Glad you finally had your appointment. I know how hard it is to wait and wait. I know it is hard to have confidence in any surgeon after having gone through a bad experience...but, if you feel comfortable with this one, I would think this would be worth it. As I understand your situation, the options are limited.

Most or many people do not understand how big a problem instability can be. I know I didn't until I started working with a guy whose emphasis is on alignment and balance. He works primarily with long distance athletes -- the Iron Men athletes, guys and gals who run the 100 mile races, etc. Needless to say, I don't fall into that group...he sees some orthopedic cases, too. Anyway, I have come to understand that everything I try to do to build up my core strength, etc. is pretty much a waste of time while my spine is unstable.

I have limited amounts of exercise I can do before my pelvis rotates or my sacrum moves a tad, etc. This causes problems all over, beginning with my feet and working its way up. Doug keeps telling me that until my spine is stabilized, I cannot work to make my muscles stronger so they can do their job in supporting my spine. I'm not explaining this very well, but this same situation applies to you.

Once your spine is stabilized, it should be less painful to exercise, even if what you are able to do is very limited. In my case, my instability allows for the S1 nerve to get caught when I move a certain way, resulting in terrible leg pain that prevents me from being able to walk more than about a block. If my spine is fused at that L5-S1, at least the nerve would not slip in and get pinched. I would think something similar is going on with you.

Obviously I don't know the details of your situation. You just have to decide what is the down side of doing this procedure. From where I sit, I would think it would be worth trying, even if it only improves things somewhat. What other options are out there?

Good luck as you make your decision.

xx Gwennie

As it stands right now, you live your life in a recliner. You are not happy with your current situation. There is a possibility of decreasing your pain by 50%. What's there to think about?

With your spine stabilized, you might be able to consider an SCS or a pump to catch a little more down the road once things settle down. This sounds like a no brainer to me, but I'm not you.

Dave

I had fusion, and that has been the problem of where all my pain stems from. I know not everyone has this problem, or so I understand. I however, grew arthritis everywhere (3 discs) that were fused together using cadaver bone and bone from my hips. It is brutal, but everyone is different. I hope the best for you whatever you decide. This S*** sucks.

Tony if you've followed my XLIF surgery reports. In the very beginning I was in a lot of pain for years due to 2 failed surgeries. And with the hardware removal (that didn't help) they all left me with too much scar tissue, and way too much plaque on my spine to do any kind of a conventional surgery On the L2, L3, that was causing me so much extra pain. The new surgeon Said that even if he could get through the scar tissue, that the chance of knocking off any amount of plaque was too great and it would likely give me a massive stroke.
That said, when the XLIF procedure was approved by the FDA and had been done for almost 2 years. I saw this surgeon. And that is exactly what he told me.
A 50 percent reduction in pain would be his goal. And that he thought there was a good chance of that and a good chance for a reduction in pain. From a average of 6 with meds, to a 3-4 with lessor meds.
With a surgery that was far less invasive surgery than anything I had ever experienced.
Prior to this, I had made up my mind that under no circumstances would I EVER have another surgery!
But the 50 percent reduction in pain? To me that would be a cake walk! and with a reduction in meds. That was another huge + for me. After talking with him 2 times for a great length of time. And doing the x rays, discogram, and C scan. And all of the research. I was confident that there was a very good chance he COULD do this successfully
So Tony, a 50 percent reduction for a guy like you or me. Is huge! And certainly worth doing all of the home work. And weighing it up. My decision was based on the 50 percent pain reduction.
Good luck to you my friend,
Jim

I've heard that discogram is uncomfortable but in the long run if fusion is giving you some relief and stability by 50% sounds promising. If this is one of the best Surgeons then good to know you have your best chances with him. I can understand your hesitation after all you've been through. We'll be here to support you through it. Hug and I will say a prayer for your healing. Take care. Charry

Wow, you do have a lot to think about. But, any percentage of less pain would be better than where you are now, right? And to have 50%? That would take you back to probably even before I started reading your posts a year ago!! Imagine, you could go back to walking, get back to the pool!!! Wouldn't that be terrific?
If you're unsure of the surgeon, ask around, to see what his rep is. What does your wife (is it Cathy? sorry, poor memory lol) think?
Anyways, I wish you luck in making your decision, I'll be thinking of you, and sending positive vibes across the pond!!!

