This is my
Neurofibromatosis (NF1) and Scoliosis.
Please don't feel sorry
for me while reading my story, as I'm really
happy and no crying, because I'm not sad, be
happy and smile when you read about all the
things that I get up to.
4th January 2008:
Mum received a call from my Nf doctor on the evening of the
28th December 2007 to say that she had received a call from the
doctor who did the P.E.T scan and that he felt it would be a good
idea if I had the P.E.T scan done again as he thinks it was a cold
day on the day that I had the scan and may not of given a correct
reading and he is going to use my last P.E.T scan as a base line. My
Nf doctor wants to see me in February to have a chat over how things
are going and to explain the P.E.T scan to me.
22nd January 2008:
I saw my pediatric orthopaedic consultant
today who looked at both my knees, he said that both knee caps were
loose but one more than the other and that there was a lot of
swelling to the back of the knees, he was unsure why and decided it
would be better to do an MRI scan of both knees. The hospital phoned
yesterday and I have got to go on Friday for the scan.
I also seen my pain control doctor this week at Sheffield Children's
Hospital along with other people involved in my care, the doctor
spoke about me using flotron boots, which will help to reduce the
swelling in my legs, I have worn them before when I was in hospital
after my spinal surgery but I think I am going to try support
stockings first. We also spoke about me being transferred over to
the adults services at my local hospital, which will happen sometime
It's only weeks off my charity Ball and I have been busy trying to
get raffle and auction items, everything is going to plan so it
should be a great night.
9th February 2008:
I was at the hospital on
Wednesday for my physio' in the hydro' pool. While I was
there I decided to bob and see Pam (the play leader, who
is coming to my Ball) but on the way back I was in so
much pain that I could not even stand up and was on the
floor in pain, a nurse got me a wheelchair, my physio'
had a look at me and decided it would be best to put me
on two crutches to even me out a bit more. I felt a
little better after doing my hydro' physio'. Then on
Friday I went for the MRI scan on my knees, the scan
only took about 15 min's so it was not too bad.
7th March 2008:
My back and legs have been really painful and I had to wear my back brace for college to try and help with the pain.
I am seeing Dr. Henry on the 1st April when he gets back from holiday so I should get the results of my knee scan then.
My ankle went on me when I was in Blackpool last week, the pain in my ankle was really bad, the foot was black and blue from the bruising, walking on it was a no, no, the swelling was still bad when I went to physio' on Wednesday, so I mentioned to my physio', she took one look at it and sent me off to A/E to have it x-rayed, pleased to say no brakes but badly sprained. It's now Friday and the swelling and bruising still not gone down around the ankle so no driving lesson for me this weekend.
I am going into hospital on the 9th April for an operation on my foot, I have got a tumour that is deep into the foot and is giving me some pain when I try to put my shoes on, the doctor said it would be best if they tried to remove it.
There is a small story about me in the Chat Magazine this week, which tells you a little about me and about my fund raising. Talking of fund raising I have got some great news to tell you all next week. But, "sorry", you will have to call back next week to read the report.
14th March 2008:
Did you read my great
news? if not take a look on my
fund raising link.
I am seeing my Nf doctor on Tuesday so I may
have some more news for you after this date
as to what is happening about the PET scan.
my NF doctor (Dr. Sue Huson) last week, everything went
ok really Dr. Huson explained that I will be having my
PET scan in May as they want to make sure the tumours on
my spine and in my pelvis are not growing too fast, if
it turns out they are growing I will have to consider
having them removed.
Due to the problems that I am having it was decided that
I should be seen every six months but before if I have
any new problems.
The pain in my back has been really bad recently but I
am due to see Mr. N Oxborrow at the beginning of April,
well, the day before my Birthday, it was suggested that
I should wear the back brace again to help support my
back a bit more. But I will see what
1st April 2008:
I was back at Pendlebury
Children's Hospital this morning to see Mr.
Henry for the results of the scan I had on my
knees in February, Mr. Henry gave me the report
from the scan, which was:
Both knees, thighs and
proximal calf have been included in the scan.
