my surgery story
 

Hi there fellow tos'ers i thought i would try and document everything i go through so this may help other's who are awaiting or thinking about having surgery. So i well start with my pre-op visit to day and when i get home and i can i well update on how everything is going and all about the surgery. Ok Aug 27 2007 i arrived at QEll Victoria building for 8 am appointment. I signed in at the main desk then i was handed papers and three patient/family guide's. Same day surgery admission,Managing pain after surgery and Infection prevention. I then had a cardiogram which took a few minutes she put wires on me then turned the computer on it took like a min then that was it. I then saw a nurse who took my weight and hight,blood pressure and temp then asked questions about my health and the meds i am taking, allergies those type of questions. From there i went and had blood work done then i was off to see the anaesthetist who talked about the pain meds that i am taking and she told me to take them as i would every morning she also said that she would be ordering other meds that i well have to take before surgery to help prevent pain after surgery. Then last but not lest i saw the physiotherapist that i well see the day after surgery she went over where the incision well be. I thought that he went through the armpit but it is actually under the armpit and it well take the doctor between 1&2 hours to complete this and he does not stich the incision it is held to gethere with steri-strips which you wear for 10-14 days. She also went over the fact that you stay in the recovery room (post anaesthetic) for 4 to 6 hours then you are moved. She also said that i would have iv for up to 2 days. I well also be wearing a face mask for oxygen for the first 24 hours and well be given a special mask with medication called Ventolin to help open airways. And of course i well have to do deep breathing and coughing and sit up and go for a walk to help prevent blood clots. she well also show how to do pendular and gentle exercises for the shoulder joint. You are not allowed to use either hand to lift,push, or pull anything heavier then 5lbs for 3-4 weeks as well as no driving. This took me just a little over 2hr to finish seeing every one so i have to be back tuesday aug 28 at 11:30 am to check in. The surgery well be at 2:30 pm if all goes good. So i hope to feel good enough on the weekend to at lest say hi and let you's know i am home and all is well. Till then keep :)

Good Luck Mucker
 

Thanks for all the info from today Mucker. I will be paying close attention to everything you report. I really hope you make out fine and pain is not too bad. DId you get an idea when he will do the other side? Is it another 18 month wait? How long are you staying in the hospital? Why no stitches? Why no driving??

Sorry for all the questions....I just know what you go through will be similar to what I will go through.

Rach

Thanks for the post and good luck. I remember my surgery, there is alot of information. Do you have someone with you? I had someone all the time to push the button on the morphine pump. At one point it ran out and my sister told a nurse and they ignored her. She is a force not to be reckoned with. They actually called security to make her leave! Actually, for doing their job! When they found out I had Dr. Togut who told us to have someone there, they backed off very quickly. Just like in Terms of Endearment, you need to have someone at your back. Make sure someone is standing up for you when you can't. Good luck. It will go well but let us know. Linda

yes- nothing worse than needing something after surgery when you are helpless in bed adn not being able to get it. I have had that happen both times now, but that's a story for another day :)

my story:Home
 

Hi well i am home i got home Friday feels good to be in my own bed. I went in Tuesday at 11:30 and had my surgery at 3pm i had a good looking porter who walked me up to the waiting room where he put me on the gurney and wrapped me in a warm blanket and chatted with me till Rick the anesthetize came in and asked me more questions then took me off to the surgery room where i met the two nurses he was trying to be funny but i just didn't get his jokes. Any ways he put in my iv did a really good job hardly felt it. The next thing i new i was in the room where i would be staying for the next few days and there where some nurses and rick they were putting me in my bed and he asked how the pain was and told me everything was fine and back to sleep i went. It didn't seem long after that and i was a wake again and asking the nurses to call my boyfriend and as she was taking his name and number down i saw him standing by the door. I was very happy to see him there we chatted for a bit until i felt that i had to go to the bathroom so he got me the nurse and i got up and sat on the toilet it felt like for ever but it just wouldn't come. So back to bed visited with the man for a bit longer and fell a sleep i was up two more times through the night before i finely went pee and at that point i was being told through the door if i did not secede they would have to put a catheter in i guess just being told this was scary enough ha ha. The next day around 7:30 am the doctors where in to see me Doctor Bethune said that they removed the first rib and that the muscles they removed were three times larger then that of a normal persons he also said that my lung had collapsed so they had did a x-ray after the surgery and i would be getting another one done that morning. It would depend on how that was as to what they would have to do he figured that they would not have to do anything that it would heel on its own and if they did have to they would put a tube in. So lucky for me i did not need a tube but it still hurts with the breathing each day it doses get better. I was up and walking around Wednesday when i wasn't busy sleeping i was still in a lot of pain so i was getting hydromorphon every 3 hours as well as hydromorphon contin 9mg in morning and 12 mg at night still am taking the same. Thursday morning when they came to see me they asked if i thought i would be ready to go home i just gave them a big fat no. I did not tell them why but they didn't seem to care they just said fine see how you feel tomoral. But as for me i wasn't leaving until i wasn't having trouble getting in and out of bed by my self with out having to move the bed up or down. Any way i am still feeling pain and not sure if i am fixed which Bethune said is normal do to the swelling that there would be pressure still. But one new thing that i do feel is the back of my arm from the shoulder to the elbow has a strange feeling i don't even know how to describe it other then i know i am touching it but don't real feel it and the other area that hurts a lot is the fatty part under your tomb. I have some black and blue marks on my rib gage near the incision. My incision is around three to four inches long oh ya when i move a certain way it feels like it is popping,rubbing in that area but the doc says that it is air bubbles i don't think it is but i don't know ha ha. Any way i am ready for another nap that is all i seem to do is sleep for 1 to 3 hours then wake up for 3 to 5 i just took more pills for the pain. To be honest the pain is some what liked it felt when i had carpel tunnel realise done except it is lasting a little longer. well bye for now i well write agin when i feel up to it i hope the other girls are doing good.

mucker- glad to hear from you...stay rested and happy :)

I just got my drain out yesterday, and am starting to fell better....still lots of surgery pain, but much better than my last surgery overall.

take it easy, hope ot hear from you again soon :)

Hello Mucker so glad surgery is over and you are home again in your own bed. I hope with each day the pain will be less. Take it easy my friend.:wink:

Hi, Mucker
 

thanks so much for posting.

you have been through a lot; surgery is a huge trauma to the body. please, please take it easy and try not to type so much!:D but of course, we are dying to hear how it went with you and the others, too.

between the swelling and all the pain meds i don't know how you guys can tell which end is up (i couldn't, anyway) for the first several days after.

but i know it must feel great to be home and i am so glad you have someone there with you, taking care of you. icepacks are your new best friend, right? better than any pain med i ever took, i know that much!:cool:

not surprised to hear how enlarged your scalenes were with the type of work that you did. maybe you'll make the medical texbooks now... that would be a trip, mucker!:rolleyes:

probably they're still talkin' about ya at that hospital...

hahaha

alison
"Be Brave"

OK not happy i just spent the last hour typing and i lost all of it i can't believe it. Oh well i well try again the only resion it takes me so long is because i take my time so i wont get to sore. But i took my round of meds and pain is under control for now. OK i wonted to know Johannakat if you would be interested in doing a thread with me and i would also like to ask ihtos when she is feeling up to typing. I was hoping to do like a diary form were we tell every one about our surgery story. Like what was done what our stay was like more or less what i have already started to do this way people would have three different people and surgeries to compare because everyone is different but we do suffer from tos. I was thinking that this could be of help for others i know that it would have been much more help for me being my first time and all. Like for example i did not have a drain and i know you said that you just had yours removed so this is going to sound ignorant on my part but what was it for. Another example would be i explained what they did to me but not sure what they did to you like did they take your first rib and muscle as well? Let me know what you think i am going to keep up with my self i don't think it well be on a daily bases but i am going to try and write something once to twice a week could be more but it well depend on how i feel. I well keep doing this well i go through the healing processes and hope fully it well help others out a bit. So that is out of the way i well tell ya about my day i finely fell asleep around 4am this morning and got up at 7:30 am my side was in a great deal of pain and my lung was sore. I took my med's and exercised my arms and did my breathing exercises shortly afterwards i was ready for another nap my lung is slowly getting better it seems each time i do my breathing with the incentive spirometer i can hold it longer and i can breath deeper. My inscion is starting to itch a little there is no redness so i am thinking its just part of the healing. The rest of my pain is still in the arm like before the surgery and of coarse in the inscion and chest front and back. Well must sign off and go have a shower oh one other thing i do not use ice-packs they are so not my friend i wish i could i am sure that they would help but they also say in the booklets they gave me you are not to use ice or heat because you could hurt yourself something to do with the anatisea and not having full feeling for a few days after surgery. Any ways till later bye

Thanks so much Mucker for your informative posts! The info is helpful but please feel free to type when you feel better and to use shorthand. I wish you a complete healing and a very speedy and as full as possible recovery.

Monday well i surprise my self once again i did not think that i would feel up to posting this much but can't do much else. To be honest it doesn't hurt to type i mainly use my left hand so it takes longer that's all. Any way i never got to sleep till 2:30 am and it did not last long i shut the TV off and instead of putting the clicker on the night stand i left it on the bed so the next thing i know bang and i shot up to a setting position next thing not very nice stuff came out of my mouth. The pain was out of this world because i had used my right side to sit up so needless to say i was up for two more hours trying to get the pain settled down. I wont be doing that again ha ha. The pain to day is a little different i don't know if it was me shooting up in bed or this is just part of it. The pain to day there is a small area that burns when i move a certain way it is two fingers up from the incision and the area is about as big as the tip of my finger to the first joint. I also find that my right hand has been colder then the left and is white in color my thumb and under the thumb is still aching. Light aching in forearm as well as elbow the upper part of the outside arm still has that funny feeling and it is now in the shoulder blade as well as slight burning. My lung is a little worse to day then yesterday still doing my breathing and arm exercises. Oh ya my man ended up doing the house work his friend wasn't feeling well so i give him an A for trying. But he made up for every thing he is making me a nice Birthday supper and he gave me a dozen roses and best of all i am now the proud owner of a puppy he looks just like the taco bell dog i am going to call him Chico but i wont get him till next week. So i hope by then i wont be in to much pain i can't wait he is so sweet and love-able. OK i know stop aim starting to sound like i just had a baby ha ha. OK that's it for to day unless something different happens with my arms.:cool:

