The Waiting Game

Sometimes you have to take things into your own hands and make things happen. Finding the waiting times for the Baclofen pump surgery ridiculous, I rung up my surgeon's secretary and tried to get an ETA on waiting times - they were not good. I could be married by that point and still not have it (oh yeah, by the way, I got engaged, woo!). So I asked if I changed hospitals, would the waiting time be shorter, and BINGO! They gave a rough waiting time of 8 to 12 weeks - GOOD GOD. If I had known that I would have changed waaaay sooner.

So I am now on the waiting list at the new hospital, and in two days time I meet with my new surgeon so I can get to know who he is. This is awesome news, but I am going to remain cautiously optimistic as with hospitals things can change very quickly. But still, YAY!

That old Adage

Lately it has been a case of waiting for one bus to arrive and then several arriving at once!  Where do I start...well a good place would be the baclofen pump.  Wondering what the heck was going on with my referal, I rang up the neurosurgeon's secretary to see where I was in the waiting list.  To cut a long story (and several phone calls) short, my referal got mysteriously lost in the post and the secretary had no idea who I was.

...riiiight.

More phone calls and a day later she rings me to say that I am now on the waiting list but it is unlikely I will get seen by September.

I HAVE BEEN WAITING SINCE FEBRUARY.

So today I rang my baclofen assessment unit and explained the situation to them and they thought it was pretty ridiculous.  While I was on the phone one of the baclofen therapy nurses told the person on the other end that they had something to discuss with me and could I come over as soon as a space was available?

Turns out that space is tomorrow, so here I am at my parents the night before wondering what it could possibly be about.

In addition to this I have had visits from Occupational Health, Social Services (which confirmed what I knew, my bathroom is deeply un-cripple friendly), and physiotherapy appointments, plus my wheelchair quotation finally arriving AND that I can get funding to go to the Calvert Trust...phew!

The Neurosurgeon Appointment

Right, it's been a bit hectic lately, so I finally have time to update on what has been going on!

Last month in February I went to see the Neurosurgeon who would be doing the procedure. She was very nice and straightforward, and had an example of the pump for me to look at and hold, to get an idea of what potentially could be going inside me!

So here it is:





It was a lot bigger than I thought it would be, about the size of a hockey disc, and weighing one to two pounds. That did not put me off though, I guess I will just have to make sure I don't get too skinny or it will stick out a mile!

The Neurosurgeon explained to me that because I was what they called a "walker" (even though that is only something like 5% of the time) I would probably feel the weight when I tottered around, but when in my wheelchair it wouldn't be an issue.
The main issue is getting the right dosage of Baclofen so that I still maintain some tone in my legs (the thing that helps me stand up), if at all possible, which is why I will need a week in hospital having the drug pumped into my spinal fluid via a tube, before getting the pump put in.

The thing that got me down a bit, and surprised me, was the potential waiting time between the testing stage and (if successful) actual implantation could be up to a year, as they have to apply for funding to do the procedure, as it an expensive one.

Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.

Well, at least it is getting done and the ball is moving. She suggested going back onto oral baclofen in the meantime, and when I pointed out that I would drunk 99% of the time, she said after a couple of months that could wear off.

TWO MONTHS??

I can't be basically drunk and out of my skull for two months! Though I'm sure some people would love that, I have Uni work, three Guinea Gigs, and some semblance of a social life to hold on to.

So, that's all for now!

Manchester and News

I have finally got a letter telling me when my appointment to see the Neurosurgeon is! I think it is just going to a consultation, and not the actual testing, but still, progress! So that will be in February next year, so hopefully the ball will start to roll quickly after that.

In other news, I went to Manchester yesterday to hang out with a friend. It was a very fun day, and to sum it up, Manchester gets a seal of approval for wheelchair friendliness! There was one "ah crap" moment, when we got to Weatherspoons, as we were confronted with steps leading up to the door. My friend went in to ask if there was a wheelchair accessible entry, and got quite confused as she saw a disabled toilet!

In the end it was all good, and there was an entrance around the back from another street.

So German Market brandy punch + relatively flat streets + bonding over nom noms = good times!