How is Momz and so many others who have been going through recovery after surgery?

I am hoping that all of you are getting better. I can't list each person, but lately you all have been posting, and maybe you could just check in and let us know you're ok?

God bless you all...I do keep you in my prayers, for those who want prayers, and for those who don't, I keep you in my "good vibes" thoughts!

Hi Tam, thank you for the emails you sent to me at home checking on me. I am now 2 weeks post-op and finally beginning to feel better. My surgery went without any major problems. Post op they didn't address pain properly, forgot me and pain was out of this world. When I got home, the morphine was not good. I went off the morphine and back on my demerol and after a week got pain controlled. Dr Bethune removed the rib, scalene muscles and alot of scar tissue on left side. Week one was rough and I don't think I was prepared mentally for it. Silly me, I thought I would bounce right back. I have had no pre-op pain except buring in my elbow, all the pain is from surgery. I still have some numb patches and the area feels tight, but I am doing much better. I may go back to work next week for a few hours a day.

I will be better prepared if I go ahead and have other side done in 6 months. I know I will need the extra time off then as I am right handed. Ihtos has been a huge help and called me many times over the past two weeks to support and listen to me. Thanks Ihtos!!!

I hope everyone else who had surgery is recovering well.

Take Care
Rachael

Hi guys.. I am here checking in

I haven't been on the computer much because I'm too darned frustrated. My husband installed the voice recognition software on our laptop something is wrong with it and keeps crashing. Every time I try to send a message it crashes on me so I quit. We still have the loaner laptop with the software which works fine so I gave up and used that today. But now this computer keeps crashing on me after I type this nice long message(well actually talk a message). I posted a message in the Today I section. I have been just plain miserable. I am still having trouble with my voice which is a problem when using this software. I am still having problems with pain and the doctor is adjusting my meds. Of course the doctor called me today wanting me to come right in but forgot one major detail..I CAN'T DRIVE! And of course I have no one to get me there. Finally the doctor called me back and is upping my Neurontin to 600 mg a day. I've been taking 300 which works but wears off. I've been taking a 100 mg three times a day. She's trying to get me off the morphine and mostly on Neurontin. It seems like most of the pain is nerve pain at this point and is really bad. I'm waiting for flames to start shooting out of my shoulder... I feel like this little man is in there with a blowtorch! I was told that this could be the nerves firing up from surgery or it can be nerve damage. I still have numbness trouble breathing deeply. When I breathe in my right side of the chest up to the neck hurts. I have numbness in my chest feels hard right below the incision and also above the incision is numb. I feel like my whole right side chestm neck and jaw have been shot with so much Novocain and it's not wearing off. What worries me is the chest pain and the fact that it feels so hard. The doctor and the PT said to just do some breathing exercises and do nothing... don't use the arm which is very hard when I'm right handed... when I see him on the 22nd we will go from there. The normal postop time is four to six weeks for these things to get better but if they aren't by the 22nd then we start to worry. I hope it does get better and this is not permanent. My skin is all rough and they said it was a bad side effect from the surgery and it may not go away. So today I cried some more. I just can't win. I can't talk any more my voice is hoarse. I'm sorry that I haven't message to some of you back but I'm so tired and it's hard to do. Take care

Momz

I will come back to this but I was worried about both of you.

Rachael, I am glad that you are able to have the other side done soon - I haven't had that done yet, and I think it's a good idea. I do think it takes about a year for the nerves to calm down, heal, and be what they may be.

You sound like you're really handling this time well, and I do wish you so much good luck and wellness as you proceed.



Momz, I am still very worried about your outcome.

I've never heard that the bumpy skin can be caused by surgery. I have seen / read about the skin disorders due to the fluids used in MRI imagery, but this is something different from that, right? People are suing over the MRI fluid reaction. It's called Nephrogenic Systemic Fibrosis. Please ask your doc if that is what they are calling your skin problem as again, that is something that in the US, they are suing for damages. God, not to scare you...just information. I hope it's nothing like it.

As for the nerve pain, numbness, please note that in my surgeries that used to take up to a year to heal and go away completely. First the nerves and site needed to heal, then the nerve needed to reinervate (sp?) and that could mean being prickly, sticky or buzzing...but that was short and then normal nerves responded. That was before TOS however.

With my TOS surgery, the surgery site is under my armpit and is healed perfectly. (My problems aren't there.)

I waited until I had horrific pain before surgery, so I don't understand higher pain, except that after surgery they didn't get my pain under control because the adjuster didn't "ok" the meds for it, so I went into a total fibromyalgia flare. That was entire body pain, like a horrible flu.

I am guessing here, but the pain in your shoulder sounds to me like the nerves are healing / reacting to the surgery, and maybe even coming back.

RSD is a burning pain that feels like the skin is on fire. You usually have skin color changes with it, like red or red & white doppled.

I was in the hospital for 9 days, at least, (I kind of forget), but I signed myself out as I had to fly home (from Denver) and I was no where near healed. I remember my neuro saying it took years for me to get sick, and to be patient. But I am concerned that your pain is so high.

I am not surprised by your tiredness, though. Anytime there is a general anesthesia, and in this case MAJOR surgery, the body is fatigued and needs a lot of rest for a month. So I feel the fatigue sounds normal.

I know it hurts to breathe, but opening up the lungs is important - can you ask your docs if it seems like the lungs have closed at all? Are they diagnosing adelectosis on the lungs? I guess I would want my docs to tell me more the diagnoses, than just, "oh that - it just takes time..."

I would also keep going back for rechecks, to make sure that the areas are healing and no fluid or infection is setting in. That hardness you talk about bothers me. Do they have you on any antibiotics? If not, then going back to make sure no infection is so important! None of us could drive - I still don't - so we find family, friends or ask our doc to prescribe an aide or if work comp then ask for transport to the doc. I don't know if any of those would work for you.

Don't give up on yourself. I know it's scary.

We care about both of you! God bless you both tonight...

Thank you Rach and Momz for checking in.

Momz, if the lung/breathing issue persists or the pains become sharp when breathing, ask to be checked for a pleural effusion (fluid build-up in the space between the lung and the chest wall). I had this as did another forum member (can't recall whom). It's a serious thing - go to the ER if it becomes scary to breathe!!

Rach - glad to hear you are progressing so well. That burning elbow is SO annoying, but it will go away at some point, use ice.

Hang in there Ladies!

Anne

Momz and Rach,

Hang in there. I know it not fun. Actually, it sucks but you will get better! Come up with a montra to get you through the tough times. Please keep us posted!! Linda

glad to hear from both of you...!

momz i would also suggest that if the morphine is helping you, don't be in such a big hurry to get off of it. make sure you take enough time to heal! subjecting yourself to any more pain than neccessary is NOT going to help you get better. For someone hurting so much going INTO surgery....well, i'd expect that much pain at least to last for several weeks...so don't rush it! IF your surgeon isn't accustomed to dealing with people who are in a lot of pain, she may not understand what you really need. My surgeon, a top TOS doc, tried to prescribe me 2 vicodin every 4 hours for pain after surgery, for a week. well.....I suggested that this was not going to be adequate because i was taking something around 2/3 of that for pain each day for the 6 months leading up to surgery, but he said this was what they did for everyone. After a few VERY uncomfortable days/nights, my pain mgmt doc put me on about what I thought i needed which was at least double what the surgeon wanted me to take (and slightly more than double what i was taking presurgery) to deal with that significant nerve pain that came after. I didn't really start sutting back until 4 weeks post op, adn then it was gradual. My point being that surgeons don't neccessarily understand people in much other than post op pain.

Speaking of which, if you can take morphine...why didn't you try some of that pre-op? there are a few people around here who take long acting morphine on a daily basis for pain...

OR, is that what is causing your bumpy skin? Just thinking out loud here... if so, i can see why you want to get off of it.

i would also be worried about the hardness. get to see your doctor. i wouldn't wait another three weeks if i were you. i saw my doc at 5 days and again at 3 weeks, and that was with no complications whatsoever.

Rach- glad to hear yuou are feeling good!

I hoep everyone continues to get better...got my own news today of a second impending surgery, probably sometime in february to remove those last 4 inches fo scalene muscle on the right side, as one has reattached and is causing problems. Not too worried, getting to be a frequent flyer with Dr Ahn and all. So far the surgeries get easier than the last and i feel a little better when i am healed, so I hope the trend keeps up.

to both of you, and wishing for more forward progress.

Johanna

Hi everyone, its been awhile since I've posted TOS was too painful to type.

It's been 2 weeks since my right rib/scalenectomy.

I've noticed the sharp shooting pain is much less, still have some though. Concerned about the amount of numbness and loss of sensation on the underside of my right arm and my upper right chest (incision above collar bone). Has anyone else had this much numbness after surgery? Doc says may be permanent, but I'm really hoping it's not.

I was really happy with my meds post op- the doctor made sure I was pain free for the most part. I'm doing OK now with Percocet, but still have some pain. Just trying to rest and keep mobility in my right arm.

How do I know if the surgery was a success?? The docs seemed really when I told them the sharp shooting pain was gone right after surgery, which was good and I thought the surgery was successful. But slowly pain is starting to come back (sharp shooting, heaviness, achy, pins and needles). It's not as much as before, but I'm worried that the pain will keep progressing and I'll be just like I was before??

How can I help my chances of success?? All the doc said was no lifting and keep mobility to prevent frozen shoulder. I think he wants me to start physio after my 6 week appointment, but I've heard mixed opinions on whether physio does more damage??

I'm wondering if anyone has some tips or things I should try - it's great to have others that have been through this or are going through it now- (even in the hospital I was the only TOS patient in the whole thoracic unit).

Michelle