Thank you so much for bumping up this thread. Rachael, do you have a date for your surgery yet? I still haven't heard anything about mine. This info is really helpful, and allows me to plan better for the eventual day that I will go through this. I just know this is going to work, and while I may not emerge at the end pain free, I will at the very least be able to return to a lot of the things I have been able to give up. Hopefully I will be able to buy another motorcycle and ride with my family again. I can hardly wait.
Tracy

Ohhh! I meant to ad my experience to the list but didn't get to it in time!!
Supose it would help now??? Oh well , I'll add my experience just in case it helps others..


1.How was it right after surgery? Great, I was pain free on that side Day of? still good, medicated The first couple days? some difficulty breathing, hoarse voice, weak, but up and about as per Dr.'s orders

2.What was it was like when you left the hospital? A very painful ride home!! Take a pillow with you to hold against you for the ride!!!!

3.What was it like getting around? Slow and easy

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing? I did fine, showered the 1st day without help,etc.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone? Incision was above the collar bone, it was o.k. drain was in chest and had to be drained daily, needed help with that, bandage changed daily, easy stuff.

6.How did you manage pain? Did you need ice a lot? Great pain meds!!! Ice and heat.

7.What was it like the first couple of days? difficulty breathing and constipation were the worst, also had to sleep in a recliner because laying falt on my back made breathing difficult.

8.The first week? Same, began massaging neck and surgical site muscles, had drain taken out

9.The second week? still very weak, massaging muscles in neck and at incision

10.a month post op? still very tender and sore, very weak.

11.two months post op? etc.? same

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation? No, under DR.'s orders did none of the above, had to have help.

13.How active were you, ie. walking around? walked to get back strength, that was about it, that and p.t.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions? lots of ice packs, so one is always cold, squisshy pillows, Edglow p.t., hot baths, loose fitting clothes, no pullovers.

Thanks so much for any input. I really appreciate it.
Nidia Good Luck and Speed healing !!
G~
--

hi. i posted this in the get to know you section, but wanted to check in...

2 weeks post-op...Oct 4th.

I'm struggling because of a lot of swelling and still a LOT of pain. I was under retraction longer than expected because Dr. Avery said it was really quite a mess in there. My numbers from mri/mra results that the narrowing was/is oops! 5 mm on right which I had done and 2 mm on left.

I have limited range & control of right arm because of swelling of nerves/ build up of fluid affecting biceps and deltoids. I can move my hand and wrist but that's about it for now. I had full range with my arm day of surgery but overnight the nerves swelled up and I've had a little day to day improvement since. My diaphragm was weak too...failed the sniff test to the extent that it was just very weak...thank goodness not more. i've felt out of breath too, but I've made huge progress strengthening by using the incentive spirometer. I'm very tired and wear out easily but am doing stretching exercises every day. Just going to be very slow!!

I had my first out patient PT appt today(yesterday) which went well. Before surgery, I moved to SLC to have support from family and it's been reassuring to have chosen to do the surgery in SF even though I'm doing recovery/pt in SLC. The therapist said the last surgical case she had was 15 years ago.

She and Dr. Avery have talked at length and I feel very confident with her. She seems very on the ball as far as the right protocols for healing from this surgery and nerve desensitivation. The facility is state of the art at the Univ. of Utah...just very few surgeries are actually performed here.

