TOS

Thoracic Outlet Syndrome, sounds fancy eh! Yeah it’s got a pretty high ranking in the list of most annoying and degenerative syndromes, if there was one. 

It has taken 4 years to get to this point, 4 years to get diagnosed.

I’ll cut a long story short.......3 surgeries after a nasty fall onto my shoulder I was left with chronic pain and my right arm and neck (yeah my drawing arm). 

I had complained over the years of numbness, hypersensitivity and what I can only describe as sloshing in my arm, for those that suffer with the same you will know what I mean when I say, some days I would be happier to sit competely still for the whole day and not cause any aggravation because just the weight of my arm alone causes an indescribable pain, remember when you where a kid and tied an elastic band around your finger, it would feel like it was dying after a few seconds, the sharp pain, imagine that in your neck radiating down into your shoulder, into your elbow then the palm of your hand to the tips of your fingers (that’s the closest description I can give). 

so...what is it? Here comes my own non-medical description, the space between your first rib and your collar bone is called the Thoracic Outlet, through that space travels your nerves, arteries and veins (there’s are a few different types of TOS but seems as I’m not a medical expert I’m gonna stick what I know) in my case these tissues are trapped and compressed, squashed. 

My last physio discovered I had this condition, actually she was convinced I had it from the first day I saw her.  I had a lot of damage to my shoulder that stopped me from being able to lift my arm more than 35 degrees, this made it difficult to diagnose TOS, so my amazing surgeon fixed my shoulder first, a slap repair and some other fixes inside, loads of physio and bingo. 

I had scans and X-rays to find my TOS but nothing, a year went by and my arm wasn’t getting any stronger but the pain more so, my physio was worth her wait in gold, she pushed and pushed to get the help I needed and the right diagnoses, how did it get diagnosed I the end? No radial pulse, when I lift my arm my pulse disappears completely (of course, I couldn’t lift my arm before).

I’ve been to see a specialist (super, amazing expert) who is going to operate.  

I have been on the surgery waiting list for almost six months and I was expecting to be on it a little longer but I’ve had issues with my heart, stops and starts, a few little black outs and Ice pick head aches so I called the hospital last week and now I’m on my way, had all my pre ops and no time to think, my Surgeon is going to take out my first rib and my scalene muscle to make some space, eeeek! 

As an artist it’s been a tough 4 years, my work has gotten slower and I have had to cut back in commissions, as much as being in grossed in a drawing takes my mind off the pain it also puts me out of action for the following day or more, I have already given up one my floristry career after 20 plus years and I do not want to give up another.   As a Mum, TOS has been tough on my daughter and my family, I have kept my circle small through this time but thankfully supportive, it’s been tough letting people down and not being available but I can finally see an end.  I am positive and excited to finally get this over and done with, my work will be quicker, more productive and hopefully better and I can start living again, there is an possibility I will always have nerve pain but at least I will be out of the woods, yes TOS can reoccur but that may never happen. 

I needed to blog about this, some of my symptoms I have not read in other posts and maybe this will give someone else a little reassurance and if in the same vein (excuse the pun) no matter what your body is telling you, you can’t do more often than not you can tell it to sod off! 

we are all aware of people worse off than us and I have so much admiration for everyone who can keep going and push through their pain and disability or both. 

Never stop, grit your teeth and get it done, own it!  

Claire