If it was me I would look at it this way, if I don't have the surgery what will my life be like in 5 years time? If I have the surgery with 50% reduction what would my life be like in 5 years time? If I have the surgery and I only have 5 or 10% reduction in pain what will my life be like in 5 years time?
Bearing in mind that this surgery will provide more stability which will enable you to do more exercise like core strength that Gwennie talked about.
I think sometimes you just have to take that leap of faith and pray you get relief even if it's not the full 50% promised anything would be better than what you have now wouldn't it?

A difficult decision, but if it were me, I would take the risk.
Good luck and keep us informed.
Kylie

Tony, I'm glad to hear you've been given an option, at least. As others have already said, even a 50% reduction in your pain level over the long haul would seem worth it. Of course, things could turn out worse than that--it's always a possibility--but I would think that the chance of 50% reduction in pain would be something to jump at. What will you do if you don't try the only viable option? Wait for more years to see if some new treatment/surgery is found that may help? It's no small decision to do a fusion, I understand, but I've seen you at the end of your rope here several times and I can't see how you could continue the way you are. It's your decision, of course, and you know you've got your spiney friends behind you all the way whatever you decide to do.

as i am not allowed to use the names of surgeons or even the place even though its in the uk and i was not being derogative i will have to talk in code ,on certain things .anyway ,,,after seeing Mr wonderful ,at his place of work .he told me that my previous operation had left my spine so unstable that he was not surprised i was in so much pain ,it all started with the original operation and an incompetent surgeon that has butchered My lamina and some disk .this left me with pain and limited movement .when the second disc went it was no surprise to the surgeon because there was not enough bone to hold the spine in its correct position ,now i am left with a very unstable spine and a very technical operation so much so the surgeon Mr wonderful .will have to contact the manufacturer to see it they can make a cage to fit my very strange shaped and deformed spine {it will be a two part articulated device }and as far as Mr wonderful knows one dose not exist ,he wants to do a test on the disks above to test there strength before he can continue .Mr wonderful was surprised that i had lasted so long before seeking out help as he dose not know anyone with such a badly surgically butchered spine .the last surgeon lets call him Mr not so wonderful should not have operated as it was fat too complicated for him to do and the MRI scan proved that as he has made a bad situation a lot worse .i have been told by my wonderful that it will be a tough time for me and recovery will be in the region of three years .and even then i will never be pain free .the object of the operation it to stabilise the spine /remove all the scar tissue and clean up the mess from the previous operations ,as i see it i don't have a choice i spend 20 hours on my recliner and if i continue i don't see myself reaching 50 years old hopefully with a successful operation my life span should be longer as should my quality of life .seeing as i live in the UK using the correct person name and place of work in a favorable manner i thought could help others in a similar position i did not expect to be chastised by C.picky picky
STRAKER

we can't name and shame the quacks really.
I mean I understand why we can't but it would be lovely to be able to forewarn others wouldn't it!
Tony, it sounds like you've made up your mind, we'll be here for you no matter what, you know that.

You've made quite an impact on a lot of people it seems, your resilience is quite commendable.

Kylie

Try that site, I talked about and talk to the guy that runs it. He can get opinons from top ADR guys by putting your scans online and sending them via computer. Many of the top ADR doctors keep in close contact with him. I have talked to him and he dosent deal with thorasic just ADR but put me in touch with some good thorasic docs.This is what he said years ago after his ADR.

"After two failed spine surgeries, three years on opiates,one year of essentially, a shut-in, I was given a second life!", Mark,
Charité L4-S1, September 2002

is an expert in the uk wirh 30 years under his belt ADR id not possible due to the butchering from the two previous operations but thanks anyway
STRAKERa

And would it be anterior, posterior, or 360. And would he redo any of the prior work?
Good luck, Jim

I know this may sound like a insignificant rule (regarding the specific naming of doctors or medical institutes)

It is something we need to be very careful of. Using specific names and medical institutes can open up a can of worms. And when used by someone who is trying to gain revenge, it is so sad to see. That is why we can not allow this.

