Help needed after spinal fusion

Bones, joints and muscles
1

First off all to anyone who as had spinal surgery or is suffering witb back pain still i really feel for you and wish you the best with your treatment and i know whats it like as i am still suffering with pain after surgery in Feb 2015 , as then my normal life ended 3 years ago.

Not going to bore you all and give you a full story on my back but 3 years ago having had my back confirmed with prolappsed L5/S1 disc i tried every procedure going , steroid injections , Discography , Chriopractor, physio, back course clinic.

As i could bearly walk , pains in legs , trouble going toilet even seeing chroipractor he wouldnt touch my back as my disc was bulging from the side.

Anyway having not much choice elected for surgery in a way it was to change my life forever.

Having spent over 7 hrs in surgery and had fitted a fusion on that particular disc with rods and screws surrounded by cage and artificial animal bone to make it strong.

Stayed 5 days in hospital and then it was recovery i thought , the next year or so was horrendous had some really dark days with my back aching all time and these continue to now , for about 4 months this year the pains lowered and thought yes im getting better but then couple months later the pains in my back started flaring up again bearing in mind i was on still fairly low dosages of morphine opiates then i started having pains going down my legs again , not as bad ad before but noticeable u feel tingling sensation.

Anyway having thought i was getting better to finding out i was getting worse as now my back wakes me every night with the pain and then i nodd off during day time due to the strong meds im taking and probally due to me being tired in middle of night.

These past few months ive seen my doctor numerous times telling the pain is getting worse to be told all he can do is increase my meds and to accept at 45 years of age i wont get any better which you can imagine at my age its upsetting and frustrating that i cant work as before , i can bearly walk a few feet even to consider doing gym work is impossible and dont even have a social life no more as its no fun trying to go out when you have all the above holding you back.

My doctor as referred me to the pain team and between them they cant decide what dosages of meds should i be on as the doctor from the pain team says you are on too low dosages and then your own doctor too shoot what the pain zeam advice inbetween its me thats hurting so now having seen the pain team ive got to wait for her to write to my doctor and then too see if my doctor will increase my meds as im on low dosages of oxycodones and oxynorm and lyrica so curious to no what other people are on i also take amtripiline in evening to try and help me sleep which is a joke so thats my first question.

Secondly the pain team reckons my other discs could be under pressure from the 1 st op and that might be the reason for the pain she even said to me yesterday that spinal fusion are good for leg pain but not so good for lower back so that filled me with positive news , not , . She says having some more spine injections may help so ive agreed so as anyone else had spinal fusion and then had spine injections after did it help or is it a waste of time so curious to no on that.

Finally just want to say having worked all my life and being active by walking to work each day and going gym and going out with my mates on friday to now ive not worked for 3 years can bearly walk few feet so have to use walking aid to support me and use a mobility scooter to get out as i just stayed in otherwise , taking very strong meds all day and living with all the side effects of feeling tired all day some days worse than others , having to go bed early around 6.30 as the pain gets worse in evening so find it easier to lie down , have no social life no more .

So to anyone who is thinking of surgery just dont think this will be the cure as i did and nearly 2 years after surgery im just as bad apart from the leg pain.

So its very tough as im living on benefits and doctor as retired me from work at 45 and work are trying to settle my phi claim so finding live very tough at the minute and if i didnt have my wife or kids for support i dont think i could carry on as some days i think whats the point as im in pain 24/7 have to take meds all day just to subdue some of the pain and all other stuff i cant due as before the operation as now its not much of a life.

Sorry for being negative at end its just me feeling frustrated for lack of support from my Doctors as i ask them will i get better to be told i am not sure and then they wonder why you are fed up.

2

Dear Jamie;   Reading your entry I just kept thinking that the medical system has failed you....is there anyway to get another opinion?  It sounds like unfortunately need surgery again.  This is what I'm facing as my back (L3) is causing me the same type of pain that I had before my L4L5 fusion (cage & screws)  exactly a year ago.  

If another surgery is required which is not a fun process, then so be it.  I don't want to be in pain 24 x 7.

My surgeon works on trauma patients who have had their spine's shattered and has been able to repair them.  

Don't give up....pain pills are very hard on your stomach.  My 2 cents worth is to demand treatment for your back.  If your surgeon won't do it get another one....

You have to be your own advocate for your health.  Don't give up...you're way too young.  Be strong for you and your family....

3

Oh Jamie, I wish I could say something positive to you.

This coukd be me writing what you have, exactly the same situation years ago, even the same level fusion l5/s1.

All I can say is, you have to learn to live with it, it's always there, the pain, the tingling and burning in legs, the back pain, no social life, having to lie down after trying to do anything, the lack of hope for the future.

Sleep. I take loprazolam.

Pain in legs. I take Gabapentin.

Spinal injection. Had lots. Botox. Trigger point. Steroid epidurals.

Spinal stim trial.

Nothing has worked for me.

