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Starting to freak...need some reassurance

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Old 12-06-2008, 07:10 AM   #1
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jinks67 HB User
Starting to freak...need some reassurance

Hi all,

I've been off and on the boards for a long time now (in some ways I'm one of the old spineys), so some of you will know my story well, others less so.

To keep it as brief as possible - I had two operations in 2007 for a left-sided disc herniation. The left-leg pain that builds up whenever my back is straight (standing, wlaking, lying) is caused by narrowing of the foramina (the pain is largely neurogenic claudication rather than strict sciatica). This has largely remained the same thorughout, and today there is certainly scar tissue on the lft that is compounding the problem.

Over the year since my last operation I developed considerable back-pain, and in August 2008 saw a new surgeon for a fresh opinion on treatment. I didnt expect to be recommended a third surgery, just perhaps alternative thoughts on the future and treatment. Anyhow he suspected that I'd developed an instability, that was shortly after proven to be correct, and recommeded fusion.

So, I've been thinking about the possibility of fusion for a few months now.

In the meantime, things have gotten a lot worse. I developed brand, new sciatic pain in the right-leg, that was severe enough to put me in hospital. In the department that were treating me, for the pain largely, they are very concerned about the large instability (severe retrolisthesis at L5/S1) and are also recommending surgery, sooner rather than later because of a muscle-deficit in the right big toe. I have a back-brace, which although I can only wear for 10 mins or so at a time (before the claudication starts up in both legs), does prevent me over-doing it and bending too much, and it seems to be helping the general level of pain by reducing the amount of sliding going on at l5/S1.

Initially they wanted me to wear the brace all the time, to immobilise L5/S1. Appraently this is a good indication that surgery will work. Because not all my pain comes from the instability (the claudication) I was sceptical that it would help, and actually thought it would make things worse, but thankfully i seem to have been proved wrong.

Anyhow, when I went into hospital (3 weeks ago) I felt absolutely ready for the fusion. I'd thought about it over a few months, pain was getting worse and I felt sure that when I'd found a surgeon I was comfortable with, that it would be right for me. (unfortunately the surgeon who diagnosed the instability is based in the UK - I live in France - and isn't a feasible option).

However, I'm now starting to freak out. I know that part of this is because my pain levels are a lot better since I've returned from hospital and stopped all physical activities, and been wearing the brace (the brace was never meant to be a permanent solution, just a test). I do know deep-down that if I want a life for the next 30 years (I can't lie in bed for ever), and even if though I will probably have remaining pain, that surgery is the only option for pain relief and prevention of the slippage getting worse.

But I'm just starting to get cold-feet. My previous surgeries were relatively straight-foward and minor (no hardware, one level) but even they didn't cure all. I don't have complications of problems at other levels, so besides scarring from the previous op, I guess I'm an ideal candidate (clear problem of instability, one-level only, back brace helps with pain-relief). But its just that the fusion is such a big surgery, there are so many potential problems, my scarring could get worse, there are different ways of approaching it (posterior/anterior etc..) its all freaking me out... And of course, it could be my last chance, and I could up worse off than now (though I only have to remind myself of the pain levels when I was admitted to hospital to counter this thought)

I see a new surgeon at the end of January, after a new MRI, and I know I have time to do a lot of research and I can get other opinions afterwards...but right now I just need to know that this tooing-and froing is normal. I never felt like this with the previous surgeries.

Please, can any of you old spineys offer me some encouragement??

Thanks as always
Jinks xx

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Old 12-06-2008, 07:41 PM   #2
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megss HB User
Re: Starting to freak...need some reassurance

Hi Jinks.

I am not an old spiney, but I wanted to respond to you. I know it is terrifying. I am facing the same decision potentially. My pain has gotten to the point that I need something done NOW. One thing that has helped me is, I made a pros and cons list for having a fusion. Even though I counted some of the cons more than once, my pros still majorly out weighed the cons. Since your pain level is not out of hand at the moment, you have time to think it through and get lots of opinions. Do you work? Do you have supportive family? I unfortunately do not get to rest. I HAVE to work full time and I am a mommy to my 15 month old. I would love to have more babies someday as well.
Just listen to your heart and try and put trust in the doctors. This is no way to live. Dreading each day is horrible. Remember that the large majority of fusions are successful and give people their lives back.

