I got the call
 

I am scheduled for surgery on my right side on Oct.23, and my left side Oct. 25.
I am very nervous. What I was hoping was that someone could tell me what I should do to prepare for the surgery and hospital stay.
I am assuming most of my time in the hospital will be spent sleeping and trying to get my pain under control. Are there any MUST do or MUST haves that I need to know about?
As this is only 10 or so days away, I need as much info as possible ASAP.
Thankyou all in advance for your advice, help, and encouragement.
Tracy

short notice!
 

Tracy, congrats! I hope this is the beginning of much pain relief for you! Is there someone who can post for you after surgeries to let us know you are OK?

I'm surprised that they are doing both sides so close together! I hope you have ample help at home. To prepare for the surgery, I'd have my lungs in the best shape possible: no smoking; walk daily to keep the circulation up; breathe deeply, also for relaxation (I KNOW you are nervous!!); eat well.

In the hospital, you will need a heating pad, and someone to remove it occasionally. When I was alone, I had it cranked up to high and nobody noticed it for days - almost cooked myself! I used that on my back, while I prefered ice on my incision areas. Hospital should provide you with ice and heating pad. Cold drinks also helped a lot - and serbet/ice cream. I developed a frozen Coke addiction :p Also if the nurses allow it, try to walk the halls - it's important to keep circulation going and lungs clear. You may be getting PT in the Hospital too.

Once home, rest, rest, rest. Watch that posture, go to PT as directed, use ice/heat, and take your meds ON TIME. That's very important in pain control. Keeping a steaady level of meds in your system is better than waiting till you are in pain (like sleeping thru a dose). I also had to write down when I took my meds, as 5 min later I'd forget. Keep a pain/pill journal.

I'm sure others will have loads of good advice for you.

YEAY PROGRESS! :)
Anne

Yes, short notice indeed. I need to figure out what to do with my daycare. I am hoping that my mom and husband can take care of it for me. The week that I am in the hospital I will close the daycare. I just cannot afford to have the daycare closed for more than one week.
My husband is very stressed out. He doesn't know how to fix this, and he certainly has never had me being completly out of commission for more than one or two days.
I am very nervous, I can hardly think straight. I need to worry about getting a great many things organized in a small window of time. I have to temporarily give up my volunteer work, and that bothers me a lot.
Well, enough babbling. I hope to hear from others soon.
Tracy

What I found helpful:

Stock up the freezer beforehand with frozen meals. My mom made a huge batch of chicken and noodles while I was in the hospital - it was wonderful, fed us for days. If anyone asks how they can help, don't turn them away - a meal or ride to and from Dr's appt is a real help - and they wouldn't offer if they didn't mean it! Stock up on some good videos and books,too.

Pack socks and slippers - hospitals are cold, and you'll want slippers when you're up walking around to prevent slips and falls. :eek: Shave legs the night before as you likely won't care to do so afterwards for awhile.
I usually bring peanuts, raisins, some chocolate as I never know what "surprises" hospital food has in store, or in case I'm hungry between meals.

Be sure to ask for extra pillows to place under your arm, scapula and wherever else you need to make you comfortable(I brought my own!).
You may also want to bring your own stool softener/laxative if you have problems getting your bowels started after surgery, usually they won't release you until a BM has been "produced".:rolleyes: My own are more effective for me than what they give me to take for some reason.

For me, heat felt good over the plexus area, but I wanted ice on the incision. It's whatever feels best to you. But if there's any suggestion of RSD, ice is STRONGLY discouraged. To wear home and while recovering, drawstring "sweats" like pants, and blouses or sweaters that zip or button (no tiny buttons) rather than pull over your head are most practical (and least painful).

Hope some of this is useful, keep what is, ignore the rest!

beth :)

get help in line now
 

Oh my god!!!! GEt the maid, cook and husband(asssumptoion sorrry ) lined up now and telll them wha they are in for if you have kids....hope they are old enought to help you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hope you go well

prayers and hugs,
Victoria

I think I have some things worked out. My MIL and FIL are going to come up the week I am in hospital. They will take care of the kids, and the after school daycare kids. My DH is taking two weeks off starting the day I get out of the hospital. My mom is then coming after my Dh goes back to work. She will stay for about two weeks. Through this time the daycare will remain open for the after school kids. I am in the process of letting the full time moms know that I will be closed until January, for any kids under 5.
I am fortunate that my kids are all school aged. They are 15, 11, 7 and 6. They do a lot around here already. We believe that they are expected to pull their weight around here. They do laundry, vaccum,mow lawns, clean bathrooms and kitchens, and a lot more as neccessary.
I am also very fortunate that my DH is the cook. He is far better than I am.

Hopefully, all will be in order by the time I go in.
Tracy

Tracy- Best of luck to you!!! Sounds like you have a good plan in place.
Try to let us know how it comes out.

Johanna

sounds like you are getting it all worked out pretty well.

Make lists {i'm a list maker!!}


I'll probably link this thread to the TOS tips thread as pre and post op surgery tips are needed there too.

Good wishes for you

I am so happy for you
 

Tracy, This is wonderful...... I wish you all the best and will most certainly be looking to you for advice when my date comes. Take it easy though ok? Let yourseld relax and let others do things for you. I know I am stubborn that way....Keep me posted on how you are doing. I wish I had more advice for you. Good luck!!!!

Rachael

I'm VERY surprised they are doing both sides so close together. When you have the surgery, the phrenic nerve is irritated. The phrenic nerve is responsible for deep breathing, and when it's irritated, it's VERY difficult to take a cleansing breath. I could not be released until I could breathe properly, having only ONE SIDE done, and that took me a WEEK having only ONE SIDE done. My doctor didn't want me having my other side done for at least 6 months after the first side was done. I'm very concerned yours is willing to do both sides so close together. Please make sure your surgeon and nurses are checking your breathing. Additionally, if you aren't breathing well, the risk of pneumonia is greater, cuz the fluid is not being expelled frmo your lungs. If they are going in the second time, 2 days later, it would only stand to reason your lungs will be operating at even LESS capacity, so the risk of pneumonia will be even HIGHER.

To exercise the lungs, blow/breathe deeply into the sphagmometer that they will hopefully give you at the hopsital. If they do't give you one, ask for one. This is important. Also, walk the halls as soon after surgery as you can. This moves the fluid around and exercises your lungs also.

Okay...I had my right side done last December. My left hasn't been done yet, and I doubt it will cuz I had rsd also, and the surgery made my rsd worse...I refuse to be "cut" again, cuz the first cutting making this rsd worse has totally KILLED me. My rsd has spread, so obviously my body is telling me "don't get that other side done!" LOL!. Anyway, after the right side only, I was out of commission for at LEAST 6 weeks. So I'm telling yo that if you only have help for 2 weeks, you best round up MORE help for about 4 additional weeks. I hope yu have closed your daycare for at least 6 weeks, hon. There is NO WAY you will be able to chase after kids for at least that long...maybe longer. I only had ONE SIDE done and was out o it for 6 weeks. I have really no idea why they are doing both of yours so close together. I have never heard of this...but hopefully someone pipes in who has cuz to me, this isn't right.

PILLOWS PILLOWS PILLOWS. That was my big thing. The sofer I could make what I leaned against, the better I felt. They were behind me, and under my arms, and on my lap so I could rest my elbows and not be in a "shrug of the shoulders" position. Pajama bottoms or sweat pants, shirts that zip or button up and that are LOOSE, and try to get some of the shampoo from the hospital that you can use to wash your hair without actually having to take a full blown shower. You won't eally have the energy for a few days.

Teh pain meds will constipate you, so get some laxitaves. You don't want to get anything that will cramp you up, so get something like senekot. However, the off brand, senna, works the same way. Or take about 500-750 mg's of magnesium daily. tha works the same way also, and is good for you. You may also want to start looking around for one of those little tables that you see for use in bed...like the ones used to serve breakfast in bed. That's where you'll be eating for a while. Hopefully you have a pull out sofa in the living room. That was my "bedroom" for quite a while. That way I could still be with the family while I recovered. I went to bed upstairs in the evenings.

But the biggest thing for me was PILLOWS. I think they saved me. You will also need them for the ride home, too, so have hubby bring at LEAST 4 of them. Tuck them under your arms, and hold one against your tummy, as a "cough pillow." You may cough, and it will HURT, but if you hold a pillow tight against your stomach, it will help to hold things tight so it won't hurt as MUCH.

Tracy,
 

Hi Hon,
I have waited to post as I was a bit concerned about both sides being done so closely together as well. I had my left side, (dominant side) done in Nov. 05 and am just now feeling pretty good. I don't drive, or cook, or shop, or clean.... I just take care of me!! I am Bi- lateral as well and have decided not to do the right side at this time.

My Dr. told me it would take at least 6 months for the swelling of the surgery to go down, and it took that long! My 1st rib and 2 of my scalenes were removed and my neck and brachial plexus were swollen and lopsided for a good 4 months. Bending over/ forward were and still are very difficult. I still can't lift anything much heavier than 1 lb. I can barely lift say, a bleach bottle. We get milk in 1/2 gallon containers so I can lift it.

And the breathing! Oh my Gosh, that is so painful for the longest time! At least for me it was. The drive home from the hospital was brutal, so yes !! Take tons of pillows and be sure you are plenty medicated if it is a long drive!

I hate to be a downer, and I don't want to be discouraging, but you did ask for people's experiences and I have to be honest and say I myself wouldn't dream of doing the second side so soon! :(

If they take out the 1st rib and any muscles, it is like changing the architecture of a building and expecting it to be as solid and balanced as it was prior, or at least that is the analogy my Surgeon gave me. He wanted me to wait 6 months for the swelling to go down and healing to take place before I began strengthening the muscles and learning how to use my body with the lesser "support structures". He had me work on posture and stretching, but did not want me using my arms or turning my head or having josteled too much. I wear a soft cervical collar and use neck and elbow pillows when ever I am in the car.

Maybe my Tos was different from yours, maybe the compression was in a different area, or more nerves involved than yours?? Or maybe it is because I was 47, ( maybe you are younger than I am and able to heal faster??)

I am concerned for you that you are going to be in for alot of pain doing both sides, and also a looooonnng recovery! A week's worth of help seems like it isn't going to be enough to me....:eek: Can the in-laws stay longer??

Geez, I don't mean to be so negative but this is serious surgery!! It took me 3 months just to be able to breathe normally and I have side effects from my surgery, for example my left eye twitches, it doesn't dialate as it used to so I am light sensitive, and need sunglasses sometimes even inside, my TMJ is worse now and will sometimes cause my bite to shift and give me headaches that have me flat on my back in bed even with meds. The pain and swelling in my arm is much better, but I can't return to my former work due to the position you sit in all day, ( I used to be a dental assistant) or any kind of job where my head is down and arms are used extensively. ( or so my Surgeon and Dr. Ellis say.) And the least little bump or jostle of my head or shoulder can put me in misery for days!

So, anyway, those are my thoughts and some of my experiences. I hope that you will at least consider doing your surgeries with more time in between for healing, maybe talk to your Surgeon some more??

Good luck Tracy, and I will pray for you and a wonderful outcome!!
G~ :)

Hi Tracey,
 

I had my right thoracic outlet operated on January of this year.. I had a scalenectomy and resection with neuroplasty of the nerves.. I didn't have a rib removed..

My pain control was good in the hospital and pretty good at home but there were times when it was so painful.. I didn't have use of my right arm for a good month and I wasn't allowed to lift over 3 pounds for 3 months.. It has been close to 10 months and I have started to have some discomfort returning above the clavical and into the shoulder and down to the elbow.. I had a repeat neurography and I now have scar tissue rebuilding in the surgical side which is causing some pressure and irritation to the nerves..

I am also Bilateral and need to have surgery on my left side.. I had hoped to go ahead with that surgery after the first of the year but now I may need to have them clean up the right first and wait on the left..
I myself couldn't imagine having had both sides done at once with the limitations I had on the right side.. My left became my dominate hand for awhile..

