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  #1  
Old 03-14-2009, 10:49 PM
GaryD GaryD is offline
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Join Date: Feb 2009
Posts: 2
Default My first post - please be gentle!

Sorry, this is a long one!

Prior to my accident, I was a fit and healthy 32 year old. I had played Basketball for a number of clubs, and for England at junior and senior levels. I had stopped playing a few years earlier, but still ran and went to the gym to keep fit, and enjoyed the odd game of Basketball or Rugby. I am 6’7” and weight about 16 stones, but until 2003 I was pretty nimble and a bit of a health nut.

Them, in 2003 whilst on holiday, I slipped on a wet floor and landed with a marble step across my back. On my way down I thought “this is going to be bad” and fell with a thud, but to my surprise I got back up again and walked away. “That was lucky”, I thought, and went to do some jet skiing. The next morning I could not move. I was in a LOT of pain, but I had to get up and take a flight home and I was in agony.

Once back in the UK I was inspected by a GP (not a great one) who told me that nothing was broken, and prescribed Diclofenac Sodium. “It’ll heal up in a few weeks” he said…”just take the tablets”. I hoped I would heal and move on, but it didn’t happen fully. Over the next few years I lived with some stiffness and pain, and when it got worse I took some Diclofenac and it would subside. When using the drugs I had many days when I forgot I had a problem, and some days off the drugs were like this too.

6 months after my fall I went to see Mr Shackleford in Warrington to see if I could rid myself of thisproblem, and he ordered an MRI scan. He diagnosed DDD in my L5S1 disc (compared to the others it was dark, thinner and lacked structure), and he told me to come back when it got to the point where I needed surgery. As I was relatively mobile then, I went away.

Everyone told me that exercise wasn’t a great idea, running in particular, but it seemed to help me. In fact, the more I ran, the more relief I felt and for long periods I didn’t take any pain killers or anti-inflammatories, I just ran, and it worked. I guess this was the core strength building up, but I felt great!

So much so, that two years ago I decided to set myself a target – I was going to run a Marathon. I’d always wanted to do it, but had never tried. So I started training, and decided Berlin would be a good place to start.

The training went well in the main. I found it harder to run down hill, and suffered the odd bout of temporary weakness in my glutes/hamstring (but it usually passed in a couple of seconds) until I hit 16 miles one day, and my left knee gave way! I couldn’t run for months, and I missed Berlin. However, the charity I was running for (WellChild) was great, and offered me a place at London instead…the race I had always wanted to do!

I discovered that my knee problem was down to muscle imbalance (weight training on my legs cured it), and I started training again. To cut a long story short, I took it VERY easy in training by I completed London 2008 in 4.5 hours. I suffered hamstring cramps in the last 6 miles which really slowed me down, but I did it, and promised myself that I would come back and do it again next year, as I could run faster and had quite a lot left in the tank at the end.

During training and just after the marathon I still took the anti-inflammatories, but not that often. I felt OK, and my quality of life was pretty good. I thought I would live with my back problem as it wasn’t an issue. In fact, I just thought I’d tolerate this for ever.

In August last year I converted the loft of my garage to a storage area. It probably wasn’t a bright thing to do – I had to lift a lot of timber and crawl into some small spaces – and my back pain came back with a vengeance! I often had trouble getting up, and getting out of bed took minutes. So I started taking a lot of anti-inflammatories.

During this time I was out for a run and after 3 miles, whilst running up hill, I started to feel a new pain across my lower back (it was like someone had hit me with a baseball bat). It was across my back just above my glutes, and I’d never had anything like this before when running. I braved it out, but on the next run it was still there. I took some time off, but I still couldn’t run without pain, so I took a longer time off. But it didn’t heal. I could just about run 4k without “pain”, but beyond this I knew that discomfort would lead to pain quite quickly.

The pain also started to get more and more frequent, and in some cases the Diclofenac Sodium didn’t even shift it – this was the first time this had happened. So I went to see my GP earlier this year, and I had to take a couple of weeks off work and take some strong pain killers. This was a temporary relief, but it didn’t settle. I also became “dependent” upon the Diclofenac to get past the pain, which was new. I knew this was no long term cure, though.

So I started Pilates and got some relief, but again it was no “cure”. Things were by now getting pretty bad – I had trouble getting up and down, and turning in bed was painful – and I was frustrated because I couldn’t exercise. I also could no longer bend all the way down to put on shoes and socks, so had to develop coping strategies for this. This really was a “step change” in the problem, and I wondered if I’d prolapsed the disc, or another one, so I retuned to Mr Shackleford. He asked for another MRI in January.

