It's nearly Christmas!!!
My absences have been getting pretty bad at the moment. They're becoming almost 20 minutes long and I feel as if I am losing all feeling in my back. It's more or less like all of my bones in my back have vanished and I just slump forwards into an absence and I become double-jointed. Emma always has to try and catch me when she is sat next to me because I am bent almost in half. I feel as if I am stretching my back and twisting it all over the place, so when I am sat in certain positions, the side of my back really hurts.
When I'm lying down in bed or on the sofa, then I tend to feel fine because the muscles in my back feel very relaxed and I don't feel tensed up at all. However, when I sit up I instantly feel in pain because I am not relaxing my back to stand up and I am trying to sit up straight. Sometimes if I sit or stand in a certain way then the pains start, which isn't very good when I am working in a shop and I am constantly walking around!
I received a letter today from my doctor. It was a copy of another letter to a neurosurgeon to discuss me having a VNS implant. It basically said that I am a 21 year old (he actually got my age wrong, I'm not 21 until next week!) who has intractable epilepsy. In other words, that means epilepsy that couldn't be controlled. He said that I have tonic-clonic seizures every 3-4 weeks, absences every day, what I went through on holiday with my repeated seizures and my psychosis (thanks for reminding me!) and that he had explored every avenue that could be looked at and he doesn't know what I could have next.
It then went on to say that I am a very good candidate for the VNS implant and he would like me to have the 106 model. After receiving the letter, we did some research on what the 106 model is and we found out that it is the latest model and it was only available since this year!
We are very excited for the VNS implant, but for me it is nervous excitement. I have never gone under anaesthetic before. I have stayed overnight before - I actually went in there for a week exactly a year ago today but I guess being under anaesthetic is different. My parents have said that it's like being asleep, so I will just have to rely on what they will have to say!
Monday, 14 December 2015
Monday, 7 December 2015
VNS Implant!
It was my doctor's appointment today and of all days it was on my mum's birthday! We were there to not only discuss my medication, but also about a VNS Implant!
VNS stands for vagus nerve stimulator. We have decided to push for this because I have been put on and off five or six different types of medication and they don't all seem to be working. Lots of people use VNS to control their seizures.
The therapy is delivered by a generator which is similar to a pacemaker and a thin, flexible wire. This helps to send lots of impulses to the brain. There are side effects which tend to affect the voice and make it more hoarse.
A small generator is placed in the left chest area, and depending on the settings on the generator, a procedure is needed to replace the generator usually after between 3 to 8 years. This is done under local anaesthesia.
The generator is usually turned on after 2 weeks of the implant procedure.
The VNS magnet is used by briefly placing the implant over the generator to either shorten or stop the seizures. It can also decrease the intensity and reduce the recovery time.
I have been feeling a bit nervous about going under general anaesthesia. I've never done it before but I'm sure I'll be fine once I'm there. But I'm being referred now so it's all going ahead!
Mum also noticed a bit of my hair coming out recently. I haven't noticed anything and it didn't seem to be very bad, but the doctor said it may seem to be because of the repeated seizures that I had on holiday and the psychosis that I had. I thought that I had gotten over that, but she thinks it may be some shock of that happening.
So, fingers crossed that everything goes well!
VNS stands for vagus nerve stimulator. We have decided to push for this because I have been put on and off five or six different types of medication and they don't all seem to be working. Lots of people use VNS to control their seizures.
The therapy is delivered by a generator which is similar to a pacemaker and a thin, flexible wire. This helps to send lots of impulses to the brain. There are side effects which tend to affect the voice and make it more hoarse.
A small generator is placed in the left chest area, and depending on the settings on the generator, a procedure is needed to replace the generator usually after between 3 to 8 years. This is done under local anaesthesia.
The generator is usually turned on after 2 weeks of the implant procedure.
The VNS magnet is used by briefly placing the implant over the generator to either shorten or stop the seizures. It can also decrease the intensity and reduce the recovery time.
I have been feeling a bit nervous about going under general anaesthesia. I've never done it before but I'm sure I'll be fine once I'm there. But I'm being referred now so it's all going ahead!
Mum also noticed a bit of my hair coming out recently. I haven't noticed anything and it didn't seem to be very bad, but the doctor said it may seem to be because of the repeated seizures that I had on holiday and the psychosis that I had. I thought that I had gotten over that, but she thinks it may be some shock of that happening.
So, fingers crossed that everything goes well!
The VNS Diagram
The Generator and Wire
The Magnet
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