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Kentish
18th July 2007, 03:36 AM
Firstly I'm so happy to find this site. I've never spoken to or met anyone else that has suffered from Kyphoscoliosis and always felt that I was on my own. I apologise if I've put this in the wrong section or if this turns into a very long post.

I was diagnosed with congenital kyphoscoliosis when I was 17 and in 2001 had surgery to fix the problem. The operations were successful in that my back was straighter but the pain I had never really got any better. But this wasn't really a problem as I've always had pain.

In 2004 I had an accident while travelling in Thailand and after many scans was found that one of my rods had snapped and the other was no longer attached properly. My specialist felt that the increased pain I had wouldn't be cured by having the rods removed so I decided that the last thing I wanted was more surgery.

Unfortunately the pain seems to be getting worse and now that I've just turned 30 am starting to think that I made the wrong decision as I can now feel one of the rods when I'm sitting and it frequently irritates my back muscles. Extreme pain and being immobile also seem to be becoming more frequent.

Has anyone else had any experience of problems with the implants and had them removed? I've read that very few are taken out and cant seem to find any information about this.

Many thanx for any help :)

sins
18th July 2007, 11:59 AM
Hi Kentish,
There are a few people who have had rods removed.Kogepan Girl has had hers removed for infection a few weeks ago.
In your situation, I would consider having the rods taken out as they're causing discomfort.the surgery to remove them is monor compared to the initial surgery.
However if two rods are broken and you have severe pain then I would consider the possibility that the fusion is not solid and ask a specialist if this may be the case.
Sins

Little Ali
18th July 2007, 04:06 PM
Hi there :welcome2: I'd encourage you to get them taken out too. Living in pain is no fun at all.

Kentish
18th July 2007, 08:01 PM
Thanx a lot for your replies. I'm still so happy to have found this site and be able to chat to others in my situation.

The last time I saw my specialist he said the fusion had taken really well so I think thats all fine. Its just that I'm not sure whether going through more surgery to have the rods taken out is worth it when theres a good chance that my pain wont improve. But since you say that its a lot less serious than the original operation then I'm more inclined to consider it.

I'm seeing my specialist next month so will need to get more info from him. And thanx for giving the name of that person who had her rods taken out. I'll message her and see how she's doing and what her thoughts are.

Again, thanx a lot, you've really brightened my day :)

Colo88
22nd July 2007, 04:22 AM
I had my rods removed because of infection and hardware dislodgment. My rods were also really prominent at my cervical/thoracic region and thoracic/lumbar region since thats where they began and ended. From my person experience removing the hardware was so benificial for me, and in your case it may be the same. I believe there is more risk for curve progression after the rods are removed which is a potential pitfall.but for me living with the pain was just not an option. I had extreme pain in my back progressively after my fusion and now that the rods are gone I rarely have pain. good luck hope this helped!

~Ali~

Colo88
5th August 2007, 05:20 AM
Also I would like to advice you to at least go to the doc and have a full diagnostic exam of blood work to test your ESR (Erythrocyte Sedementation Rate) and white blood cell count, a CT scan of your back, and a Bone scan. Your rods could have possibly become dislodged and the blood work can rule out any late onset infection, like I had. I think its important for you to have these tests. I do advise you to also look into getting the rods removed. I had several docs one being a leading scoliosis doc at a very nice and known hospital tell me my pain wouldnt change by having them removed and there wasnt anything wrong with me...but there was. Docs are not always right and you are in charge of your health. Having them removed wont get rid of all your pain but it CAN significantly reduce your pain.

Kentish
13th August 2007, 02:57 AM
Thanks for all your help. I'm quite comfortable with the idea now of having my rods removed.

Saw my specialist on Thursday and was quite nervous as the specialist who always saw be before and performed the surgery on me has left so was a new guy. Well he wants me to have an MRI scan, CT scan and xray and then see him again as says he wants to be clearer about whats causing my pain.

Felt a little low when I left as it felt like I had started from square 1 again but got my scan appointments through already and they will be at the end of September so less than 2 months to wait. Beats the 10 months it originally took from referal to MRI/CT scan :)

Anyway hopefully by October my new specialist will be happy to remove my rods.