I needed help doing so much.. The first month was the hardest for me and I was so glad I had the help I had at the time.. My breathing was bad as I had shortness of breath for at least a month and as everyone said Pillows, Pillows, Pillows... I still can't lift over 4 pounds it is difficult and too heavy for me.. In my previous job I had to lift 80 pounds and now I can't do more than 4 with both arms and hands..

I have had relief with my first surgery as my hands don't cramp up and I have feeling back in my right hand..
As Gromley said this is serious surgery.. Please be careful and have help around for a Long time..

You are in my prayers.. Keep us posted on your outcome..
Best of luck..

((Hugs))
Dawn ;)

OMGOSH! I didn't even think of the lopsidedness! I had a REALLY hard time holding my head to that side without pain. Most of the time I had a pillow on that side of my neck (surgical side) between my face and my shoulder, to hold my head up. How in the WORLD are you going to be able to hold your head up if you are having both sides done at the same time?

TRIX...what type tos do you have? Who is your doctor? And what kind of surgery is this? Are you having a rib removed and scalenes? Did they tell you what will be done? Please let us know, cuz if that IS what's going to be done, hon...this just doesn't sound like the "norm." And there is NO WAY this is going to be easy. It's not easy ANYWAY getting one side done. I couldnt' lift a gallon of milk for at least 6 weeks. I could barely walk up the steps at home until that period of time cuz of the breathing issues (and again, that's only HAVING ONE SIDE DONE).

I would seriusly consider speaking to your doctor...finding out how many of these surgeries he/she has done, and how many of them were BILATERAL...and how many of them were done just a couple of days apart. After my surgery, the first 2-3 days I was still in a fog from the medication. I wasn't even ready to be weaned off of the push button morphine until about day #4 or so, the pain is SO BAD. I cannot imagine with such INTENSE pain after one side, having to go and do it all over again on the other side. You aren't going to be able to do ANYTHING for a very very long time. Not even pick up a fork to eat, if you have both done so close together.

And the head bobbing...if you are having a rib removed and scalanes...think about what is going to help you hold up your head. You will be missing 2 ribs and 4 muscles that help you hold up your head. When having one side done, at least there are 2 muscles and one rib left to help compensate...but when you have both sides done, you are going to get pain from the strain of not having something there to HELP COMPENSATE.

I would seriously...very seriously...ask some qurstions, trix.

Many people will JUMP at the chance at havibg surgery cuz they just want the pain to be over with. And they don't listen to those who have btdt cuz dang, here is MY CHANCE to be free of this awful pain and this is going to fix me! But I an truly begging you to 1). answer the questions we've asked about the type of surgery an what they are doing; and 2). ask the questions of your surgeon that I posted within. Please hon....

we are only looking out for you. This is considered major surgery for just one side. And it's dangerous cuz of that phrenic nerve irritation. I'm so worried about yoru breathing, your pain, and your super long recovery period. I'm 9 months post op and still cannot lift my arm without pain over my head. It takes a LONG TIME to heal from this hon. You should at lest have one good arm (or decent arm) while you do.

Please don't be angry with us. WE've btdt and this doesn't sound right.

Hugs
LisaM

I"m glad you all brought up these points I hope trix has time to read and follow up with the detailed questions to her surgeon.

I thought it was kind of soon for the second one too.
Maybe it is only a scalenectomy?? or pec release?

I hope she does have time to find out the details of what the surgeon has planned.

:( :( :( :( :( :(

Decided not to post.

Sorry it took so long to reply
 

Firstly, I AM NOT ANGRY. You guys are just giving me your experiences and your concern for me makes me feel cared for.
Secondly, I am having my first rib and scalene muscles removed on both sides. I too felt that having both sides done so close together was weird. I am seeing Dr. Bill Nelems at the Kelowna General Hospital in Kelowna B.C.
He is a thoracic surgeon and has done hundreds of these surgeries. Many of them were bi-lateral. A friend of mine that works with my dh had the surgery done about 18 months ago, bi-lateral done 2 days apart. He had a great deal of pain, and he says it was about 4 weeks until he could care for himself. He returned to work 2 months ago on graduated duties, and is now doing everything he used to do before his accident. That being said, he still has good days and bad days and some pain.
My doctor and I have gone over every scenario, and I have full confidence in his abilities. I spoke with the College of Physicians and Surgeons, and they refer Dr.s who want to learn about TOS to train with him. He is the number one TOS Dr. in Canada. He has worked with the Dr.s in Denver.
I spoke with my gp and nuero, and they both support this approach.
While I will most likely be bed ridden for 2 to 3 months, they all feel that I will have a better outcome doing it this way than waiting.
This will also be easier on my family then making them go through this twice.
I hope I have answered all of your questions.
Thankyou all so much for your concern. I wil bring it up to the Dr. again when I see him on Wednesday. It is always best to have all concerns addressed before going forward with something as serious as this.
Thanks, Tracy

Tracy, as long as you realize that you will be in a LOT of pain, and you will NOT be able to return to your normal duties as quickly as it sounded like you thought you would, and you are comfortable with his decision. We will be here for you.

I don't mind telling you that I am actually shedding tears for you, cuz I know the amount of pain I was in after only ONE side being done...and I can only imagine how much pain you will be in after doing it the way you are going to be doing it. I wouldn't be able to ... no way. Is he going in thru the clavicle or the armpit?

It sounded, to me, in your post, like you' only have help for 2 weeks, and like you run a daycare facility. Like you'd only be closing the facility for a couple of weeks, and that you thought almost like you'd be able to open it back up soon.

You said the person you know had the surgery 18 months ago and just returnd to work a couple months ago...that's 16 months recovery. Are you prepared for that, hon?

I looked this surgeon up. I'm like that :) Found all good stuff, but haven't looked him up on this site. Bad thing is, with OBT being down, we can't search for him there, to see if anyone else used him. But I found nothing bad online, so I wish you luck, hon. I really, truly do. And if you can't post afterwards, please have SOMEONE post FOR YOU...okay? Please?

Anything we can do, just ask. We'll all be thinking of you...and praying for a quick recovery.

Hugs
LisaM

I'm glad you posted all that you have discussed w/surgeon and all senarios - i feel a lot more comfortable with it for you.

My best wishes too...
 

It sounds like you are comfortable with your choice to have both sides done, and I respect that. I recieved alot of flack from several of my friends and a Dr. or two about the surgery before I had it ( oh it won't work,you might make things worse, it's a last resort!!, and I was at my wit's end!!) and I am happy with the choice I made.

You sound like a strong, determined,intellingent gal, and I will be counting the days and thinking of you!! Again, you will be in my prayers!

(((HUGS!!)))

G~ :)

Thank You
 

You guys are awesome!!!
I have people coming in to care for me for 5 full weeks. My children are 15, 11, 7 and 6. They are quite independent, and do a lot of the household work already.
With regards to the daycare, it is an in home daycare. The only kids that will be coming will be my youngest son's best friend who is 7, and another 7 yo and a 10yo. They are only here from 3pm to 5pm. I don't have to do anything for them, my help will handle it all.
If at the end of the 5 weeks my dh and I feel I need help still, my mil and fil will come back for as long as they are needed.
I have myself mentally prepared for the worst pain I have ever experienced. I know that God will never give me more than I can handle. I will have to trust that I have what it takes to get through this.
I need to think positively, yet realistically. I am prepared for this to take as long as it needs to take. I will come out the other side happier and healthier than I was before. It may take me years to get there, but I will get there.
Thank you for yours tears, your good thoughts and your prayers. I treasure them all and know that all you have written is only meant to encourage and strengthen me, and that it comes from loving hearts.
I will find a way to communicate with you as soon as I am able. I will try to get my dh or mil or ds to post for me while I am in the hospital, and until I am able when I get home.
Thanks again,
Tracy

Magic
 

Hi trix,

It is very strange my post to you disappeared. It was here a few days and now it is gone.

Happened once before.
Anyway - I wanted to send positive upliftin and healing thoughts your way.
You have a wonderful attitude & you have my prayers....Hope

5 days to go
 

Wishing you all the best and hoping that you have a speedy recovery!
(Have that 10yo type here for you!) :D

Anne