Hi mucker,

So GOOD to hear surgery went well for you - and isn't it a relief to have it behind you?! Patience is the word for now; it may take 3-6 weeks after surgery to get over the effects of the surgery on your body and feel returned to full function. Recovery of the nerves can take 12 months, although I did see some muscle return more than 18 months after my pec minor release, so that window can be longer. Meaning, those who have hand atrophy, don't despair if you don't see muscle growth within the first year - if it takes a year or a little more for the nerves to regenerate, muscle can't reappear until AFTER that regeneration is complete.

Try to take things easy with your left arm as much as possible mucker. TSers often use their good arm so much they then are dx'd with "overuse" syndrome in the previous asympyomatic side. I think if you have TOS on one side you are at risk for developing it bilaterally, and the "overuse" term is a garbage-basket dx, personally. My "overuse" syndrome felt just like mild TOS, and has progressed to severe TOS, and early EMG said I had carpal tunnel - yeah, right, with a dx of TOS on the right?

Re: the chest tube - When resecting a first rib, surgeons are VERY close to the lung with a VERY sharp instrument. If the pleura (sac enclosing the lung) is nicked, some surgeons deflate the lung to prevent further injury and/or to give themselves more room to work. Then when the resection is done, they close the pleura, but leave a drain in place to remove any fluids that may have made it into the lung. An x-ray is done often, sometimes still in the OR, in post-op, and a couple more times post-op to ensure the lung re-inflates and stays inflated, and there is no fluid build-up. The drain comes out a few days post-op if all is fine. Sounds like your surgeon is one of those who takes a different approach, hoping to avoid messing with the lung, but did nick the pleura (which is very hard NOT to do), and the lung collapsed. He opted to forgo the drain and watch and see how the lung reinflated, and whether or not a drain was needed, rather than doing anything he considered invasive. X-rays and breathing apparatus are the same regardless. The downside is if fluid DOES build up it means going back in to the OR and being opened up again - no fun. :( But both approaches are legitimate.

The strange feelings on the back of your arm are normal post-op and may last awhile - the nerves to that area were pulled and pushed aside, albeit gently, quite a bit, while they got that bit of rib out through the incision, mucker, and it will take quite a while for them to stop being , well, PO'd about it! In fact, numb is good - in a few weeks they will have more feeling than they've been accustomed to all the time the compression has been occurring - once they wake up to the fact that they are now free, the PARTYING begins - and that gets very uncomfortable! The bright side of that is that it DOES calm down, and it means that YES, the nerves are alive!!!

mucker, I found ice very welcome after surgery - although since I have RSD I most likely should have kept far away from it - but NOT at the incision site. I placed it in a zip-loc bag, wrapped in a towel for skin safety, and placed it over the collarbone/brachial plexus area - the site where the surgery actually took place. That was where my greatest pain was, and the ice helped greatly there. I couldn't stand much of anything directly on the incision at first, but a warm rice pack felt good a couple of weeks out.

Vitaman E capsules - break them open and rub the oil into the incision - really helps it fade - but not till Dr says it's ok!! I also have a tube of ointment called NuSkin that works like magic to fade scars and scratches.

Please make sure that puppy gets trained very well to leash and knows that both dear man and YOU are alpha dogs, NOT pup. My spouse could walk our last dog, but every time I did she pulled on the leash the entire time - 35 lbs of lab retriever/border collie mix! :eek: Oh, my aching arms!! Can you say obedience school drop-out? Not one SHRED of interest in conforming to the rules, that one - possibly why we butted heads?

Anyway, please take care, treat yourself gently and remember these icky, achy days will pass.

All my best,
beth :hug:

Hi Beth thanks for telling me about the chest tube and the other info. I very much agree about the vitamin E i used the oil on my carpel tunnel scares and it did make a big difference i also had a ovary removed last Feb and again used the oil on my lower tummy i only had three little scares but you can hardly see them. And ice i can not handle any ice or cold on my arms or hands the pain is unreal this has been going ever since this whole mess started Sep 2004. I had the carpel tunnel release done on right Jan 06 and march 06 on the left. I still have carpel tunnel on my right and it is worse then before the release any ways thank you once again for the info at lest now i know more about what to expect for time line on the recovery and what to expect for the healing. :):hug:

Mucker I know this is after the fact but when I had my second child I had a catheter in the hospital. When I left I could not pee for hours. They were going to re-admit me. The doctor told me to try while in the shower. Sounds gross but she said your own urine is sterile. After about 8 hours without going, I just told everyone, see you, I'm going to take a shower. It worked! Better then a catheter in the hospital! Just had to wash the shower after! No big deal!

