Surgery for Thoracic Outlet Syndrome
 

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!!

Welcome coffelover,
I placed a copy of your original post in it's own thread here so we could say hello.

coffeelover
 

Great play by play of your surgery journey. You got diagnosed faaast. Like to hear that. Isnt the post surgery pain horrific?

How are you doing now?

Love NT, so many here been my ANGELS. Many grew wings and flew the coop.

Welcome to NT

Thanks for sharing your journey. In many ways we all benefit from NT from each post here. I'm sure you'll find a lot of helpful information.

I hope you find some peace in your days.

See ya around the board...

I thought i needed to update my post and im not sure how the site works or if im doing this correctly. I am now 13 post surgery and at 8 weeks post surgery check up it was obvious my surgery had failed to work. I was back to the same pain as before but of course this was with the added pain from the surgery site. My hand is still discolouring during a day and the throobbing costant heavy pain is still there along side the stabbing and pins and needles type nerve pain. All in all it's rubbish for me right now....... All that pain, and it was VERY painful has all been for nothing.
I have been back through the MRI scannner again a few days ago (iv lost count how many of them i have had!) and i go back for other scans and tests at the end of June. After which i see my surgeon again. At the moment it is looking like i will be having the same op again but this time taking the second rib out. My surgeon is the only guy i know of anywhere around that knows and works with TOS patients and he has said he has only ever known this happen to one other patient, where the first rib removal wasnt enough and the had to perform the surgery again but take out the second rib. I just hope and pray that if this is the case i dont become the first person that neither op has worked for!!!

I am not great the surgery hasnt worked. I have tried to update my post with this news but im not sure i have done it correctly!!! This TOS is a nightmare condition!! Thanks for posting. :(

Dear coffelover...

I am sorry for all of your troubles...I had TOS also..I had my frist rib on both sides removed, due to a car accident.. 6 weeks between surgeries...it is not an easy surgery nor recovery!! What is your status now???

Kathy

:eek::eek: Umm, I would want them to be very sure it would be a positive thing to do before agreeing to another surgery - do they have access to any special 3D MRI /MRA??? {or they may even have 4D}

I would try to get one of those special MRIs supposedly they can show much more detail.

Did they mention scar tissue?
Some bodies seem to produce an excess of it and it will cause extra problems too.
But you shouldn't have that yet but it comes into play later, or perhaps you had some before the surgery, and that was why he said it was worse that they thought inside?

I've been on the TOS forums since 04 and I have never heard of anyone getting the second rib out also.

If anyone has heard of that please post it here with what you recall about it.

This isn't the time for a surgeon to be guessing at what might work.

You mentioned some of the chest muscle removed - was that the pec minor? armpit area?
pec minor syndrome - also perhaps?

I don't know if you have had time to scan the sticky threads up above?
look for threads near the top of the list with the green arrow icons.
we have saved polls, websites, videos, pub med articles...

Thinking of you

4D MRI in UK-
http://www.google.com/search?hl=en&c...=&oq=&gs_rfai=
3D MRI in UK -
http://www.google.com/search?hl=en&c...=&oq=&gs_rfai=

3D & 4D MRI info-
http://www.rsirescue.com/articles/collins.htm
http://tosinfo.com/

[Pectoralis minor surgery: In 2005 we became acquainted with the pectoralis minor syndrome, a condition that was described 60 years ago but which most of us had ignored (described above under "cause" and "diagnosis"). Each patient we now see for TOS is also examined for this. We have been surprised to find that over 75% of the people who have TOS also have complaints and positive physical exam findings of pectoralis minor syndrome. If following a pectoralis minor muscle block there is significant improvement within a few minutes, we have been performing a very simple operation called pectoralis minor tenotomy. This operation is performed as an outpatient under local anesthesia, but with an anesthesiologist in attendance so that patients are asleep for a short time but are awake within a few minutes of the end of the operation. The procedure carries almost no risk of injury.

Between 2005 and 2007, 300 operations were performed that included the pectoralis minor muscle. Half of these were pectoralis minor operations alone; the other half combined pectoralis minor release with thoracic outlet operations.

Deciding who has thoracic outlet syndrome and who has pectoralis minor syndrome is determined by history, physical exam, and muscle blocks. Patients who are diagnosed with pectoralis minor syndrome alone are offered pectoralis minor release as the only operation. Those who are diagnosed with both conditions, and who note significant improvement following pectoralis minor block, are offered the simple operation of pectoralis minor tenotomy with the understanding that if they do not experience good relief of their symptoms they can return for the bigger operation of scalenectomy or first rib resection. To date, 14 of the first 48 patients with both TOS and pectoralis minor syndrome woe received pectoralis minor tenotomies alone have returned and received scalenectomies, some with first rib resection but most without rib resection.

In another group of patients, who have predominately TOS, but also have pectoralis minor syndrome, surgery has consisted of both TOS and pectoralis minor operations. By combining the two operations under the same anesthetic it has been possible to improve the success rate for surgery. ]
http://www.ecentral.com/members/rsanders/

Hi There,

Just another update on my TOS. I am currently two weeks post op (again). On 10th September i had my 2nd rib removed. This was following my first surgery (in March) of my 1st rib remoal not working.

It is only the secong case my surgeon has known where the first op hasnt worked for the patient. My symptoms had not improved at all and on my post surgery follow up appointment it was decided by my surgeon that i needed to have my second rib removed.

There isnt much point me putting down my diary up till now because to be honest it is more or less the same as my first surgery.

I just hope and pray that this now solves my condition and i can finally live a normal life again and be free from this syndrome.

I'm trying to smile through the pain now as i write this but wanted to make sure my post was up to date just incase there is another rare person out there whom also has had the first surgery fail and needed the 2nd rib to be removed too.

You have to keep smiling dont you :)

Coffee Lover,

I'm very sorry to hear that your first surgery did not work. I had surgery almost 6 years ago and it didn't work for me either. I'm worse than before surgery.

I wish you the best on your latest surgery. I hope your doctors got it right this time.

I have little faith that doctors really understand what's going on with us. In no other situation could you fail 30-50% of the time and still be in business. I really don't understand how doctors are permitted to do these surgeries when there are such varied outcomes.

I hope you are one of the lucky ones.

Kelly