I have been so impressed with Dr. Avery. I met him a year ago and then again in March. I had to see a neurologist/ Dr. Ansel from w/c and get his go ahead before they would authorize surgery. Dr. Avery was very thorough before and after in his care and responds quickly. His assistant, Ann is really great too. He obviously cares about his patients...and not just those he does surgery on.
i'll give more in depth details/answer my own questions shortly!
thanks for the well wishes...doing my best to heal
Nidia



Injured July,2002: 2 door size boxes/ 120 lbs. fell against my back. Concentra, then Dr. Weddington for Thoracic/lumbar/cervical strain: PTand acupuncture & went back to "modified" work after a few weeks. R arm began to hurt 1/03, complained to work& Dr without any response, continued getting worse, switched Dr's, Dr. Swartz, MRI 4/03:tendonitis in R shoulder/rotator cuff, bulge in neck. Dr only offers meds & off work May/03. Changed Dr.'s again/Dr. Handleman: osteopathic manipulations &prolo injections,acupuncture & PT. Feeling best since injury until Dr. got a crush on me/had to seek new Dr., wc took 4 mos to authorize, got increasingly worse. Saw Dr. McClure had MRI/MRA Nov/04, d/x Bilateral vascular and neurogenic TOS. Cervical epidural Nov/04. Dr. Hines for pain mgmt. Dr. Rosales for cognitive therapy/psych. S/x on R shoulder 1/05 w/Dr. Greenwald. Cervical epidural 3/05. 12/05. Moved to SLC. Dr. Giovanniello/SLC treating Dr, cervical epidur. 1/06 & 3/06. Pool therapy/PT for TOS. Dr. Shulimson for cognitive therapy/psych. Cervical Facet block injections 8/06, authorized for rib resection/scalenectomy 10/4/06. On Morphine, neurontin, Baclofen, Cymbalta, Relafen, Prevacid, Trazodone, Lidoderm Patches, Imitrex for muscle and nerve pain.
Now: dilaudid, neurontin, ms contin, fentanyl, baclofen, relafen, prevacid, ambien. ativan, cymbalta, lidoderm patches, imitrex, and reglan

Thanks for the update nidia, it sounds like you have every bit of care and assistance you need to get through this! Sending healing prayers your way!!! I hope the pain and swelling begins to ease very soon. I also did surgery in one city and PT in another. It's so important that your PT and GP all coordinate your care with the surgeon.

Go very very slow for you now!
Anne

How are you now since you've had your surgery? I also use Dr. Avery and I will say he is the best ! I have had a wonderful recovery, both sides done one 5/05 then the other side 5/06. If I could just get therapy out of W.C. I could be even better.

I should of read your update first..... Yes Dr. Avery has wonderful bed side manners. Evryone likes him so you get the best from all the nurses and other doctors. I stayed 5 days in the hospital each time. I had the left side done 5/05 then the right 5/06. I have recovered real good, I'm also having trouble with the breathing. Use the VOLDYNE it really helps. I'm riding my bicycle now so that it helping with the lung power. You can ask Dr. Avery about me I ahve told him and Ann about this web site. I'm his star patient David K.

I'm having surgery with Dr. Avery in Jan. 07. Due to the fact I have 4 children and my husband sometimes works 6 days a week, I'm trying to get my life in order before I have another surgery.....I had a neck fusion
C4-5/ C5-6 in Oct 2005.

I wrote in an earlier post about the size of the norrowing......mine is 6mm on the right and 7mm on the left. It's nice to hear someone else who's problems are so similar.... My condition seems to be getting worse. But I have to wait and get through the holidays....It's so nice to hear from others who have had surgery with Dr. Avery. Please keep me posted...Thanks

Ann
Pinole, CA

bumping also

Hi There, Like many people i turned to the internet to read about my new diagnosis. I had just been told i had Thoracic Outlet Syndrome. My symptoms were textbook case and started on 4th February 2009. It took months and numerous hospital and doctor referals before i was finally diagnosed with the condition.

I had numerous x rays, MRI Scans, CT Scans (some with dye injected),echo grams, ultrasounds..... the list was endless. I felt like every available test i had. On top of this were of course blood and urine tests galore!!!!

