14 replies to this topic

[babyblues]

Hey, gang--

I hope this is the right place to put this.

I got some rather unexpected and unwelcome advice today, and I'm not going to whine about it, but I don't know any better group to ask for opinions, knowing I'll get a cross section and other things to consider.

Short background: I fell down a flight of stairs in 2001 and ruptured my L5-S1. I had a good neurosurgeon, who at first pushed fusion, bu then agreed to the conservative approach to see if I could recover well enough with just removal of the offending part of the disc and some intensive therapy. Lo and behold, it took me out for about 6 months, but soon I was in pretty good shape--although I had to watch my activities and no longer take part in anything that might cause the little bit of disc remaining to evaporate, I've managed pretty well for the last 10 years with regular exercise and chiropractic adjustments.

However, a week ago I was walking my pup along the river and he lunged for the water--my feet shot out from under me and I landed HARD on my left hip and leg and slid the rest of the way down the bank into the water. At first I couldn't even get up--the pain was excruciating in my lower back, my left leg wouldn't hold me, and the spasms were immediate and intense--seriously, I couldn't move. Once dragged out of the water (it wasn't deep) by my daughter and helped to my feet, and my leg seemed it would hold me again, I noticed numbness--not even tingling--down the back of my leg to my foot and found it very difficult to walk back to my car.

So, long story short: I consulted with a neurosurgeon today (I've been taking care of it the best I know from previous times) and had an MRI; he informed me that I have now herniated my L4-L5 and is strongly recommending fusion from L4-S1. There's some anterior cord damage; how much can't really be determined until the swelling goes down and the herniation fixed, but enough that I've still got numbness all the way down, interspersed with occasional sharp and shooting pains. Mornings are the worst; it takes me a while to get out bed and involves a LOT of cursing. When I balked at the idea of fusion and said I wanted another opinion, he gave me steroids, anti-spasmotics, and pain killers, and said the only other option might be an intensive course of therapy and some cortisone shots and see what happens. Again, I'm balking, because I want another opinion, at least one.

So here's my question: have any of you had fusion and if so, how did it work for you? Do any of you have other suggestions or options I might not have heard about or considered? Any and all advice from this community will be welcomed and considered...with a great deal of gratitude, too. I don't want to go into details on this thread, right now, about why I'm so scared to have a fusion, I'm just seeking others' opinions. However if there's more information I can provide that will help formulate a more enlightened response as you educate this "newbie," please tag me, either through this thread, or PM or email.

Thanks for being there for me to bounce this off you...it was the first place I ran to when I was stunned by the diagnosis; to the shelter of my dear friends and ever-so-knowledgeable folks on this site.

babyblues

[Simba]

As you are reluctant to have the fusion surgery you are probably aware of the associated risks with the procedure - it is a difficult choice to make based on the pros and cons of the expected outcome - will it resolve the issues as the fact that your legs gave out on you is suggestive that your recent fall may have been caused by existing neurological damage from your previous fall which caused your SCI.

Some people with SCI are obviously still walkers as there is enough neurological function for them to continue being ble to walk. In some cases there can be a natural loss of this function which will cause permanent paralysis - i am not saying that this is the case for you - but my was a walking quad for twenty odd years before he also could no longer sustain his weight, the neurological damage from his accidents finally meant the nerve signals could not form pathways any longer.

What concerns me with the question about the fusion surgery is that if the lack of function in your legs is due to neurological damage that you have already sustained, then the fusion surgery is not likely to rectify the problem and therefore would be a huge risk to take in terms of further damage. I guess if he is suggesting the fusion it the same section in your spine that the herniation occured in that was previously damaged - so is it to minimise the further risk to this susceptible area that he is concerned about?

I would recomment talking to your specialist extensively to get him to try and explain to you exactly what your position is...Is is possible that you will recover form the nerniated disc without the surgery? and if so what is the likelihood & recovery time? I would also recommend trying to get a better explanation as to why your legs gave way in the first place...as well as the fusion surgery talk to him and get clarification on the neurological side.

Wish you well with your recovery and the difficult choice ahead - get as much informtionas you can before making your decision.

[wheelzoffortune]

My situation is quite different than yours. I've had two fusions done. The first one went fine and I had no problems afterward. The second one was 7 years ago and I STILL have pain from the surgery. The really bad thing is that I didn't actually need the second one done.

