[momzpeachy]

Hi everyone...

I am sitting here bored out of my mind feeling crappy as usual. This weather sure isn't helping! I had to take my daughter to a Dr appt this morning and my neck was on FIRE! I'm wondering..am I gonna die of boredom or pain? Or both at the same time

I'm getting ready to have surgery...feeling a bit nervous. Those of you who have had surgery....what was it like when you woke up? How long were you in the recovery room? Did you have a drainage tube? I was told I'd have one until the next day. What were you given for pain? How many days were you in the hospital.

I'd like to here some of your stories so I can get an idea on what to expect. I still have no idea what I'll get for the pain (med wise) since I'm allergic to EVERYTHING!

Talk to ya soon...

Momz

[Jomar]

bumping up.
I can't help much on the TOS surgery/hospital stay.

But,
I wonder if there is any "outside the box" pain relief that you could use after surgery?
maybe -
biofeedback, hypnosis, electrical stimulation (TENS, IF stim), low level laser, maybe some homeopathic remedies?

might ask the dr/surgeon about these alternative pain relief types-
they are aware of your reactions to other meds right?

[beth]

Hi Momz,

I can relate some of my experience - but all hospitals are SO different! Best advice I can give is if at all possible have a friend or family member present as much as possible to advocate, firmly but tactfully for you. See that meds are given on time, water is filled, your questions are answered, room is cleaned, etc. It can make a HUGE difference!

Do you know what anesthetics they will be using on you for surgery? Because of your issues, I would really push to meet the anesthesiologist a day or two ahead. Then you can go over your history and what meds you CAN'T have. Maybe check with your Drs to see what has been used in the past that you did ok with. At any rate, the anesthesiologist is the one who can tell you what options there are, and who needs to know what you can't tolerate, and you will feel best if this is handled face-to-face and settled before going into surgery.

Surgery for rib resection and scalene release was about an hour and a half, then about that in recovery, maybe a little less. They want you pretty awake, then take an x-ray, and the Dr comes to talk with you - although I don't remember any of it, really. I had a drain (incision was under my arm, so that's where the lines were), and another line that carried Lidocaine, I believe, directly to the surgical site. However no one in Recovery bothered to wrap the lines on my IV pole, and when I got to my room my nurse saw the mess they were in and declared it "wasn't her job to untangle the mess and wrap them up, so when I got up and walked to the bathroom a day after surgery I tripped over them and pulled out the one with the pain med! (She was a HORRIBLE nurse, long story, and I was moved to a different room and nurse, thank God!)

I slept most of the first day; when I was awake the pain was awful, but the meds kept me at a distance from it. I had a pain med pump, and could push a button any time I needed more pain meds, in addition to scheduled pain pills. After 36-48 hrs the pump meds were reduced in amt, and the number of times I could push the button was limited to so often per hour.

I packed socks and slippers and was glad for both. The hospital is kept very cool, so socks feel good even in bed. And the hall floors are not always the cleanest, maybe this is due to daytime visitors, but my slippers were black on the bottom after my walks through the hall on days 3 and 4. I also had an oxygen tube in my nose, not the full apparatus, just a small tube I could take on and off myself. I was off that by 48 hrs, maybe a little sooner - keep in mind this was Denver, and I'm from the MidWest!

It WAS hard to get a deep breath, but I think practicing deep breathing, and breathing from all different parts of the lungs pre-op, helped me escape any lung-related complications post-op. No matter that it hurts, you MUST make sure that lung fully re-inflates if they've opened it. But tell visitors NO jokes as laughing is NOT fun! Ditto coughing, hiccuping, burping... Holding a pillow to your stomach when you cough helps a bit.

I didn't bring my laxative/stool softener with me - that was a mistake. What they gave me didn't do the trick, and my Dr. usually doesn't let patients go home til they have a BM I found out. But I got out of there without his finding out any differently, or I might have been there for weeks! Play it safe and take what you know works for YOU!

Pres/St Luke's in Denver had awesome food - a menu like a great family restaurant - even burgers and shakes - and you could order whatever you wanted by phone, any time you wanted it! But with hospitals you don't know what you will get, or when - so I pack nuts, raisins, crackers, chocolate - so I can snack when I want, or fill up when their food leaves much to be desired.

I was put in a semi-private first - I think my roomie may have been an addict and perhaps returning to court-ordered rehab. It was all very weird. Luckily I was out of it the first day, and she left on day 2, then I got moved away from Nurse Incompetent. Later I was at Hahnemann in Philly (I had IV-Lidocaine treatment with Dr Schwartzman for my RSD), and again had a roomie. She would not SHUT UP. Even when I drew the curtain she would come around it to talk!!!! For FIVE days it was constant - I wanted this woman GONE in the worst way!!! NEVER again!! Be SURE you get a private room - it's very little out-of-pocket, and worth EVERY penny!!