Years later, after feeling like you do now.I realised the Dr's were right. I have to live with it

There is no other choice. You can spend the next few years being down and depressed, but at some point, you realise, your life isn't going back to what it was, and you have to adapt.

It's not easy to get your brain to accept this, but it's the only way forward.

I had so many years trying everything possible, it only caused more pain.

If nothing else can be done, don't put yourself through it.

I now have arthritis and had both knees replaced, and need my hip doing, just to add to the fun.

 

4

Ah Jamie I totally get it and please do t apologise it it pure torment and until your going through it no one knows but we do on here, firstly brilliant news that your wife is supporting you and secondly I had the same as you 13 years ago I was 32 now 45 same as you I also have great support from my husband as I havnt worked since, I was a fitness instructor so you can imagine my frustration of not being active and I was really fit and strong.

Iv been having faucet joint injections at 4 levels with the pain team and they work brilliantly for me so fingers crossed they will for you, I must warn you tho there very uncomfortable but worth it, I have them every 4-5 months and lost count but I think it's about 12 times iv had them now, I also suffered with chronic upper pain straight after surgery but was told this is because the upper back has to work harder now so left it for 7 years until I couldn't take it no more, like you I was in a very dark place, I had an MRI which showed a thiracic arachnoid cyst compressing my spinal cord which will leave me paralysed if they removed it iv then gone on to develope cervical degeneration with bone spurs at all levels and c6-7 bulging disc, this causes my neck to go into spasm and believe me it's horrendous

I was on morphine/fentalyn... different types off and on for 5 years but iv just done cold turkey which was hell and came off them, i was like a zombie with no quality of life, I'm in chronic pain daily but at least I have my mind intact which on the meds I didn't and felt I was missing out on my family so I have to just bare with the pain, I try not to over do it and have learnt to ask for help which is something I find extremely hard but realise that if I don't I will end up laid up for days, get booked in for the injections ASAP as not only did they help with pain but movement also, let me know how you get on and where here for you when your having a bad/dark day, 😊

5

Hi Jamie

I am so sorry for the pain and trauma u going through I have damage on l4 and l5 disc was booked for surgery last Sept but it was cancelled and up until now I'm suffering I had my tailbone that dislocated as well.

Went into theater the doc tried to manipulate the tailbone bak into place and had injected me there wen I woke I felt a bit better I cud sit without sharp pains in the butt. But after a year I get told that my spine seems fine which makes me wonder why they booked me for discectomy last year but now say It seems fine I have those leg pains burning hips and the entire lower torso is paining alk the time.

I have been referrer to another ortho to do discectomy my doc did suggest epidural injection but I feel it will only be temporary now I'm scared after reading about ur story with surgery I'm a bit confused I just like u am fed up no social life legs hurt just want to slp and life just passes by I have had 8 facet injections in august but did not help so I'm still puzzled thinking maybe surgery may not help doc has warned me that I my prolapse after few years exactly as u said

6

Ah this is just awful that people are suffering but surgery dosnt help in a lot of cases but makes us worse, I wander what sort of money is actually put into research for spinal problems

7

Jamie270771,

I know your story it's the same as mine, but I've been living like this for 20 years as I got hurt at 25 and back than they didn't do the cage plus I'm consider a failed fusion plus neck is fused from a fall down some stairs ended up doing the Nevro couldn't take the pain anymore went in for the neck injections to wake up crying in such pain and thought I was paralyzed my worse fear, that was on 10/27 and I go to Drs on the 14th of November to discuss to get this spinal cord stimulator out as it's pushing on my nerves and I can hardly sleep walk or anything numb bring back the memories from 20 years ago n yes I was thinking of ending it, I also was on that amptryline too did nothing, I'm now on zanaflex and valium to sleep without it I'm a wreck on methadone for pain, yes they are pill form 20 years ago they found out it helps with pain but you go through withdrawals like a junkie would IU ts awful also oxycontin too, I did want it to end it all but why should I give them that satisfaction too they took my livelihood but they are not getting my life. I have a beautiful daughter who will be 27 Nov 13th married and I have two beautiful/handsome grand babies Ethan 3 Haley 2 so I'm staying on this earth for them even if it's in a wheelchair, but like you I'm 45 and can hardly stand going to the store nevermind going out with friends cause you have to plan how long are we walking sitting it's frustrating. Don't give up as I'm not. Life is to precious and I'm fighting til the end, try and smile I try and tell everyone that because it will boost your mood, even for a moment. I smile put my feet on the floor and try my best to get going on, but with this pain now and the wait I'm hoping that the damage isn't already done and can't be fixed, fingers crossed on getting this out as soon as possible, stay positive you are alone.

I'll keep you posted with what the game plan is

Smile, try too. See if it works a little bit

Take care

Cynthia (Cindy) from USA

8

i deff agree and it took nearly 10 months to see the pain team again i think im gonna go back to my doctor and ask him to refer me back to hospital but im scared it could show failed fusion as i cant go through more surgery its like living a nightmare that never ends, appreciate your reply.

