S5 through S1 DDD and Spinal stenosis

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allanbruce

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Sorry L5-S1
I have suffered from chronic lower back pain now for over 8 years, but about 1 year ago I started having terrible shooting pain up my spine. I realised that I couldn't do very much without triggering the lightning like pain so I have been taking it very easy ever since. But about 6 months ago I started having Sciatica type pain. Both sides of my butt hurt all the time but in general The pain is basically from the waist down. This makes it hard to walk and I can only sit for about 15 minutes. So I have to lay down most of the time. The only exercise I can do is swimming which I do almost every day. I also use an inversion table, magnet therapy, hot wheat bag compress and of course a lot of pain medication. I am also going to do some physio.
I am currently seeing a neurosurgeon and also have been to other neurosurgeons and an Orthopaedic surgeon. The consensus is that I have Degenitive disc disease, spinal stenosis, causing nerve root compression and the back and leg pain.
Both of the last 2 surgeons have told me that I need surgery and the last the neurosurgeon said I will need fusion surgery from L5 to S1.
I am concerned that the L5-L4 fusion will put pressure on the next disc and maybe damage that one also. So I thought I would ask about disc replacement at that level to give me some movement there. I will ask him before the operation goes ahead. But he sounded fairly sure that the both disc's needed to be stabilised but I will see if that can be changed.
As I have to wait another 9 months before my insurance will pay for the operation I am concerned how I am going to cope. It is one thing having chronic pain but to have this nerve pain in my butt, legs and feet is going to be difficult for me to handle for the 9 months. I am nearly bed bound except when I go to the doctors or do my swimming. It is going to be torture waiting. I can hardly do anything and I suppose it will be hard after the operation as well.
What do I do? Just hope it doesn't get worse or hope it does so I can get in more quickly. I would have to be incontinent or loose control or my bowels before the public system classes it as an emergency.
The other thing is the neurosurgeon wants to fully stabilise the vertebrae at those levels. I just wondered why? He would not offer a smaller procedure to relieve the sciatica as he said it would destabilise my spine.
Would anyone here be able to shed some light on this for me? It is going to be a long 9 months.
Other treatments I thought of were X stop, Disc replacement, Nerve monitoring, artificial bone grafts, lateral entry with smaller incisions etc, etc. Lots of new procedures that are to replace fusion surgery. But only some are covered by my insurance. I would still like research the different options though.
Allan
 
Is anyone there? Maybe you could just chat with me I don't expect an expert to solve all my problems. I just thought someone would have similar problems? Allan
 
Part 2: So, Allan, I had the surgery thinking that the pain would go away, and I wouldn't have to take narcotic medication anymore. And, I would be able to be a "real mom". I did pretty well after my initial complication, but @ the fifth to sixth month, I just had this nagging pain in my back that wouldn't go away. I also had pain in my toes that I never had before. Long story short; my surgeon didn't want to see me ever again. Fast forward to today and I am in Pain Management diagnosed with Failed Back Surgery Syndrome. This is when you have had this surgery and your outcome is the same or worse than before surgery. My MRI one year ago included the following: mild degeneration, stenosis, disc bulging, osteophytes, scar tissue, anterolisthesis of L5 on S 1 measuring 7mm. Foraminal narrowing bilaterally with impingement on the L5 nerve root. I had a recent MRI done (2 weeks ago) and it showed the same stuff, including multiple spurring, and the mild degeneration changed to SEVERE degeneration. The latter is because the fusion accellerates the degeneration process. Other things I didn't know; the more levels that are fused, the less successful the outcome will probably be. That's because when even one level is fused, when you then bend, twist, or lift, etc., the load is then put on the levels above and below the fused level or levels (whichever the case may be). Because that fused level will NEVER move again. This is why ADR is so much better. It gives a person much more mobility than spinal fusion and does not cause the degeneration process to speed up. I hope I haven't scared you. I just think that knowledge is power. I wished that I had known all of this before my surgery. Like I said in the beginning, my story is not a happy one. I am sure there will happy one's to follow mine....janiee
 
Hi Allan!!, I actually wrote you a post earlier and somehow it just disappeared right before I was to press the submit button!! I think I just need some time in getting used to this new laptop; it's so touchy. If you don't mind, Allan, I want to remind others that you are from Australia and that is why you have to wait several months before your surgery. Otherwise, some may chime in and ask why you are waiting so long; you must know how we Americans are by now;lollll!!!! Always in a hurry!!....anyways, it's 1:30 in the a.m. here and I am too tired too write any more. I will try to write tomorrow. I am sure others will post in the morning. Goodnight:wave:....janiee.
 
Thanks Janie, I appreciate that. Allan

Maybe I should have called myself Aussie Al. Maybe not.
 
I really hope I can get the surgeon to do a disc replacement at L5-L4 even if he has to fuse L5-S1 as that joint doesn't move as mush and it looks the worst on the MRI. But it will be about 8 months before I see him again unless my back gets dramatically worse. He seemed to think they both need to be stabilised but as I have heard from many people the disc above the fusion can be damaged easily after time if you bend or twist etc. That being the case and the last decision comes from me. I will seriously talk to the neurosurgeon about DRS. And also other options that may emerge in the meantime. But one thing for sure is I don't think anyone will talk me out of surgery of one type or another as I have had enough of this. 8 years so far and one year of sciatica along with all sorts of prodding, poking, scanning and injecting. (no more injections!) Along with bottle after bottle of pain medication etc. I have had a gut full so I really need this and I know my life is going to improve into the future. Otherwise I just don't know how much more of this I can take physically and emotionally. It's just way too hard.
Allan
 
I understand fully Allan, as I have had back problems since I was in Jr. High school, and now I will be 49 next month. The final decision rests with you, after all, you have to live with it, not us. I've read your posts for a long time Allan, and can feel your suffering through them. I hope whatever you chose, helps you Allan. Wishing you all the best, janiee.
 
I am fused L3-S1. Previously L4-S1. I was able to continue to swim, hike, work out, dance, etc. I had no real loss of range of motion except doing gymnastic type moves, etc. In my younger years I did some gymnastics - I can still do a cart wheel but wouldn't do much more than that. I wish I could do Yoga.

Good luck
 
Since you have nine months, I think you should use this to your advantage and research all of your alternatives to spinal fusion. Also, read up on posts, past and present on people who have had spinal fusions and the other treatments you described. There is also, radio frequency ablation, spinal cord stimulator to add to your list. I am not endorsing these, but do research them. Personally, I think you would be so much better off if you were just given more, or should I say an appropriate amount of breakthrough meRAB. Twenty of Endone a month isn't even one a day. This is inhumane in my book. About spinal cord stim; you always want a neurosurgeon putting one of those into you. There is also the pain pump. My story is not a happy one. I had my second fusion in October of '07. My surgeon sugar coated the procedure, and said these surgerys have an 85% sucess rates. Who wouldn't go for it? I thought: 85% success or 15% it doesn't work, right? The thought of getting WORSE after surgery NEVER occured to me. I almost died post-op from pulmonary eraboli;my family thought they truly were going to lose me. I had @ that time an 11 and 18 year old. See, I had 6 levels done, so that meant 8 hours on the table, and your blood begins to stay in one place, so to speak and form clots. Anyways, after surgery I needed a tremendous amount of help. Maybe it was because I had 6 levels done, or it was just me. My husband had to wash me and wash my hair for about three months. He even had to help me wipe in the bathroom the first month. So, if you decide on the fusion, you need to have someone @ home to help you with these things. This is a HUGE SURGERY. It's not like a gall bladder or appendix operation. Read the sticky notes on the top of the board here if you do decide on this surgery so you can have certain items in place before you come home. Sorry if this info seems scattered. It's late and it seems like it's the only peaceful time that I can write. I will post this, and call it Part 1. Then send Part 2, tonight or tomorrow....janiee
 
First, I agree that if there is a problem in a neigrabroadoring area (I think you mentioned L4) really think about asking them to do that level as well (especially if you have a fusion). I wish I had added C4 to my neck fusion as I had C5-7 and I think I need C4 now.

Second, will your insurance allow treatment by a Pain Management physician? It can be hard to find a good one (sometimes it takes a few tries to make sure you are seeing one who listens and just doesn't hand out prescriptions or on the opposite end refuses to prescribe what you need).

Also, many insurance companies will not cover ADR. Or if they do, some only approve for one level only and/or have stringent requirements (they want to know the condition of all levels of the spine first).

While the concept of the ADR sounRAB good I'm actually glad I've done a fusion both lurabar and cervical as there is more long term data behind fusions than there is behind ADR. Do a lot of research as I've read some stories of ADR failing so people end up having to do a fusion anyway later. As it was my insurance would not cover ADR and I'd never be able to pay cash for it (though sometimes you can get into Clinical Trial test groups for things like this where all costs are covered if you are the ideal candidate)
 
Really tied now and it is only 3.30pm but I do normally have a sleep in thee afternoons. I think it is a corabination of the pain and meRAB. So I will have a nap for a couple of hours. I really hope one day I will get some sort of normal life back. It is probably a bit much to ask. I don't really think my life will ever be normal or even just average. I am counting the days for the operation.
With depression and chronic pain it really screws with your life. My pain is up at present but if I get a sleep and later more meRAB I might be ok for a couple hours tonight when we are having visitors. But I can always head to the privacy of my room and get on here or just veg out. Bye for now. Allan
 
Yes they will have to do both levels, sorry I make mistakes as when I write these threaRAB 3/4 of the time I am in a lot of pain and the brain just doesn't deliver the right messages to my fingers. I actually meant L4-L5 and L5-S1 so I hope that sorts out the confusion I create.
The surgeon seems to want to fuse the both disc's all 3 vertebrae. He mentioned a couple of times that he didn't want to leave my spine unstable. And the best way I suppose is fusion. I really would like to have some movement at L4-L5 as I have always enjoyed being flexible and agile. But if he really wants to do that for any important reason I will go along with it but I will be arguing for the disc replacement there at least.
I know that the ADR is available and my fund would cover that option but in the end it is up to the neurosurgeon. But he will have to convince me. I don't mind if L5-S1 is fussed as it probably doesn't have much flexibility now anyway so that is fine. The other thing is the bone graft. I am a bit nervous about that.
I have cover now for physio massage and some health management programs so I will look into what I need now and after any operation such as rehabilitation etc.
Thanks Spine AZ. Allan
 
Shona:

It's better for AllanBruce to only take exercise suggestions from a medical professional (physician or physiotherapy staff). We wouldn't want him to do further harm or cause himself pain.

I'm fused L3-S1 and it's possible that bike riding will not be an activity I will be allowed to participate in ever again, but only my doctor or physical therapist can confirm this for me.
 
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