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Post surgery recovery

ChakalCChakal Posts: 7
edited 09/06/2015 - 9:16 PM in Back Surgery and Neck Surgery
I had spinal surgery March last year. It was a disc replacement in the lower back. I had been dancing around the surgery for years, as I’ve had a bad back for more than 20 years, but there’s never any certainty with surgery – especially spinal surgery – so I never had the guts to actually go through with it before last year. Eight years after my lower back pain started I also got diagnosed with Dystonia (Painful Leg & Moving Toe). I finally decided to go through with my surgery because it was getting worse and worse and at the time of surgery I had not had one decent night’s sleep in at least a year. But obviously there were no guaranties!
After my surgery it took me a couple of month to get back on my feet. I started at work after 3 months and not full time right away. But I was definitely slowly getting better. Eight month after my surgery I get this crazy pain in my feet and cramp that just will not stop. My Surgeon advises me that it is my Dystonia mixed with something called Burning Foot Syndrome (or Warm/Hot Foot Syndrome) and that it will be better in time. During this time all I could do was lie down and that wasn’t pain free by no means, but it was better than anything else (walking, standing, sitting).
It took me 6 weeks before I could get back to work and I started slowly this time too, but this time with my normal hours, but just doing only what I could actually manage at work. After I started at work I could barely manage to get through a day. I would go home and straight into bed and I couldn’t even brush my teeth or make any food or get any food, as I simply could not bear to stand on my feet one more second.
Finally I slowly got better and I worked hard to regain my strength and almost did. Then it happened again – A year and a half after surgery.
I stuffed full of pills, but they don’t seem to help, I’m tired, frustrated and I have very little hope for the future. What’s the use of a back that doesn’t hurt, when all you can do is lie in a bed all day 24/7. After 6 weeks I tried getting back to work. Managed a week and then I have to lie down again and be off work.
To be honest it doesn’t feel like it’s getting any better – quite the opposite! Furthermore my symptoms seem to change – and still do after surgery. Right now one of the new things is that when I need to go to the toilet (not just to pee, but otherwise) I get cramps. When I have been to the toilet the cramp doesn’t disappear, but gets better.
I have to lie with my legs bend. If I stretch them out I get cramps in my toes and it can go on for hours. Before my period the cramps will often become a lot worse.
The last 3 years have been hell (up to my surgery as well as after) and I’m at the end of my rope now – Don’t know what to do! I’m tired, full of pills and yet I still have cramps to the level where I have to be off work for weeks. I’m weak, lack focus and just sleep or lie awake wondering what else the future will bring.
Does anyone out there have any suggestions? Have anyone tried something similar? Been in the same situation?
Sorry for the long message!


  • LizLiz Posts: 7,832
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    Spinal stenosis since 1995
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  • Sheri76Sheri76 Michigan Posts: 497
    So sorry you have to deal with such misery. I cannot relate to the duration and intensity of your pain, as I believe mine is more common, caused by something I may have done, or over done. By that I mean I have had frequent left toe cramping since my L4-5 fusion last March, usually only while laying down, and standing and stretching will relieve it. Has happened in PT pool also, when I start to let my legs dangle down in deep end. Then I have to return to slope before deep end, and stand & stretch.

    I'm still off work, and I pray when I do go back I won't have to deal with anymore leg pain like prior to surgery. By all means I shouldn't, but my job does require me to be on my feet and moving constantly. Because of that, I do have to wear orthodics in my shoes....just had new ones made, figured new ones would be better for post surgery. I've had to give up wearing heels many years ago. Just the slightest change in heel height can cause muscle spasms in legs.

    The cramping from bowels I'm no stranger to, have IBS, and sometimes the cramping/pain feels like there is an angry alien form working its way through my insides. I have to be mindful to make sure I'm hydrated. Taking certain meds and calcium can slow my bowels down dramatically, which can quickly cause further pain.

    I'm assuming your doctor has regular blood work drawn for you, making sure your levels are in good range, screening for diabetes, or other deficiencies.