9

thanks laura im deff not going through more surgery i rather be in a wheelchair than that which is horrible really.

10

thanks caroline i will deff keep everyone in loop and appreciate your kind words i cant believe what u been through and life just shows you there always somone who is worse than you and you must be really strong and had support for eerything they done it sounds like my journey is just beginning i will deff push them injections quickly but cant go cold turkey im not strong enough ive tried and the pain is too overbearing it makes me feel sick as well . x

11

thanks for your reply and sorry u are going through this pain as well i would deff not?rush in too surgery but if u have tried everything else like i did then u may just have to bite the bullet as they say but be warned you may or may not get the outcome u are looking for it really is like russian roulette but wish u well my friend and hope u get it sorted better than me x

12

cynitha your story bought a tear to my eye and u are one strong cookie for going through what u have been through and it sounds like my fun is only just starting , i will deff and try and be more positive and sounds like i need to change my mindset but its hard when pain is all u can feel and then that impacts your mood and well being , please keep me posted and i will do zhe same my kind friend and any game plans or tips i would deff take on board im trying a tens machine next , hoping that helps bit xx

13

No definitely not cold turkey you have to be in a better place mentally and your definitely not ready to come off meds yet youl k kW when your ready and get help from your GP to taper down not cold turkey please, if I had known what hell it was I wouldn't have done it but I was half way through and thought there's no turning Back, I'm definitely not strong I just don't have a choice but when you've suffered for years it dosnt get easier you just learn to cope differently with it, I wish you all the best and hope you find some peace with it all and keep in touch with what's going on 😊

14

Thanks Jamie,

They have been saying that for years that I am a tough cookie but I do crumble here n there also, just remember the key is to take your meds if you have any plans and always carry them with you or just a few in a older bottle so you don't lose them, happened to me and they don't give refills ( someone ) stole them I should of had them arrested but I don't have a heart like that, I have a heart of gold any I found a saying instead I will find it and post it for you I do I ask God all the time, why why me? What did I do to deserve this the pain the tears the heartaches, I reached for the Bible and started to read again, everyone keeps tellinge god has a plan but how can he if it's this bad? I know o question it alot. But I do my best to do things but try and time them with my meds but sometimes being in the car is way to much, just please think positive I'm going to find a support group maybe I can go to, after this thing gets out and I hope n pray that the damage isn't already done

So with that the tens machine is a start but be very careful if it comes to the spinal cord stimulator's as I was excited thinking yes I'm finally going to get off or cut the pills out of my life, of course another let down.

But I will put a smile be pleasant to others say thank you, please and everything in between, as I said to my boyfriend I wouldn't wish this on my worse enemy, i don't have the heart to do that, and also I always post on Facebook about walking in my shoes you would fall the first step, noone understands that doesn't know what pain is, til they are in this kind of pain. Thank you for listening like I said the tens unit is a great start and when and when you feel a little better try to do a little walking everyday or even a few steps but don't over do it

Does great for the mind

Feel better and keep me updated as I will update you on my progress. And never stop fighting or smiling, your friend from across the pond

Cindy

15

jamie firstly amatriptline is mainly for depression but also helps with pain, certainly not as a sleeping aid so dont think it is. I understand completly how you feel, as I have had MS for 15 years with crippling pain. However I had a brilliant company I worked for (BAE) who made huge committments to changing my office, installing ramps  and even bought the mobility scooter I still use, all this allowed my to work right up to 2 years before retirement when I had to say enough was enough as I was then in too much pain. I also attend as many reunions with my military buddies and have a brilliant time, mostly drunk out of my skull. I do this despite the pain which is around 6/10 despite a cocktail of tablets. The point I am making is dont give up get out and have a few with your mates, despite whatever pain you are in grin and bear it.

16

Jamie

Agree with Steven totally, didn't want to tell you what that amatriptline was for but they say it supposed to help with pain n sleep nah was on for many years didn't do nothing but make more depressed

Take care

Cindy

17

If you ask almost any medical professional, not including the doctor that will do the surgery,they will tell you (if they are truthful) that very few back surgeries are successful.  I do sympathize with you. I had a back surgery 5 years ago and after injections, opieds, and now an implanted stimulator still have extreme pain. Would I do it again? Probably!  You always holdout for hope. I just look around and try to count my blessings. I hope the medical professionals come up with something   At least we both have families. Good luck. 

18

Hi Jamie,

I'm not going to give you a full history of my experience but please know you are NOT alone! I'm 29, no social life, lying down all the time, ice packs on when I go out to numb me up (probably not good to have them on when your going out and using the muscles but the pain too much I bear). I've started a group on facebook so if you're on it please join it's called the brentwood pain support group. Love and prayers to you and all those suffering on this site

19

Thanks Gabriella for your message , i am on facebook and requested to join that group so looking forward to talking to fellow people are suffering chronic pain like me hoping to get some support and share our pains.

Regards Jamie

20

Hi Jamie. Think I've accepted you and really glad to have you on board! Feel free to post on the wall anything you wish related to pain.