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.

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 must go to E.G who looked after the dogs for us so we were able to attend the appointment.

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

Another Hospital Adventure Part Two

Last week I wrote about just the first 24 hours of my three-day hospital stay, if you missed it you can find it HERE. This week’s blog post will be about the remaining two days.

Day two

I woke up happy in the knowledge that Jay would be coming to visit me, we had feared had we not been able to arrange a sitter for the dogs he wouldn’t have been able to visit (thank you I.C).

Quite early in the morning one of my neurologists came to see me to give me the MRI scan results (which were negative) and to advise me that an anaesthetist would be coming to speak to me, he told me I needed to convince her to do the epidural blood patch. I should have realised then that she wasn’t on-board with it but it went over my head. He also discussed occipital nerve blocks (injections in the base of my skull) to see if that made any difference. If they didn’t it was more proof that the leak was real, he told me for the moment we wouldn’t be doing the caffeine infusion if I was getting a blood patch the following day.

Within about 30-40 minutes the anaesthetist popped around to have a chat. We spoke about my various medical conditions, the pro’s and cons of an epidural blood patch, the procedure itself and the protocols for recovery. The meeting seemed very positive and it felt like it was a go. Halfway through the meeting Jay turned up and he was able to give his input on how incapacitated I have been etc.

After she left we decided to have a coffee downstairs in the restaurant but as we were about to leave the neurologist came to see us and asked how the meeting had gone. We told him she had gone away to do some research ( and I had pointed her towards CSF Leak Association ), she would get back to me and that we both felt the meeting had gone well. He then asked me to go back to the ward as he wanted to do the occipital nerve block injections.

He did say the usual “short scratch coming” which at the moment still feels like the understatement of the year. I pride myself on my high pain threshold after having a lumbar puncture when the local anaesthetic had worn off, putting up with the most horrendous bowel adhesion pain for 6 months before they operated. Nothing prepared me for how painful this was. The doctor felt around the base of my skull asking which part was most painful and then injected local anaesthetic into that area. I was injected 4 times, the worst bit on the following three was knowing how sore number one had been. The pain made me sweat almost immediately and tears pricked my eyes. I have very colourful language and was mindful that we were on the ward, so managed to limit myself to the odd “Jesus Christ” and “Shit the bed”. I have no idea where shit the bed came from it’s not something I use ever but it helped.

The feeling of numbness was exceptionally weird, the back of my head felt like it was missing and the tips of my ears went numb. I was determined to go and have a coffee (and a fag to be honest) so immediately after the injections were administered I left the ward. As I had spent so much time lying flat I knew I would get an hour or so upright. My days are spent lying down so I can get the odd hour here and there to get stuff like having a shower done. It’s not a great way to live but it works for me at the moment and you have to play with the cards you have been dealt. At the moment I have an extraordinary bad hand but I am just waiting for a fresh deal.

Jay could only spend a few hours with me and they raced by. The times when I had visitors (my parents visited every day) went the quickest. The ward I was in was classed as short stay, essentially you were there until they could get you a bed on a proper ward, so patients were always changing over. By Thursday afternoon I was the only original patient left from those I was in with on Wednesday.

In the afternoon the anaesthetist returned, she caught me wheeling myself back from the toilet. Her opening statement was “You look better after those nerve blocks”. I didn’t look better, I didn’t look any better than I had done that morning. The only difference was the back of my head was completely numb. My head was still pounding every time I was upright. I knew with her opening gambit the news wasn’t going to be good.

She had decided that she wasn’t going to do the patch, she blamed the fact I had EDS (something I hate because ever doctor who refuses to treat me does this despite all the literature telling them the only difference in surgical approach is the closing of wounds. I find it incredibly lazy and insulting). To be fair I don’t really remember much of the conversation as I was crying so hard. She told me she thought the best thing I could do was be referred to pain management. She seemed to think that this was the perfect solution, me lying down for the rest of my life stoned off my bonce on pain meds.

I cried on and off for the rest of the afternoon. It was a mixture of anger and frustration, I knew I couldn’t tell Jay at this point because he had left thinking that the blood patch was being done the following day and that potentially I would be fixed. I rang my mum, who talked me out of self discharging, I can say truthfully if she hadn’t had been on the end of the phone I would have just packed up my belongings and got a taxi. I was so frustrated with it all that I couldn’t see the point in being separated from the dogs and my husband any longer. My parents drove across the city to come to see me and to give me the medical information they had printed off about CSF leaks and epidural blood patches.

I didn’t see any other doctor after the news that the blood patch wasn’t going ahead. I want to think it was because they were as frustrated as I was although the thought has crossed my mind that they had heard about me losing my shit with the catering staff and were in hiding.