I had surgery Thursday morning, was discharged Sunday around 1:00 or 2:00. I think the drain stayed til they were getting ready to discharge me. I know they took x-rays the day after surgery and I think one more time. PT/OT came in the day after and showed me some ROM exercises to do in bed, and gave me a chair massage, that's the only time I saw them. I was given a shoulder immobilzer for the trip home, but not all surgeons do this. If yours doesn't arrange with your driver to bring plenty of pillows for that trip home! And see if you can get all your scrips filled at the hospital pharmacy - but you have to do it before you check out!

Hope this is helpful - and BEST WISHES!!!

beth

P.S. Night before surgery to-do's - shave legs and wash hair!!

[momzpeachy]

Hi Jo and Beth...thanks for your replies.

Beth, thanks for sharing your story. It gives me a little more insight as to what I'm about to face.

The only thing is..my incision will be in the neck and not under the arm. I'm a bit scared on this but it's the best option for me. I have been told this by several physicians now and was told my TOS is severe and the surgeon needs to go in through the neck to get a better look at everything. Also my surgeon is most experienced with that method.

I'm a bit worried what eating will be like after the surgery...going to the bathroom, etc...How do you get up to go to the bathroom? Will I need to eat through a straw? Chewing moves your neck...everything moves your neck so I don't know how this is gonna go.

I have plans to take my robe and slippers and I will be in no hurry to leave. My pain mngmt doctor told me I need to stay until I'm comfortable. Since they can manage my pain in the hospital better than at home.

My pain mngmt doctor is really good. She said I am a "classic TOS" and no doubt "requires surgery". She can't believe how long I've been going without anything for pain. She siad the tightness and pain is even obvious to her. She said this surgery should give me relief but is concerned that I will always have pain and problems due to the severity of my TOS. I couldn't eat all day today because I couldn't swallow. It's horrible! I can't stand this and I cried all the way home. She said I should look at applying for disability as she believes I will never be able to return to work. PEACHY!

She is trying something new with me. She has mixed some anasthetics and medicine into a cream for me...well a special pharmacy is doing it per her orders. I will get it tomorrow. She feels that my whole system is screwed up and I am sensitive/allergic to just about everything. I can't seem to tolerate medications into my blood stream. Ever since the allergic reaction to those trigger point injections. So she wants to try this and see if it will work. It's also something I can use post op. I can rub it around my incision on my neck. It just can't go on the incision. She is also having me try baclofen. Just 1/2 a pill once a day to see if I can tolerate it. I'm willing to try but this is crazy. It's also very expensive!

I can't type anymore...catch ya later.

Momz

[mtnmom]

sorry- just realized I posted this twice!

[mtnmom]

I spent 15 days the hospital with my blood clot and the subsequent rib resection surgery. The first day or two after surgery are tough and I spent my time so druged up in ICU. You probably wont be in ICU or even at the hospital that long.

The last thing I can remember BEFORE the surgery was telling the anasteseologist that I was very uncomfortable having god only knows what drugs being pumped into me and that being unconcious and having no control over my body freaks me out, worse than the surgery itself. The next thing I know I opened my eyes in the recovery room and wished I had my glasses so I could see. A nurse said that my husband would be allowed to come and see me shortly, but I wasnt worried about him becasue I was very thirsty and had very chapped lips. A nurse give me chap stick and ice chips and I was SO grateful to her and told her something like 'those are are best ice chips I've ever had". And then I can remember my husband looking down at me and that was about it... Weird, huh? Kind of like a strange dream you can only remember bits and pieces of.

I am with Beth all the way on the private room! Do WHATEVER you can to make sure you get one - ask beforehand. I only had to share a room for about two hours with a pregnant teenage girl/drama queen, and it was probably the longest two hours of my life. (I remember laying there hoping the clot would dislodge and just go straight to my brain, so I wouldnt hear her complaining and whining anymore! When I told my nurse that, they moved me.)

I also totally agree with Beth that before the surgery you need to shave your legs and armpits and wash your hair. You will be surprised at how long that takes you afterwards.

Also very importantly, work on your deep breathing and preventing any stomach issues that can occur. Drink lots of water! I did not take these two issues seriously enough when I should have and suffered afterward for it.

Take socks, panties, and even pj's and slippers. There is no dignity in hospital gowns and after a couple of days I was ready to walk around the halls (in my pjs, anything with an elastic waist and buttons up the front in case your hooked up to IV's). Dont forget your own toothbrush, face wash, deoderant, shampoo.

My biggest allies in the hospital were not so much my family but the nurses, if you play your cards right they will usually be pretty cool. Like let you take a shower when they are changing IV's, let you get up and walk around more than they should, bring you GOOD coffee from the cafe for visitors in the hospital, schedule massage therapist so come in (if your hospital offers such services).

I asked extended family and friends to not visit at the hospital but to wait until I got home and Im glad I did. You will be feeling pretty crappy and really wont feel like chit chatting with friends, you will need the time to rest and recover.

I wish you the best! Im sure the surgery will go well.