There are innumerable neurofibromata of high
signal on fluid sensitive sequences distributed
alongside the neurovascular bundle of both
thighs extending behind the knees and into the
calves. Scattered smaller lesions also seen
within the muscles and subcutaneous tissues. The
larger lesions measure up to 3 cm with a
diameter of around 1.5 cm. There is an
interamuscular neurofibroma with a diameter of
1.3 cm in the medial head of the right
gastrocnemius within the popliteal fossa.
Adjoining cluster of smaller neurofibromata is
also seen. Multiple neurofibromata also fill up
the left popliteal fossa. There is no popliteal
cyst seen communicating with the knee joint. No
significant effusion seen within the knee joint.
No marrow signal changes are seen either. The
internal knee structures including menisci
cruciate and collasteral ligaments are grossly
After reading the report and looking at my
knees again Mr. Henry told me he would not be
able to remove any of the tumours as I may end
up worse off. But if the tumours continue to
grow the situation will be looked at again and
it would be a plastic surgeon that would have to
remove the tumours not him.
The report will be
sent to Dr. Sue Huson my NF doctor for to
look at and decide if anything is needed to
I had an appointment to see Mr. Oxborrow
last Friday and after having an X- Ray on my
spine Mr. Oxborrow said the spine has now
fused together, which is a good thing. I
have been getting a lot of pain at the top
and bottom of my spine, which I mentioned to
Mr. Oxborrow. The pain does
wake me up in the night and tends to get
worse throughout the day. Mr. Oxborrow wants
me to move over to adult services now that I
am 18 ears old and to do more physio' to see
if this will help as he thinks it could be
muscular pain that I am getting. he wants to
see me again in six weeks to see if things
have got any better.
he also mentioned
that one of the screws may of split at the
top of the spine and will look into this in
I don't mind moving over to
adults as long as I stay with Mr. Oxborrow,
I don't want to be seeing anyone else.
going into hospital for surgery
on my foot tomorrow, I should
only be in a couple of days thou
depending how surgery goes.
Just to let you all know I am
home from hospital after having two tumours removed, one
from my foot and one from my chin.
I had to go on the
drip for a few hours as I was being sick, but this is
only to be expected after surgery. Everything seems to
have gone ok with the surgery and I am not in too much
pain now. I go back to dressing clinic next week to have
the stitches removed and the dressing changed.
The doctor said I cannot shower for two weeks (I feel
sorry for anyone sitting next to me over the next two
I have got seven hospital visits over the next two weeks
so I will up-date when I have attended them all.
25th April 2008:
Everything seems to have gone
as well as expected with my recent hospital
Mr. John Thorn said he cannot do anything to help me
at the moment, but if the PET scan shows that the
tumours on the spine or anywhere else in the body
have started to grow he may have to look at things
again and surgery maybe needed, in the meantime I
have been discharged from the clinic.
Even thou I went a long to my physio' appointment
last week I was in too much pain to do it all so my
physio' just did a small amount with me. I just feel
so tired recently, not sure why.
My weight has stayed steady so I don't have to take
the Skandishakes at the moment, which was great
I had stitches removed from my chin, I think the
nurse said I had four stitches and the scar is
looking good, I did not have any stitches in my foot
that needed to come out so that was a blessing and
everything looks to be healing well.
I am not having my PET scan until June now as the
doctor wants it to be six months gap so he can
compare the two scans for any change in the tumour
Still having to go to Physio' every week, but I
don't mind if it helps build me up.
9th May 2008:
My appointment with Mrs.
Brains went ok and the tumours that were removed six
weeks ago were Nf tumours, the doctor also spoke about
the scan I had done on my tummy, she said that the
results of the scan showed that I had lots of small Nf
tumours in the tummy, I decided not to have anything
done to them unless they start giving me too much pain.
