In a bad place now...

[Frances144]

Sorry to whinge and sorry for total ignorance.

How do you know if a fusion has not worked?

I am 5 months post-op L5/S1 PLIF with screws, cages and Wallis ligament and grafts.

I was mobilising well, coming off the painkillers and managing to take the dogs out for an hour a day on the hill, go to town for a few hours to get messages, etc.

Now, I feel awful. Everything just hurts.

The soles of my feet are numb and tingly or very odd. I don't have sciatica but I have a place above my scar on the left side that hurts, feels like it is pressing in and I know it is there all night - hurts when I breathe in and out.

I am exhausted. Totally wiped out most of the time. I want to do stuff but just can't - walking is a huge effort because I ache all the time.

All analgesia has side effects and I seem to get every single one of them. I hate taking the painkillers and manage on 2 paracetamol in the morning and 2 co-codamol at night, whilst doing what I can in the day.

I know I am feeling very sorry for myself but I am terrified things are not right. My GP (not surgeon) just said I came off my painkillers too fast and I should take more. I have emailed my surgeon and am awaiting his reply.

I suppose I don't know if this PLIF has worked or not. The last x-ray 2 months ago said things were healing/growing etc but something just seems not right, or different, or very odd.

[ajj1001]

the fusion will show up on x rays when you go for check ups. it will take months & months to fully fuse. it was showing to be healing two months ago so all is good unless you have had a big fall or infection. you are taking hardly any pain meds so of course its hurting. I guess the more fused you get it will feel more different.

[Frances144]

What I could achieve before, I have no strength to do now. I just ache all over.

[Cindylou]

Frances, it does sound like possibly you have been pushing yourself a little too fast, maybe. And then reducing the pain meds all at the same time......what you probably didn't realize is that it was the pain meds that were actually helping you feel better and giving you the added energy to walk, etc., and then you cut back on them pretty fast while trying to maintain that same level of activity and KA-BANG. Everything just came to a screeching halt, with the added fatigue to boot. I really don't think you have damaged the fusion, but as Alison has stated, it can take a very long time to fuse, even up to 18-24 months. If you are really worried, I would recommend getting into your surgeon, just for peace of mind. I do wish you the very best. Cindylou

[Katie]

Frances, I also think that you have done too much too fast. You have a lot of hardware in your body that it has to cope with.

I experienced this too.

I am exhausted. Totally wiped out most of the time. I want to do stuff but just can't - walking is a huge effort because I ache all the time.

In fact, I came on here asking for advice because I felt so terrible too. I went from 300+ mg of morphine/day to about 40mg just days after surgery because of severe constipation which needed to be cleared up before I left the hospital. I was OK for a couple of weeks until I got home (I went out of country for surgery), and then the half-life of the drug that was left in my body took a hike too, and I was very,very exhausted, sick, etc. I did find out that I was developing an intolerance for all the milk I was drinking at the same time as well though. It was a combined effect.

I also am extremely sensitive to most of the pain meds (and now foods) out there. Several have put me in anaphalytic shock, so I get what you are going through. But a year out, I am still taking just enough meds to keep me comfortable, as the more I do, the more I hurt, if I do dumb things like standing on hard surfaces too long, etc. It's a minimal amount, but just enough to keep me mobile. KBear took eighteen months to get off completely...she has given us her story many times here. Guess what I'm saying is to not rush things.

I can't speak to your other problems, the soles of your feet, etc. Is it possible that it is muscle, etc. related? Do you have a Physical Therapist, etc. that you can go to for help? I know that I sometimes have some pain beside my lumbar and on the sides, and my chiropractor said it is from the sciatic nerve going through my muscles, among other things, but not any problems with my fusions. After a few minutes work with muscle release techniques, it is relieved.

I have one other thought that may seem very 'far out' to you. I had to have out-of-country surgery for several reasons, the main one being because of severe metal sensitivities. Because of some very wise and kind people on this forum, I had metal testing done at Rush University in Chicago, which showed that I was severely reactive to every metal that would possibly be put in my back. I had been relating my story of food and drug reactions and someone said that a patient, in England I believe, had ADR surgery and six months later became sick, and it continued to get worse. She was tested as I was and it showed that she was reacting to the metals in her spine.

This is not unheard of with hip and knee replacements, and the reason this testing started. While the chances are small, I thought I should put it out there again because of all the new people on here since my adventures began. It is something most doctors would not think about, and would maybe dismiss unless the test was there to back it up.

I hope this is just a case of too much, too soon, which is easy to adjust I had the same fears for months, and the knowledge and support of this wonderful forum family got me through all the rough spots. I hope we can do the same for you.

[ajj1001]

hope you have had a better day today, hugs. x

[hooperleo]

I went back to work 6 months after my L4 L5 fusion and was out an additional 3 months. Slow down and let things happen. You are not the same so accept that you will never be where you were! You however, will be better off when you accept where you are. Then, and only then can you controll where you want go...then you will be what you want yo be.

[scduggan]

Dear Frances,
I just wanted to chime in and let you know I am thinking about you. It is not that I think I am a wise old sage.....just had a few more months to deal with post op issues. I am 14 months post op and I can tell you the mental/emotional rehab is just as difficult at the physical. Five months seems like a long time, especially if you were doing well and now are not. I also think this is probably a matter of too much too soon. It is so easy to be bowled over by what is going on with your recovery. You are feeling awful, plus NOW you are worrying that something is wrong. This fear is something I know too well. Looking back now I see it was just part of the journey and, unfortunately, I have been a slow healer. Do not worry about the pain meds. I have heard from so many here that when you take them when you NEED them you will not run into problems. I was on my Lortab so much longer than I hoped. You really can slow your progress by always trying to tough it out. Good luck going forward!
CD

[Frances144]

You are all right, of course!
I need my meds and I need them regularly and I have to find some sort of compromise with the side-effects and how they make me feel.
I have gone back on them and life is better.
I have also booted myself up the bum, restructured my brain and my ambitions too.

Realising I will not ride my horse again, which was part of my job, has a difficult one, so I am channelling my energy at the moment into my photography, promoting my work and also writing a blog!

WHITECU.BE
Shetland Pony Everything - Everything Shetland Pony!

[Katie]

Frances, I am stunned at your work!!! As an artist and fellow pony lover, my jaw dropped at what you are accomplishing. I used to do CDEs (combined driving...a marathon/rally type competition for horses for others not familiar) when it was in its infancy here in Canada, and last drove my Connemara mare about seven years ago. Then I got married, moved to a new province and my back fell apart. After surgery last March, all I could think about was getting back in my road cart and new marathon carriage that my dear husband bought mid-crisis, several years ago, to keep my dream alive. Bless him.

I finally started ground driving my mare this winter, and ordered a bob-sleigh which unfortunately just arrived this weekend after the snow left . But to say my mare is fresh is an understatement, even though she is just past twenty I think it will be awhile before we get her between the shafts....you think?! Even though hubby thinks 'just hooking her up' would be a fine idea...I'm beginning to think he wants the life insurance

All this to say.... just hang in there. With your talents, you will soar sooner than later. If you do nothing than take more of those fabulous photos of ponies, you will be contributing hugely to those who appreciate them. I know that that just watching and brushing my mares was the only thing that got me out of bed when everything hurt so da@m much these past years.

And thank you for giving those ponies a second chance at life, instead of the alternative some would have.

Guys, go to her sites...you will be blown away, even if you are not pony people

And back to your back issues...have you tried other meds to find one that won't make you so sick? It was a real roller coaster for me...I think I tried about eight before finding just one that worked plus didn't leave me very ill. And good for you for finding the light again.