But please, "C" is acting on behalf of the Moderator and Authority team. She is following the guidelines setup by this site and the enforcement that I layout.

I am sorry you felt you were being chastised by "C", Tony, I know you to be a very fair and open person, so, when I say this, I know you will understand. If there was any ill feeling about what "C" posted, that should be directed to me. We have a very tight Moderator and Authority team that works very effectively. We always try to act as one

hope you will get well soon. keep us updated, ok.

you asked what disk would he fuse ..and its not a straight forward as a normal operation .let me explain .Mr wonderful would have to redo the original operation and do a nerved decompression first and then shave off the scar tissue to obtain access to the spine and start to reconstruct it .as far as he knows there is not an off the shelf piece of kit that will just fit me ,he is going to contact the manufacturer to see if something can be manufactured to fit me {i know we are all different and one size will not fit all } but this is something different altogether .he explained that because i have a right sided bend in my lower back and that's where the spine is just bone an bone hence the pain i also have congenital abnormalities to contend with .the device would have to articulate to accommodate the spine .i know it sounds vague but when he showed kath and myself yesterday it made sense .i have 100% faith in this man .he has an excellent reputation and is no fool he also said it would be a highly technical operation and not without risk and recovery would be long and hard .but the options are bleak to say the least .he recons that without intervention i would not make it beyond 50 years old .due to the high dose of narcotics /a sedentary life style .he appreciated that i am unable to do much and was not finger pointing he just asked me to try to loose some weight .i will try my hardest .i am a vegetarian {always have been } i dont eat rubbish and only have small meals but i sit on my rear too long hence the weight .so its back to the pool for me ..i have suffered unbelievably in the last 3 years and i dont want to go on as i am so i feel that i have no option i am scared to death but i must give it a go .mr wonderful comes highly recommended and has a very good success rate he is the uks top ADR man and will do stuff most will not entertain .i also go on another website where names are permitted {thats how i go to know about him} and he is always being talked about in a positive way
STRAKER

to you! I am so happy that Mr. Wonderful has given you an option to reduce your pain levels. You've waited SO LONG to get to a doc who could offer you hope for a better life.

I will keep you in my prayers for a succssful outcome to your situation.

Take care ,

Judy

Before my lumbar fusion my quality of life was a 3. I could barely get around with a cane and knew I'd be needing a wheelchair soon. Now my quality of life is a 7, fusion was a miracle for me! I am still disabled but now I only need my cane when I've been on my feet too long. I'm happy for you that you finally have an option. Being scared is normal. When you realize you are more scared to stay this way than you are of surgery, the decision becomes easier. I had 3 lumbar surgeries that failed before my fusion. Having lumbar stability again has made my life much easier. If you have any questions for someone who's "been there" PM me anytime Tony.

Take care,
Faith M

Sounds like you do indeed know what you will do if surgery is possible.

Let's hope it can be done, and soon.

Hi Tony. I'm so glad to hear that you at least now have the hope of having less pain than you've been in. I really hope that everything goes well and this great new surgeon can give you some much needed relief. Hopefully you'll be able to get back to living your life the way you deserve to live it. I'll be thinking of you and wishing you the very best.

Debbie

I just can not see how you can not give it a try. Just the idea that there is a chance you can get better will give you the energy to carry on no matter the level of pain.

You are already talking about loosing weight and somehow getting back into the pool. Hope is an amazing thing.

I really wish you luck my friend.

-js

Like the others have said, I am so glad to hear that you have found a surgeon who will work on your spine and hopefully give you back some of your life that you have been missng so much of. You deserve it.

Keep us posted,
Lisa

i have a long haul ahead of me and 2 stone or more to shift {that will be hard .then i will be having a barrage of test to ascertain the structural stability and general condition of whats left of my spine before he will operate .is all goes well i should be on the table in november maybe December ,this gives me time to get a bit fitter .once again thank you all you are all very kind people .{Mr Wondefull} has many years experience in spine trauma and reconstruction but he has never seen such unnecessary poor work done on a spine and its going to be a challenge .even for him .he also told me it would take 3 years to recover from the surgery .this is a very long time .
STRAKER

I am glad that you finally have some hope and light at the end of the tunnel. Although the road will be long, the end result will hopefully give you your life back. I am glad your found Dr Wonderful and that you are not destined to a life in a recliner.
I hope the discogram gives you the information you need to proceed. I will be having one in a week and half to find out what my problem is. It is tough to face another surgery, but we both need the hope of better days ahead. Congrats and hoping things progress smoothly for you. Take Care, Robin

Hi Friend ! I thought of you ALL day yesterday and was SO scared to come here and read what has happened. I was so fearful it would all be bad bad news.

