Hi there. Been ages since i’ve been on but my op for a baclofen pump is due on tuesday 9th. I’m bloomin terrified and to top it off i’m all alone. Husband left last november and has just moved into his new 5 bed house. My daughter has left for uni and has got through £400 in two weeks so i’ve slashed her allowance. My life seems to be spiralling out of control, im scared, lonely, hacked off and feel like signing a DNR before my op! For years i’ve used Facebook as a great means of keeping in touch but have had to disconnect myself from it after a tirade of abuse from my daughter about a post saying i was scared about my op and constant sickening pictures and feeds from my still husband, (divorce not through yet) showing off his new life whilst i’ve been in hospital 26 weeks and live off benefits.
I just can’t move forward stuck in a hospital ward. Arrrrrrrrrrrrrrggggggggggggghhhhhhhhhhhhhhhhhhh, i’m just so sick of everything and don’t know what to expect from this pump. nobody seems to be organising things and when i ask questions i get shrugs and ‘don’t knows’.
Anyone out there had the pump and had a good (or bad) result?
Hi Susie, sorry can`t offer any info on the pump, but just wanted to say how sad I am for you, that everything is so tough for you. Your daughter and ex must have no scruples at all, to leave you in this state of bewilderment.
May take me a while to reply but i certainly shall. I’m due to go into a rehab unit afterwards. Prognosis has been ‘won’t walk but will be safe in chair’, ‘may be ablt to stand’, ‘may manage a few steps at the very best’. Where are you having your op done, mines the QMC Nottingham and on ward D10.
I’m not booked in yet just having discussed it with my consultant this wee but I think this will be my next option as I am now on 100mg baclofen and 3600mg gabapentin and it’s not doing it’s job.
I live in west sussex but I expect I will have to go to London for treatment.
I was lucky, the consultant on the rehab unit i was on went on holiday and a professor took over. He took ne look at me, pulled strings and after fighting off a hospital superbug i was sent for the trial. Still had to wait a long time for the op as theatre time for pump surgery booked up until now.
i had a baclofen pump fitted at the end of January and it has been brilliant . i was on 80mg of baclofen a day, which i had to give up slowly, but am now off completely, the tablets have a side effect of fatigue, I now have more energy! Iam wheelchair bound paralysed from the neck down, i would recommend a baclofen pump who needs to be more relaxed. i was only in hospital for a day and a half ( hospitals are not nice places) if you want to know more there is a site on my blog ms wont win.
i had a baclofen pump fitted at the end of January and it has been brilliant . i was on 80mg of baclofen a day, which i had to give up slowly, but am now off completely, the tablets have a side effect of fatigue, I now have more energy! Iam wheelchair bound paralysed from the neck down, i would recommend a baclofen pump who needs to be more relaxed. i was only in hospital for a day and a half ( hospitals are not nice places) if you want to know more there is a site on my blog ms wont win.
Hi Yaya, thanks for posting such a positive post, which will no doubt, ease the mind of anyone contemplating having a pump fitted.
I am so sorry to hear that you are paralyzed from the neck down.
Was it caused by MS or something else?
If anyone feels they are having a really rough time, reading your reply to this poster will make them think again, eh? Sorry, no offence meant to anyone there.