[davjed]

I think you're faced with a tough decision. I had to have a fusion done at 10 years post accident. I went into it with a positive attitude but no expectations. My fusion was at T-10 to L-2 slightly higher than yours. Somewhere around the level of T-12/L-1 the cord becomes the cauda equina which is more peripheral than central system and capable of more regeneration and recovery. They did a laminectomy and fusion on me and I had a slight loss from it. My bladder went from spastic to flacid and quit self emptying. This was a mixed blessing in the long run. I lost a couple of inches of feeling on both sides from calf to knee. No big deal for me. I did realize the chance for major loss but my injury had not been initially fused and was deteriorating causing more problems. Arm yourself with as much knowledge as you can and ask as many questions as you can. Make sure your doc is a qualified neurosurgeon and not an orthopedist (no offense intended). If you pray, do so and ask for guidance. After this, make your decision and don't look back. You can adjust to the outcome just as you did the initial injury. Best wishes.

[Califanna]

I hope you consider other options and avoid fusion. It's a hit or miss when it comes to surgery. I haven't spoken to anyone happy about their fusion.

Edited by Califanna, 08 April 2011 - 07:24 PM.

[babyblues]

Thank you, folks for your candid answers; I jotted down notes of questions to ask before I saw this second guy (both have been neurologists--I learned from my last experience with an injury that an ortho fixes everything by cutting and sewing.

The second doc was more middle of the road...he's agreed to the steriods/antispasmodics/painkillers along with some intensive and varied therapy AND Chiropractic adjustments (that shocked me!) to see if the herniation will "slide" back in or "recede" and the swelling goes down and the nerves "unkink" or "uncompress" as he put it. He also gave me about 3 weeks to see if I make any progress.

In the meantime, I'll go for some nerve conduction studies to find out just what is wrong were, i.e., why did my leg go out, who is it numb to the bottom of my foot most times and shooting pain the rest of the time; as well as a more extensive MRI from the mid-waist down (when I had the first one done it was very narrowly focused, but now he wants to see my pelvic girdle/joints, and femurs to make sure there isn't something wrong there. the disc is obviously herniated--even a novice like me can see that on the MRI--but until the swelling goes down he can't tell how much it's impinging on the cord, or if it even is, or if there's some other reason--a "pinched" nerve somewhere? does that sound right?--for the symptoms). So anyhow, he's being conservative and not pushing the surgical option of any sort just yet, which is a relief, so I'll stick with this guy. He added that instead of doing a fusion he might be able to repair the herniation and then strength the area with small plates or rods...but he didn't go into detail and I'm not sure I like that idea either. I'll cross that bridge down the road.

In the meantime, I'll do as I'm told and work hard to avoid the whole surgery deal...I'm sick of being cut open like a melon all the time! I've got a good therapy department already and will be taking OT as well as PT to make adjustments to my ADLs--as well as learn to ask for help instead of being so damn independent!

Thanks again...if anyone has anything else to add, please do so--I'm reading various threads I've located from w-a-y back as well as surfing for recent information and am absorbing everything I can so that I make an informed (and Guided) decision.

babyblues

[pinkcloud]

Hi babyblue

I am in a similar predicament to yourself thus why I come back on here to help deal ith me new symptoms. Different problem - same question.

I have the most wonderful consultants looking after me and I trust them totally. However, to go thorough surgery again would be too much for me to cope with, its too much of a big procedure.

Thus I have decided against even going for an MRI, I see no point as I would refuse surgery anyway. I would rather float along on the river of de-nial and take the conservative approach, living on a minute to minute basis of learning how to deal with me new symptoms. If something was to happen that was drastic, if I lost all sensation - I would be rushed into hospital - where they would need a new mri anyway and I would have no choice in the matter.

This new change in circumstances gave me a real kick up to reality. I really no longer care I cant walk out and about so much. My physical abilities provided me with just some fun aspect and financial gain in life. Me real purpose in life is me children, family and friends.

It sounds as though your last operation gave you fantastic results for many years. And doing good research will help you find if this is a possibility again. The surgery I would need is too drastic. I real hope this is not true in your case too.

Wishing you all of the best

[JimG]

My L5/S1 fusion was pretty easy.

Oh...I hurt for about 2 weeks post op, but no pain since.

Truthfully though, I walked around, skied, lifted weights, tried to run, etc. with a broken pedical for 18 months that eventually created a major stenosis and increasing paralysis w/o any pain at all, so your results may be different.

It was my T6/7 fusion another 18 months later that was a b****.