I understand you are not doing the happy dance with what he did tell you, however try to view it like this. The 3 yrs will come and go if you have the surgery or if you don't. If you have the surgery your count down of these 3 yrs can be a count down of hope and looking forward to your future of living with less pain.

If you don't have it then what will the next 3, 5, 7, 10 yrs bring you ? ( not really a question you need to respond to lol )

You know what Tony? I have a good feeling about this surgery!
The best to you my friend
Patsy W

i am glad you have a good feeling .because i am scared 5417l355!!
tony x

Hey Tony,

I'm sorry I haven't wrote in so long and I really miss chatting with all my spiney's. You may have see dehoyos post regarding my complications with the scs trial?

Anyway, I'm very happy to hear that they are willing to offer another surgery for you even if it will reduce pain 50%. That's a lot better than now. I'm facing similar situation right now.

Are they asking that you try to reduce your pain medications before surgery?

I actually signed on to update my status and seen your name so wanted to check on you first so look for my update as I'm having similar things coming my way that you are going through.

I'm so sorry that mr not wonderful even was allowed to get a license to operate and got his hands on you. That's just horrible. Is there anyway you can go back after this doctor if you can prove he botched your first surgery?

Many prayers and spiney hugs to my buddy and I hope you are doing well. I miss chatting with you and all my other spiney friends GIANT SPINEY ((((HUGS))))

Michele

i will send you a PM soon happy to see you back on SH XXX
TONY

Straker, It finally sounds like you have found a good dr that listened to you, took you seriously, and best of all wants to give you a new life with less pain! My thoughts are if you are in such severe pain constantly with no quality of life, what do you have to lose? The chance to have less pain and some quality of life back is always worth a try. For so long you thought you were stuck lving like this so I truly hope your Mr.Wonderful can get you back on your feet(so to speak, LOL) and have some good times ahead with Kath. Good luck as you face the months ahead!

Kathy

this doctor is a specialist in the field of bio engineering and is recognised as and expert and will do stuff that others wont or can't .i have already been told by other surgeons that they can't operate and i would just have to accept the fact that i will be on medication for the rest of my life and by the age of 50 i would almost certainly be wheelchair bound and have a very poor and short life expectancy .my surgeon want to do a risky procedure .risky because of the damage left by previous less qualified surgeons .and he has also told me that i wont be pain free and the recovery will be a long one {3 years} the operation although not too technical would be a long one around 7 hours .this surgeon has an excellent reputation but i am no fool and i realise that things can go wrong and i could end up wheelchair bound or even worse .but i believe that i must give it a shot because life as it is at the moment and had=s been for there last three years is no life at all .if i want to get back to some quality of life again i must trust this man and go for it
tony x

Now you're starting to sound positive!!!!!

This doctor sounds fantastic and although the 3 year recovery time seems quite long, it will all be worth it. If you can continue to imagine having 50% pain relief, I know you will do whatever is needed.

I am so happy you met this doctor, Tony.

Enjoy your daily walks with your dog. Walking always helps to lose some weight and it will also help to strengthen your core muscles.

You have so many friends here that are cheering you on and will be here through thick and thin.

Keep thinking positive... this news is something to be really excited about. It's been a long time coming for you and again, this doctor sounds fabulous.