    Keep us posted, hoping you get some relief soon.
  • Thanks Sheri76 for your response. I'm sorry to hear about your situation! ...and some of it sounds a lot like my situation.

    If I only knew what brought these flare-ups/attacks on I would happily not do them - I think...except if it is not doing anything and just lie in my bed 24/7 I might not be so eager. I'm desperately trying to eliminate things I eat one by one to see if it makes any changes, but so far no success. Next on the list is wine of which I'm only having the odd glass here and now - nothing major.

    I have a good GP who listens and she's taken all sorts of tests, so no complaints in that department. I have been screened for diabetes within the last year and she's taken quite a few blood tests.

    I've been told that it's nerve pain, but - I might be a wee bit confused here - I didn't think nerve pain could show as cramps?

    I've also heard the nerve pain can continue for years - hopefully it will stop at some point.

    Everything still seem to be changing after my surgery and what was there last month isn't necessarily there the next.
  • Sheri76Sheri76 Michigan Posts: 497
    Do you take anything with serotonin in it? That can give IBS like cramping.
  • No to the best of my knowledge there's nothing with serotonin in it.

    I take:
    Lyrica 150mg x 2 per day.
    Dantrolene 50mg X 2 per day
    Amitriptyline 10mg X 1 per day
    Quinine 100mg X 1 per day

    Plus pain killers:
    Ibuprofen 200mg X 3 per day (2 each time = 6 per day)
    Codein 30mg X 3 per day (2 each time = 6 per day)
    Paracetamol 500mg X 4 per day (2 each time = 8 per day)

    That's all I take and as far as I can see there's no serotonin in them!

    Also, - this doesn't make sense to me - the cramps I get just before I need to go to the toilet are also in my feet, and not my stomach,

    I'm now trying to get rid of alcohol completely for 3 months - just to see if there are any results. Although my surgeon and my GP says that a glass of wine or two is okay with the pills I get. I guess not two people are completely alike, so I'm hoping it will do something.

    Have you experienced anything - I mean anything at all, which made just the slightest change for the better for you, Sheri76?

    I'm only 45 and I feel like I'm looking at a very lonely and dark future. I know I'm not the only one, but it just feels so hopeless.
  • brokenlumbarbbrokenlumbar Posts: 34
    edited 09/16/2015 - 8:32 PM
    I'm so sorry to hear how much pain and suffering you are in. I'm one month out tomorrow from my 2nd L5-S1 surgery. So I understand what you are going through, but it sounds like you are dealing with much more.

    So my thoughts, I think you are on way too much medecin. Plus mixing alcohol with 7 different pills is going to kill your liver in no time at all (also codiene is worthless for pain). Have you tried gabapentin \ nurontin? It does wonders for nerve pain. I would talk to your current doc or better yet, maybe it's time to find a new one and ask about this. My suggestion is to ask about gabapentin and maybe a different pain med with no Tylenol like ms-contin. This is long lasting and stays in your system for 12 hours. I'm on that combo and its like a miracle. This will give your liver a break.

    I will be praying for you to heal quickly.

    Keep us posted and don't hesitate to pm me if you need any support.

    Take care and stay positive!

    EDIT: one more thing...what area of the back? What type of hardware? For you to be feeling ok, then 8 months later after surgery you get this symptom it sounds like hardware could have shifted.

    You really need to find a new doctor to check you out. It is very possible that something went wrong and the doc isn't saying anything.

    I'd also find a good lawyer just in case your 2nd opinion finds out something bad happened by this previous doc that did surgery on you. Just to cover yourself.

