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Joined: May 2017
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Hi - first time posting, no idea if I'm doing it right. I've had AS since my early 20's & I'm now 38. Been stuck at home for the last 7 years with a fused spine and chin on chest deformity. I've isolated myself from everyone and it's destroyed my life....2 years ago I weighed 26st and was really unfit. I started training and found out about surgery. I've been on a quest for the last 2 years to reclaim my life. I got funding to have surgery at the Queens medical centre in Nottingham, England (I live in a different part of the country)....I've now built up to training twice a day using an exercise bike and cast iron weights. Even with my fused spine, posture, mobility issues and pain I have been able to lift weights and build my muscles (I once loved lifting and the muscle memory helped) my muscles have responded, I've become far more flexible (2 years ago I could barely bend forward, now I can touch my toes)..my resting HR is down to around 48bpm and I feel strong and fit. I'm down down to 17st with around 7 weeks to go before surgery. So I'd like to hit the 16st mark and have lost around 10st in the last 2 years. In 5 weeks I go for my final preop and then a couple weeks later I'm having surgery to lift my head up....with a possible 2nd surgery 3 months later on my lower back. To be honest I'm kinda hoping they do both surgeries so I can get as straight as possible.......I've come a long way in the last 2 years, because before then I'd really given up on life and lost hope....I'm on a mission to break free from the prison of my surrounding and the prison of mind, body and soul......I've been a surpressed person, not feeling like myself, existing in a perpetual cycle of depression.....i had such low self esteem and embarrassment I isolated myself. I only see my 3 kids and wife.....but because of me just existing in my room, everyday the same thing, same clothes, same depression....its pushed my relationship with my wife to complete collapse. She has agreed to give me time and see what I'm like after the surgery and once the halo is off. I don't know what will happen but I'm determined to become myself again and use all the negative things I've experienced to make me an even better person....I can feel the real me inside and the training and fitness has begun my transformation.....I know the risks of the surgery but I'm still excited to have it done, I'm ready to continue my recovery and if all goes well.....2018 you better watch out, coz I'm coming for ya!!!!!

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I had the sort of surgery you mention way back in 1983. There are various ways to do such surgery. In my case it was known as a wedge osteotomy to the lower spine. My neck was unaffected by the A.S. at that time. A wedge of bone was cut out of the spine and the spine was then straightened out and held in place with titanium rods. As you can imagine things are done in a much better way these days. The surgery was a success and not only did it straighten out my spine but it also lead to much less pain. There was some snags but eventually all worked out very well. I would recommend such surgery to any A.S. sufferer that needs it. As with all surgery there are obviously risks but I found it all well worth the risks as the surgery was life changing. Let us know how you get on. In my case the surgery was done at the Orthopedic Hospital Oswestry, UK

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Thanks for the response......I totally understand the risks and of course I'm concerned, not really about the ultimate risk but anything else other than death. However I also can't continue existing like this everyday and for me the risk is worth the reward. I've been stuck at home for 7 years and these last few weeks leading up to the surgery have been the most frustrating....I've definitely reach the peak of what I can take and I just want to get on with it.....I'm going to use the remaining 6 or so weeks to continue training and dieting and prepare myself for the battle.

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Hi AJ,

I wish you the very best with your surgery and hope it will be a wonderful success and help to restore your posture and take down the pain. I am sorry to hear of the struggles you've had because of this rotten AS... and inspired to hear how you are battling back despite how tough it's been.

I have a dear friend on here that had a similar spinal surgery with an amazing outcome. He is still doing well many years later.

Please come back and post again to let us know how it goes for you!
Take very good care!
mig

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I think Mig may be referring to me! She usually claims to be a good friend just before trying to borrow money, but she is ok really!!

Oddly my initials are AJ, odder still I live in Nottingham less than 2 miles from the Queens, more odd yet it is where I was given a second chance at life. What isn't odd at all is that you are going to the best of all places for this surgery, ward D8 West Block I guess is where you will be.

Who is doing the surgery?

I had a 12 hour procedure and ended up with 2 rods and 14 screws and remarkably from a stooped walking stick of 5 feet 9, became a 6 feet 2 straighter than for many years happy human.

