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grade 4 l5 s1 - still in agony after having fusion...

Started by Melissa25 on 08/03/2010 9:24pm

I am a 25 yr old single mother of 2 who was diagnosed with a grade 4 slip on my l5 s1 vertabre (spondylolisthesis) mid last year, i was in alot of pain and was unable to move with pain radiating down both legs so in september last yr i was sent in for surgery after being told i had no other option.

I had invasive surgery where they placed a rod and 6 screws into my spine in attempt to fuse it, as i had a grade 4 my vertabre was completely unattached and they could not move it back in line so it had to be fused in the postion it was in, they also cut bone out of my pelvis to place into my spine (not exactly sure why they did that or where it went) my spinal cord is now curved due to the slippagge too.

Recovery from this operation was hell i was bed ridden for four months and had to start from baby steps in attempts to walk again without falling over.
The pain that was radiating down my legs subsided alot after the operation, but it is now starting to come back.

It has now been 10 months since my surgery and im am in agony the rod that they placed in my spine is sticking out of my skin (has not ripped through the skin tho) it digs into my car seat when i drive and digs into my bed if i lay on my back, ive been on so much medication and tried every cream, lotion and rub possible but nothing gives me relief. have recently had a xray to see if the metal work in my spine has moved but after comparing this xray to the one done in september after the operation it seems to look like the metal has not moved so i do not understand how the rod can be sticking out the way it is even my surgeon is stressing about having to deal with this. I feel like im jus being hand balled around cos no one wants to deal with this as its too complex.

I dont sleep and spend every day in agony whilest trying to be a mum and study to be a teacher.

I have another MRI and a app with the surgeon who performed my surgery in a few weeks to discuss what he wants to do, the out come of our last meeting a few weeks ago was that he wants to cut me open possibly through 2 operations one through the back and one through the front like a c section and remove all the metal work that he put in there (if it has fused) and if the MRI shows that it has not fused he said he will have to reposition the screws and rod that he put in place as it is causing me so much discomfort and pain.

I was told when the fusion was done that it would be in there for life so to be told now that im going to have to under go surgery to have it all removed i am really very worried and scared.
My body did not cope well through the first operation i had a resp rate of 2 beats per min and was in screaming agony even though my GP had me on about 7 different types of opiods at one stage when i was discharged from hospital.
I was given no rehabilitation apart from a 6 week pain clinic course to help me cope basically i felt like i was doing it all on my own.
I took myself off all my medication because i felt like i was in a coma for 4 months as i spent every day in bed unable to move and i got really sick which has had me in and out of hospital for the better part of this year.

I would really appreciate any advice that anyone can give me as i feel i am at my breaking point and can not take much more of this pain or life style that i now have, i used to be very active with sports and playing with my children now i cannot do the every day things people take for granted i cannot even go food shooping with out ending up in tears from pain overlaod.

I have recently been put back on oxycontin after trying to bear the pain for the past few months just on 100mg durogesic pain patches (that i cannot use any more due to alot of side effects) it has jus got too much for me to handle.

I Have tried a whole list of medications that dont seem to help now im at a point where i dont want to put all this nasty medication into my system, surely there must be another option......

Am desperate and appreciative for any advice on this matter....Is there anything i can do for relief and should i under go this second surgery i dont think i can bare to go through all of that again but i cannot continue to live like this its too much pain for even me to deal with.

Thank you for your time ...........