[babyblues]

Pink and Jim,

Thanks very much for your input. I am reading, researching, asking, and learning as much as I can, and every gem of information, especially from others who have been in similar situations, is a Godsend.

*******
Also, thanks to those who kindly pointed out (and I mean that sincerely) that I was hasty in changing my status to "L4-S1, barely incomplete" (I should have added ASIA class D), despite 2 neuros giving me that exact diagnosis. That said, they cannot determine just how much damage was done, or how much of an impingement there is (or how long it might last) until the swelling goes down, so I have a feeling that they've just "lumped" me in to a general category because, as usual, they don't know (said in a whisper) what else to do with me at this early stage. I have to say, I hate steroids because they make me feel wired for sound and I'm NOT sleeping well or much at all--so I'm irritable on top of it, no big surprise--however they seem to be doing their job as there has been a tiny receding of some of the symptoms--I'll take any progress I can get!

However, it was presumptuous of me to try to put myself in the shoes (or wheels) of others, and I apologize for any offense. It was shock waking up to these symptoms (heck, I thought it was just pulled muscles, maybe a subluxated vertebra, a "strained" back as they used to call it) and then hearing the diagnosis and being faced with a hard choice about the surgical option; nevertheless, that did not give me the right to jump the gun and even think that I remotely understand that the brave women and men on this site face on a daily basis--yes, they laugh, they fight, they vent, they celebrate, and even us AB are warmly welcomed, but I seem to be straddling two worlds here!

Since I have retained some motor function and a bit of sensation, and the chances right now of an almost full recovery are 50-50, surgery or no, I don't quite fit into the SCI category, but I am quite limited in what I can (or am allowed) to do, so I'm not AB anymore, either. In a wheelchair? No. Paralyzed? No. In pain, loss of strength/motor function and sensation, particularly in my left leg? Yup--along with spasms, lack of reflexes especially in my left leg, a surprising impact on bladder control, and a need to watch where the heck I put my feet before I put them there so I don't do further damage because I can't feel my left foot at all, and my right foot is most often tingly, as if it's been "asleep." Hence getting around with a walker for now for my own safety...crutches ain't gonna cut it this time; gotta have something more sturdy to lean on when I'm able to get going.

Please be patient with me, friends and loved ones, while I sort this out and if I ask nosy or out-of-line questions or make insensitive statements, please please please tell me to back off, shut up, and leave it alone. I promise I won't take my marbles and go home (tho I might request assistance in looking for them--the lost marbles--since I can't quite bend over to peek under the table, and getting on my hands and knees right now is just not happening, unless I want to spend the next several hours on the floor since I can't get up by myself, either!)

I have nothing but the utmost respect and admiration for those who tackle their SCI with determination, perseverance, and humor; who pursue their lives with such zest and joy and abundance that it spills over to the rest of the world. It is with that Savoir Fair ringing in my head that I will tackle my own path of OT and PT and recovery starting on Monday, following the lessons I have learned on this site and pushing myself to come back as far as I can. If others can do it, I can too.

Again, I apologize for being out of line and seemingly insensitive; I wasn't thinking clearly and did not mean to insert myself someplace I don't belong...and I thank everyone from the bottom of my heart for your understanding, patience, and advice.

to you all,

babyblues

[JimG]

babyblues, on 10 April 2011 - 02:04 AM, said:

Again, I apologize for being out of line and seemingly insensitive; I wasn't thinking clearly and did not mean to insert myself someplace I don't belong...and I thank everyone from the bottom of my heart for your understanding, patience, and advice.

to you all,

babyblues

I went back and read your posts...

What do you feel the need to apologize for?

I didn't see anything.

[mellowgator]

dear babyblues,

i'm so sorry you are having such a difficult and scary time of it. i am concerned for you and hope this can get sorted out without further surgery.

i did undergo a fusion but our circumstances are so different i don't know if my experience will help you or not. please pm me if you want to hear it.

can't offer advice but you have my support.

best regards,


mellowgator

[pinkcloud]

Hi babyblues, I didnt see anything in your posts either.

Disc protrusion is what caused me to have sci. And the pain involved in excruciating, if there is pressure on the cord, it hurts like heck. I know this, I was in agony the first day it happened. So you have my complete empathy on this one. What I will say is that sci pain is sci pain. Whether its tethered, bruised, bit of disc pushing on it etc.....its not all of the same....yet its all horrid. When I worked I had as much empathy for people with little bits of skin cancer cured easily as I did with patients whom had bone cancer and were dying. And theres lots of people out there who think the same as me too.

