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

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?

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!!

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

sorry- just realized I posted this twice!

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.

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

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!

I can say that it hurt after my surgery I had a morphine drip and a controller to push the button for relief of pain when I woke up I was never out of pain for the first few days they will try to get you moving as soon as possible, yes work on breathing I was in hospital 8 days had my tube in me until I seen doc then it was removed so it was in me for awhile. Oh the drive home make sure you have pillows OUCH! you will feel every turn and bump sorry man the first few days I slept allot and did not eat the pain was great I had no problems pushing the button for morphine pump and you can not get comfortable in bed I don't know about showers I did not care for one nor can you with a open wound the nurses washed my hair and bathed me movement was painful ,they even offered to feed me the first few days LOL a major concern is you O2 reading they checked my O2 allot do your breathing thing they want, and PT will want you to move so they will help you also. I had a nurse in my room for the first 24 hours next to me at all times which was so nice I woke up thinking they did not operate on me at first because the last thing I remember was pre op and them saying I will feel sleepy and poof! next thing I knew I was in pain and in a strange room, i wanted to call my wife LOL they said it is 3:00 am and I do not think it would be good LOL but they where so nice they called her for me in the morn telling her I wanted to call her LOL I had to have a fan on me at all times because of being hot and sweating I think it was my RSD causing that. My operation took awhile because of the compression and I was really messed up so it took allot longer.
It may be different for you as I see allot of people have different reaction to the surgery some seemed to have less pain and where out of the hospital sooner some stayed longer all I can say is it hurt and I had great care given to me by the nurses and staff and my Doc they all understood the pain and what we need for relief but be ready to move the PT's will want that and they will give you a breathing exercise to do it will hurt but you must do it. I hope this helped you.
flippn

Hi everyone...thanks so much for all your replies.

I am getting a bit nervous now but really just wanting to get this done! I want my life back! I want use of my arm again! One day OF NO PAIN would be sooooooooo nice! Not sure if that will all happen but I'm hopeful!

I am so stressed right now (posted why in the Today I ..section). My hospital stay is looking like a needed vacation right now. UGH!

I have to say...I'm on on one heck of a weight loss program! Sheesh!

Your stories have me a little worried as to who I'll be rooming with. The way my luck runs...I can only imagine

Johanna...your story of your roomie made me laugh so hard...my son was wondering what was so funny and I read the part of the bowel obstruction and potty...he got the hiccups laughing...even though we both feel for you on that one....how awful!

My husband will be with me and hopefully I won't have too much trouble. Only problem is...we have 4 kids and the hospital is an hour away and he has to be at home too. I had a bad experience when I had my hysterectomy. So I am worried. The night after my hysterectomy...my tube came out of my back (had an epidural). I was in so much pain I was crying and crying...begging for help. I couldn't get a nurse! NOBODY! I was by myself with NOTHING..! I finally got a nurse to come in (2 hours after pressing the call button). Then the nurse goes and gets an ice pack and says "what do you expect..you just had major surgery" . I was on fire ...burning up and in so much pain. Also, the surgeons used latex during the surgery...yea...I'm ALLERGIC to latex! OH WHAT A MESS! I screamed and screamed...by morning I got another nurse who called the anesthesiologist! I told him I demaned someone look at my back cause I felt that the tube came out and I was getting any meds. he had me sit forward and yep I was right! How friggin hard was that! the nurse couldn't look for that! Well, my husband said I should've called him...but it was the middle of the night. He then said I should've called 911. I still laugh and think I will do that next time...Can you imagine...calling 911 from your hospital room to get help! I WILL NOT hesitate to do it either.

Hope all is well...

Momz