Not having the best of days as when I got home I slipped
on the stairs and fell and hurt my back, I was in so
much pain that I had to go to A/E, my back was x-rayed
and everything looked ok apart from the top of my spine
looking a little bent. The doctor I saw said that I
should let my spinal doctor know what's happened so he
can look at the x-rays too as one of the rods were bent,
but I think it was like that before my fall anyway. I am
due to see my spinal doctor in the next few weeks so I
will mention it to him them.
21st May 2008:
I went to see Dr. Lieberman
(chronic pain specialist) this morning, I first went to
see Dr. Lieberman in December 2003, five years ago, if
you look back in my diary I mentioned then what a cool
guy Dr. Lieberman was and how he made me feel very
relaxed when talking to him.
Dr. Lieberman only deals with adults, which is why I was
transferred over to Sheffield Children's Hospital for my
pain control, but now I am 18 it's better for me to be
seen by an adult pain specialist.
Dr. Lieberman is still a
cool guy, but he no longer wears his cool ties, I was
looking forward to seeing him in his jazzy ties again,
but never mind as I said he is still a cool guy. We
spoke about the medication that I am already taking for
my pain, Dr. Lieberman did say that if the pain got
really bad that I could take more Gabipentin and he also
mentioned me using morphine patches to help with the
pain but I don't really want to start using morphine, I
am loopy enough without the help of morphine.
I was also given this new treatment (sorry I can’t
remember what it was called) where I had to lie on this
bed and a sticky pad with wire coming from it was stuck
to my hip the other end of the wire was plugged into a
box, then the doctor used this instrument with a wire
coming from it that was also plugged in to this box (it
looked a bit like a pen with a silver nib), the box was
turned on and set a level that I could manage and the
pen instrument was placed over the area of my main pain
for about ten minutes. I have got to have this treatment
every week for six weeks. The doctor told me it was a
very new instrument and that only three hospitals in the
UK are using it at the moment. I have been trying to
think what it is called and all I can remember it was
something like “External neuromal ultra”; I will try and
find out when I next go.
I have got to go back and see Dr. Lieberman in about
three months to see how things are after this treatment
that I am now trying.
I fell off the stage at college this week, which caused
some damage to my knee, I was not wearing my foot or
knee braces as they need replacing and my knee gave way
on me. My Physio’ contacted the orthotic services
to tell them what had happened and that it was urgent
that I got seen asp as I have got nothing to support my
knees and ankles at the moment, but the earliest I can
be seen is on the 11th June unless they get a
I am having my PET scan on the 3rd June at Christies
Hospital, having had one of these before I know what to
6th June 2008:
The PET scan went ok apart from
me having problems with the injection again, the nurse
could not find a vein and when she thought she had found
one after going in with the needle my vein collapsed, in
the end I had to have the injection in my foot. I will
not get the results until my doctor returns from her
holiday in two weeks.
Busy month with hospital this month, I am also going
back to see MR. Oxborrow, first time of seeing him at
the adult hospital. I am going to tell him how painful
my back has been as the pain's been really bad at the
top of my spine and at the bottom.
14th June 2008:
I have had some really nice surprises this week, take a
look at my about me link to find out what my great news
Hospital is still the same, the new treatment that I am
having did not really help with the pain this week as my
back has been really bad, but I see Mr. Oxborrow next
week so will mention it to him.
17th June 2008:
This was my first visit to see Mr. Neil Oxborrow at
Hope Hospital, it felt strange not seeing him at the
Mr. N Oxborrow was not expecting to see me as it was
not really his clinic, he was just filling in for
Mr. Oxborrow was still unsure if the rod had moved
at the top of my spine but was not too worried about
it, he is going to look at my old x-rays and compare
them to see if the rod has moved too much. I have
got to continue with my physio’ and try and do more
physio’ at home too.
go back and see Mr. Oxborrow in nine months to make
sure everything is ok, but he is going to contact me
in the next four to six weeks after he’s had time to
look over both x-rays.