[LinJane]

momz, My rib resection and scalenectomy was done in 2000. I agree with beth, make sure you have a family member with you at all times if possible. I was in the hospital in Wilkes Barre, PA for 5 nights and in a hotel room for 2 nights after surgery. I had a private room and always had someone with me. One night my morphine drip ran out. My sister went to get the nurse. The nurse was annoyed that my sister was disturbing her. I had now medication and they told my sister to leave the hospital that she was not allowed to be there. The nurse actually called security. Here we are, my family doing the nurses job of getting me water, helping me to the bathroom, pushing the button for the pump and they were going to kick her out. Needless to say, all she did was mention Dr Togut's name and everything changed. When you are under such major medication you need an advocate for your health and safety. Best of luck Linda

[Jomar]

I think anytime you go to a hospital for a surgery -
it is important to have someone there to be with you and watch over things.
You can get permission for family/someone to stay all night with you- or just do it- as long as there is no excessive noise or disruptions.

Be polite but firm and go up the chain of command when that is needed to get results.
Stand up for your rights - patients are the reason they get a paycheck!

[JAMY]

I had my surgery early last year. I too have multiple drug allergies including local anesthetics and codiene so I was careful to relay these during my pre-op appt. On the day of my surgery I ended up having a reaction to the antibiotic they gave me prior to surgery (tingling feeling in my face, mouth and throat, vomitting, dizziness, headache) - all I remember is telling one of the nurses and the next thing I knew I was hooked up to a bunch of monitors and there was a bunch of people around me. Everything was put back under control and I went into surgery (still vomiting even in the OR!).

Apparently when I woke from surgery I was crying uncontrobly in the recovery room....I don't remember much of that time except my mom and BF being there and saying my hand was warm!

I spent two nights in the 'step down unit' of the hospital and was constantly being taken for xrays of my lungs. I don't remember exactly what was going on (I can find the papers and post if anyone is interested) but after two nights I seemed to have recovered. I had a family member with me 90% of the visiting hours and being in the step down unit I was constantly monitored and had great nurses. I did however have the IV that delivered my pain meds fall out in the middle of the night. I am a hard stick - they had nurses from every floor coming to try to help but it was morning before someone could get the IV back in - that was hell! I was on Dilaudid while in hospital and released on Oxycontin and Toradol (which I am still on to date). I had no drains in place after surgery.

I didn't eat the whole time I was in the hospital...I was pretty nauseous from the meds. But I was happy I had a house coat so when I got up to go to the washroom or to Xray I wasn't flashing all the old guys that were staying in the unit as well (I was the youngest one in the room!)

Not sure if this helps....

[johannakat]

Hiya Momz,
sorry for the late reply, but haven't been around much.

my hospital stays were pretty easy- two days both times, was so drugged didn't care about much. the experiences were different, because one side was much worse than the other, probably due to the crazy nerve swelling on that side.

Private room the first time, roomie the second time. Roomie was trouble, she was nice and all, but in for a bowel obstruction. well, all was fine until she became unobstructed in a little portable potty chair that was placed right at the curtain....eeeeeeeeewwwwweeeeeeee! glad i was walking by that point as I sceedaddled out of the room for a good LOOOOONG walk until the fume cloud dispersed.

I second the comment about competant friends and family nearby at all times. Instruct them to ask for the charge nurse if your reasonable requests are not being met. Also instruct your helper on how out of it you will be and how you are really going to need their help (especially if you have a somewhat oblivious hubby like mine doing this job). One of the things that happened to me was when they first put me in my room out of recovery, when you are quite helpless, my nurse button didn't work for a full half hour or more and nobody came to check on me. Then when they came i could barely talk and i could not explain what i needed because my throat was dry, and they said i could not drink water or have ice chips even though I had been having ice chips previously in recovery....needed hubby to simply say "show me where it says my wife cannot have water" a few times in response to whatever they said, and they finally brought it.

Ice packs were my best friend on trip 2....my first trip they didn't give one to me, but the second trip the recovery room nurse had one stashed at my incision by the time i came to...boy was it fantastic. I kept one on it the whole time to reduce the burning.

moms, i really hope you are able to find SOMETHING you can take internally for pain. i fear you are going to need it, otherwise this is going to be a long road. Can you drink? I am not sure i am joking here....and I am sorry if I have already asked that question. I would be practicing my hypnosis techniques if I were you. My other best friend next to the ice pack was my ipod...so I could just zone out and focus on the music rather than the hospital or the sometimes goofy nurses (i had a really mixed bag, some good some bad...).

Can you take benedryl? They gave me that after anestesia (to reduce the itching) and it really knocked me out as much as the pain meds, i think, maybe it will help you tune out. Being able to relax is critical to getting better. Pain makes you clench your muscles and that is simply not good for us Tossers.

in any case, for me surgery still remains a walk in the park compared to living with the pain. So even if it is rocky for you for the next month or so, i truly hope that you find some longer term improvement.

I'll be thinking of you fondly

Johanna

edit:
PS, I did have a drain for 5 days. Surgery monday, home wednesday late afternoon, drain out in docs office friday morning. I also had transaxillary rib resection both times, so will be different for you. Definitely better to have the approach your doc is most comfortable with...so don't sweat whether one is better than the other, ok? I have a good feeling about this for you.