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17 Responses

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I have same problem.I am 8 months out of 2 level lumbar fusion.My pain is exactly the same as before the surgery but my leg pain is waaay worse now.I dont understand a Dr that would leave a disc space the way my l5 s1 disc is in the pic.As you can see my doc got the spacer beetween my l4 l5 space and was able to get the bad disc out of that area as well.But the l5 s1 space he was not even able to get out because it was crushed so bad.Now from what I have researched when someone has crushed disc that bad they go in from the front and the back but my doc only went in from back. I am positive that is why I still have the same pain as before. Also he was only able to get 5 screws in my spine instead of 6. He said if he would of put the 6th screw I would be paralyzed on my left side??The 6th screw woulda crushed the space worse and caused more damage.Anyhow I feel these dr's most of the time know they wont be able to help you but they have to maintain their bottom line.it's all about the $ Benjamins and we are the victims.We go through these useless surgeries for the benefit of no one but the dr's wallet and hospitals quota.I have seen 2 other dr's since surgery which one said he would of went in from front and back and the other said I wouldnt benefit from any surgery and he would of never done surgery on me in the first place.He said he would of told me to get on long acting pain medication and that would be the rest of my life.So I went through and suffered like you for absolutely nothing at all but more pain and stronger meds.I have been thinking about suicide a lot lately and dont know what to do.I hate living like this in severe pain allday and night.I cannot sit and watch a movie with my wife or sleep lying down flat I have to lay on my side at all times.I have severe burnig pain in lower back allday and night and severe burning down the back of my legs.Everything seems 3-4 worse since the surgery and thats why I put it off for 10 years.I was in a bad bike accident 12 years ago and was told then I needed 2 level fusion.Well I was 24 at the time and was to afraid of fusion.By the time I turned 35 I could barely walk or sit at all.I take 4- 80mg oxycontin and 8- 10mg endocet a day and still I suffer horribly.Doc says all the same stuff,I will heal with time and yadda yadda yadda.They are all crooks if you ask me.As soon as they operate on you they are done forever with u.Atleast my doc was.Anyway has anyone else suffered like this or had the same kinda problems as me out there and wanna comment.Thank God I was able to find the greatest most understanding Pain management Dr in the world and he has made my life somewhat better.Atleast with the meds I can get some things done and have somewhat of a life but without them I would find the 8th level of parking garage delightful:)GOD BLESS..

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I am so sorry for your pain. I don't know what state you reside in or if marijuana is legal for pain management and while I have not had the fusion surgery yet, I have herd so many people discuss the relief they feel from marijuana. I have also heard that there are two types and one that helps with the pain but doesn't leave you feeling as groggy. I am not sure..but just a suggestion if it is legal and an option. I suffered from trigeminal neuralgia ( a disabling condition) of a nerve in the brain stem. I could not eat, drink or even talk without excruciating pain and if I had not had surgery, I felt much like you...like I had nothing left to hold onto. There is hope and there are second opinions and pain clinics...don't stop searching for the answers. Someone out there may help.....
Best wishes to you

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Melissa, I am sorry to hear about your problem but I have a very simular situation, mine is a Grade 3 slip and as I have had my Spondy since birth the Surgeon also wants the fuse where it is at and not move it back into position. He says I run the risk of paralysis in a foot or more nerve damage.
How are you now? Did you have the app with the surgeon?
I am getting a second opinion next week so would love to know how you are going. I am in Australia too, Bunbury, WA, I wonder if which surgeon you have.
Hope to hear better news from you.
Ash

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simsy Ash
Hi. i am the same location as you actually. how r u? my condition is apparently from birth too. and my spine also could not be moved back into place. the pain has got much worse i met with my surgeon last week i am going back in for surgery when a spot opens up, they are going to remove the rods and screws as the rods are causing all the grief, if the fusion was sucsessful they will leave it without the metal otherwise they will put smaller rods and screws into my spine and possibly will need a bone donor as they cannot take anymore bone out of my pelvis to help fuse my spine. how do you cope with the pain? i have been put back on oxy norn and oxy contin but i dont like taking them, also do not sleep much at all due to the pain have tried numerous sleeping pills without any luck.
Hope you are well
regards Mel

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pamlewis01
hi :) thanks for your reply.
marijuana is not legal here but it has been suggested to me by a few people now. but i have been told that i cannot smoke or my bones wont fuse properly, want to ask my doctor about this just unsure if i should :) its getting to the point where id try it anyway due to the pain getting worse everyday now.
thank you for the well wishes

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Hi Mel, thanks for your message. I would like to discuss more about our situations but not sure how to send my info to you. I'm sure you can work out that if I say I work in Sales at the Holden dealership in Bunbury you will be able to track me down. As I am going down the same track as you I am not sure I can give you advice but I am sure you can give me some.
Please track me down, I am actually seeing another surgeon tomorrow.
Ash.

