Stimulator removal agreed!

I’m a very grateful to have a neurologist and his team who are incredibly supportive and who I genuinely believe care (as believe me not all the ones I’ve seen are like that in the slightest), they have tried very hard to help me since I started seeing my neuro back in 2011. Unfortunately all attempts have not worked out, my headache being unresponsive and resistant to all treatment; and as you know this latest one has caused me more pain (turns out my brain is weird but I think I already knew that anyway!). In April I wrote a post entitled ‘what I wish I could tell my neurologist tomorrow’, at the time when I saw him I wasn’t quite able to tell him much of what I wanted to and chickened out of showing him the post as well. However a week or so later I built up the courage to send it to him.
Last week I had a surprise appointment, it had been booked in ages ago and I had been aware of it however I thought it had been cancelled and was expecting to be seen in July instead. After ringing up to see about a July appointment they said to come to this one instead. I then ended up in my local hospital Monday-Tuesday but luckily managed to make my appointment on the Wednesday, before being admitted to a different hospital in London that afternoon under the neuro-gastroenterologist I’m seeing.

My appointment went well and I felt very supported by my neurologist and his team, we had a long discussion about a number of things. The main being my stimulator, my neuro said that if having my stimulator removed is what I want then that is more than okay and he will arrange it. We discussed some issues surrounding that but I still said that I would like it removed, so they should hopefully be placing me on the neurosurgeons waiting list and it will be a 2-3 month wait for surgery roughly. I asked whether removal would alleviate the extra headache in the back of my head or whether I am stuck with that now, he said that it should hopefully resolve with removal of the stimulator. We discussed some future treatments that are hopefully in the pipeline in a couple of years time, and my ongoing other health issues.

I left with a mixture of feelings – grateful that I had felt heard and supported by them which isn’t out of the norm. I also felt a mixture of happiness and relief but also heartbreak and depression. I feel happy and relieved that it won’t be long before I am hopefully rid of this stupid device inside my head, that has caused me so much pain and still continues to. But on the other hand I feel heartbroken and devastated it has come to this. This was meant to be my answer, my last resort, but it has failed and now I’m not sure what to do or how to move forward.

Have a lot going on at the minute health wise which is making my head spin a lot. But knowing that my stimulator will be removed in the near future, which may hopefully relieve the extra pain in the back of my head, is quite a relief and gives me one less thing to worry about.

 

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Stimulator re-turn on day.

I’ve been a bit lax with my posts lately and I’ve been meaning to write this post since last week, but it’s been bit crazy.

Last Thursday it was my 23rd birthday, I had a nice day with my family and a meal out in the evening with them and some family friends. Overall the day was quite good and I didn’t feel too miserable despite often feeling a bit disheartened every year I get older and I’m no better if not worse health wise.

On Friday I had my reprogramming appointment at the hospital in London to turn my stimulator on and onto the burst settings. I had a bit of a tube dilemma getting there and ended up having to run from the tube station to the hospital, only to get there to find that the rep from the stimulation company had been told to come at 11am instead of 10am like me and my nurse thought. It was okay though as I caught up with my nurse and told her my normal headache had gone back to baseline which is still bad but not as bad has it was when the stimulator was on however I still had the extra headache at the back of my head. She said that she would talk to my neurologist in the week and discuss what to do and let me know as she said that if I still had the second headache despite the stimulator being off then there is another problem going on, but she couldn’t comment on what that could b, understandably. We then had a bit of a laugh and a joke about things whilst we were waiting for the rep and I was filing in some headache diaries. She then asked if I had been charging my stimulator this past month and I hadn’t been because I presumed that because it was off I wouldn’t have to, apparently that’s not the case but nobody told me. Anyway it had enough juice ton do the reprogramming thankfully otherwise the whole trip to London would have been a waste of everyones time. The rep turned up and it took all of 5 minutes to turn it on and program it, this burst setting means I’m not meant to feel the stimulation at all and if I do I just turn it down but otherwise I don’t need to do anything.
I then headed for a quick lunch with Jacqui who ran the Rock Bottom event that I wrote about it my last post, which was really nice. And then headed home because I knew I desperately needed to charge my stimulator battery. By the time I got home my pain levels were quite high but I hoped it was because I had had a busy and stressful day going to London.

On Saturday I wen back up to London via my Grandparents house in Surrey with my Mum and sister as last year my sister bought me tickets to see the Harry Potter and the Cursed Child West End show for my birthday; it books a year in advance so the tickets were for this year. Anyway the show was absolutely fantastic, the best show I have ever seen, great storyline, great special effects and costumes, just utterly spell-binding. We stayed in London over night and then my sister flew back up north in the morning and me and my mum went to have lunch with my grandparents for mothers day. Me and mum then spent the afternoon and night at my mums best friends with her family and had a really lovely time with them. My pain levels throughout all this were still not good, however I still was thinking that it was probably due to having a busy few days. On Monday my Mum flew to Dubai to spend 3 weeks with my Dad and I drove back home.

I decided to ensure that I had a quiet few days this week to try and see if my pain eases and rule out the possibility that it’s actually worse because my stimulator has been turned back on. Unfortunately it’s still quite bad and I’m not feeling too optimistic. My nurse called me yesterday after speaking to my neurologist and he has said he wants to move my next appointment which was mid June forward to the 25th April instead. I’m pleased and thankful he is going to see me soon but I’m worried and concerned that it’s not going to be good news about my extra headache. I haven’t told them that my normal headache is worse again since the turn on of the stimulator as I don’t want to be too presumptuous about it. But I’ve said to myself I will give it till my appointment on the 25th and if it is still bad and has not improved I will be asking for it to be turned off and will be asking about removal of it.

To be honest I’m starting to feel more and more upset about the fact that I really don’t think this surgery is going to be a success and so far it’s just been a complete nightmare. I fought so hard to be able to get this surgery for me and everyone else on the list at the hospital. I know in my heart that despite now regretting having the surgery, I know that if I hadn’t have had it I would have always been wondering if this was my answer. But unfortunately I don’t think it is and I feel completely heartbroken about it. It’s left me worse than before I had it and I was not prepared for this. I struggle to find the words to explain fully about how disappointed and heartbroken I feel right now and I haven’t really told anyone about how I’m feeling about any of this. I’m also very very good at pretending I’m okay and not talking about how I actually feel so nobody is none the wiser.

Anyway keep you updated on the stimulator issues.

Wishing you a low pain day!

 

I feel defeated by my body.

Why does my body not work properly? How did I get so unlucky to have so many things wrong with it? Will I ever catch a break? Will I ever get any better?

These are questions at the minute I ask myself daily, I just feel defeated and worn down to the ground.I have an appointment booked with my GP on Friday and then on Monday I have an appointment with a immunologist. The 18 different extra symptoms I’ve been dealing with for over a year could be explained by a histamine intolerance/Mast Cell Activation Disorder, and they’ve been getting progressively worse. My neuro wants me to start some meds for it but I’d like it investigated further before starting any treatment which could mean any tests done for it would be inaccurate if I had already started the treatment. So hence the immunologist appointment on Monday. Hopefully it will go okay and might make me feel a little better about the whole thing but at the minute I’m still feeling distraught that there is probably yet another thing wrong with me.

My stimulator is being turned back on for Burst programming on the 24th of March, I’m not feeling too optimistic that it will be any better than the standard Tonic programming of before, but I’ll just have to see.

In other news in 23 days time it’s my birthday and I will be 23 years old, it doesn’t fill me with joy, instead it fills me with sadness. I’m going to be another year older yet I’m still no better, if not worse than I was when I was 15 and this all started. I’ll be another year older yet I have not achieved anything I’ve wanted to, I’ll probably never be able to hold down a job, I’ll probably never move out of my parents, probably never have a relationship or a family. All because I’m sick, all because of my stupid never ending headache which I loathe so much. So I ask you, what is the point? I just feel so unbelievably defeated by everything at the minute that I don’t know what to do anymore.