10 days till surgery; what should I expect?
 

Hello again.
I'm having surgery in St Louis, with Dr Thompson, in 10 days. I'm getting very nervous and anxious. I would like to know from your experience what I should be expecting. I'm having a scaleneectomy and first rib resection on the right, and pectoralis minor tenotomy on both sides. I know it's a lot, but I'm in really bad shape. TOS nearly ruined my wedding day, and my career. I'm ready for this.

I would like to know from you all what I'm in for; Surgery time? Recovery time? Pain levels? I know what the drs answers are, but I would like a real world answer. ;) My mother had both knees replaced about 10 years ago. She was in less pain after surgery than before. Are we, as tos sufferers, as lucky? Or not so much?

Any insight is greatly appreciated. I promise as always to keep you all as updated as I am able.

Jess

Jess,

Given the impact on your life, it sounds like it's time for surgery. It was having that sort of impact on me when I opted for surgery the 1st time. The only regret I had was that I waited so long to go for surgery.

You will be in pain after surgery but you'll be in the hospital and they'll get the initial post-surgical pain under control. The pain pump will be your friend. Given your issues with pain meds, they may need to switch medications in the hospital to find one that works for you. For my 1st TOS surgery, they figured this out the day after surgery. Once they switched the medication, all the sudden I could breathe better and the pain decreased, etc.

I am 10 days out from my 2nd TOS surgery and doing great but my case (this time) was primarily arterial TOS. I noticed the difference in the arm right away. Last time, it was neurogenic TOS and my symptoms that time sounded similar to yours.

Good luck!

Hi Jess
 

I wish you the best as you go forward with the surgery. That nervousness, and anxiety are very normal. I feaked out for my own surgery two years ago and found NT. Leesa was the first to calm me down, followed by others, who had walked where I was going. I never left NT for that reason.
I can suggest just a few things to help. I also hope you have a buddy, friend, mate, someone to give a hand for a few days at least. Have ready to go meals already prepared for when you get home.
I did not want to shower for the first days home. I used these wonderful adult waterless wash cloths from Walgreens. You do feel clean. There are also shampoos, you rub in, and by gosh the hair gets clean with towel drying.
If you have any problems at home, don't be afraid to bug your doctor, and ask. They know people get scared, even after the proceedure.
Most of all, be kind to yourself. This is alot for anyone to go through. I was fused C3-7. I had a week of help at home and was ever so grateful to my family and friends. I hope all of this is worth the effort, and that your results will be great. NT and those of us who have had some kind of surgery, will be here for you. You are on my prayer list too. Ginnie:grouphug:

The surgery is anywhere from 2to3 hours long. Yes there is pain involved so take your meds and get REST REST and more REST. You have to take it easy for a few weeks and PT will start around 2 weeks after surgery.I was in hospital for 2 days. Recovery varies for everybody, but from experience DO NOT push the recovery.

Surgery experience from June of this year
 

Hi! I replied on your other thread but wanted to give more info here since my surgery by Dr. Thompson is still fresh in my mind (June 14th).

Surgery time?
My surgery was scheduled for 9:30. My parents and I were staying at the Parkway Hotel so just walked over to the surgery center. I had to be there around 7:00 that morning. They got me back pretty quickly. Right away, my parents got a pager that the medical staff used to communicate with them during the surgery. They were able to come back with me to the pre-op bay area. Once I got there, I got my IV and all different people came to meet with me (anesthesiologist, nurses, surgery fellow, etc.). Everyone was very professional, and I felt like I was in good hands.

I didn't end up actually getting wheeled back to the OR until almost 11:00. My surgery (rib and scalene resection and aneurysm repair - all on the right side) lasted about 7 hours. My parents got phone calls about once an hour with updates. I'm not sure why my surgery took that long - I did have my subclavian artery repaired with a cadaver artery which may have taken a while. The next thing I remember it was about 8:00 that night and I was waking up in my hospital room. I had been in the post-op area for about previous 2 hours but don't remember any of that. My mom said I was conscious but still very sedated.

My surgery went very smoothly, and I was just so relieved that I was done. I was on floor 7500 (Cardiovascular) and the staff there were very familiar with TOS since so many patients come there to be operated on by Dr. Thompson. They had a great protocol down, and I never had any doubts about it. I never saw Dr. Thompson the whole day of my surgery. At first, I found that kind of odd, but in the end, I just needed him to do the operation as well as he did, and I felt confident that I was well taken care of for everything else by the other staff.

Recovery time?
I was in the hospital for 4 nights. My pain was very well controlled. At first I had a morphine drip as well as the pain ball in my incision area and I think oral meds as well if I remember correctly. They were very responsive to my pain needs. I really just slept a lot for the first day or so. I was on the all-liquid diet at that point. Around the second day, they wanted me to start getting up and sitting in the chair next to the bed, etc. I think at that point I was switched to the cardio diet (bland, no salt). I had blood work and a chest X-ray each day. I was also getting Heparin shots (I wasn't on any other blood thinners). The physical therapists came around and helped me to get moving a little bit which was pretty scary at first. At some point in there they removed the pain ball - maybe not until around when I was discharged.

I had a lot of discharge meds - OxyContin, Percocet, methocarbomol, aspirin, ibuprofen, stool softener, anti-nausea patches, etc. I picked those up the day I was discharged, and then my mom and I stayed at the Parkway Hotel for 2 nights until my post-op appt. At that point they just checked me over, and I got my drain out. I also had to get another chest X-ray. I saw Dr. Thompson briefly, and he was very nice. He gave me my rib in an envelope - kind of surreal. Before we left town, I also saw Matt, their TOS physical therapist, and that was helpful. I will see him again when I go back for my follow-up appointment.

Pain levels?
I guess any time you are having that many important parts of your body worked on, removed, etc., you are bound to have pain. I always felt like I had plenty of meds to keep it under control. My biggest challenge was managing the pain once I started wanting to come off the pain meds because they were making me too sedated (around week 3-4). I now only take them sparingly. I still have some pain if I do too much work on the computer or after some of my PT appointments. My PT exercises really seem to be helping, though. I also have a massage therapist, and I think that helps, too. Sometimes I just have to take it easy. If I rest and relax, my pain goes way down. Most of my pain is muscular in nature - I think just as my body is adjusting to new postures, not having to compensate for my messed up anatomy, etc.

Overall, I'm very pleased that I went through with the surgery. I was very nervous beforehand, and it feels great to have it out of the way. The recovery has been rough at times, and it's taken a while to get my energy back, but it has been worth it to have everything fixed.

I'd be happy to answer any other questions you have. I wish you all the best!

Hi Jr
 

I am happy that your surgery went well. That post op is hard. You sound like you are doing just great. Keep up with the PT. I didn't have the same surgery as you but I also completed PT starting at 4 weeks. It helped me too.
Rest alot, still sleep alot. This knocks the stuffing out of you for awhile, but you are well on your way to recovery. That positive post you sent in, is going to help the next person who must endure what you had to go through. Fright and all you did great, and you are an inspiration to the next good person who comes to NT. ginnie

ginnie: Thank you for your encouraging words and great advice!

Wow. Thank you all for your responses. JR thank you so much. It is nice to hear from someone who has the same Dr. as I do. Your response has really put me at ease.

Jess

I'm glad I could be helpful. I know how anxiety-provoking it is heading into surgery. I felt that for at least a couple of months beforehand, and of course it got worse the closer I got to the surgery date. I really started second-guessing myself about whether I should have the surgery, but I realized it was just because of fear that I was thinking that way and nothing logical.
At times during my recovery, I was scared I would never get my strength back, but I have really started feeling much more like myself. I just wasn't quite prepared for how much it takes out of you going through a surgery that major. You do get better, though!
I really hope things go smoothly for you. Take care!

surgery is Tuesday for m
 

Surgery is scheduled for August 14. Two days away. Very nervous. Dr Thompson said I will be in hospital until at least Saturday then hotel for 3-4 nights. Anything to know would be helpful.

Hang in there! I know these last few days before surgery are really rough. It kind of helped me to tell myself that all I had to do is show up and the experts would do the rest. They will take good care of you. It really was good for me to know that I was going to a surgeon who specializes in TOS. I knew I was making a good decision, so I just had to go with it.

We stayed at the Parkway Hotel which is attached to the hospital. You can call them, and if they have rooms available, you can get a special rate for people who are there for medical procedures, etc. It worked out really well for us because it was so easy to get back and forth to the hospital. Plus I didn't feel weird being in a wheelchair, etc., since everyone was (vs. at a regular hotel). It would have been very challenging for me to ride in a car during those early days after I was discharged, so just having my mom wheel me back to the hotel was ideal.

Please let me know if you have any other questions! Take care!

I'm going in the 16th. Maybe we will be neighbors! I'm staying at the parkway after surgery. I'm really nervous too.

Hi Nazzie
 

We are all here to support you while you face your surgery. I found NT for the very same reason. Was freaking before surgery. It is going to be OK. You have selected a great physician, and many here have had such good results.
while at hotel those first days, have those wash cloths adult size. They keep you clean and fresh when you don't want to get in the shower. Shampoo's that are waterless and towel dry work great. I had cervical problems and slept on an elevated wedge. Find a comfortable way to lay down and it will help you. Maybe try this. Sleep as much as you can and rest during your recovery. I was a bit frightened of the pain afterwards for my own surgery, but the doctor got on top of it and gave me more help for those first days. I wish you all the best. Hope to hear from you when you get home and feel better. I know you are nervous. It is nerve wracking, and I do understand your feelings. I came here right up until the time I left for the hospital, and in tears a few times too. It will be OK. We are all hoping for you, for the best possible outcome so you can go about your life. ginnie:hug:

We are going to be staying at the comfort Inn right down the street. A little cheaper. I only live about 45 min away but he insisted I stay closer. Good luck Jess.:)

Good Luck Jess-it sounds like you are in good hands!

Good luck Nazzie and Jlorainne.
Hope your surgery is a success. :wink:

Hope all goes great and that you both are feeling better soon.