I have a question for all those with a programmable VP shunt. I am on my first one, it was fitted approx 3 months ago and it isn't working, I don't think it ever has! I had a LP 3 weeks ago and my pressure was 35, despite also being on 1500mg of diamox a day. I haven't had my "6 week" follow up yet and had to virtually telephone stalk the hospital to get my LP. It's a bit of a long story, but I didn't see my surgeon before the op to ask the necessary last minute questions I had, or see him afterwards, so I am a bit lacking in technical knowledge, so apologise up front for that.
What I have been wondering is whether anyone has noticed one of their "lumps" getting bigger at different times of the day? I know that one of mine is generally bigger anyway and I'm not sure if it is the reservoir or not, but it is the one closest to the entry point in my skull. The smaller one is further back towards my ear (there's only about 1 inch between them) and the tubing runs from this smaller one down my neck etc.
I have noticed that as the day goes on, my larger lump gets bigger and bigger, it goes from being flatter to really dome shaped and I almost feel as though it is going to burst out through the skin as it feels so tight. I am having to use my imagination here, due to said lack of technical knowledge, but is this the reservoir which is filling up with fluid and does this mean that my shunt may be working afterall but possibly not enough to bring my pressure down?
I know I should be asking my Surgeon this, but seeing as my "6 week" follow up is not until April (5 months post surgery) I am at a loss as to what it is. I have been told by the Registrar who did my LP that they won't adjust the setting of my shunt, as it has been set correctly during the surgery?? I thought the whole point of a variable valve was so it could be adjusted? Anyway, I have been told that I need more surgery to check the shunt and tubing out and to more than likely have a revision. It just seems extreme to go straight to a revision without trying to adjust it first.
Sorry for firing loads of questions there, but I am at my wits end with the hospital. I've had my follow up appointment cancelled 5 times and can't get any info out of my Surgeons secretary, so God knows when I'll get any further. The sad thing is when I saw my surgeon for the first (and only) time in September I really liked him and thought he was fantastic, but this whole pallarva has really upset me.
I would be really grateful if anyone can help to educate me on what this changing "lump" in my head is and what it might mean from their experience.