Steroids saved me life. They are not nice for the short term, but the pay-off for the long term is fantastic. When I get side effects from meds, I just remember theres spme people out there who constantly feel weird due to mental health issues, sick when they are pregnant, tired due to transplants etc etc and at least our side effects lead to a positive outcome.

My advice - if you like the idea of medication, get yourself sorted. Tons of advice here.

I would say maybe you could live minute by minute. If things went drastically wrong then you would have enough to worry about if it happened at that time. And your choice of surgeon? Ask how many successes they have had. If possible try to discover this from the patients angle too. On the net, charities for back troubles have genuine recomdendations from the patients perspective.

Be prepared to know that surgery may not take your pain away, but it can help to stop things deteriorating further.

Keep writing, there will be lots of people out in in cyberland who will be comforted to know they are not alone in their symptoms.

[Narishka]

Hi there! This thread sparked my interest because my uncle has a bulging disc and has had a spinal fusion, but his pain is still incredibly bad. I would love to find any possible help for him if anyone has any information. It seems he's tried everything under the sun, but for 20+ years now he's been wracked incessantly by excruciating pain (recently he's been vomiting due to the pain being so intense, and he's losing the will to live :'( My heart is breaking for him.

I used to mistakenly think that a doctor should just cut his spinal cord so that the pain would stop, but I've learned from this forum that it doesn't work that way. I'd been desperate enough to think that way for myself at times, due to dealing with chronic pelvic pain in my own body (but my pain isn't nearly as bad as his). I've learned from the kind folks here that this wouldn't stop the pain, unfortunately..

Anyhow, all I can say is that the fusion didn't seem to help my uncle very much, but then everyone is so different.. I don't know how it would affect you.

I will be interested in reading over the whole thread carefully..about to do that..and hearing any other responses that are offered.

Keep writing everyone...a forum like this can be so helpful for sharing experiences and ideas..

Tracy

[Narishka]

pinkcloud, on 10 April 2011 - 11:42 AM, said:

Hi babyblues, I didnt see anything in your posts either.

Disc protrusion is what caused me to have sci. And the pain involved in excruciating, if there is pressure on the cord, it hurts like heck. I know this, I was in agony the first day it happened. So you have my complete empathy on this one. What I will say is that sci pain is sci pain. Whether its tethered, bruised, bit of disc pushing on it etc.....its not all of the same....yet its all horrid. When I worked I had as much empathy for people with little bits of skin cancer cured easily as I did with patients whom had bone cancer and were dying. And theres lots of people out there who think the same as me too.

Steroids saved me life. They are not nice for the short term, but the pay-off for the long term is fantastic. When I get side effects from meds, I just remember theres spme people out there who constantly feel weird due to mental health issues, sick when they are pregnant, tired due to transplants etc etc and at least our side effects lead to a positive outcome.

My advice - if you like the idea of medication, get yourself sorted. Tons of advice here.

I would say maybe you could live minute by minute. If things went drastically wrong then you would have enough to worry about if it happened at that time. And your choice of surgeon? Ask how many successes they have had. If possible try to discover this from the patients angle too. On the net, charities for back troubles have genuine recomdendations from the patients perspective.

Be prepared to know that surgery may not take your pain away, but it can help to stop things deteriorating further.

Keep writing, there will be lots of people out in in cyberland who will be comforted to know they are not alone in their symptoms.

Hi PinkCloud,

Do you mind if I ask..in what ways did steroids help you? I just wrote about my uncle below..he has a bulging disc and has been suffering from excruciating pain for decades. It just seems to get worse and worse, and he's been saying he no longer wants to live..it's breaking my heart. He is not paralyzed, but is extremely disabled due to the chronic intense pain. He's been vomiting lately due to its severity..and I so want him to find something to ease his suffering.

Thanks for always being so helpful!
Tracy

oh, and he's on heavy pain meds..but they just don't cut it. It's just awful to watch him go through this.

[mellowgator]

dear tracy,

my grandfather suffered this condition for decades. he finally had a morphine pump installed and that gave him some relief. he also would take his pain meds with wild turkey to give them that extra kick to work just a little better. he never was without of pain but with the above methods he managed to hang in there with it. he also had a great attitude and never complained although we all knew how much he was hurting. he even manage to keep his sense of humor through it all and i think that helped him a great deal.


mellowgator