Thinking of you and wishing you the best,

Tammy

I'm sorry the ADR won't be an option, but I'm glad to hear that someone is willing to try and help you out. As you know, I had a three-level fusion in 2008 and I'm still recovering. It's a long haul. I don't know if I will ever feel "normal" again, but I think the surgery was well worth it. Before I had the fusion, I could move just a fraction of an inch in any direction and suddenly be in so much shock and pain that I was literally unable to move for a few minutes. Often I would have to reach down and grab my pant leg and force my leg to move, as I would be in so much pain I could not possibly move the leg myself. The fusion has stopped that instability and severe pain. Yes, you doc is right -- the pain in my legs became significantly worse after surgery (for about two months). I needed to take Lyrica (nerve pain med) and it really helped to relieve the agony in my legs. Now I am so much better. I rarely need pain meds. The worst part is sort of feeling like I have a broomstick up my butt. The stiffness is uncomfortable, but not painful. While I'm not normal, I am so much more comfortable. I would never want to go back to the agony I suffered before the fusion. If you're willing to struggle through the pain (it won't be easy) for the promise of relief after about a year and a half, then I say go for it. Even knowing what I know now, I would do it again. My surgeon is very talented and he really helped me out. You just can't live the rest of your life in a recliner.

Linda

I just had an L4/L5/S1 fusion in Feb and am recovering. Your surgeon sounds like mine did, he is also very respected and in demand at what is considered the top hospital in my state. It took a very long time to finally get on the surgery table from the day I started the process to see him, about a year. He is considered an expert in orthopedic neurosurgery of the spine. I first got an opinion from a neurosurgeon at the same hospital who offered to perform the fusion but was very negative about the outcome because of the damage to my nerves. He gave me 50/50 odds of either getting better or getting worse. I decided to get another opinion from the chief surgeon of the spine program, even though I knew the process would take a long time. He was much more positive, didnt mention the pain getting worse, gave me about 65% odds of improving but was unsure on how much improvement because I had more operations and damage than his typical patient.

I would tell you to not go through with the discogram unless you are sure you will go through with the fusion. Discograms can increase pain usually just temporarily, but sometimes much longer or they can cause more damage increasing a bulge or herniation. My pain after the discogram increased quite severely for a few days and mildly for about a month. My discogram was positive at L5/S1 but negative at L4/L5. Because I had already herniated and had surgery on L4/L5 it was also included in the fusion. I wasnt happy about the discogram because I read they can be innaccurate, I would have went through the operation without the discogram. I also had to have an EMG which I was told showed alot of obvious nerve damage, some chronic but some thought to be able to heal.

I was also very scared of going through with the operation for a couple of reasons. I was scared of the operation not helping and being stuck with a fusion at age 30, and I was scared of the pain getting worse. I had to go through with it though, doing nothing was not working, and this was the next step my surgeon felt. My pre-op appointment was brutal, the physician assistant took me through the surgery and didnt pull any punches. It was going to be a very tough recovery to put it best. She made it sound so bad that my mother, who is my #1 supporter, was near tears. I believe they want you to expect the absolute worst. I also believe they feel if they can scare you out of the surgery, then you shouldnt go through with it anyways. You have to be 100% sure and 100% ready. I was in a position where they could have made it sound like months of chinese torture and I would still go through with it. A fusion is serious in someone young, and this surgeon wouldnt offer to perform it unless he felt it could help and it was neccessary. He told me the pain wouldnt go away, the goal was to improve the pain so it was easier able to control. He told me the patient usually regrets the surgery the first 3 to 6 months and after that is when hopefully the benefits begin to show. He said it could even take a year to get improvement of the nerves in my feet and legs.

I am about 7 weeks out of surgery. I am positive about things so far. The most significant improvement so far is the fact that neurontin now helps me when it never had in the past. I tried it for a few months on two different occasions in the past 2+ years with no benefit, even at a higher dose. My surgeon told me he was adding it to my med's after surgery because sometimes meds that didnt help in the past can help after an operation, and he was correct. It has been big having another med able to fight my pain next to the opioids which were all I had to combat my pain in the past. This reason and a postsurgery increase in my other painkiller has me being better able to control my pain most of the time now.

I have had a couple 3 or 4 day stretches where my pain was very severe. The nerve pain in the leg was possibly worse than before surgery at those times, but the good days are far outweighing the bad right now. I also had a month where my lower back and hips were severely sore. My post-op orders for the first three months are to rest in bed and to walk everyday. No driving no long periods sitting. In May Im supposed to start physical therapy.