  • hvillshhvills Suzhou, ChinaPosts: 732
    Dear Chakal

    That's an awful lot of meds to be taking so long after surgery. Have you tried cutting back? After my second spinal fusion surgery I took meds for almost 4 months but then my doctor insisted I stop... and he was right. He said some patients sometime have "phantom pains" when they are taking lots of pain meds... I'm not sure why, but in my case he was right. Have you seen another doctor about your problems?? I had lots of pain and swelling in my toes a few months after my second surgery and my orthopedic surgeon just blew it off as gout... but in fact when I saw an arthritis specialest he correctly diagnosed it as psoriatic arthritis... and he very quickly got me treated and pain free. Have you had a fresh MRI to see what is going on with your back..??
    Harry - 63 year old male...
    PLIF L4-L5-S1 due to disc degeneration... May 23, 2013
    PLIF L5-S1 due to failed fusion and broken screw... Jan 19, 2015
    Microdiscectomy, decompression L3-L4 due to herniated disc... Jan 19, 2015
  • Brokenlumbar: It was L4-5 I think in my lower back! And I was told the artificial disc they replaced my broken disc with was a mix of metal and plastic. This is a link showing exactly what type of surgery and even what the disc is made of exactly:

    Hvills: I’m now trying to cut it down – one medication at the time to see if things get worse or better. So far I’ve gotten rid of one of them (not one on the before mentioned list, as I had just started easing out of that when I wrote the message in here) and nothing has changed so far – for better or worse.

    The first couple of months after my surgery I was on nothing but painkillers and something extra to make my stomach deal better with the ibuprofen. Because I had the pain down the back of my legs I was then put on lyrica. Today the pain down on the back of my legs are history – occasionally happens if I had a long rough day, but easily with a month or two in between. It was only after my first flare-up/bad spell 8 months after surgery that I got put on the crazy amount of medication on the before mentioned list. However, before I started them I was actually getting better and then I got on the massive list of medication. It took a while before I could get to see my Surgeon and he was the one recommending the medication. However, by then I was actually – very slowly – getting better, but to be sure I accepted the list of medication. I’m now trying to get rid of whatever I can one by one, though.

    I have to say that it seems my own gut feeling was correct here, though - according to you guys (and thank you so much all of you for your response!) and sometimes you just need other likeminded people to confirm what you are already thinking! It IS a lot of medication and it seems it's just getting worse - not better in spite of the medication, so why continue? I have already spoken to my GP about the amount of medication and the medication described above (Lyrica, Dantrolene, Amitriptyline, Quinine, ibuprofen, codein, paracetamol) does seem a bit over the top - especially when I still go into really bad spells like this. Surely they - or some of them are no good. On top of these pills I got another one for restless leg syndrome (starting with P, but I don't remember the name of it), but that was the first one my GP suggested I got rid of. I eased out of it over a week and it's now been a week since I took the last of them and I haven't felt any difference - good or bad. So clearly that one did no good, but poisoning my system.

    b1979: Yes, I do agree – with you and Hvills – I do believe another MRI scan is in order.

    It’s now going into the 10th week (so far) of a really bad spell (a year and a half after surgery) where I have had to be off sick from work. It gets very lonely just lying in your bed all day long because I can do nothing else. At some point I think it is getting better and then all of a sudden I’m pushed back again. The thing is it’s very different from the pain I had pre-surgery due to my dystonia. It’s like it’s something completely different. Something seemed to have happened – or escalated – roughly 10 weeks back and left me in a state of constantly going in and out of cramps for literally hours (easily 7-8 hours in row – today it’s been going on from 10.30am to now and hasn’t stopped yet and the time is now 6pm).

    Thanks for your replies and I’ll no contact my GP and hand over your suggestions in regards to medication, but also the MRI scan, because I do find it slightly weird that I can start out fine – although a slow recovery, but steady and then all of a sudden I take 10 steps back and get stuck there - and in a very different pain pattern!

    I know there are no guaranties with surgery - I know, but I honestly don’t understand how my surgeon can just sign me off in the middle of my second flare-up/bad spell and say he’s done with me! He was the one who kept saying the first 5-6 months after surgery that it would only get better from then on and it has only gone the wrong way since the first bad spell 8 months after surgery – and certainly not better.
    …but thanks again for your replies – I’ll contact my GP and move on from here.

    Thanks a bunch!
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