When this came back all it showed was that the L5S1 disc had degenerated further, to the extent that it was now very thin and almost non existent in one area, and he reiterated the challenge – “tell me when you want to do the surgery” (which would be an Activ L prosthetic disc at L5S1). I was disappointed that there was nothing obvious and/or new to cure, or that it wasn’t going to be easy to solve, especially as this felt different.

Now, here’s my problem. I can tolerate pain OK, I know it’s getting worse and it’s really limiting what I can do, but most days I can “tough it out”. Travelling with work (mainly on planes and taxis) is a bit of a pain, and so is sitting at my PC, but otherwise I can walk without sticks, sit and stand, and sleep OK. I walk a bit funny and can’t run anymore, and putting on shoes and socks can be difficult and occasionally painful, but I can ride a bike and use the cross-trainer OK. I am in constant pain, but it’s mostly low-grade with the odd spasm that makes me freeze or makes my legs give way. No sciatica, but the occasional bit of numbness or pins and needles. This isn’t where I had hoped to be at 38, but at least I can walk, so I have to be grateful.

Mr Shackleford told me that I would know when I needed surgery, but I am not sure that I do. I have a wife and a 5 year old daughter, and my biggest fear if that I will lose the ability to play with her, or end up in a wheelchair.

But, at 38 years old, and with my background, I am also really gutted that I have to give up so much, that I have to tolerate the spasms, and that I will never run or play any sport again. I’ve tried osteopaths, physios, chiropractors, you name it. Most of them have been helpful to some extent, but not a cure.

So I am very tempted to have the ADR surgery that Mr Shackleford has offered me, and I may be able to do this at the end of this month. But I just don’t know if I should do it. He’s told me that I am a great candidate (fit, quite large (making the surgery less fiddly), and with good access to the L5S1 according to the MRI), and that he has 8 patients that have run the London Marathon after ADR. I know he’s well respected, and this (and his comments) gave me a lot of hope, but equally I am scared that I will go through this and will end up in a worse state than I am now. I’m also scared of surgery, as I’ve never had anything done like this before.

My dream would be to have the surgery, reduce my pain and be able to run again, and even to do the London Marathon again, but am I being realistic? Has this ever been done by anyone here or does anyone know anyone who has?

Alternatively, has there even been a case of a sportsman returning to sport after ADR? Do these prosthetics really allow that level of mobility and support?

I’m also uncertain whether to do it now or just wait further, until I have no option, and hope that the technology continues to improve. But will that be harder to recover from if I have less fitness or core strength, as I am exercising less?

That’s it (sorry it’s taken so long!)... it’s been great to read about your experiences, and I would love to hear from you all, especially if you have any comments, input, suggestions or recommendations… or in fact anything at all to say.

It’s great to be here.

Many thanks,
Gary
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  #2  
Old 03-15-2009, 01:03 AM
Cris009 Cris009 is offline
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Join Date: Dec 2008
Posts: 34
Default welcome

hi my name is cris and I am getting ADR surgery on friday the 20th of March. I am 40 and used to be a 8 handicap golfer , basketball fanatic , gym rat, pool player , and all around above average athlete. for the last 3 years ive been basically living on my couch or taking pain meds to make it thru the day.

I am fully expecting to play golf again at some time after my surgery ..

I believe you have every right to expect ,after your rehab and timeframes seem to vary for everyone, to run and play with your daughter and play basketball again !!!!!

My doctor looked me in the eye and told me he fully expects me to do all the things I used to do and regain my lifestyle totally....

I will obviously be posting my results and update my rehab and ongoing results, but if you make use of this great forum there are alot of answers to your ???s here good luck to you and see you on the other side

cris
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  #3  
Old 03-15-2009, 03:45 AM
Nairek Nairek is offline
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Join Date: Apr 2005
Posts: 148
Smile Hello

Hello Gary,

First off, welcome to the forum! You will find a wealth of information here which may help you in your decision to have surgery or not.

Members on this forum are very supportive and can offer a lot of insight to the myriad of spinal problems out there. I read over your post very quickly (the please be gentle caught my eye) & can understand your hesitation about going forward with surgery. I noticed that you mentioned that you had trouble turning over in bed. I had this problem as well a few times & have to say that was one of the scariest things I have ever had happen to me. I felt like I was paralyzed from the pain. You also mentioned pain going across your lower back above the glutes. Have you ever had an x-ray of your SI Joints? I ask because I have SI Joint issues & it sounds like you have a lot of the same symptoms that I had as well.