Old 12-07-2008, 12:33 PM   #3
Join Date: Feb 2006
Location: FL
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Frosty6 HB User
Re: Starting to freak...need some reassurance

Bonjour Jinks,

Megss gave some very good advice. I would opt for several opinions. France has some of the best surgeons and newest technologies there is. I had the PLIF is May 06 and took 2 years to fuse. I still have serious problems but I can do more if that makes any sense. I will see a new Neurosurgery group after the first of the year myself. This group does their fusions through laser surgery which is very appealing to me due to the amount of scarring I already have. I don't know much about the anterior interbody fusion other than the fact a friend of mine had one and her results were very good but the scar is horrid. It must have been an ALIF/PLIF combo as the scar is a 180. Do your homework. You must have good supportive help following the surgery and DO NOT BEND AT ALL or lift anything heavier than the doctors state for the alloted time. It is crutial to fusing and positive results. Unfortunately for me, my family was not helpful when I needed it and I dropped everything. Purchase a grabby thing, they look like a long stick cane sized with grips on the end. That will help you pick things up and reach things that aren't heavy. It is extremely natural to get cold feet but if you are truly in as much pain as you state and the hospital itself wanted to proceed with surgery then your deterioration is getting worse and it is time to act. There are more failures on this board than sucess stories as the sucessful ones are living their lives. Try not to let the stories of others discourage you, but educate you. Reach out to us when you are feeling low. This board has been such a blessing to so many of us.

Good luck to you and keep the faith.

Frosty (yes after the snowman )

Old 12-07-2008, 01:45 PM   #4
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jinks67 HB User
Re: Starting to freak...need some reassurance

Thanks guys,

Feeling a bit better about it all today, I just I'm just going to have to get used to the ups and downs - its not as if I've not had to deal with the frustrations before but its just that its a bigger op this time round, and while I fell pretty educated about spinal stuff in general, the different fusion techniques boggle the mind a bit!

When i went into ER it was because of 9/10 pain that instead of passing after 45min/1hr as it had most nights, this time didn't. It fluctuated but everytime I moved it shot up again. Morphine kicked the pain to the degree that I could be comfortable in one position, but I ended up admitted for two weeks (though much of that was waiting around). The hospital dep't was rheumatology, so wouldn't have operated themselves obviously, but they made sure everything's in place for follow-ups, and that I was absolutely ready to go home in terms of medication etc.. (I guess they don't want you being re-admitted 1 week later!) And I finally I learnt a few things, about what I can do to help myself and can't - bending in, no, no, no, no! It might not hurt taht much at the time, but its the one thing that flares everything up. I'm hoping this practice will stand me in good stead for the post-op period.

Well, time to get back to school and hit the books now I guess - chapter 2: Spinal fusion!


Old 12-07-2008, 01:50 PM   #5
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ms_west HB User
Re: Starting to freak...need some reassurance


Hey, would you quit following me? Our stories could not be anymore similiar could they my friend? We have been thru so much together.

I understand where you are coming from about freaking out because I am right there too. It is hard because you have been thru so much and you are putting all your faith and hope into this being the surgery that does the trick. For me I know that this is my last chance which puts even more nervousness into the equation.

But I want you to know one thing, I will be here for you as much as I can. I will be in the hospital for about 4 days but after that I am here for you 100%. I can't promise that I will be clear headed all the time but I will be here because I care.

I think the key is to try as hard as you can to take care of yourself and listen to the doctors. You have been thru this, you know what to expect. The first few days are the hardest then you are home free. Let's just pray that we both will be walking further than the end of our drive way soon and posting about that. We certainly deserve it.


Old 12-08-2008, 02:10 AM   #6
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jinks67 HB User
Re: Starting to freak...need some reassurance

Lol -diet...I tell you - you get better, i get better.

Its lovely to have so many kind words, and especially you diet, considering that you're going into hospital today! You concentrate on yourself for a little while, and then drop us a line once you're feeling up to it (and only then!)

As for me, I'm getting into action today and am going to get the other surgeon appointments lined up. I have one appointment at the end of Jan with a local orthopaedic surgeon, and then I'll try and book appointments with a couple of others for around the same time. They are a little further afield and I don't know if social security would authorise an op outside my department, but at least I'd have a good set of advice to work'll be nice if they all say roughly the same thing. As for now, I think it'll help me to at least relax a bit knowing that all will become clearer in the new year.

Thanks again all, the support means more than you realise.
Jinks xx

Old 12-08-2008, 07:22 AM   #7
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Re: Starting to freak...need some reassurance

You can do this!!! I am 90% of where I used to be!! That is more than the doctor's could promise!. I tended to always put myself last. I put my fusion off for months taking care of everyone else. IF you are having to go to the ER for pain that is 9/10 then I think you are making the right choice in getting this done. "GET YOUR LIFE BACK". That is what one of the doctors I saw said to me. I was 45 years old-twoi kids at home-full time job-small group leader at church-avid gardner. I wanted all that back and I have it! I do deal with pain on a daily basis but I see a pain managment doctor to help with that so that I can be who I want to be,.

I am praying for you and Pepper and everyone else opting for surgery this month. Give yourself a Christmas Present-your self. Your body. Your ability to participate in your own life instead of watching it from the couch.


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