Sending you :hug::hug:for a great recovery. And thanks for posting your experiences!

Hi Mucker
 

Just want to say thanks for taking the time to detail your surgery. It's really valuable info for those of us who have not yet had surgery but may have to in the future.

I wish you a speedy and complete recovery!

Great News Mucker!!! So glad the wait is over for you!! :hug:

Hi Mucker
 

I hope things continue to heal well for you!;)

I understand your frustration of doing something that sets you back a little...you sort of forget if you are feeling sleepy or better with your meds....then do something and OOPS all hell happens in your body!!!

so slowly and take care!! Thanks for the updates!!

love n hugs:hug:

Victoria

Hay well not to much to day just a little blue and the pain is not bad right now. I guess the feeling of blue is because i am feeling a little jealous it sounds like jokat and ihtos are doing a little better well they seem to have some success from there surgeries and i have not i know it does not mean that in time i wont have these problems any more but i wont some sign that this was not for nothing. I am sorry i truly am happy that they are better but i can't help being jealous. I still have the aching and the tremors and my hand is still changing color i don't have the burning that i did before but my neck is starting to get really stiff again not sure if it is just because of the way i sleep now. Oh enough of my **** so on a lighter note i would like to say Linjane i am glade that you brought up going in the shower i do that my self back in Feb i had had surgery and my doctor then told me the same thing as well when i started to have trouble because of being on hydromorphen my family doc said to give it a try it doesn't always work for me so i just sit run the water and wait. But i am sure that little tip might help others who are having the problem or ever start to have the problem. Shelly and Stardust thank you i really hope that my ramblings do or well help others. That's what it is all about is to be here for each other and if there comes a time when any of yous think i have run my course on my story please tell me i don't wont to wast your time or mine once again thank yous i hope you all have a great day

Mucker, please don't be so hard on yourself.:( The surgery I had was minor compared to your's. I was ready however for what Dr Sanders was advising me to do. I just wanted a chance at some relief. I think the reason alot of us fear these surgeries is because we KNOW the recovery is going to be difficult. Just have faith, and take it slow. Thats the main thing everyone who has had surgery warns us about. Sending you a big :hug: Ihtos

mucker- did i mention my constant headaches...and that I can't stand to be w/o ice pack? BTW if you are having headaches I totally recommend a cranoisacral massage (i got one friday).

also, i have had a very deep aching feeling all through my forearm and elbow that I suspect is related to signals travelling on nerves where they haven't for a long time. It has been getting a little worse each day rather than better, so I suspect I am in for some real fun, there. I used my tens on it for a while the last few days, it helped a little, but I don't see the end of pain meds in the next few days or anything. If it makes you feel any better I am taking 3-4 10mg opanas a day with a 5mg oxycodone every 3 ish hours on top to keep my good attitude :eek:. I have also added 2 advil on top of that here and there. If I forget one or am running late to the next dose, i am well aware of it.

anyhow, keep your chin up, as it does take a while for the post op swelling to go down enough to know if you have had some real improvement. I never really did see significant improvement from my May 21 surgery till two weeks ago when I got the cortisone injection on my swollen nerve....definitely it all takes time. Possibly my overall self is feeling better because of this, too. Also, I am comparing my present pain to the pain after that surgery, and that surgery was BAD.

I might call your surgeons office and ask about the color changing and burning...but I did get a lot of the tingling hands and nervy symptoms that I had never had previously in the few weeks after my first surgery. They eventually calmed down and went away when the swelling did...at about 4-6 weeks. I also get funky hand symtoms just from the bruising where the IV was....Are you taking and advil or other anti-inflammatory? You aren't supposed to take them long term, but my surgeon rec'd them to me for two weeks after my first surgery. Different assisting doc this time didn't tell me to take any...so I guess it is debateable. I found them to be helpful, so maybe you want to ask about it if you aren't already on them.

Last surgery I was all for the heating pad...it always made me feel comforted and like it was helping increase the circulation. This time, my incision just burns, and I have the deep aching, and the weather is really hot here, so somehow ice just seems like the best thing for it. I also have a terrible pain right at my breastbone and in the back where the rib used to be connected. I like to keep ice paks on that as well- not really really cold ones...just cool paks. it is definitely a personal preference tho.

well, i am certainly rambling. I just hope you don't think I am not hurting just cause i sound happy. I mean, I am feeling about how I expected to feel, which is 'in a lot of pain'. But since it was what I expected, I am OK with it and happy....does that make sense?

I am very sure that you will come through this very well. :) Definitely just give it some time.