I was then told mid October 2009 that i needed a major surgery procedure. Terrified is putting it lightly. I was otherwise healthy (asthma but well controlled now with no medication) and had never had surgery except for two C Sections for my children. The surgery would consist of removing my first rib and part of the muscle about the right breast (sorry, can't remember its proper name). I was scared stiff and turned to the internet. This site was wonderful for me. To read peoples experiences of the op made me feel slightly more at ease. Knowing what to expect for me works. It's not for everyone but i had to know ALL i could. I even watched a video on You Tube of the operation being done!!

As it was this surgeon backed out just weeks before my op saying he didnt feel qualified enough to do it. I was then referred to the surgeon who infact did my surgery and was wonderful, Mr Paul Wilson at Royal Lancaster Infirmary, Lancaster, England. I had the surgery on 12th March 2010, 13 months after the pain first started. I had a surgeon from Blackpool, England come over to watch and learn from the surgery as it is very rare and finding a surgeon who knows how to do the procedure was hard. There was quite a crowd in theatre watching all that went on.

I wanted to write my thanks to the people on this site for helping me, allowing me to read their stories was much needed. I now wanted to do the same, post my experience in the hope i too can help someone by sharing my experience.

I am now nearly 5 weeks post op.

Starting with the surgery. I had 3/4 of my first rib removed on the right side, this was my affected side. I also had half of the muscle taken away as explained earlier. I also ended up having to have my nerve cut that runs across my right side of chest and down my right arm. This was to keep permanent nerve damage to a minimum. The nerve had been badly compressed and stretched during my early months pre surgery. Once they opened me up they found things to be a lot worse than they thought and the surgeon said i would of been in a lot of pain just from them trying to get into the area. This explained why i felt like i had been hit by a ten ton truck. Surgery took 2hrs (double the expected. My husband had been told around 1 hr). I was in recovery for 4 hours. I walked into theatre at 8.45am and only got to the ward 3.30pm. I had a PCA with morphine in up for 5 days. After it got took down i went on to oral morphine as well as other meds, paracetamol etc. My hospital stay again was longer than i had been told. I originally was due to be between 1 and 4 days. Due to the extreme procedure done this infact went to 9 days in hospital. I came home on Paracetamol, Codeine Phosphate,Diclofenac Sodium,Amitriptyline. Other meds for constipation and bowels.

Driving home from hospital was a nightmare, every bump in the road was agony. Walking to the toilet and back to the settee was enough for the first week and into the second week. By the third week i had a little walk round the road i live on. Standing up is more painful, try to support your arm the best you can. You do tire very easily. Just take it easy and remember to listen to your body. I very stupidly tried to cut down my pills and got very upset, crying that i couldn't cope anymore. 3 weeks after this surgery is far to early to bthinking of cutting back on medications, i learnt that the hard way.

My husband had a month of work to look after me and the children. This week he has gone back to work and im doing ok. I walk around the house no problems now, car journeys are still a little painful but a lot better. I have made meals on the last 2 nights with some help but this tires me out. I do manage washing but not pegging out or ironing. Light housework, ie; dusting wiping down i can do no problem. It's little doses then nothing gets too much. I am however no where near ready for driving myself. I am hoping another couple of weeks.

I forgot to say from day one i showered myself, more down to my determination... very difficult and certainly not a shower to the degree you would normally have but you do and can get by doing that yourself. My surgery was done via under the arm. My scar is around 10cm long (not that i have measured it, it's a guess!!)

I hope i havn't gone on too much and this does help. If i have missed anything you want to know when reading this, im sorry. I will check back on here in a few more weeks when there may be more to write. I go back to my surgeon exactly 8 weeks to the day of surgery.

I have had odd days of the same pre op pain and discolouration but my surgeon did say this may happen so i am not worrying about that yet!!


I copied your post here to a new thread of your own - so we can say hello, you can find it on this page - on the main TOS page thread list -
http://neurotalk.psychcentral.com/forum24.html

I have been under the impression that a scalenectomy without 1st rib removal is the operation of choice by the leading thoracic outlet surgeons these days, anyone care to share their opinion of this position and any information that is relative to the two procedures.

thanks rich