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Forum Start Madmums | Pregnancy and Parenting Forums » Health Forums » Women's Health

More SPD surgery? Topic: More SPD surgery?

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offline jennypenny
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Posted: 28 August 2007 at 5:44pm | IP Logged Quote jennypenny

Hiya folks,

I'm actually looking for some advice from you guys as I'm in a bit of a dilema..

Basically, as most of you already know, I've suffered from both SPD and it's big brother DSP for the past 7years now.  I had a plate put accross the symphsis back in 2003 and was then sent on my merry way.  Although I improved initially, gradually things declined back to the same as it was pre-op. After repeatedly complaining about the pain and only being able to get around with crutches and a wheelchair, I was referred to consultant after consultant and pain clinic after pain clinic.. all of whom said I was fine and insinuated (sp?) that it was all in my head..

Anyway, after battling on, I was finally referred to a pelvic specialist who's said that the oriniginal plate wasn't fitted correctly and 3 of the four screws attached are hanging out,hence the pain, instability and clicking.. (I've a good mind to phone all the people that doubted me and shove it up their ****).  At my last consultation, he has now said that the only thing he can now do is this:

Remove the original (and waste of space) plate.

File down both sides of the bone at either side of the symphsis to create 'fresh bone' (as the original screws weren't fitted properly, they've gone right through the bone)

Take a chunk of bone from my hip to attach accross the newly filed bit

Then put two plates (one top and bottom) accross the joint to make it rigid...

Now, the dilema is that apparently the two plate option hasn't been done before (because it fixes the too rigid) so they don't know what effect it'll have elsewhere.  They think it might start to affect my back pain more due to the additional stress put through the SI joints with the symphysis not having the natural flexibility.  If that does happen, they'll then need to plate the SI joints as well, which may then put me in the wheelchair permenantly as my pelvis wouldn't be able to move the way it should for walking etc..

What do I do?? I'm worried that if I go for it then I will end up in the chair permenantly and that's all I seem to focus on just now.  I know he was just going over what 'could' happen but with my luck so far, then I really believe it's a probability.  But then, what's the option's if I don't? I live like this (or even worse) for the rest of my life?

I know it would be hard for anyone to advise, but please try as I don't know what to do...

 

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offline Madzwalker
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Posted: 29 August 2007 at 12:21pm | IP Logged Quote Madzwalker

I wish I had all the answers Jenny - in reality I am struggling to face what I am going through and cannot begin to imagine what it must be like for you.

I dismissed the idea of surgery as soon as it was offered. I'd already done my research and heard about the horror stories. I went for a nucular bone scan and the consultant told me I was in need of surgery but even he informed me it was risky and would be better to wait until I was older.

I wish I could get you in with my pain consultant. I am seeing him on Friday for the next round of my prolotherapy. I know he is much in demand but I will see if I can speak to him about getting a referral for you. I ill PM you later.

If I were you I'd do nothing without at least another 1 or 2 opinions. Contact the pelvic partnership explaining everything and they might be able to put you in touch with someone whos faced a similar dilemma.

Only you can make the decision. There will probably never be a right answer but I hope you can make a decision you are comfortable with and can get some sense of normality back to your life.
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offline 3smallboys
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Posted: 29 August 2007 at 10:13pm | IP Logged Quote 3smallboys

Hi Jenny

I can't advise you what to do, but I saw this in the paper the other day, and thought you might find it useful while you think things through.

http://www.dailymail.co.uk/pages/live/articles/health/myoper ation.html?in_article_id=478213&in_page_id=1989

It gives the name and hospital of the surgeon who carried out his op, do you think it might be workth trying to get in tough with his secretary, just to see if you could talk to him on the phone. Like Madz has said, I really think you should talk to someone else before you make such a big decision.

Gentle hugs, Rachel x

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offline Madzwalker
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Posted: 30 August 2007 at 11:38am | IP Logged Quote Madzwalker

Wow 3small thats really interesting! I've saved that article!

Jenny I've emailled you some details.
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