I rang Jamie later in the evening to tell him that the epidural blood patch would not be going ahead. I managed to hold it together and not cry whilst I was talking to him. We were both exceptionally angry as we had been sold the hospital stay on the premise that I would have a blood patch, that I could possibly get better. He had lost a week’s holiday pay taking the time off. It was such a blow to both of us that we are still angry about it. I should never have been admitted if they didn’t have the anaesthetist on-board.

Day Three

I woke up in agony with my back and spent the usual amount of time begging for pain relief. I wish I was allowed to administer my own medications in hospital but as they are controlled drugs I am not allowed. So I am at the mercy of the nurses and how busy they are. My head was also really bad as I had spent too much time upright the previous day. I couldn’t lift my head of the pillow without intense stabbing pains. My eyes were also extremely sensitive to light so from 6am I was wearing sunglasses.

My back never copes with hospital beds and always causes me lots of problems. Quite often it will take me a good 48-72 hours to get my pain levels back under control after a hospital visit, which is simply ridiculous. In hospital I had been confined to my bed as I couldn’t sit in the chair as my head wouldn’t allow this. At home I can lie down on the sofa or on my bed and the changing surfaces stops my back getting too angry. However today I could quite happily rip my spine and surrounding muscles out as I am in agony with muscles that are in spasm. Pain makes me emotional and tired, which is not a good combination. Any tears in front of a doctor and you are immediately labelled as depressed.

I saw a different neurologist first thing in the morning who advised me that the caffeine infusion would be going ahead. In my notes the pharmacist had left a message informing the doctors I would need an ECG before the infusion. To which this doctor said I didn’t. Without a definite yes or no on the ECG my treatment was delayed further. All I was concerned about at this point was getting home and I was getting frustrated that no one was taking any action. By 10am I was washed, dressed and packed, that is how serious I was about leaving. I was also beyond exhausted, although I had been sleeping whilst in the hospital I was constantly being woken up by people being moved into the bay. My bed was right beside the door and no matter how careful the porters were my bed ended up being bashed by the door as they wheeled a bed through. It would hit the end of my bed so hard that the whole thing would shake. People were in and out constantly so my no matter what time of the day or night it was my bed was being knocked.

Between approximately 10-11am I saw my usual neurologist who apologised for the change in plan, he was as surprised as I was that the anaesthetist had refused to do the epidural blood patch. He assured me that he and the consultant would come up with a plan. (I have now been home two weeks and have yet to have had any correspondence with them.I know things move slowly in the NHS and I am one of many patients, it’s just life is particularly tough at the moment). The plan for today was that I would have an ECG and as long as that was normal they would go ahead with the caffeine infusion.

Our bay was being looked after by the dream team today and I am not being sarcastic. The two nurses we had and the health care assistants were brilliant, really funny, got stuff done quickly and were in and out all the time. In the two days prior to this we were lucky if we saw anyone at all for hours at a stretch. One of the nurses was the lovely lady who had come to my rescue on the first night when I had the issue with food (Cottage pie, Fish pie anyone?) and we had a male nurse as well. I don’t know who was more unlucky, me or the male nurse as he was the one going to be doing my ECG. If you have never had an ECG, they basically stick a bunch of sticky pads on your body in various places. It can be a bit embarrassing for all involved if you have a large chest (that’s me) as a lot of the stickers have to go around and under your bosom. Years ago I had a very embarrassed male nurse putting the stickers on and he could barely bring himself to touch my breasts to put the stickers underneath. Now when I have an ECG I grab the bull by the horns and grab them myself cupping them out-of-the-way to spare both our blushes.

As expected my ECG was normal and half an hour later the caffeine infusion was started. I was warned prior to it starting that if I got palpitations, felt weird etc I was to call for a nurse. I really didn’t think I would feel anything as I drink so much coffee these days as caffeine boosts CSF production. Some days the coffee helps a lot and other days it makes no difference at all. The infusion would take about two hours to run and after that I would be free to leave the hospital. It was a very long two hours!

Just as the IV was started lunch was served to our bay. The catering staff out did themselves, managing to give 5 people the wrong lunches and I ended up without one. When we tried to get the catering assistant to sort it out, she left the bay without speaking. We ended up calling a nurse to then get hold of the catering supervisor to sort the cock-up out. I eventually got my vegan curry, however the lady across from me who suffered from Coeliac disease couldn't get a guarantee from the catering staff that her meal was indeed gluten-free. I on the other hand never ever want to eat curry again.

Initially I felt nothing as the drip started. It was only on the 30-40 minute mark I started to feel strange. I felt like every muscle in my body was twitching or vibrating and I felt really buzzy. I started to get palpitations which I thought were more to do with postprandial hypo-tension or reactive hypoglycemia. I did call for a nurse and my observations were taken, my blood pressure was just bizarre 121/66 ( a wide pulse pressure of 55 should be nearer 30) and a pulse of around 75. So there was no need for concern and the infusion could continue.

As time went on I noticed that my head pain had reduced and I was now able to sit up without grabbing at my head. This effect lasted for 5 hours, believe me to be headache free for 5 hours was absolute bliss. It also reduced my head pain for the following 5 days. By the time the infusion finished I was sat up and no longer had to lie down. I had my sunglasses off because my eyes weren’t light sensitive and they remained that way for the  following 5 days.

I managed to leave hospital at around 3:30pm with a diagnosis in writing of Spontaneous Intracranial hypotension (SIH) or in layman's terms a cerebrospinal fluid leak. I suppose even though I hated every minute of being in hospital at least I have that diagnosis, which has been backed up by the occipital nerve block injections and the results of the caffeine infusion.

We are still raising money via Help me walk the dogs again for a new wheelchair and power trike attachment so I am able to get up to Woodbury Common and walk the dogs again. We have now raised £1400 of the £5000 we want to raise. Hubby is getting his back waxed on 31st July and as you can see from the picture he is pretty hairy! You can sponsor him via my go fund me campaign. The waxing is being recorded and it will be released on YouTube and via my blog.

Many thanks

Rach

Another Hospital Adventure part one

The last time I was in hospital was 2014, which you can read about in these two posts Emergency admission part one and Emergency Admission Part Two . This time I wasn’t at my local hospital but one an hours drive away. I was admitted on the premise there would be an MRI and a blood patch later in the week. I am sad to report the blood patch didn’t happen. I am back to square one on the headache front. I will explain more in next week's post.

As usual my hospital stay gives me much to blog about. I really wish it didn’t. I really wish that every doctor that you come into contact with didn’t question my  EDS diagnosis, even once I have explained my family history, I am still expected to show how bendy I am like some sort of performing seal. Why is it that the doctors that diagnose you tell you never to do your party tricks because it ruins your joints and essentially makes them more lax yet every other doctor you meet wants you to show them? It makes no sense to me. I may actually just take the photos in from my blog post in - from May 2014 .

The admission came quickly, I was really wasn’t expecting to be admitted so soon. It was exactly a week from my first meeting with my neurologists. Those of you who have followed my blog for some time will know my feelings about neurologists. These two at the moment appear to be different, as with any health professional I never let my guard down. I haven't seen them enough to pass a definitive judgement but so far so good.

I had been having a truly awful day on Tuesday 28th June, the pain had been crippling all day. It had been bad all week but this was on a whole new level. Jay had to come home from work to look after me, as I could barely manage to get myself the short distance between my bedroom and the bathroom. I have no idea what time the phone rang but out of the blue the registrar rang, Jay initially took the call but then handed the phone to me. He asked if I could get to the hospital for 9am the following morning. I had to be there that early so that I could get a bed as I would be in the hospital system before other demands for beds were made. The plan was to give me an MRI scan on Thursday and do an epidural blood patch on the Friday.

I can’t lie I was excited, the chances of my headache being ended was around 80% with the administration of an epidural blood patch. The end was finally in sight and I would be able to get my life back. I also knew there was a possibility that it wouldn’t work and I had to try to prepare myself for that outcome to. Unfortunately I didn’t prepare myself enough for the outcome of never receiving the blood patch, I am angry at myself for letting my guard done.

I had the usual problems on arriving at the hospital, mainly the staff in the small unit just wouldn’t listen to me. I tried to tell them that my veins are an utter nightmare however they were more interesting in chatting amongst themselves about a colleague being proposed to at the Glastonbury Festival and that this was now all over the internet. I tried not to get annoyed as I had no idea how long I would be remaining on the unit and would be requiring their help to get me to the toilet etc. I had to ask twice to be moved to a bed where I could lie down despite my notes stating what I was being admitted for and the “ward” containing 6 beds of which only 2 were occupied.

My team of doctors saw me quite quickly and discussed that they would probably be able to get me a MRI scan that day. Which was a relief as it could have meant that I would get to leave much earlier than envisaged. Always a bonus and I absolutely loath lying around in a flood lit, noisy hospital ward. Since the leak started most days I have to wear sunglasses (even indoors) and I am hyper sensitive to noise (it seems to echo about in my ears which isn’t fab when hubby is suffering from the worst hay fever he’s had in years and is sneezing all the time, obviously that can’t be helped). Hospital stays always make me much worse due to the over stimulation and the stress of it all.

My MRI was booked for 3pm and was the longest scan I have ever had being brain and the whole of my spine. No sign of a leak could be found which isn’t that uncommon (my neurologists certainly weren’t expecting to see it) but I did get the diagnosis of reversed cervical lordosis, which means the natural curve in my neck has gone and is now reversed.

Unfortunately (I seem to like using this word) the staff in the small unit weren’t happy that the MRI had been booked in the mobile unit. From family members having MRI’s booked in there I knew this meant one of them would have to push me up the very steep hill to get me there. On finding out that they would have to do it, one of them stood at the end of my bed, hands on his hips shrieking “where is your husband?” when I replied “in Exmouth” he really wasn’t happy

“Is it a power chair or manual?”

“Manual” I thought that answer was quite obvious as they had pushed me to the toilet twice, however on the second time I asked to go to the loo I was asked “Can’t you walk?”. Again the answer was obvious but clearly not to them.

“I will have to push you then” He didn’t exactly sound overjoyed at the prospect but as I had no control over where I was getting my MRI, I wasn’t going to be made to feel guilty.

The staff members on this unit were one of the worst I have encountered. Usually you get one shit member of staff but the others are good. After moving my wheelchair and walking stick out-of-the-way one asked me if I was fully mobile on completing the clerking document. When I said no she looked perplexed, I gestured to the wheelchair as what little patience I had left was ebbing away. It was another case of just not “looking sick” enough. She didn’t seem to believe me when I told I self catheterised or that I had problems with swallowing…….*face palm*.

I got moved to the ward and never saw a nurse or healthcare assistant until gone 5pm and that was then only because I was kicking off about the food. A catering assistant came to the end of my bed and explained no food had been ordered for me earlier in the day...which the small unit I had stayed in could have done, so all he could offer me was a selection of sandwiches. That would have been fine, had they not all contained meat. English was the gentleman’s second language, I tried to explain I was vegetarian, he didn’t get it. I told him I didn’t eat flesh, no he didn’t understand that either. I said I don’t eat animals…...He then offered me that well-known vegetarian speciality of cottage pie.

I did lose it slightly and told him if he didn’t understand what I was talking about to get me someone who did. He quickly brought a nurse back with him who offered me another vegetarian delicacy….fish pie. I again explained I was vegetarian (I am actually now vegan about 80% of the time but knowing this was probably going to be difficult had decided I would be vegetarian whilst in their care) and said I would eat a cheese sandwich. The catering assistant then told the nurse the kitchen was closed, she wouldn’t take no for an answer and made him check on the next ward over for a cheese sandwich. One was located and I got to eat, bless the nurse though as she came back at the end of her shift, apologised for the problem and told me she would be looking after me tomorrow so any problems give her a shout.

In between me actually getting something to eat and the nurse coming back, one of the patient’s visitors had decided I was racist and that I was just being difficult for not eating meat. He told me “after all it’s not the hospital’s problem you’re a fussy eater”. He chuntered on for a bit, getting other patients to chime in and in the end I had to tell him that he either shut up or I would call someone into remove him. I pointed out that as a lifelong vegetarian I was entitled to be catered for and asking to speak to the catering assistants manager is not an act of racism. It has become a bit of a joke in our house now as when Jay asks me if I want something to eat he offers me cottage pie or fish pie and when I refuse them, he mutters racist under his breath. It is the first time in my life anyone has ever accused me of that.

This had all happened in less than 24 hours, so to say I was stressed would be a minor understatement. As usual I had problems getting my medications but this time it was due to the fact that my prescriptions hadn’t been written on my chart. The nurse told me I couldn’t have the medications hadn’t been prescribed for me, to which I replied yes they have my gp prescribed them. I know I am a smart Alec but I really needed oramorph at the time and I was also 90 minutes into having no painkillers in my system which hadn’t helped my mood.

As this post is going to be a long one I have decided to split it into two. Really long blog posts irritate me as a reader and I imagine many of you are the same.

So just to recap I didn’t receive an epidural blood patch whilst I was in hospital, despite being told that was what I was coming in for.

I am still having to spend the majority of my days lying flat and I am in medical limbo whilst I await the plan that my neurologists are putting together.

In next week’s blog post I will explain why the epidural blood patch didn’t happen and what other mayhem I caused.

We are still fund raising for my new wheelchair and power trike attachment and you can find details here - go fund me help me walk the dogs again