Thanx again for your comments, feel much happier now about the prospect of having these taken out and hopefully getting rid of my pain :)

Amazed Jean
13th August 2007, 09:54 AM
Hello Kentish I just wanted to tell you that if you have the chance, I think it would be a good idea to have everything looked at then follow the scoliosis specialists protocol. I still have yet to hear anyone say that their scoliosis did not progress when they did nothing. Seems to me that scoliosis does progress in untreated spines.

Kentish
20th October 2007, 03:10 PM
Thanks again everyone for your replies. Have had all my scans and saw my specialist yesterday so thought I'd give an update.

It seems that its not my faulty rods that are causing the pain. Seems that part of my fusion didnt take as it should have and now have a type or arthritis from bone rubbing where the graft didnt take. Seems I will be having surgery after all.

He also found that I do indeed have late onset infection of the area and have a pocket of fluid building up. I will be having an ultra-sound in a few weeks to locate it and have some drawn out which I'm not looking forward to and then in a few months surgery to the fusion site again.

Its not great to have to prepare for all this again but at least I know now why I'm getting such bad pain again and they know how to help.

Thanx again for your help.

GillyG
20th October 2007, 06:35 PM
Sorry to hear of your ongoing problems.

It must be a big relief that you have some answers now, even though it does mean facing further surgery.

Hope all goes well, please keep us updated. :-)

Gilly xx

Little Ali
20th October 2007, 10:20 PM
Oh yeah...I think that's a pseudoathrosis. It's what I had and they fixed it in my surgery last February. It was really painful so I really hope they manage to solve you pain.

jfkimberly
24th October 2007, 03:25 AM
Oh, that's disappointing news, Kentish... but hopefully that means after this surgery, your pain will be relieved. Good luck with the fluid biopsy and surgery. Keep us posted on how things go.

Amazed Jean
24th October 2007, 06:45 AM
Sorry, that you have more "stuff" to go through. 5he draining shouldn't be as bad as you might think. It may releive some pressure and reduce swelling making things more comfortable. Good Luck and keep us posted.

sins
26th October 2007, 06:31 PM
It's very good news that a diligent specialist has managed to pinpoint the source of your pain and that you have a reasonable expectation of having an improvement. keep us updated with your progress and the very best of luck with your surgery.
Sins

Kentish
14th December 2007, 01:25 AM
Saw my specialist today so thought I'd give another quick update.

The results of the drainage shows that I have a number of low level infections accumulating at the base of the rods where they have snapped. But he says the infections cant be treated while the rods are still there as they seem to be attracting all sorts. So I'm having my rods removed in the next 2 weeks. He appologised that its gonna be during the xmas period but as I said to him, I'd rather be in hospital xmas day having my problems sorted out than at home in pain. He said while he's in there he'll be able to see the extent of the damage to my spine. He said the op will only take an hour and I should only be in hospital for 4 days.

Once thats done, I then go onto antibiotics for 6 weeks - 3 months depending how hard they are to get rid of. And then once thats done I'll most likely be back for my second fusion.

Was a bit upset when I left today as its all happening faster than I thought it would. But after a few hours I realised that rather than being scared, I should be overjoyed that its finally gonna be treated. Fingers crossed that this time next year, I'll be pain free and able to get out more. I now feel like this is the best xmas present I've ever received! Already thinking that I might be able to go out clubbing again and maybe even be able to dance again for the 1st time in years :D

I hope everyone has a nice Christmas and thanx again for the support I've been given :)

GillyG
14th December 2007, 10:39 AM
It's great to hear you sounding so positive about the whole thing, I'm convinced that's the way to a swift recovery 8)

One thing I'm really intrigued about ... did your specialist say whether the rods snapped due to the infection, or whether he thought it was the snapped rods which caused the infection? just curious! ;-)

I hope you have a great Xmas, wherever you are (!) and a rapid recovery period.

Gilly xx

Kentish
14th December 2007, 05:42 PM
Thanx Gilly. Hope you have a great Christmas too!

I asked Mr Ember the same question you asked but he said its like a chicken and the egg situation. An infection can cause the rods to losen and ultimately snap, while a damaged rod attracts infection like no ones business. But since one will cause the existence of the other, I think they are both seen as part and parcel of the same problem.

Gareth xx

GillyG
14th December 2007, 11:08 PM
Thanks Gareth, I had a feeling it might be something like that. So often, it's impossible to tell which condition causes which! :P

I hope you can get your actual surgery over and done with before Xmas, then you'll be 'on the other side', so to speak, and can get plenty of pampering over the festive period! :xgrin: