Bone infection

[Lieveling]

Well as if the metal plate moving all by itself out of place and into his oesophagus as well as two bacteria (providencia bacteria and E.Coli) elsewhere in his body wasn't enough, my partner has been hospitalised urgently and they have confirmed that he has a bone infection in his cervical vertebrae (from where there is a perforation in his oesophagus). Apparently the infection is also in his spinal column - huge cause for worry! His fever is pretty high too.

So he's had endoscopies, NMR and CT scans - early next week three professors will come together to decide how best to proceed given the circumstances. It's by all accounts serious and for the moment they just want to contain it from spreading (upwards to the brain or around and down). So they have dubbled his dosage of antibiotics!

I'm feeling pretty angry right now I have to admit -  he has been ever so courageous about dealing with his disability and working so hard at his rehabilitation. And this happens......

I'm worried that as he has had so many urine infections, MRSA, pneumonia etc in the last year that his body must be very weakened by all this medication.
I place all my faith in him to get past this too but it is not going to be easy this one!
I'm wondering if anyone knows anything about bone infections?
Thanks a lot

[cate]

Hi Lievling.  I am sorry I cannot help you,   Just wanted to say thoughts are with you and your boyfriend, wishing him some good luck, and also to you for your support, must be ,difficult time for you, Please keep us informed.  Sorry not to be able to help in a more practical way
Cate
 

[Lieveling]

Thanks Cate that's really sweet. At least he's a week into the antibiotics now and responding well so there is always good news too. 
Only another 5 to go!! He's amazing at how he gets through these ups and downs, on top of all the daily routine that he has had to get used to!

Thanks for your support - most valuable

[gzarnke]

Hi Lievling,

I just want you to know I am thinking of you both and like cate I just want to wish you the best and send you a big hug, both of you.

It is the only way I know to make it to the end of a day sometimes is to just get a hug.

gzarnke

[brainandspinalcord]

Sorry to hear you're going through such a rough time. I hope they got things under control, we're watching and hoping for an update with some positive developments.

[Lieveling]

Hello everyone,
well my partner is responding well to the antibiotics - he has been diagnosed with osteomyelitis. He is under intravenous antibiotics for 6 weeks.

He is now in week 2 of the antibiotics and the secondary effects are starting to lessen a bit.

With my partner's permission, I sent an e-mail to his centre outlining my concerns about his case and what I feel/perceive as a lack of adequate medical care. I'm waiting for an answer.

Most importantly though, my partner appears to be recovering well but this is quite a serious infection - not easy to get rid of and I'm more focused on him getting through this. Somehow it has also given me extra power now to stand up for his rights as he is really lacking in confidence in his medical team. He really is a great patient, rarely complains and is so positive in his outlook for rehabilitating as much as possible.

Thanks for your hugs and kind words, they are needed and appreciated.

[brainandspinalcord]

thanks for the update, it's good to hear things are turning up a little.
good for you, I know it's hard to stand up to a medical team but it's absolutely necessary. Having support like in this forum helps!

[cate]

Hi Lievling
Glad to hear your partner is improving. and I think you  should have a say  with his medical team, do not be bypassed, as you are so important to his well being.  Just wanted to let you know we are thinking of you both
Cate. 

[Lieveling]

 

Feeling very sad and disappointed today - I got a response to my letter, a very disappointing one. Basically the director of the centre replied saying that if we didn't like what they were doing we could go elsewhere!

I'm now looking for another centre for him. I hope I find one as he doesn't want to stay there a second longer. This has to be a new low for his story. I was expecting an invitation to come and discuss with them our concerns and instead the director wrote that I should think of including positive points in my letter instead of negative ones, that we should motivate them to have confidence in us (!!!) and that he has lost all hope of pleasing us. This is the first time in one year that I have contacted him. I have never complained to him before though I felt I had more than one occasion to. Equally I regularly compliment the nurses on the good job they do, both day and night teams. I often cross the night team as I'm leaving and thank them for their good work.
I'm really in shock.
But most of all I feel terrible that my partner has seen this letter........... He will have to stay in this environment until I find him a new place and that is not easy for him - though he is putting on a brave face!

[cate]

I am so sorry that you had this outcome, not at all good, not very professional either, I think they should have had a meeting with you and your partner.  Hope that you can find somewhere satisfactory soon.
Cate

[gzarnke]

How very upsetting, that director should be ashamed of himself.  I sure hope you find a place soon.

gzarnke

[n13]

Hi everyone im new to writing on this forum but saw this post and wanted to respond. I am C6 incomplete injured myself last year, I also had metal bar in my neck until 7 weeks ago when it was found that I had an infection in my plate and also in my cervical verterbrae. I had the plate removed and like your partner Lieveling I also have a perforated oesophagus which in my case was caused by the infection. I was on a whole load of antibiotics for the infection which has cleared now but I am still waiting for my oesophagus to heal so have a peg feed as im nil by mouth till then! I hope your partner is doing well now. All the best. x

[Lieveling]

Hello everyone,
just to let you know that he finished his intravenous antibiotics last week and he was allowed out from the centre from Thursday until yesterday evening so we had a wonderful long weekend at home together. We had a wonderful time. He has responded well to the antibiotics and his blood count is good.

We're now waiting to see if an operation on the oesophagus is necessary.

Thank you so much for all your support - it was great to have it during what was quite a difficult time not only with the infection but also with the centre. He's staying there for the moment unfortunately as the other possibilities have not worked out due to the way the forfait system for rehabilitation works here in Belgium.
Thanks again!

[lulaholden]

I am so sorry this is happening to you- my bf is going through a kinda similar situation. He is actually getting the Cage removed from his spine(do to infection in the HARDWARE) but they need to take the bone as well-and replace it with doner bone or whatever the docs decide. He is really nervous. Dont give up or lose hope- my thoughts are with you both.
 
Kelly

[Acecale]

Your boyfriend urgently needs a medication. They might undergo with surgical procedure to clean the bone infection. Then, should be take antibiotic for about 6 weeks to remove the remaining bacteria.

[chrisarnold]

Dear Lieveling,

Very sorrow to read of this. I can't really help in a practical way, but am really glad to read of the big improvement; that means that putting up with the drips and the feelings often associated with aggressive antibiotics worth while. Perhaps our combined thoughts and prayers will help.

Best wishes,

Chris