Today (Wednesday 26th October 2016) I saw my Neurologist for the first time since June. I had to cancel an appointment at the end of September due to hubby being too sick to drive me there. It was a nightmare of a journey.
We normally use a road called the A30 and then turn off and use the A386 into Tavistock. All was fine until we turned off the A30 and went down the slip road to turn left only to find that the road was closed for road works and completely coned off. Jay and I don’t really know this area so we had to follow the signs for the diversion, although in usual Highway Agency style, the signs were small and made zero sense.
We ended up back on the A30 travelling towards Cornwall when we saw a turn off for Tavistock coming up. Tavistock is where the neurology clinic I attend is held and it is a small cottage hospital. As we drove the first few hundred yards down the road we came across a sign that said Welcome to Cornwall. Jay and I freaked out as it was now 10 minutes past 10am and my appointment was at 10:30am. We had no clue where we were or how long it was going to take us to get back to Tavistock.
I would have liked to enjoy the countryside but we were both stressed out looking for road signs that may give us some indication of where on earth we were. A few minutes later we found out we were in Launceston and we passed an area I recognised from years ago when we used to visit friends in the small village of Stoke Climsland.
We made it to Tavistock hospital with 4 minutes to spare and the Gods were obviously smiling on us as we pulled straight into a disabled parking spot. Normally the drive from Exmouth to Tavistock only takes us 70 minutes however with the diversion it took us nearly 90 minutes on roads that were single carriageway and the majority of the time a 30mph speed limit. I am glad that we always set off early giving ourselves at least 90 minutes to get there.
Thankfully we didn’t have to wait long to be called in and I saw my consultant rather than one of his registrars. We had the normal quick catch up on how I was doing, did I respond to the caffeine infusions etc. Then he apologised profusely for the fact the epidural blood patch hadn’t been performed at the end of June. He explained that the anaesthetist had been onboard with doing it before they asked me to come into hospital on 28th June but once she had read my notes and had seen how badly I am affected by EDS, she had declined.
I told my consultant that naturally I had been devastated at this turn of events and that it seemed rather kafkaesque to be in a situation where I have EDS, EDS has caused the leak but the anaesthetist won’t perform the epidural blood patch because I have EDS. He did more or less admit that this was a crazy situation to be in. That if he had known that she would back out that he wouldn’t have admitted me to hospital. I have never known a doctor apologise so much, at the time I had been left feeling that somehow I was to blame for the epidural blood patch not taking place, when I had been dealing with the registrar. However I did point out that if someone is going to be sticking a rather large needle in my back I need them to be confident in what they are doing. There are many things that could go wrong with this procedure, I could be left with a numb leg, permanent pins and needles etc but all of these side effects pale in comparison to what I am living with at the moment. Where I am not truly living but just existing. I was quite clear with him that I cannot continue to live like this and he said “no you shouldn’t have to when there is a procedure that could stop all this”.
I also thanked him for being on my side and not giving up. I expressed my fear about going to the National ehlers Danlos unit and that they would tell me the head pain was a) Migraines or B) NPDH (new persistent daily headaches). He said if they did then he wouldn’t believe them and would continue to push for me to have the epidural blood patch.
He asked me if he had told me about migraine lenses and I said he hadn’t. He said that there was a place in Plymouth connected to the university that make lenses for glasses that cut out certain wavelengths of light. I constantly have to wear dark sunglasses as light really hurts my eyes and it can be a way for me to prevent my head pain getting worse if I wear them. The centre in Plymouth has a range of lenses that cut out the different types of light and by visiting them they could test my eyes and workout which wavelengths affect me the most. They are called migraine lenses as many people who have bad migraines are light-sensitive, by using these special lenses they can reduce the number of attacks they have. I don’t think this will be on the NHS and I dread to think how much these lenses are going to cost but it means I won’t look a dick all the time by wearing sunglasses indoors during the winter months then I will go for it!