Hi everyone

I made it home okay and I'm trying out my voice software. This is pretty cool but doesn't really work all that well. My hospital stay was miserable and I will have to tell you all about that at a later date. I did get a private room but not at first and wait to you hear that story. They were in a hurry to get me out of the hospital but yet it took forever to get discharge. I came home Wednesday afternoon after finally getting my medication straightened out. Thank goodness my husband and was there to yell at the nurses and help me with everything. He was a big help to me the whole time.

I am one a pretty strong medication called dilaudid. This stuff works pretty well. I have been taking it every two to three hours and ibuprofen 400 mg every four to five hours. But I still have some pain but the doctor said that his normal. My pain is that of level 3 to four and I don't let it go above 5.

I can't use my right arm at all and I have instructions not to do anything until I see this surge in again in five weeks. I am not allowed to lift my arm above the shoulder level or lift anything at all I feel pretty drugged up and in and out of sleep all day. I am not eating very much and I am still having trouble swallowing nobody told me how difficult it would be to swallow. I am having more trouble than yesterday. I feel like I swallowed a frog. I don't have much of an appetite who and I feel like I have a giant lump in my throat. Yesterday I was talking and standing and almost fell over after a few minutes. I can't be on my feet very long or talk very long. I knew I would have pain but never imagined how hard this was going to be. I have a long road ahead of me. At least the surgeon found the problem and feels that the surgery will be a success. I have already noticed a difference with my vision and hearing my right eye was affected greatly. My ear has been ringing and I have been getting the shocks down my own arm. I feel as though I am getting shock therapy. The doctor has said my nerves will take some time to recover from all of this. The surgeon said my nerves were really trapped with scarring and by the muscles. The whole team couldn't believe how much compression there was and how lucky I was that they could find it so easily. The surgery took three hours and I did not do well with the anesthesia. I sure hope this works because I don't want to do that ever again. The surgeon is concerned about my left side as well. I am not sure what my future holds but I have very long recovery time and have to be very careful. We think that the injections I had caused most of the scarring. The whole hospital staff was interested in my case. They don't see too many of these surgeries and conditions had lots of questions for me. I guess I was a rarer breed but they did take good care of me(well at least the surgeon's team did) I will send another update next week. I need to go rest. Thank you for all your support and concerns.

Momz

good newz Moms! I'm so glad the surgery is behind you. You've been very brave! Now please rest easy and try to stay positive and in the present; it's just not the time to think about doing your other side. May you find comfort as the days pass. I hope that your irritated nerves will calm down quickly and that your anxiety will too. That's terrific that your husband is so helpful.

Soft, gentle hugs and best wishes for success from your procedure!

Momz Glad to hear you are home. Rest and let others do for you. Keep us posted on your progress! Linda

Momz,

Glad you are home now and on good drugs! (Keep them away from the kids...) Take it easy and rest, rest, rest. Sounds like you have a great hubby to take care of you!

Sue

i had my sugery on left side tuesday morning. My doc said the same thing...muscle were twice the size of normal and massive scar tissue. I had NO injections so don't blame it on that. I am feeling pretty much as you. Pain control fist night was lacking to say least. Today Sunday is day 5. Feeling pretty not too bad except swooshing sound in chest, like a bucket of water. He did scalendectomy and rib removal. one handed typing so very slow, trying to taper off morphine and go back to demerol. not sleeping or eating and i was told to do excersizes on arm. email me at rwheelan@aernet.ca if you want to talk more since we are going through this together.

RAch

Momz and Rachael Hope you both feel better. Take it easy and rest.

Linda

CONCERNED RACHAEL - are you at home or still in the hospital? The reason I am practically trying to scream through the net here is that sometimes with our surgery we get fluid in the lung or chest cavity. I don't know what that swooshing sound is - bucket of water - I am really worried - can you get to an ER right away and have it checked out? I am going to try emailing you too. I hope it's nothing. But I am scared by what you are reporting. Please let us know if you're ok, ok?

Hi all
thanks for all your replies! I am trying to use my voice software but having trouble talking so I can't send along message. This thing is pretty cool when it works but it has trouble recognizing my voice.

I am doing okay as long as I keep up with my meds every three hours. Yesterday I had a pretty rough day was still in pain even with the meds. I think some of it is nerve pain because it feels similar to what it felt like before the surgery but 10 times worse. It comes on real fast and then goes away after I can think of something else and breathe deeply. I am still having trouble with swallowing and talking. The more I talk to more pain than I get in my voice is extremely crackly. I sound like I swallowed a frog. Every slight move from seems to hurt around the incision. I guess with it being in the neck it makes everything difficult.

I have a question that hopefully some of you might be able to help me with
is it normal to have numbness around the incision shoulder chest and jaw area. I feel like I have been shot with Novocain all over. My chest on the right side near the incision feels like a board and is know numb. My shoulder hurts to touch and anywhere around that area. I kept asking about the numbness in the hospital but nobody gave me a real answer. The surgeon told me that it could be the nerves are just irritated. I am concerned since it has been a week and still very numb. My chest still hurts especially after talking and breathing deeply. Is this normal? Also is not having a voice in difficulty swallowing normal after surgery? And this morning my hand was pale white absolutely no color and and cold. I feel the same as before but worse. I am pretty worried about my voice and the swallowing along with the numbness I sure hope this gets better.
Momz

I haven't had surgery..........so I can't answer that one

I would think the voice recog software will work a lot better as your voice improves as the effects of surgery wear off.

Take Care !

Dear Momz,

I am not a doctor nor do I have enough knowledge to adequately address the issues you raise. However, I am worried for you. I did not have any of the issues you raise, except one, which I'll address below.

ALL of the issues you are bringing up are very, very serious and should be talked over with your doctor, and maybe, I hate to say this, but another doctor, like another surgeon for a second opinion. It is not "bad" to ask your doc if there is another vascular surgeon to check you out for a second opinion, or ask your hospital if they have a patient advocate or other hospital / patient liason to ask if they have another surgeon who can check you out just to make sure things are progressing normally.

That said, swallowing difficulties (which many of us TOSers have from TOS and not related to the surgery) can be caused via surgery due to complications with the "phrenetic nerve." This is a VERY serious situation. Cutting, nicking, damaging, swelling of the phrenetic nerve controls swallowing and breathing, I think.

The whiteness of the hand could have to do with possible blood clotting, as that can block the circulation. So maybe you need to have some MRIs with fluid imaging right away - I don't know, I am just thinking off the cuff here.

Now, when I had surgery, I did have shortness of breath, still do, did before surgery, and it was / is due to "adelectosis" (sp?) which is where parts of the lung stick together because they haven't been pushed to be opened (like any exercise) and / or they were deflated and/or there has been some fluid. I don't know if you've gotten your surgical report, yet, but some of us have a lung that is deflated, some it is merely pushed far to the side, but I think in all of our cases the lungs are screwed with, for lack of a better medical term, during surgery. So the docs told me to really push my lungs open to breathe, and when I first had my surgery (and thereafter) I forced myself to walk the halls with my IVs in hand, many, many times, to fight having fluid collect. So this is another point where your doc(s) need to check those lungs to see if they are clear.

Numbness around an incision (for a small area anyways) is normal, I had it with my cesarean, with my breast surgery and also with the TOS surgery. I also had a burning nerve come down my arm and to my thumb. All went away. A year later I am not numb anywhere on any of those surgical sites. But, to the extent that you describe, well, I don't know if that much area is "ok", or if that is indicating some nerves were bothered / irritated during surgery. My surgery was under the armpit.

The bit thing after surgery is not to make more scar tissue. I was not able to do any PT because I had such high fibro pain going along, and I couldn't travel to / fro the PT. And then you have to be so careful with the kind of PT you have - is it the Edgelow or Butler kind? But if one can do PT it does make one better than those who can't. Is your doc recommending any PT? Both Edgelow and Butler can be ordered via mail.

The only times I had that awful "novocaine" feeling, and it was uncomfortable, was first when I had a scalene block, and then when I had a normal root canal and my tongue / face swelled up like a mess. I think both were a reaction (bad) from lidocaine and marcaine. Can you ask your doc if any "caines" were used in your surgery, which I think anyone with TOS and / or RSD may have reactions to? This is all just stuff I have heard or talked about with other TOSers, and like I said, I'm not a doctor nor do I want to cause you any problems. I'm just adding this for you to consider. And I do care and feel really bothered that you're having so many apparent problems. See, with my surgery, it was the fibro that freaked out, but my arm / hand, TOS symptoms, including headache, all seemed to calm down for at least a year.

Well, that's all I can handle for now, back to bed for me, God bless you and please keep us posted.


Best thoughts and wishes, Tam