I hope that helps you a bit. I would only tell you to go through with it if you have tried the nonsurgical options(which have never helped me), and also only if you have already had surgery(laminectomy,discectomy) at the area already, which Im sure youve already had atleast once or twice. Also I would tell you to be sure you will go through with the fusion before the discogram. The bad part is that a discogram far from 100% accurate. You could have a disc that is causing your pain that still tests negative, and then the doctor wont offer surgery. Thats why I was worried about taking a discogram to help determine me as a candidate for the operation. I was worried L4/L5 wouldnt be fused because it tested negative, but for the same reason I wanted it fused, it was already herniated and had already been operated on, it was included.

Good Luck

Johnny

thank you for your comprehensive post i found it most informative {and it scared me half to death!} i have already had two operations over the last 15 years and i have been on every medication known to a colombian drug Barron .the point that worries me the most is .i can't take ANY gaba type drugs {lyrica and so on } as they blow me up with fluid this causes dangerous fluid retention and would lead to CCF AND DEATH IF LEFT UNTREATED also when i first went on it i put on over 3 stone in as many months .what is a discography? .i am not so sure about the operation as i fear it will make me worse .i am aware of how serious the operation is and i have a lingering doubt in my mind that things will go wrong .the last operation has wrecked my life due to the surgeon not being skilled enough to fix the first surgeons mess.the clinic that i have been under for 4 years have now discharge me back to my doctor saying that they can't and wont do any more surgical procedures they feel that it wont help me and could indeed make thinks worse .even the pain clinic have decided that enough is enough and i should go and live my life on pain killers and forget about surgery ..but my enquiring mind led me to ADR and a uk web site that supports this and from there i was led to this surgeon who has an excellent reputation.with ADR/fusions and that's where i am up to now.i have a few months before i must decide and i am going to take that time to see how much i can do without any more surgery ..i don't want to be on the table again as i know of so many that have had many problems with fusions .the very thought of being made worse and some surgeon saying ..well i told you this may happen !..is not good enough for me ..i know that there are no guarantees in life {apart from tax and death}but i do have a feeling and its not good ..maybe i am just shipping my self {not a mistake} but a life of intractable pain with no way out fills me with horror.its ok for the surgeon to walk away and on to the next patient ..you never know he may fix the next one but what about me ??.no one will touch me and i could be up ship ally with no way out.my marriage is no at its best right now and i don't know if it would stand another bombshell so that's another consideration ..i think i am at the best i am going to be right now {this is recovery from the last operation 3 years ago} the thought of 3 more years hard recovery only to be made slightly better or a lot worse it worries me .i will have to think about it but again keep in touch and thank your for your information .are you on skype?
STRAKER

Hey Tony,
I think it's important for surgeons to inform all their patients that once you have back surgery, it's highly unlikely that you will be 100% pain free but reducing the pain to a tolerable level is all of our goals.

I know you are nervous about this surgery but it sounds like this guy is the best of the best. Just trust in him. Did you get a date set or are you waiting for them to make the device for your spine first.

I'm so excited that we are both having surgery and have chance at a much better life. It's so different than what we expected and what we were being told by docs a year ago. Have you been able to swim at all? Spring has just hit here and it's been really nice except for today and the next couple of days is all rain. We just had our first thunder and lightning tonight...just one but it's exciting to get the 1st one of the year lol. This dampness isn't helping my back at all tho.

I'm so glad that you are much more positive now. We'll get through this together, Tony.

Your spiney friend,
Michele

i am sorry to tell you {and i have explained better in my pm } but due to various reasons i wont be having an operation ..not yet any way .
take care
tonyx

Tony, you and ONLY you can make this very tough decision. Not us, not your wife or family, not even your Drs. JUST YOU!
I consider you a very well informed person, who gathers a LOT of facts before he makes a decision.

I do know that your own feelings ie. fears are also involved in this decision. From your previous experiences - which is totally understandable. You have been sold a "bad bills of goods" in the past.

If in case down the road you change your mind, please be open with this Dr, so that hopefully this door is left open.

Please know you remain in my thoughts ♥

Hi tony,
Just know that you are in my thoughts and prayers daily and I pray that with time will come newer technology at helping us spiney's to be more comfortable or better yet...pain free!

Your dearest spiney friend,
Michele