Again, welcome to the forum. Do not worry about long posts either. Off to slumberland I go.
__________________
----Karin----
Disc Bulge C4/C5, Disc Degeneration T11/T12, Bi-Lateral tears L5/S1, Diagnosed w/ Lumbar Disc Derangement w/ Radiculopaphy. Treatment: IDET, Percutaneous Discectomy, SI Joint Injection, Facet Block. All failed. Empire BC/BS Denied Coverage for ADR-lost all of my appeals. MVP also denied coverage.

ALIF/PLIF Fusion 1/20/09
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  #4  
Old 03-15-2009, 02:02 PM
annapurna annapurna is offline
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Join Date: Dec 2004
Posts: 1,668
Default

My wife went through an equivalent thought process. In the year she was diagnosed, she completed a 204 mile in a single day bike race, the next month climbed Grand Teton in the Teton National Park in Wyoming, near Yellowstone NP, and the next month started having pains from DDD and was told that fusion and eventual paralysis would be her fate. Since her L5S1, she's gone back to biking and climbing and just finished a single day climb up Grand Teton. We've both been fighting other things, unrelated to her back trouble, that have limited our training so she isn't back to full strength but it does come back. Sometimes the ADR doesn't bring it all back, but if it is sucessful you will not be limited by the ADR. Other things, such as damage to adjacent tissues, could easily limit you but not the ADR itself, if the surgery is successful.

Running, on the other hand, may need to be limited in your future. Just like Laura's been ordered to use lighter packs and avoid extended descents, the pounding does build up. Many here have taken up with cycling or running on softer stuff. This isn't an absolute so it will be something you and your surgeon work out for you.

No one can tell you to have surgery or not but you seem to have picked out the point that is important here: you're not satisified with the status quo, nor do you believe that conservative care is doing it for you. With that in mind, you need to start looking at surgical options and make your decisions from that standpoint, but don't let yourself be pressured into action without spending the time to think it through.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #5  
Old 03-15-2009, 07:28 PM
GaryD GaryD is offline
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Join Date: Feb 2009
Posts: 2
Default Running a marathon with an ADR?

Hi all,

I've just joined the forum (my story is in the welcome section), and I have a question....

Has anyone ever returned to regular long-distance running after ADR?

I used to be a semi-professional sportsman, and I ran the London Marathon last year. My back has really degenerated since then and my specialist (Mr Shackleford) has suggested ADR. However, I am currently struggling to decide whether I should just live with the pain and reduced funciton, or have the surgery and set myself the goal of another marathon. Is this realistic, or am I being insane?

Has anyone here done this, or have experience of someone that has?

Many thanks,
Gary
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  #6  
Old 03-15-2009, 07:37 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Default

Hi Gary,

I merged this question with your previous topic, I hope that's OK with you. To answer your question, at least from this community's perspective, some people decide to heal slowly; carefully, while making a change in their lifestyle.

Others go nuts and do whatever they want, and some pay the consequences. If your question is about durability, the devices are pretty tough assuming that YOUR vertebral bones have good health -- meaning density. And this is another area of confusion: localized osteoporosis!

That said, if you are perfectly qualified, and have good bones, a good surgeon, a good device......you'll be in the best shape to have a good recovery.

You may have seen this topic already, if not, please do: ADR Risks, Complications, Disqualifications
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #7  
Old 03-19-2009, 12:25 AM
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CindyLou CindyLou is offline
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Join Date: Mar 2007
Posts: 627
Default

Hi Gary,

and welcome to the community, albeit under dire circumstances. So much good advice already given above, and you are definitely in the right place to ask questions and receive exceptional support. Forgive my bluntness, however, as it seems a bit to me like you almost have the cart before the horse. You can't run anymore. Your passion, it appears. Your current lifestyle is limiting, especially given your young age, and yet you ask should I have ADR so I can run a marathon again? I get the wanting to do everything you used to be able to do, BUT. Perhaps a little more respect for your ailing body is in order. Maybe you aren't in enough pain yet. Because it has been my experience that when I am ultimately approaching a very invasive surgery, the foremost thing on my mind reads more like: I'd love to go for a walk or enjoy a bicycle ride again, or take in a movie without having to jam opiates down my throat to get through it. How about wondering if you might be able to enjoy a good run again, instead of a marathon? And, if, down the road, you are able to complete that marathon, hey, huge bonus. I don't know if that makes any sense. Please don't misconstrue me not being a fitness buff, because I very much am. In answer to your question," is this realistic? Or am I insane?" I would say, in my humble opinion, it is a bit insane. I hope I did not put you off. I wish you only the best. Just my 2 cents.

Cindylou
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CindyLou
bicycle accident 6/19/01
2 compression fractures, T12, L1;
vertibroplasty @ above levels, 9/15/01
4/06 hip labral tear repair
4/07 Lumbar ProDisc replacement by Dr. B., 3 levels; L3-6
7/2/08 ALIF of L6-S1
7/30/08 Removed bone cement.
8/7/08 Diagnosed with pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion.
3/10/09 right SI Joint Fusion; seeing light at end of tunnel, for first time in 8 years!!
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  #8  
Old 03-19-2009, 11:55 AM
hezeronek hezeronek is offline
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Join Date: Oct 2008
Posts: 44
Default

Hello Gary!

Nice to meet you, and sorry you've gotten into this mess with the rest of us. I used to run long distance (before my accident). I've done several marathons and, in 2004, and ironman distance triathlon. So, I know what you're going through. I haven't been able to work out at all since my back got messed up. I'm on narcotic pain meds just to get through the day. As can be expected, my fitness level is pretty much non-existent. This has been really tough on me since I used to be soooooooooo active!

While I'm grateful to be walking (and mostly continent) once again, I cannot say that I'm satisfied in the least with the overall quality of my life. I'm 29, and did not expect to feel like a 70 year old already. My condition has gotten to a point where I believe it to be unacceptable. So I'm taking the plunge. I'm going to have ADR surgery L5-S1 in May.

I'm not expecting to be running any marathons anytime soon. Though it is my hope that the surgery will allow me to regain some of the endurance I used to have. (Or even just get me out of this pain!) I think it is important to be realistic and honest with yourself at this time. Whether you like it or not, your body has some limitations right now. It will probably have a few for the rest of your life. If you push it too far, you're going to end up in worse shape than you are in now. Trust me, I made that mistake in the beginning and paid for it with my livelihood.

While you may have some miraculous recovery and be able to return to your athletics with a vengeance after your ADR, with most people this doesn't seem to be the case. Set your goals and expectations a little bit lower, and you probably won't be disappointed. This doesn't necessarily mean that your life as an athlete is over, it's just over as you knew it before. From here on out, you're going to need to keep the utmost respect and patience with your body. And that means taking things a little bit slower. A rebuilt back is never as good as the one God originally gave you. But, it may be better than the one you've got now. That's for you to decide.

Best of luck on your journey. And remember, we are here to help!
__________________
MVC 8/07

9/07 - MRI - herniation and moderate DDD L5-S1

10/07 - Lost job, unable to work

12/07 - PT x 2, not much help

2/08 - ESI #1, 2 day relief

3/08 - ESI #2 and LP, no relief, had CSF leak
3/08 - blood patch, sneezed & dislodged needed another

1/09 - MRI shows 10x9x8 left posterior-lateral herniation L5-S1 with nerve impingement, DDD worse

2/09 - ADR scheduled 5/8/09 with Dr. B in Bogen, Germany
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  #9  
Old 01-18-2013, 05:37 AM
Daley Daley is offline
Junior Member
 
Join Date: Jan 2013
Posts: 2
Default

Hi Gary,
I've searched for information on Shackleford on this forum as I have booked a consultation with him for Feb. Can you give me an update on how you got on as your symptoms are very similar to mine. I have stopped running and cannot cycle far or aggresively, I walk funny and am constantly medicated to relieve pain (though it doesn't stop). I live near Spire Hospital so am fortunate in this respect.

Thanks and good luck,

Regards,
Daley
__________________
United Kingdom
Life of manual labour
enjoys cycling and climbing
Lumbar pain for 10yrs
L5-S prolapse
L5-L4 a mess
L4-L3 dehydrated
Pain moderate to severe
Awaiting consultation post MRI 01/2013
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  #10  
Old 01-18-2013, 06:40 AM
Lillyth's Avatar
Lillyth Lillyth is offline
Senior Member
 
Join Date: Nov 2012
Posts: 679
Default

Dr. Clavel told me there would be no reason I could not go back to competitive martial arts, including grappling (which is WAY harder on the spine than running with all the head locks as such), and I am getting a 3 level ADR in my C Spine, and possibly the same thing in my lumbar. If I can grapple with three to six levels, you sure as shootin' ought to be able to run again.

You do not want to wait too much because given the state of your disc, the vertebrae might wear down to the point you are stuck with the pain for the rest of your life because an ADR will not work.
__________________
Multiple traumas to spine starting age 13.
1st American to have 6 ADR's in one surgery. C3-4 - C/7, & L5-S1 - L3-4.
Surgery w/ Dr. Clavel, 3/18/13, M6.
Before surgery: severe spinal stenosis C5/C6 (cord "flattened" per stateside doc), + for Hoffman's & Babinsky's.
At time of surgery: 5 yrs MAX before ending up in wheelchair.
Clavel found L5-S1 partially fused. Had to cut it apart to put in M6.
Please excuse brevity - SEVERE carpel tunnel.
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