More surprises

I had been planning on doing something different this week with my blog but my head has been rubbish due to the pain caused by the CSF Leak. I did however bite the bullet and ring the consultant’s secretary yesterday (Tuesday) as I hadn’t heard anything and it had been a month since I had been admitted.


Today (Wednesday) I had a phone call from the consultant’s registrar asking if I could get to the hospital tomorrow for midday. Unfortunately although Jay (hubby) is on annual leave I would need to find a dog sitter at extremely short notice, so that I would have furniture when I returned and my neighbours still speaking to me. My dogs do not like being left and when not vocalising their disgust at the situation they set about systematically destroying everything I own. So leaving them for 5-6 hours is not an option.


So now frantic phone calls are being made to our friends to see if any of them can help out at all.


The hospital want to do another caffeine infusion as the results were so good last time. The pain came back at full strength two weeks after the first one. The hope is that it will also stop the occipital neuralgia I have developed as a consequence of the leak. As unfortunately the pain in my scalp and back of my head / neck has returned also and they don’t like to administer the nerve block injections again in such a short space of time.



I am pleased I will be getting the caffeine infusion again, it’s just a nightmare that it is over a 120 mile round trip (2 hours in the car) to get there. Because I am under two commissioning care groups it would take weeks of negotiations to get the caffeine infusion locally. So if it becomes a regular thing then they have said they will arrange it locally for us.


So a week when we thought everything would be calm and Jay would actually get a rest has turned into another week of surprises.
Jay is also getting his back waxed on Sunday to raise funds for my campaign Help me walk the dogs again so if you can spare a couple of quid it would be much appreciated!


A flicker of light at the end of a very dark tunnel

This post was written back in June, the week before I was admitted to hospital for the CSF leak. In an ideal world it should have been posted before Another Hospital Adventure Part 1& 2. The universe has a way of throwing things into the mix and ruining plans. Like last night having to clear up mountains of dog puke because yet again Frankie thought it would be a lot of fun to play with a toad whilst out on the walk. It doesn’t matter how many times this dog is sick because of it he never puts the two incidents together!


Yesterday (Wednesday 22nd June) I had my long-awaited appointment with the neurologist regarding my suspected Cerebrospinal (CSF) Fluid leak. As expected I had very little sleep the night before, waking at 1am, purely due to how very stressed out I was. You see neurologists and I don’t mix. I have met several of them and found that they say all the right things to your face and then write character assassinations in your notes. Some of the crap they’ve written in my medical notes still haunts me and influences how other doctors treat me. So my hopes weren’t high that this would be a good appointment.


My appointment was at what we call in the UK a cottage hospital ( a very small rural hospital that can deal with minor injuries) that was in a town over an hours drive away. I had been fretting about how on earth I was going to make it sat in a car bolt upright for an hour, with the car bumping around all over the place. Before we left I got myself a hot water bottle and once in the car pinned it between the back of my head and the headrest. That really helped. We had also decided to travel the scenic route taking the A30 over Dartmoor and it certainly didn’t disappoint. Many comments were made regarding how many power trike friendly walks there were as we passed by Oakhampton.


The journey took us  70 minutes and I won’t lie my head was so sore by the end I would have cried if I had the energy. The only thing keeping me going at this point was the fact I would possibly be able to lie down once in the waiting room. The waiting room was tiny and there were only 6 people in there including us, it also had free Wi-Fi unheard of in the hospital I normally attend. However there would be no lying down unless you had the figure of a five-year old child.




This was my worst nightmare, there was barely any space to park the wheelchair (this really grinds my gears as every hospital I attend there is no space for wheelchairs in the waiting room which to me completely defies logic) and consequently no space to lie on the floor either.


I tried my best whilst in my chair to keep my head as low as possible which meant I was basically leaning forward with my chest resting on my knees. There are some occasions where EDS is a bonus, such as losing an item behind a unit and because I can slip my shoulder to the point of dislocation I can reach down the back of the unit, so today was a day I was grateful.


We waited what seemed an age before we were seen, quite often I take this as a good sign as it means patients aren’t being rushed in and out conveyor belt style. We were ushered in around 30 minutes late, by then my head wanted to explode. Inside the room there was a bed that taunted me, I was too scared at this point to ask if I could lie down on it for fear of being judged by the doctor. I felt he could think that I was requesting to lie down for effect, so stupidly I toughed it out.


It was quite obvious early on that the diagnosis of spontaneous intracranial hypotension (a CSF leak) that my gp had first suggested in April was the diagnosis that the registrar that we were seeing believed it was also. I was asked about migraines and I was starting to panic I was going to be fobbed off with cluster migraines / headaches however I told him that my migraines never simply go away by lying down. Also I only have two to three migraines a year now that I take a medication that helps prevent them. The positional quality of the headache associated with a CSF leak is what sets it apart from all other headache / migraine conditions. A lot of the appointment was spent talking about the quality of the pain, if there were any triggers etc.


I had the usual neurological checks, smile, blow out your cheeks, raise your eyebrows, lift your legs etc. Then He touched my face to see if it felt different on my right cheek to my left cheek, which it did. I have a constant feeling of pins and needles on the right side of my face. This is very common in CSF Leaks so it hasn’t been something that has worried me although it is very annoying. I also had a penlight shone in my eyes which really hurt as I am so sensitive to light when my head is bad. I have found myself wearing sunglasses pretty much constantly since this all started.


At around 30-40 minutes into the appointment I was really struggling. I was having the ice pick like pains in the top of my skull. When the registrar said he was going to get the consultant I just said “I am sorry but is it ok if I lie on the bed?” He was so nice and said of course it is. I could have kissed him I was so happy because all I could think of was the hour’s journey back in the car and without lying down I wouldn’t have been able to do it.


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Within minutes of lying down the pain slowly began to subside, by the time the consultant and registrar came back into the room I was feeling almost human again. The consultant confirmed again that they believed I was suffering from spontaneous intracranial hypotension and started discussing a plan. He told me they would get me into hospital within the next two weeks, which at the time I didn’t believe and it was just one week later I was admitted. His plan was to give me an MRI of my spine and skull, although he said there was a strong possibility the leak wouldn’t be seen. They would also give me a caffeine infusion and attempt to find an anaesthetist to give me a thoracic level epidural blood patch. As you know now, I didn’t get the blood patch.


Since I first started writing this piece I have been in hospital, had my MRI which as expected showed no sign of a leak, had occipital nerve block injections and a caffeine infusion. I am still alas waiting for the epidural blood patch and waiting to hear what is happening next. Both Jay and I were so hopeful after this appointment which is why we jointly came up with the idea for the title. We really did feel that after getting nowhere for so long that things were starting to change. Looking back now I feel so sad, although I have had the tests and jumped through the hoops they wanted I am still living with this pain pretty much daily.

Many thanks to E.G for looking after the dogs so that we could attend the appointment.

We are still raising money via our campaign –Help me walk the dogs again