:hug::hug:

Johanna

Try Not to Compare Your Insides with Anyone Else's Outsides...
 

mucker, honey, you are doing just fine. if you reread ihtos' post i think you will find that what she is telling us is that it turns out she did not have TOS to begin with!!!

so the surgery doc sanders performed on her was not even, technically, a TOS surgery, but an outpatient procedure for what she DOES have, which is a condition called 'pec minor syndrome'.

OK, we need to make her change her poster name to IHPMS!!!:D the girl is an imposter, folks!

and i think if you ask johannakat how her FIRST first rib resection went... well, she might tell you she was feeling waaaay worse than you are feeling right about now, mucker... she was due for a break on that second one being a little bit easier to bounce back from, believe you me.

but still, i could swear she posted somewhere that she overdid it over the long weekend and is paying for it dearly, if it makes ya feel any better!!! hahaha

my point is that we are all so different. different ages, different types of TOS, different occupations, different surgeons, all sorts of factors go into it - when was it dx'd and by whom, did you get PT, was it the right kind and for how long, what is your emotional/mental/spiritual state, do you have a good support system, pain management program, etc. and on and on and on...

really does no good to compare, one to the other. i know it's hard not to, though! you are making such a great contribution to this forum and you have a wonderful fighting spirit, barb. i know you will do very well with your recovery from this very difficult surgery. and your surgeon is tops, you chose well.

this is not an easy thing to go through. you are strong. you won't necessarily know for quite a while what your true results are either (damnit! i hate to wait, too!:() - but the real comparison, the one that means something... will be between how you were BEFORE vs. how you are in like maybe a year AFTER THIS IS ALL OVER.

it's natural for you to be feeling like you've been hit by a mack truck right now. that's a quote from dr. ahn, i think (johanna's cutter!).

you just hang in there and do what you're doing. you are amazing.

alison
"Be Brave"

yes..it was the d@mn groceries for family of 5 that did it...

and I won't mention the instinctive grabbing the 2yo so she didn't get clobbered by very big wave at beach yesterday...ooooooooops.

posted then lost it all...boo hoo
 

Hi Mucker,

I hope that you can reconcile your issues....I was literally feeling run over by a truck for over a month. I felt as if I would not get better. My pain was a major issue but acute as opposed to chronic. I can't express enough that you can't compare your healing period to anybody else's.

We all heal at different rates. I feel that you need to take it easy on yourself for one and on your healing for two. You are you and only you can gauge your healing by your own experience and your own pace.

DON'T OVER DO IT whatever you do....little incidents like sitting up in the chair are going to happen...so no worries about that but don't do more than you can do....you are your own best judgment...so go easy on you and your efforts!

take care
love and hugs,
Victoria:hug:

Yep thats what the good doctor said.....HE DOES NOT BELIEVE IT IS TOS. I was in total shock. I didn't know what to think. But I had 5 others diagnose me with TOS? :confused: Vascular/ neuro .
Dr Sander's remarks to me were "let's keep our fingers crossed" . That is exactly what I am doing. Several of his patients that had pec minor release ended up going back for the scalenectomy's and or rib resections. Do I really have to change my nickname now to IHPMS? instead of IHTOS ( I hate TOS ) :wink: IHPMS sounds like premenstrual syndrome...but i do hate that too !! :p

OKOKOK I Was Only Kidding... But Here's the Thing!!
 

hahaha guess you don't do anything just yet, right? i would hope like crazy that richard is right and that all those other guys had it dead wrong, though... wouldn't that be GREAT?!?!?!?

and even if it did turn out, after you've healed up nicely from the pec minor tenotomies that the good doc sanders so expertly performed there in denver for ya, that some residual TOS sx returned...

who is to say those could not be dealt with, with the right kind of bodywork/postural and PT/OT program, together with all the things you will have learned along the way to do for yourself at home, ihtos? because now that your pec minor muscles have been freed up, if dr. sanders is CORRECT and they were part of your main problem to begin with well, it all flows from there.

so even if you do have TOS, it could be very mild and you may not ever need surgery for it if you follow a good bodywork/PT/at home program from here on out... make sense?:confused:

but i'd say the fact that you got such an immediate relief reaction from his procedure is a VERY good indicator that he was right on the money, myself! i love the idea that you DON'T have TOS (but i don't want you to leave us, don't get the wrong idea, OK?:() and, obviously, the key thing to do now is not to rely on any surgery to "fix" things, but to follow that procedure up assiduously with the best damned program you can find to get and keep your now healing body in wonderful shape.

i know dr. richard sanders likes feldenkrais for his patients, and with their national network, finding one close to you should be fairly easy - still, be sure to interview a few to find a good "match" if that is the way you choose to go (i don't want to assume anything here, ihtos).

my current PT is married to a feldenkrais practitioner. so even through i'm on medicare, which i don't think will pay for bodywork of any kind, i suspect she is sneaking some stuff in there for me - just because it's the right thing to do for my TOS. and i so appreciate that, too, because when i get flared up (like i am right now-:eek:) sometimes the only things i can do come from programs like these: diaphragmatic breathing exercises, studied slow neck/shoulder/arm movements, etc. and i cannot tolerate much else.

but no, i sure wish i could say you definitely don't have TOS based on what doc sanders said to ya... probably too early to tell though. here's hoping you don't - i would not wish this nonsense on my worst enemy, ihtos!

time will tell. if you recover fully from the pec minor tenotomies - and find that you have little to no sx on either side - then i believe that will be pretty strong evidence that sanders ID'd the correct syndrome, though...

and it began with a 'P' - not a 'T' - you lucky duck, you!:wink:

alison
"Be Brave"

I agree
 

Hi Ihtos,
I agree with alison....as usual....lol....however, it is important to say you are in less pain so that says a lot!! If this is the beginning as Alison says then it is important to know that you are feeling better.

In my quest for doctors (of whom I saw a great many--at least 14) I had a vascular surgeon tell me that it was my Pec muscles that were causing my pain and nobody would do anything about it so go and live in pain!!

So at least u were believed about your pain and something was able to be done about it......so SLOW down and keep your name I LOVE it!!

Sometimes labels are misleading!! Pain says a lot and if you as Alison says are feeeling the relief ......go with it and see what happens then one step at a time!!!!
Live in the now and appreciate what is going on!!!!

lots of blessings and hugs,
Victoria

Sorry i never got around to posting last night but i went to have my shower and when i went to pick up my shampoo i don't know what happened but i ended up in so much pain i couldn't believe it and i cried for quit some time. I ran out of pain pills so i had to wait till to day when i seen the doc for more. We where chatting about the pain i am having and i asked about the nerves if they would eventually heal so that they would not bother me any more. She said that i do have permanent damage but i well have to wait to see just how bad it well be. She said that if i could have gotten the surgery right away well then i would have had a very slim chance of permanent nerve damage. Any way now that i have my pills back i am feeling a lot better. Sorry about the last post i was just feeling sorry for my self. But thank you guys for helping me feel better and i shouldn't have took it for granted that you girls where not hurting but i did not realize just how you where feeling so thank you for letting me know but i now feel bad that yous are not feeling as good as i thought yous where feeling oh i just pray that the three of us feel better soon. And ihtos don't you dare change your name i like it and if you did lets face it someone else would grab it right away because it is a cool name then we would be all confused because we know you by this handle then we would forget and think we are chatting to you and it would be someone ales. Well i think i am back on track i hope i don't have to many more of those pity parties ha ha. I well be talking with my psychologist next Monday so i can take my feelings out on her that's what comp pays her for so have a good evening all bye and chat later.:winky::grouphug:

Its the eighth to day so that makes it 13 days since surgery and my strips started to fall off yesterday. Now there all off and it is not very pretty scare and at the end near the chest seems to be harder then the other end near the back. So now it is time to start rubbing it with some vitamin E oil and see if i can't get it to soften up a bit i know already i well have to really take my time because it is so tender i am not sure if i well be able to get the one end to soften up very good i can only hope. The spot on my upper back arm that had a strange feeling and not much sensation seemed fine yesterday but it is back to the way it was after surgery. And for some reason the spot in my back is really bothering me right now well actually most of the day. Other then that not to bad i should be getting my puppy tomorrow i can't wait to bring my chihuahua (Chico) home. I well have my days busy with him so it well make the time go by faster then sitting alone all day:) Well time to go chat later:grouphug:

Yeah to friends in the day.....
 

Mucker,

have a wonderful time with your new baby.....and they are babies....I am 33 with no kids and my cat..10yrs old and I still call her a kitten.....she is my baby for sure.

Pets know when we hurt and need a hug or a little lick on the cheek.:Wave-Hello: The are unconditionally loving and are always there to listen to the good and the bad and the best part is they won't tell anyone or complain to you!!!!!:D :Dancing-Chilli:

Have fun and enjoy every min even when Chico pee's on the floor or on your clothes or watch out when the clothes get chewed......need I go on???

Have a great time!!!
Love and hugs to you and Chico..

I have always wanted what I call a chewy-chewy-wa-wa. I love them.....hugs V:hug:

Hi every one i hope your all doing fine. As for my self some good news i have not had any pins or needle feelings in my right arm for two days now but i still have the tremors and aching in my forearm as well as elbow and to day my neck is starting to feel stiff again. I am having a little problem with the scare i still hurts to rub my vitamin e on it more on the end were there is a lump very tender feeling. I have been trying to cut down on my Hydromophone from 8mg every three hours to 4mg every three hours. My next step well be to go every six hours and hopefully get off this stuff all together once again. I still have not heard anything about my appointment with Bethune but i should be seeing him by the end of this month it well be five weeks. Oh ya i almost forgot i have been having a lot of pain and discomfort in my middle ribs i don't know why it would be hurting there because it is the first rib he removed and this is so much lower go figure. I still have the sore spot in the back but i do have the felling back on the top of my shoulder. The spot on my arm i have started to get feeling back but the mussel still aches and still feels strange. I don't feel so depressed anymore thanks to my little puppy Chico he is so cute he only ways 2bls thank god for that so i have no problems picking him up. Well i need to sign off for now so bye for now hope every one is doing ok:winky::grouphug:

Hey Mucker- Not that there are no scalenes attatched to the first rib, everything attached to ribs 2 and 3 are working overtime. I have a lot of soreness in that area myself, and did last time, too.

