Thoracic Surgery - Seven Years On



Seems a long time ago since Diagnosis, Wheelchair, Walking and 50!

This picture shows how the disc loooked embedded in the spinal cord almost to the point of severing it. The picture of Mark and I propped against a hay bale (my crutches well hidden!) was an image I kept with me in hospital and gave me the strength and determination to prove the surgeons wrong. The wheelchair was a self portrait project I was doing back in 2011. The last two pictures are of us celebrating our 50th birthday's earlier this year!

Well, I can hardly believe I am sat here seven years down the line. 
On the 5th September 2011 the life changing surgery on my thoracic spine gave me back my legs.



The time has flown and my progression has grown with my determination to lead a normal life.

I thought I would add to the blog this year, not only because I am still going strong, but I reached the milestone birthday of 50 and feel pretty good about it!  I look back at the whirlwind of the past 7 years and what has changed: I can hardly believe I went from the diagnosis to where I am now and looking back, it sometimes seems hard to imagine that I actually went through it.

Through this blog and the Facebook page which I help run with other "Thoracic Surgery" survivors, I know that our stories help others who are faced with the uncertainty we faced.   Over the years it has become more apparent that although this surgery is only done in extreme cases, the realisation is that there are so many people out there who are facing these problems, and not knowing who or where they can go to speak with those who have been through it and come out the other end.  I have to give credit to the NHS who were my saviours.  Reading the desperate  messages we get on the Facebook page, it seems that the US are very cautious and finding a surgeon who will deal with the thoracic spine is very difficult.  We have a lot to be thankful for in the UK.

Of course, I have made friends and have bonds with people who have been through the same, the furthest is in America and the closest is almost the next County!

Dave and I had identical surgeries, we had ribs removed and spine pegged with the rib, lungs collapsed etc. so I like seeing his updates.  He is two years post-surgery now and very active.  Not without pain and some niggles but generally back to "normal". We are both pretty active in responding to the questions that come up on the Facebook page because if our experiences can help someone, then some good has come out of it all!
You can read his story here:
http://thoracicsurgery-backtolife.blogspot.com/2018/09/thoracic-surgery-daves-story.html


Dave, proving nothing will keep him down!

So what has changed for me personally in the seven years since the surgery?

Mobility wise I try to be as active as I can.  I realised quite early on that having a lazy day was detrimental to my health.  It made me ache, muscles seized up and I generally felt rubbish. 

I started with Pilates to help build inner core muscles and really enjoyed it, I liked being able to see how far I could push myself with flexibility!  I also make sure I walk a couple of miles a day. 

My best achievement was exceeding 10 miles in one day - I was pretty shattered at the end of it but I loved the buzz looking at the Fitbit, nailing it and mentally proving them wrong when they said I would always need a stick and potentially have problems.  I have succeeded in doing this on many occasions now, not sure where I should aim my next target though as 10 miles is quite something!

For the last few years we have spent Christmas in Austria getting away from the eating fest that seems to be the norm with festivities and time off work!  I have sledged down a mountainside, climbed up the Zwölferhorn twice now (albeit with the assistance of a cable car) - reaching the top of the mountain on a winter's day at -11 degrees is quite something, the air is fresh, the views are spectacular and you feel invincible. 
This year my aim is to visit the Five Fingers in Hallstadt which is a bit of a hike in snow but the view will be worth it.

Isn't this view worth the effort!

Me aged 49¾ - who says you have to be a grown up!

I have also just completed the climb of the 02 building in London - another achievement ticked off the list and a bit of fun!

Health wise, I have become more aware of changes, pain and problems and perhaps being a little cautious, it lead to me to having a full spinal MRI at Lincoln County Hospital in 2016; 55 minutes in the scanner doesn't get any better no matter how many times you do it!  I got chatting to the radiographer and I asked him how it looked, of course, they aren’t supposed to tell you things but I advised him I knew there were problems with the C5-6 and of course, the "T" spine had been worked on; it turns out he actually knew me! (Way back in the 1990's early 2000's I ran a Fish & Chip shop with my ex-husband and he was a regular at the shop living across the road from me, now I could understand if it was Lincoln but I was in Scarborough at the time - small world!)  He did say that there were bulging discs at L4/5 & S1 and in his experience, he had seen people come in for scans in worse condition than me with lesser spinal problems.  Once I had spoken with my GP, it was agreeable that should things change, I would then go back but for the time being I would keep monitoring it and be aware of changes. 
I think it is easy to turn to panic mode every time we have a scan or X-Ray but if we are all a little more in tune with what our body is telling us, I feel that is a better indication of our health.My pain levels vary from day to day: 
With regard to back pain, the Thoracic gives me no trouble and I like to believe that there will be no more herniation’s at that level.  My lower back from time to time will let me know when I have overdone it! 

The pain experienced on a day to day basis is the nerve pain.  The right hand side of my body was the most affected area with the disc causing the spinal cord injury prior to removal.  I have no sensation to heat which includes hot water, and can burn myself, cut myself, bump and bruise all without knowing!  It's quite a strange thing when I am walking about with no shoes (and to anyone who knows me this is the norm) I have to be a little more careful.  This altered sensation not only affects my leg, it reaches waist level and across the torso.  It also means that internally, there is a constant burning sensation.  I feel like it is on fire and when tired, the leg has painful spasms which are controlled by the use of amitriptyline.  Initially I used Pregabalin but this did not help with weight and I struggled, however the pain relief was immense.  I took the decision to change medication and although I have the pain, it is at a controlled level making the weight is easier to manage.  Sadly a catch 22.

The left hand side (and the lazy leg that lost all use) has full sensation but has hypersensitivity.  It can spasm at any time and is sensitive to touch. 

I never managed to regain the ability to run as the communication from the brain to the legs simply doesnt work.  I am not too bothered by this though as I had never been an athlete!
When my legs get tired, the left leg tends to drag and I notice that I compensate by swinging it out from the hips.  Of course, this has a detrimental affect on the lower spine and I have a noticeable gait on those days which causes a new level of issues.

That said, I fell life is full of challenges and although I have had a few, there are people who face far more in their lifetime and I think my life is pretty good as it is and I have accepted the new "normal" me!  Besides, it is how we handle them which defines who we are.

For anyone interested, this is the link to my
photography https://www.flickr.com/people/cazzie21368/ which keeps me active and determined to lead a full and active life.