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Hi,
First, PLEASE check w/your Doctor about another MRI (Magnetic Resonance Imaging), I have been told it is a NO NO. The MRI is magnetic test so it will pull on anything in your body that is magnetic - like pins & rods. That is why you have to take off all jewelery (rings, watches, etc) prior to getting into it. I've only been allowed to have CT scans since my surgery.

Fyi, I had spinal fusion (L4, L5 & S1) Mar 09. I can simply say - I relate. I will say that neurontin has made a difference for me, I take about 2500 to 3000 mg a day. I still have back pain and leg pain issues but not to the severely as before. As you, I try to stay off the "hard drugs" unless absolutely needed - or my wife tells me its time :")
I discovered last month that life is more bearable when I wear thick soled shoes/flops, etc ALL THE TIME. I can't go to the mall, store, zoo, park, etc without having incredible pain w/in 5 minutes as the concrete wreaks havoc on my back, legs, sciatic nerves, etc. So, strong advice is to invest in a thick soled shoe and wear them the second you get out of bed. The goal is to learn WHY and WHEN do you hurt. Is it laying on your back or side, walking on concrete or grass, sitting on a metal chair or cushioned chair, sitting/leaning to the left/right or straight up and the list goes on. Discovering what feels hurts the worst is knowing what to avoid.
Lastly, I have had to come to grips with the fact that I can NOT do what I use to - picking up weights (groceries, kids, etc), even pulling "big" weeds out of the garden when I haven't watered to loosen the soil. After 20 months since my surgery my wife finally helped me to humble myself and use one of those courtesy wheelchairs in the store - I hated doing it BUT the truth was my back didn't hurt so bad like it always does when I go to the store. Learning what hurts sadly tells me that I am handicapped and that is the real mental issue, telling my mind that I (bold that letter) am handicapped. I simply have to change my life style to accommodate my handicap.

I spent 25 yrs in the Army and was EXTREMELY active so it may look easy to type this but its still incredibly tough for me too as I want to play sports w/my kids/family/relatives/etc, run, help ladies w/strollers or groceries, and the list goes on.

Remember, the glass is still more than half full - life could be a whole lot worse (I know as I've seen it first).

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Ash
my email address is gawjus23@gmail.com

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Omg hun, I'm so sorry for everything u have had to endure!!!!!!! I just couldn't imagine...I'm here for conversation I have had a fusion with instrumentation at l5/s1 due to a grade 2 or 3 spondylolisthesis whuich resulted in significant root nerve compression that caused severe foraminal stenosis. I had my surgery feb 22nd of this year. I am 6 months post-op. I don't have the debilitating ailments that u have but I'm here to talk *hugs*

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Squitatious - wow, that really is great to hear - that someone is doing okay and even better than okay.

Quote from medical file of MRI:
L3 disc bulge w/milld neural formaminal stenosis
L4 disc bulge w/eccentric protrusion resulting in bilateral high-grade neural formanial stenosis. No central canla stenosis
L5 disc bulge w/the aformenentioned height loss & anterolisthesis of L5 on S1 resulting in high-grade bilateral severe neural formainal stenosis slightly worse on the right. Also, iregular ligamentum flavum hypertrophy w/slight impression upon the right posterieor thecal sac...
I have degenerative disc with istmic spondylolisthesis L4, L5 & S1 with "just" degenerative disc disease of L3. end quote

Never did figure out exactly what all that meant, just knew that I was already having paralysis in my lower body for quite some time. When folks read the MRI they said I shouldn't be walking which kinda scared me. Due to that I had spinal fusion (L4, L5 & S1) the "Gill Laminectomy" with pipe, screws and cage.

I have daily pain, dizziness from med's (at least I think its the meds lol), can't walk a long time, can't walk at all on concrete (in 5 minutes I'm in mega pain for rest of day), can't pick up any weight over 15 lbs w/out having major pain in back & legs for a couple of days even though I take meds, spasms/cramps in calves that are a 10 on scale 1-10 that wake me up in the dead of the night, tingling/numbness in calves/heel/feet, "shooting" pain in rt thigh, and "finally" I can't sleep as the pain wakes me up all the time. Oh, and saw the Doc last week w/my wife and told him my issues and asking what can I do, is there anything to stop the pain, etc. He kicked me square in the "pants" and said that's life, you're gonna have to get use to it as that's now your life and then suggested I apply for SSD (social security disability). My wife and I were in total shock - and pain like OUCH kick a guy when he's down, and real hard. On the positive side (???) at least he didn't beat around the bush. So, I'm learning how to be a happy camper 24x7 :")

So, I have to put on a happy face and realize that life could be worse, even though sometimes it feels like I'm already there while buckling down and trying to learn this new life so I can enjoy this chapter of my life too.

