Jenny is alive and back home!
She has physically deteriorated and is in a bad way from the long ambulance journeys and the noise of being in a hospital and having doctors and nurses constantly coming into her room in hospital, which was always going to make her worse. We knew that before we went there.
The journey to the hospital took nearly seven hours and the suspension of the ambulance was bad so it was very bumpy. The physical trauma and exertion from her body being shaken about for that long meant that when she arrived at hospital she was having convulsions and was vomiting. She couldn’t even keep water down, which meant that she was dehydrated too. It was all too much for her body but she only just arrived in time for the MRA scan appointment because the ambulance had got lost in the London chaos of not being allowed to turn right or left down certain roads, plus road closures were added to the mix that didn’t show up on the ambulance’s Satnav. So Jenny had to go straight into the loud volume of the MRA scan after arriving, with no break and was in a bit of a stupor by that time.
As soon as the MRA scan was over, she got taken to her private room but didn’t get a break because the neurosurgeon arrived immediately, as previously arranged for her appointment. She wasn’t very with it by this time but she managed to communicate via a piece of card with the letters of the alphabet on, which she pointed to in order to spell out words. Unfortunately, the neurosurgeon did not like this at all and didn’t understand why she couldn’t speak. Not being able to speak is pretty common among severe M.E. patients and sometimes also with severe EDS patients but the neurosurgeon hadn’t come across it before and was giving her dirty looks and kept exchanging disbelieving looks with the nurse present in the room. Anyway the MRA didn’t show any aneurysms or blood vessel dissections, which is good, but Jenny never thought that those were the problems anyway. A couple of weeks ago, Jenny had communicated to Ann that she suspected that the problem was in the arachnoid layer and not the brain itself (the arachnoid layer is a membrane that is the middle layer of the meninges; the meninges surround the brain and are in the space between the brain and the surface of the head. The arachnoid layer is made up of blood vessels and elastic tissue). It made sense to Jenny as it matched her symptoms (starting to pass out if she spent more than about two hours with her head pressing against anything, like her pillow) and it also matched the sensations she has been feeling in her head and their position in her head. Although Jenny has an annoying tendency to always be right about things, it was still a bit of a surprise when the neurosurgeon said that the scan showed that there was a small arachnoid cyst. However, the neurosurgeon promptly went on to say “I don’t want you to even think about the arachnoid cyst; it’s irrelevant. A cyst that small does not cause problems”. He was very dismissive and it’s hard to argue when he wouldn’t entertain the notion that it might be a problem in an unusual case like Jenny’s. He went on to say that he had never heard of symptoms like Jenny’s before (the head and face getting increasingly numb when it was pressed against anything until she starts to lose her vision and pass out. She has to spend 22 hours of the day with her head off the pillow and putting her head and neck into strange positions in order to start to feel some blood coming back into the capilllaries that are affected. Unfortunately, the relevant capillaries don’t show up in MRA scans (or any type of scan?) so it was impossible to convince the neurosurgeon to believe what Jenny was saying was actually happening to her. He just kept contradicting her and saying that he’d never heard of that happening before. He didn’t seem to understand that Jenny has a rare illness (the vascular type of Ehlers-Danlos Syndrome is rare) and so maybe something rare or unusual was happening to her. At least he admitted that it wasn’t his area of expertise and that he didn’t know what to do and said that he didn’t think that there was anything he could do to help her as he didn’t know how to fix the problem. We got the strong impression that he thought that it was psychosomatic but he didn’t actually say it because he didn’t want to be rude. When Jenny communicated that she just needed to be able to lie down for more than two hours per every twenty-four hours and that she couldn’t carry on like this any more (it’s been eight months in this extreme state) and that she was collapsing from the exhaustion and sleep deprivation of only having two hours with her down on her pillow per every 24 hours, he just shrugged but did agree to test for vasculitis and to ring a neurologist to come and see her that night to see if he could help. Unfortunately he then came back to us saying that he’d rung several neurologists but they were all on holiday but managed to find someone, even though his specialism was in MS, but that he was a good neurologist.
At 9:30pm (we were all exhausted and collapsing by this time as the ambulance journey had started at 5am that morning), the neurologist arrived. Frustratingly, he had been told nothing about Jenny or her case and wanted to take her history from the very beginning of her illness, all through the years, and didn’t seem to understand that we weren’t there at hospital because of her existing illnesses, but to deal with the new problem that had started with her head injury. Ann was doing the talking by this point as Jenny couldn’t spell out things fast enough for the doctor via her communication card. Ann hadn’t even reached the point in the history about the head injury and the subsequent numbness etc. when he decided he’d heard enough and wanted to do a neurological examination. So he examined her and he did find some tenderness/slight painfulness on the occipital nerve in the head upon touching it. He then focused in on that though and suggested lidocaine patches. He also wanted physiotherapy for her neck (which is frustrating because physio makes Jenny deteriorate because of the severe M.E. and she is just too ill for it). He didn’t seem to understand how ill Jenny was. Time was up and it was very late so he left.
We thought that Jenny was going to be in hospital a long time, until the problem was fixed but since nobody could help her, they were kicking Jenny out of the room by 10am the next day! So after all Jenny had been through, she had to face another long and gruelling ambulance journey the next day too. Thankfully the suspension on the ambulance on the way back was better so it was a little bit smoother so Jenny didn’t get shaken around quite so much. She has still deteriorated greatly from the whole experience though and is devastated because she didn’t think that she would be coming home until the problem with her head was fixed. As it is, she has to somehow keep going, with no help.
We have contacted a specialist in arachnoid cysts for a second opinion on her scan and to find out if a cyst that small could be causing her problems. We haven’t heard back from him yet. These things take a long time. If he agrees to take a look at her case, we will be sending him the MRI scan from February to compare with the MRA from Tuesday as it will be interesting to see if the arachnoid cyst has only developed since February or whether it has been there a while.
Jenny had some routine blood test results while in hospital, which had some abnormal results with low amounts of various types of white blood cells, so we are waiting to hear back from a doctor at the hospital to see what they make of those results.
Jenny is in a bad way but all the support and love from friends on twitter and facebook has been a bright spot in all this awfulness. She has seen your comments, which made her smile, but is too unwell to respond. She wants to let you know how much they mean to her and how grateful she is. When you’re so used to doctors/nurses being nasty to you, it’s overwhelming to have people be kind to you; she’s not used to it! Such an outpouring of support and love has been wonderful. She has seen the two Five By Five challenge videos that were done while she was in hospital and she was absolutely beaming; they made her so happy and emotional. Thank you Laura and Justine; she really needed that boost right now. She apologises that she’s not able to respond to them or to thank you personally at the moment. I hope that lots of others decide to join in with her Five By Five challenge ( https://mydonate.bt.com/fundraisers/fivebyfive ). It would make such a difference to her at the moment.
Thank you all for your love and prayers. I hope this update satisfies all the people asking for updates on the situation! Thank you for caring and for being so kind. A big shout out to Jenny’s brothers, who were absolute superstars while we were in London, who dropped everything to help us out. Hopefully, following up the leads on the arachnoid cyst and in the blood test results will help us get to the bottom of the problem, so the trip won’t have been for nothing. I don’t think Jenny is ever going to be able to be moved again; it was just too much for her body.
On a lighter note, Jenny communicated while grinning that she was disappointed that no doctor, nurse, paramedic or porter commented on, in her words, “my awesome t-shirt”: