Ahhhh

It is 1.49am and tomorrow/today I am meeting my new neurosurgeon. I will be travelling to London early in the morning to meet with him. I am very nervous but also excited and positive.
I am sorry updates have been bad, I have not had much to say!
Will write again tomorrow or Wednesday

Ink in my skin

Getting a new Tattoo the week after next! Excited as I am going with my brother so he can get his first. He will probs faint. I am getting lyrics (I know, I need to stop covering my body in quotes) This song means a heck of a lot to me. It helped me get through chiari, meningitis and 2 months in hospital. I listened to this on repeat anytime I wanted to sleep or switch off from the busy hospital. This is my marking to chiari, not the awareness ribbon, but rather a quote that sums up not only my journey but many many other people who are fighting this terrible, incurable condition!
"you gotta swim for the music that saves you when you're not so sure you'll survive" This song did just this for me. When I was in pain and crying, when I was so tired from medication being given every 2 hours round the clock, when I was in my dark place, when I was in a dexamethasone rage. This song was the soundtrack to all of that!

Getting away

So, I am taking a nice break to Dublin. I leave tomorrow and am going for 5 nights. I am looking forward to it. It will be nice to have some breathing space!

In other news, I have been doing physio now for a little while. My physio is trying to get my range of motion in my neck sorted, and wants me to be seen about dizziness and balance. She also wants me to try hydrotherapy.
I have my neurosurgeon appointment on 13th December. SCARED!!

Update!

I became acutely aware today that I have been neglecting my blog recently. I have to admit this is not the only thing I have been neglecting. I have been copping out on life recently. I have been feeling pretty down in the dumps that my surgery hasn't worked, but also, maybe stupidly, I feel embarrassed. I was so sure I would be fine after surgery, totally sure I would be "ME" again! This, alas, has not even been close to the case. I am in worse pain and cannot even be bothered to get out of my bed most days, days when I do manage to get out of bed that is such an effort that also getting dressed is almost out of the question unless totally required. People are honestly getting sick of me, sick of me being sick, sick of me not living my life in pace with them and sick of me being in pain and moaning!

So, rant over, I am seeing a new private neurosurgeon on 13th December so hoping he will help me out!!!!!

Post op MRI scan!

OFFICIAL COMPLAINT!

So, I have been dicked around by the hospital one too many times. They cancelled my surgery!!! And to make matters worse, they then just sent me home. The neurologist felt I didn't need the surgery, even though my pressure was 35, this is not too high. He started me on topirimate. This didn't work, as I suffered an allergic reaction when I tried to take 50mg. I developed a rash all over my body. So back to square one. I have requested that I no longer be treated at my local hospital. They seem to not really care, the emotions they put me through, constantly changing their mind. I just feel that I would be better off being treated at another hospital. I also put a complaint in about the way I was treated, not by the nurses but by the doctors. I am going to see a NS privately up in London to ask his advice and see what he thinks. Just got to wait for the hospital to send me a copy of my medical records and MRI/CT scans on disk and then I can book an appointment. When I was in touch with his secretary last week she said I could be seen as early as 27th October, I will not make that appointment due to the wait for my medical records but it does show how quickly I could be seen, amazing what chucking a bit of cash can do!!
I seem to be complaining a lot recently. I also put a complaint in about a locum GP I saw. I saw her back on August 5th, 6 days after my surgery. I attended the appointment suffering from a headache, vomiting, photophobia, sore neck and was feeling feverish. She told me to go home and rest. She said, What did I expect, I had just had brain surgery?! I explained that I had been feeling not too bad, but had suddenly gone downhill. She told me I could go to A&E, but it would be a waste of time and I would be waiting for 6 hours. She did not take any observations ect. I ignored her. Upon arriving at A&E I was in majors within 10mins, and in an MRI scanner within 2 hours....so much for waiting 6 hours. I was then in hospital for a month with meningitis. Today I received an email stating that the doctor had written a response to my complaint and I should receive it later this week!! Kinda nervous about what she will say.
SO yeah, had a crap week, which is why I have not updated. I will update again when I get a letter back.

Surgery tomorrow!

Having surgery tomorrow to fit a shunt. My headache has got increasingly worse since the lumbar puncture so they are fitting a shunt in the morning. Not sure of the time or anything, surgeon will see me later. Gunna be a breeze =D

I am not full of infection.

Today I was told that my CSF shows no signs of meningitis. This is the first time in 2 months that I have had no obvious signs of infection. They did say that there is still some inflammation, and this means that I am still on a high dose of steroids, but should start weaning off them in the near future. This is such good news, as the dexamethasone is known in this hospital as "the meanies and the munchies" They have turned me into a greedy strop head.

Other news. Head was amazing till 1am last night. Then it got worse. By 10am it was horrid and by about 7pm I was vomiting. Pressure is high =[