Posts filed under 'sci'
My lumbar last night went really well, I had the same doctor as last time and this time she got it in first time. I also asked for another bag of IV fluids afterwards to prevent another spinal headache, and I’ve been okay today, only a little headache, so that’s good. So, only a week to go, I have an IV tomorrow, and my last lumbar on friday, and then I’m flying out on sunday!
So since it’s getting near the end now, I thought I’d write a list of the highlights of our time here:
1. mum accidentally flushing her sock down the toilet when we first got here (she was hand washing and didn’t realise she’d left a sock in the bucket when she emptied it into the toilet)
2. The injured door
3. Jenna (a 14 yr old SOD patient here) describing other patient’s bad moods as having “Beaver Brain”, and refering to platypi as “evil poisonous beaver monsters from the middle of Australia”.
4. The Valium
5. The snow (view from our window)
6. Teaching Baron (2 yr old ONH patient) where his clavicles and kidneys are (and also my boobs. thanks mum.)
7. Nanna’s x-mas bonbons containing frilly knickers (which mum and I unwittingly opened infront of everyone. thanks for that nan!)
8. Chinese Santas with their beards not on properly
9. stealing other people’s babies
10. All the lovely people we’ve met (awwwwwww)
January 12th, 2010
(a sign on the broken (or “injured”) door of our favorite coffee shop… gotta love Chinglish… have been sorely tempted to steal this sign and wear it to physio…)
So the last few days have been a bit rough for me, I had a difficult lumbar on wed night, the doctors had to try quite a few times to get the right spot, and believe me, we all breathed a sigh of relief when they finally got it. Poor little London was before me (cute little 2 yr old SOD patient) and they couldn’t get her to lie still at all so they weren’t even able to attempt her lumbar. Must’ve been a bad night for all of us. I felt bad for the doctors though, it must be so difficult sometimes when things just don’t go right for no reason. They were all really nice and concerned though and came and talked to me afterwards to make sure I was alright. Unfortunately yesterday and today I’ve had a pretty bad spinal headache, but the doctors and nurses are all so nice and efficient, they had me on IV fluids today to try and relieve the pressure (or lack of?). So I’ve been pretty useless. But it definitely hasn’t been all bad! So I thought I’d post some photos from our stay so far…
Playing “where’s Baron?” with my adopted son (Baron, ONH patient, and oh so freaking cute)
mum with her adopted baby Mallory (2 yrs old CP patient, and also freaking cute)
me with Baron and his “real parents” (just kidding guys, you’re awesome) Jenna and Peter from Townsville, Australia.
mum and I infront of the biggest bloody carousel I’ve ever seen, in the shopping mall across the road from the hospital (yes the shopping centre actually has a massive pirate themed amusement park in the middle/ basement level. With a roller coaster. And a river. With boats. It’s ridiculous.)
our lovely Brazilian friends, Fabricia and Fabiolla, who left on tuesday 
So that’s about it for now. Hopefully my brain will stop exploding soon!
January 8th, 2010
Hi all,
Life has been busy on the ward, so I’ve been lazy about updating my blog! I had my first sign of improvement for this round of stemcells the other day: the tone in my lower legs and ankles is virtually gone. Every night for I don’t know how long I’ve had to stretch my feet and ankles out to maintain their normal range of movement, and so the night after my last stemcell injection mum was doing this for me and was surprised by how loose my ankles felt. At first we just thought it was the effects of the valuim still in my system, but it’s been a week and my ankles are still free of tone! This is excellent news because now hopefully the bit of movement I got back in my left ankle from last time can get stronger because it doesn’t have to fight against the tone anymore.
Unfortunately I’ve also managed to get a sore throat somehow over the last 24 hours, which I’m a bit pissed off about, but hopefully it doesn’t turn into anything more than that. The doctors here are really good though, I told Dr. Wang this morning so he had a look and has already started me on anti-biotics, talk about efficient! You have to be virtually dead before they’ll even get a doctor to look at you back home, and that’s in an acute care ward. And then it’ll still take 3 days for them to give you anything for it. So anyway, hopefully we’ve nipped that in the bud, as I’ve been told that it can be detrimental to the treatment if you get sick, because the stemcells are attracted to areas lacking oxygen, which means anywhere that is damaged. Anyway not much else to report!
January 6th, 2010
I just realised today that yesterday was the 4 year anniversary of my injury. I had totally forgotten, which is probably a good thing. It’s always a bit depressing to realise that you’ve spent another year being disabled. But at the same time, being here with all these disabled children makes me thankful that I did have 18 years of normality.
I’m having my 5th stemcell injection tonight, so no new years eve party for me. Although I suppose I can have my own little stemcell and valium party tonight after my lumbar puncture… maybe they’ll be lucky new year stemcells?
Still nothing more to report,
Claire.
December 31st, 2009
Hi all,
Christmas in the ward was really good, although mum and I did miss being with family. A group of us went out to the Holiday Inn for Christmas Eve dinner and a few of us stayed overnight (I had a bath and it was amazing!). We saw a few Chinese Santa’s around the place, and I got a photo with the one at the Holiday Inn:
and this is the group photo taken on xmas at the ward. I was supposed to have stemcells thats night too but the flight was cancelled due to weather, so I’m having them tonight instead.
It didn’t snow christmas day, but it did snow boxing day and today! its so pretty!
Anyway, no other news for now.
December 30th, 2009
I have just had my 2nd LP last night, which brings me up to 3 treatments already! I can’t believe that by the end of the week I will be half way through! My first LP was fine, but last night they tried a different spot in my spine a bit higher up than usual, which took a bit of stabbing around but eventually they got it. Pretty sore and a bit dizzy today, so I skipped physio, feeling much better now though. Oh and as much as I love the valium, it freaking hurts!! the vein in my wrist is killing me today, they’ve used that hand for the last 3 IVs though, so hopefully next time they’ll use my other hand. Next time, by the way, is on friday, which is x-mas day. yaaaaay.
Today I decided to draw on my legs where I have sensation and where I don’t, so that I can do it again in a few weeks/ months and have something to compare, also it was just interesting to see how patchy my sensation is, so I’ve included the photos here (the blue is where I don’t have normal sensation).
The front of my legs:
my left leg:
My right leg:
the back of my legs:
I have no sensation on my glutes either, but I didn’t really feel like displaying my ass on the net. So thats it. Hopefully I’ll see some changes, sensation was the first thing to start improving last time, but it was very hard to tell because it is so patchy.
December 22nd, 2009
So today I had a small meltdown in the physio room. Jason is my physiotherapist and he doesn’t speak much english, and he’s been trying to get me to do these steps in the physio room without holding onto anything. And I try! I have been faced with these steps every physio session so far, but I just CAN’T do them without holding on to anything. Andy tried to get me to do them last time aswell, with the same result. And I get that I have to try, so I do, but seriously. I can’t do it. Or at least I can’t do it without flinging myself over the room and breaking my head. So I think I must have been slightly scarred from this exercise last time, and have (embarrassingly) been on the verge of tears each time I try and do it this time. So today I just couldn’t do it, Jason was like “come on, come on” and I was like “I can’t!” and then I cried and felt really stupid and crap because there’s all these little kids who are blind, or have severe cerebral palsy, so what the hell am I upset about? Oh so emooooooooo.
And now I’m hungry. oh when will it end!?!?!
PS first lumbar on wed :S
PPS also first IV valium for the lumbar on wed, mmmmmmmmmm… valiuuuuummmmm….. (there have to be some perks)
December 14th, 2009
So I had my first treatment for this round on friday, and all went well. But I thought it would be worth stating my condition before and after my previous treatment for anyone who doesn’t know:
I had my spinal injury at the end of 2005 when I was 18, suffering a burst compression fracture of L1. I spent 6 months in hospital and rehab, emerging in a wheelchair. I then spent the next 3 years learning to walk with what muscles I had left using ankle splints and two walking sticks. I also had severe tone which led to ankle contractures at about the 18 month point, so I had surgery to lengthen my achilles tendons, but still had lots of lower limb spasticity.
prior to my first stemcell treatment: I was three years post-injury. My injury was assesed as L1 ASIA A incomplete. My motor function was classed L2 and sensory level at L3.
I had no bladder or bowel function/ control. I had no movement below the knees, and significant weakness and paralysis in glutes, hamstrings, hips and abductor muscles. I had normal strength and sensation in knees, quads, adductors, abdominal and back muscles.
I had no sensation besides pressure below the knees and at the backs of my legs and my buttocks.
I had limited sweat function in lower limbs.
I could walk with the aid of two walking sticks and two ankle-foot orthosis (AFOs).
I did physiotherapy three times per week.
Improvements after my first stemcell treatment: While still in hospital I regained some movement in my left ankle and toes (plantar and dorsi-flexion) and regained about 4cm normal sensation below my left knee, and about 2.5cm of normal sensation below the knee on my right.
On returning home I have noticed a significant decrease in lower limb spasticity and have been able to stop taking baclofen
I have also regained normal sweat function in lower limbs (welcome back sweaty socks!)
December 14th, 2009
Hi all, I’ve arrived at Qingdao, so decided I should probably start the blog! Just to clarify, this is my second stemcell treatment here in Qingdao. I had 8 stemcell treatments at the beginning of this year (jan and feb), and had some improvements, so decided to come back for more. I am again having 8 injections. Last time I had 6 cord blood stemcell injections, and 2 harvested from my own bone marrow. This time they have recommended that I have a different type of stemcell harvested from the cord blood, called mesenchymal stem cells, which apparently have a better effect on spinal cord injury patients.
So it begins.
We got here yesterday afternoon, so today have started physiotherapy. My first treatment will be on friday. Mum and I have been pretty spaced out , but we’ll get into the swing of it (hopefully) soon. It is much much busier here in the ward this time, lots of families with children having treatment for different conditions. They all seem pretty nice so far. Mum is asleep at the moment after just telling me off for lying down and looking sleepy, jeez thanks mum! I’ve just done my morning physio session and electric wave therapy and had lunch, so I will have another physio session soon, then acupuncture, and then I think Amanda (one of the translators) is taking us food shopping across the road. We seriously need some tea. And food for breakfast. Allrighty then 
December 9th, 2009