Any suggestions, on anything, I'm all ears

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Inticamper *hugs* I'm sorry to hear about ur debilitating pain as well!!!! Unfortunately I believe my root nerves were compressed for far too long before I got any help. Some drs thought it to be all in my head. Others said they have my exact condition and ran marathons. Wanted ME to get a psychological evaluation. Didn't believe I had organic reasons for my symptoms. So I had 11 months of significant root nerve compression that forever altered my gait and gave me horrendous pain in my legs for the first time in my life. I've had back pain for 7 years but never into my legs until march 21st of 2009 and it came on suddenly on morning and within one hour, I couldn't control my legs to walk normal, was very heavy and sluggish. The pain set in my legs within 24 hours and its been my constant companion ever since. Far surpassed any pain in my back. I'm on gabapentin for the nerve damage pain in my legs. It may always be with me the pain and weakness. We'll see in another 6 months when more nerve regeneration has occured. There's my story lol.

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sounds like we some similar issues. My problem started 2 decades ago when I was jumping out of airplanes in the military, had a bad jump. The Drs back then took x-rays and said "drive on" just remember to stretch, put some ben gay on, and hydrate lots - oh yippeeeee. Then fast forward 23 yrs and many x-rays and multiple times of paralysis below the waist and some really smart PA says hi Soldier, have you ever had an MRI??? Of course not, so he got me one and it revealed I needed to quit running 10 miles a day, no more parachuting and needed surgery like yester-year.

Yeah, I have pain everyday too - mega OUCH. Main issue I'm trying to deal with is the mental part, that I'm now handicapped (hate saying it or typing it or having my license plates telling everyone) - that's very hard to adjust too after decades of being extremely active. Did I say extremely difficult to handle? Wow, its like people say "oh, wantta play football", stare at me when I don't help some lady out, stand on the sideline while everyone shoots hoop, can't help my wife carry in most of the groceries, stand in the yard while everyone else cuts down a tree & cuts it up, hauls it away & cleans up - then I suddenly break out in massive pain & I haven't even done anything except take a handful of pills that didn't even work. Yeah, its a whole new life now. Well nuff whining, time to get some med's, eat some lunch, and read a book.

Speaking of food - since my surgeries (had 4 in 8 months) I can not get full, I am always hungry and so now I've gained a bit of weight. How do you (or anyone out there) exercise? Can't do sit ups, run, elliptical hurts and I don't have a swimming pool or lake nearby to swim (that is the least painful exercise). Would really like to work on my flabs, er abs :') and lose 20 or 30 lbs or . . . Thoughts????

I sincerely pray things work out for you, really do.

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Inticamper u gave me my morning chuckle lmao. Our activities in life catch up later to us don't they. I was a gymnast in my childhood. We didn't know I had pars defects that would eventually turn into pars fractures resulting in isthmic spondylolisthesis later on in life. I do a lot of walking. Swimming and yoga and pilates are excellant and once my back has fused a bit more, I can do stomach crunches:)

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Igreatest blessings to u inticamper, it must be so frustrating to go from the level of activity u were at to what it is at today!!!!! *hugs*

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Well its been awhile and I wanted to check back in and see how everone is doing. I am 11 months post-op from my back fusion and leg pain is just a faded memory, weakness is practically gone as well in my legs. My lower back where I had my fusion is still alittle tender and sore, but other than not being abloe to handle bending for long periods of time...I'm almost back to where I was before all this started!!!! I wish u all the best!!!! *hugs*

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I am so sorry to hear of your plight. My friend recently had insertion of a 'spinal stimulator' to control her pain after years of various medication/treatments/surgery. This has been very successful so far. You may want to check this out. Good luck.

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