver IS "the mile-high city," right?;) :p

(you know, in hindsight, i should never have asked that on the forum. i should have asked my surgeon. i'll bet steve annest would have given me a straight answer to that question. the man is a scientist, after all!:wink:)

OK, gotta go to beddie bye now. hope your surgery went better than perfectly, shellie, and after everything you've been through that you are now WELL ON THE MEND.

holding all kinds of good thoughts for you!!!!

:hug:
alison
"Be Brave"

AlisonI would believe you are right. You should be considered in the mile high club!

ShellieHope you are doing well.

Linda

Shellie,
hope it all went fantastically for you {is that a word?? oh firefox says it is -I had it spelled wrong LOL}

Best wishes and hope to hear when you are able :D

Shellie,

am thinking about you and visualizing that you are resting comfortably and doing very well.

Talked to Shellie!
 

she sounds good. came through the transaxillary rib resection like the champ that she is. her surgeon has been by to see her twice already today i think she said, which is a good sign. perhaps she found one with a heart; alert the press!!! and the doc himself has shown her some gentle ROM stuff for the affected shoulder and arm.

i believe the R side is shellie's surgical side, for all you visualizers out there...:D

anyhow, our girl will remain in the hospital for a few days before being released into the loving care of her husband, her mom and good neighbors there in SC. i'm smelling fried chicken... anybody else?

brad is with her in the hospital as much as possible, which provided he is bathing i know she appreciates, so much. (you guys will have to explain to me someday how you are able to hang onto your men with raging TOS in the wings. personally, i could never figure that one out...:eek:)

i see that martha continues to fall down on the job. but jo55 came through in a pinch with the virtual flowers. way to go, jo!!!;)

alison
"Be Brave"

I hope you.....
 

are recovering nicely from your surgery Shellie!:hug:

Thinking of you Shellie:hug:

glad to hear it!
 

Hi sooooo glad to hear Shellie came out the other side to be a new woman!!!:grouphug:lots of gentle hugs!!!!

love Victoria
ps thanks my friend of the sea pines for making the call!!!
V