Surgery is a bit brutal recovery painful but so well worth it. Took me 2 months to be at ease with myself and a year before I worked. I even wrote a book about it in which Mig above features some of her art work.

I won't tell you that it is called 'Going Straight' and is available on Amazon. Neither will I mention that if anybody buys one I get 5p commission of which Mig insists she commands half. Anyway we wont mention the book or Amazon!!!

Good luck, bear with it keep us informed, I might even visit you..........wow now that is a threat


Yay


AJ G

Last edited by ineptwill; 06/21/17 09:44 AM.
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Hi Mig,
Thanks for your response......I'm now 11 days away from surgery and I feeling great. Ready for the mission and battle ahead and really excited about the future....I'll keep you posted.

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Hey AJ,

Weird about the initials....It would be even weirder of your name was Anthony John.

Anyway, cheers for your response......I'm now 11 days away from surgery with my final preop this coming Thursday 6th July 2017. If all goes well with that, the surgery will be confirmed for the following Thursday 13th July.

I'm feeling really good......over the last 4 weeks I've completely changed from the person I've been for the last 7 years and I'm feeling like the old me again. I've begun my transformation and it feels awesome....I'm convinced this has all happened for a reason and it's going to make me a better person.

When I got the funding I was supposed to be having dr Hossein Mehdian as my surgeon but he retired. Now I have a very impressive surgeon named nasir quarishi......I'll be having a neck osteotomy which will hopefully correct my chin on chest deformity.....then a possible lower back surgery 3 months later.

I'm super excited about the adventure to come, it might sound crazy but it's true....I've been stuck at home for over 7 years so the prospect of doing something different is awesome, I've got no fear and I believe everything will be fine. As you said, I'm in the best place for this surgery and that's why I pushed so hard to get the funding. I live in Bradford and originally I was referred to the spinal team in Leeds. However they told me I had to wait over 2 years for the first surgery and they wanted to do 2.....so I wouldn't be done until 2020. That didn't fly with me and so I emailed Dr Mehdian and he phoned me and said I shouldn't let them operate on me because the surgery is very specialised and only queens medical does AS surgery in the UK. That's when I went into overdrive and was able to secure funding within 3 weeks and now 7 months later I'm about to have my surgery.

I've been training my [*bleep*] off and I'm ready to rock and roll.....I just want a life again and I'm prepared for the battle ahead.

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wow, what a super upbeat response, that will serve you well. Mehidin was top man for some years. My surgery took place before his arrival, I was lucky to get the man who designed my particular procedure and something of a spinal legend, J K Webb.

Let me know when you are settled at queens, I would like to follow your progress If you don't mind?

Was in Bradford last year for a weekend with friends, a big hotel the name of which I can't remember. Had a fab curry at the very recommended place whose name I can't remember either.

Lovely day at...............errrr Salt....cripes can't remember that either but a fascinating place


Good luck Anthony John!!! I am Alan Joseph John but my brother is Anthony!! lol

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Hi AJ - Just doing a bit of catch-up with KA, and caught your post and those of Alan and Mig - stalwarts of KA ! (Oh, and don't take any notice of Alan, he is our resident clown...ducking !) Well done you, so upbeat. The very best for the upcoming surgery. Awesome.

I echo Mig : "Please come back and post again to let us know how it goes for you! Take very good care!"

Molly C - Keeping on, Keeping on - as we all do

Last edited by MollyC1i; 07/03/17 08:55 AM.

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Cheers for your response to my last message......to be honest I had completely given up on life 2 years ago. I thought I was never going to get back I shape, lift weights or exercise again. I was told by my spealise at the hospital that there was no surgeries that could lift my head up again. I was told that about a year after my head fused down and I spent the next 4 years gaining weight and just existing. I hid myself away in my room and ignored the world.....

It was only when I came across a before and after photo of a guy who looked like me and then was upright....that I realised that there was hope. I started changing my life and began a quest to reclaim my life.

I've learned what's important in life and how precious it is.....I've given myself a great Base of strength and fitness for me to improve on after the surgery....If I get what I want and the surgery works, I will make sure my second chance at life isn't wasted.

I'll keep you updated...

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