Glad to hear you are able to taper your pain meds. Don't rush it. It has just been two weeks....not really very long in the grand scheme of things.

*hugs*

Johanna

hi Mucker
 

Glad to hear things are duing well. Just be careful decreasing your pain meds. Don't do it if you are having pain. I hope that you can do it in such a way that you are not having pain when you do it. If you are having pain.....don't feel you need to decrease your meds. They are there to help you so keep that in mind. Not to say you are not doing the right thing just making sure you are doing it comfortably and with your comfort....just some caring thoughts.

happy to hear from you!
love and hugs,
Victoria:hug:

Hi Mucker, its so fun to get a puppy!! I'm just glad for you it's a small dog. I have a yorkie and she weighs 8 lbs.

My incisions are sore and lumpy feeling too, and so thick feeling. I have soreness in my biceps by late afternoon everyday. I was told it's muscles compensating for the loss of the pec minors and its to be expected.

I'm glad you're feeling somewhat better. Take it slow and enjoy those puppy "kisses". :hug: Ihtos

Mucker- i'm glad your pines n needles feeling went away. Enjoy the puppy!! Our dog (a doxie/terrier mix) was about 8lbs when I got her.... now shes about 18lbs, but still cuddly as can be!

Ihtos - sorrythat your biceps are buggging you, but i'm glad the doc gave you a good explanation.

JoKat - take it as easy as you can .... or don't overdo it (too much)

I hope you all continue to feel better and get some relief!!!!!

Hi there hope all is well and that not to many of yous are having any bad flares going on. Well good news i still haven't had any pins and needles so i hope that the other aching and pain well go away soon. But then again i still have carpel tunnel in my right hand so i know that is why my hand has not gotten any better. Does any one know if the neck and head are affected from tos like i have been finding that sometimes my head and neck shake and it well happen when i am sitting standing and even laying down. I have tremors in my right arm a lot and i know that it has to do with tos so i was wondering if any one else has had this happen to them. I go and see Bethune Oct 1st so i guess i should find out then if he well do my left arm. As of right now i would have to say i do have a little relief from pain but not sure if it is good enough to warrant the left arm being done. But then again i could feel a lot better by the time i see him i hope any ways. I am very happy i got my puppy he has really helped with keeping my spirits up he is so sweet and funny and love able. I think my poor boy is getting a little jealous ha ha ha. Well time to sign off my elbow is aching like crazy. :grouphug:

What i have to say to day is important it is also embarrassing to say the lest but i have thought about it and i have decided that i should share this and keep with telling every thing that happens with my recovery story. So bare with me i am going to try and explain this with out taking to long. Last Thursday i started feeling like i was getting the flu i had hot and cold flashes just didn't feel right. This has been going on till to day when i finely figured it out. My other half always gets sick withen two days of me catching something so when he was still feeling good to day i new there was no way that i had the flu. The thing i realized was that when i took my hydromorphone (dilaudid) the short acting one that within half hour all my symptoms would go away that's when the light went off. So i went on the web and checked withdrawal symptoms and bingo i have been foolishly not been taking the meds as i should have. I knew i had to start cutting back on them which i was i was spacing my pills further apart but then last week i really didn't need them as much because i was only taking such a high dose for the pain relief of the surgery. I just wasn't having the pain to be taking 4mg every 3 hours or even 6 hours a day. I still take 9mg in the morning and 12mg at night this is long lasting hydromorphone and it is enough to help with the tos pain i have. But not thinking i did not realize that i would go through withdrawals but i have been on dilaudid for over a year but i did go off of it like two months ago because it did not make any difference in my pain. I don't remember going through this last time. The doctor put me back on it for the surgery so i didn't think that this would ever happen go figure i have learnt my lesson and i hope that this may help some one else. I am taking my pill again and i well take every 6hours and slowly lower it over the next while and hopefully come off of this **** with out any more trouble. As for the tos pain still no pins and needles thank god but been having a great deal of pain on the left side of the right hand which goes up the side of the pinkie. Well i need to go my hands and arms are getting sore so i need to stop before they get any worse. chat latter:grouphug:

horrible effects.
 

I posted a little while ago about being careful how you come off your meds!!

http://en.allexperts.com/q/Pharmacy-...withdrawal.htm

I have searched for over an hour and looked for info on how to taper off these meds online and there is not a shred of good info aside from addicts boards......so I think I will have to come up with something. Leave it with me........:confused:

I have had this happen with a muscle relaxant. I should have been more specific when I said be careful coming off your meds. I should have explained how the physical effect of addiction is....not a mental thing....just tht your body is used the that amount of medication and unless you taper off appropriately then you will end up feeling the awful way u did. I think we should perhaps put a sticky up about tapering your medications without doctor supervision. Did the doctor tell you how to come off your meds???


The effects I had were the same and had massive projectile vomiting and hot flashes and it was disgusting. It was with flexaril and it was due to the medications effects on my brain. I had been taking it for so long that I had to taper it so that I didn't have the effects.....eeeeekkk:eek:

I hope that you can get it sorted out and feel better soon. Thanks for letting everyone know the side effects of coming off meds too fast!!

Take care and feel better;)

Love and hugs,
Victoria:hug:

Very Brave of You to Share...
 

but mucker, please hear me on this... you have absolutely nothing to feel embarrassed about. there is no shame in having to take pain meds for the awful sx of TOS or the acute pain of the major and risky surgery you have just been through. and there is certainly no way you could have known that your body would have reacted differently this time than before, to stopping the same medicine!

listen, i will tell you i went through the same thing. i started to taper about 2 weeks after my rib resection, because i did not want to be on the narcotics either... and i was really, really hoping that after having surgery with a top doc that i wouldn't need them anymore. i specifically asked dr. annest to put me on a schedule to come off the damned things and he was happy to oblige me.

when i got back home to los angeles i consulted an addictionologist at one point - that is a doctor (usually a psychiatrist but this one was a general MD) who specializes in treating addicts, whether they're chronic pain patients who've gotten into trouble or whatever - and i happened to mention to him that i had started to taper off of the pain meds 2 weeks post op.

he told me that he thought that was WAY too soon and that he would have had me stay on them a lot longer! the reason being, TOS surgery is a particularly nasty surgery to recover from, mucker - the surgeon has to disturb a lot of muscle and other soft tissue, not to mention nerves and vascular structures, in order to perform it.

and on top of that you have BONE pain to contend with. and studies show that your body will HEAL FASTER if you are not in pain. that is WHY your doc is giving you the meds - it is part of your tx, and can be an important piece. why shortchange yourself? only you can answer that question, mucker.

no picnic, in anybody's book - even if you were in tip top shape going into this surgery... and most of us, sadly, are not. we've been in chronic TOS pain for some time and maybe not in the best of shape to begin with.

so i guess what i'm trying to say here, is be patient and kind with yourself. i know you don't want to stay on either the long- or the short-acting dilaudid forever, if you can help it. but it is not a race! you can do this v e r y slowly; perhaps one of your docs would be willing to write you a taper schedule to help guide you through it so that you can avoid those really unpleasant withdrawal sx.

there is a big difference between addiction and physical dependence. please don't beat yourself up about this. you may need those meds right now and in the foreseeable future. lots of TOS'ers do - it's just a tool in the toolbox. it does not signify a failure of any kind, moral or otherwise. i agree with you that it's a personal choice. but please, as vic says, be careful doing it, you've been through so much already - withdrawal sx will flare you up like there is no tomorrow... and who needs that, right?

there is a good website where you might be able to get some info if you're interested: www.pillsanonymous.com -- sort of a 12-step group for folks looking to live life on life's terms without the addictive use of prescription meds. if you post there you may be able to get someone to help you with a taper - lots of chronic painers on that forum i do believe.

good luck to you mucker. keep on truckin'...:)

alison
"Be Brave"

Hay Victoria i guess i must have missed your post about coming off med's i well have to check it out if i can find it. Sea pines don't get me wrong i am not a shame in the lest little bit about having to be on Dilaudid i have no shame what so every about taking any drugs for my pain i do what i have to so that i can be comfortable, life sucks as it is with the pain from tos. First my doctor said that it is time to cut back and she knows that i did it on my own before so i do believe she figured i could do it again. I don't really see the point of taking any pain meds if you don't have pain. Like i said i don't have any pain from the surgery i did but it has stopped and they gave me the drug to help with that pain. I still am having the same pain that i had from tos well most of it. And it feels nothing like the acute pain that i was having from the surgery i know that i am still healing but i don't need that strong of a med for this. It was my own foolishness by not sticking to the plan in the first place it just goes to show how your body becomes so needy and when you know longer feel you need to take a pain med what well happen if you just stop or lower the dose to fast. This is why i decided to tell every one what i did and what happened because my body or mind not sure who ruled on this one said that i did not need that extra kick any longer but one side of me again body or mind said different and let me know in uncertain terms i needed to go back and taper off slowly. Oh and as far as bone pain yes i do have some discomfort in my shoulder blade and if i move a certain way i well get some in the front. My lower ribs do not bother me any more so with that it is not bad enough to warrant meds. So don't worry sea pines i am doing fine and believe it or not i do know what i am doing i just goof up now and then. So this is why the embarssment i should have known better:o:D