I could not leave without leaving a gift for his dog
even if he did forget to show me an up to date
picture of his dog and talking about pictures I’m
just as bad as mum brought her camera with her as I
wanted to get a picture of Mr. Oxborrow for my book
and web site, I will just have to write and ask him
to send me one now as he is also writing a document
for my book.
pictures of my
Vicky, My tissue viability Nurse:
Vicky came to see me yesterday so she could measure both my legs for some compression hosiery stockings as my ankles keep swelling up.
It was important for Vicky to assess each of my limbs for suitability for compression treatment before application.
Mum went and picked them up from the chemist this
afternoon and I found it really difficult to get them
on. I am at the hospital for my physio’ tomorrow so I
will mention this to my physio’ as he may have some tips
on how to get them on more easily.
18TH June 2008:
Today was one of my busy
hospital visits as I was seeing Cathy Head, my
dietician, I have put weight on, and mum said it's
all the chocolate that I have been eating. I then
went on to do my dry land physio' with Jane before
going on to do some physio' in the Hydro' pool with
The swelling to the back of
my knee is still there and is giving me some pain,
my physio’s thinks it’s best if they write back to
my orthopaedic doctor and let him know about this
swelling as I have had a few falls since my last
scan and may have done some new damage to my knee.
The knee caps are also getting even more loose and
Cathy (my dietician) checks
Gary helping me with my physio’
in the Hydro’ pool.
19th June 2008:
My weekly pain clinic visit, the treatment that I am
trying for my pain is called External
Neuromodulation and is used for the relief of
This treatment was developed at the renowned INPUT
Pain Unit at St Thomas’ Hospital, London. It targets
the nerves responsible for your pain. It changes the
behaviour of the nerves so that your pain is
reduced. It is normally used for neuropathic or
nerve generated pains. These tend to be unpleasant
and described by such terms as “burning”,
“prickling” and “tingling”.
What happens during treatment?
A sticky electrode and a metal probe was placed on my skin and a very small electrical current directed at the nerves responsible for my pain. Asmall amount of gel was used on the tip of the probe.
The treatment last about five minutes at each area of the pain, after my treatment my pain was reduced but this was only temporary. Some patients have got weeks or months of benifit from this treatment and when their pain did return it was with less intensity.
I am having treatment once a week for the next six weeks when things will be reviewed.
Having treatment on my
Having treatment on
4th July 2008:
The new pain treatment
seems to have helped the pain in my shoulder a little
but not the pain in the back. I have got one more
treatment to have when things will be reviewed again.
Physio' went ok
but I still have this swelling to the back of my knee,
my physio' is not sure what it is and is writing to the
orthopaedic doctor to ask him to have a look at it. It
may be a sack of fluid or a new tumour, she is not sure.
15th July 2008:
This is a busy week for hospital
visits as I am there almost everyday.
I have got a bad ear infection again, so my G.P gave me
a letter to take to the hospital so that I could be seen
in the E.N.T Open Access Clinic. I saw Dr. Richard
McBride, he said I needed microsuction on both ears
again due to the build up of puss and gave me some
stronger ear-drops to use for a week. I have got to go
back to the hospital next week. Dr. Richards McBrides
also wrote me a letter as I keep getting recurrent ear
infection and instead of my GP writing the letter for me
to bring up to the hospital I can now use this letter
and it will save me time having to go and see my GP
16th July 2008:
I received a letter from Dr. Huson to tell me that the PET scan showed that the internal tumours are not growong to fast, which was good news.
I went for physio’ in the Hydro’ pool this afternoon,
Gary, my physio’ works me hard.
17th July 2008:
Today was my last lot of treatment for the
pain in back and shoulder. I have been getting a lot of
pain at the bottom of my back, to the top of my back
just above the scar in my shoulder and the treatment is
not really helping now. I have got to go back to see Dr.
Lieberman in October.
I also received a call from Julie (Mr. N. Oxborrow’s
secretary) to say that Mr. Oxborrow wants' me to have a
spinal x-ray done and that I should come into x-ray the
next day for it. I am at the Hope hospital anyway having
my new foot splints looked at.
18th July 2008:
I went for the x-ray
on my spine this morning that Mr. N Oxborrow wanted me
to have, I also had to have my foot splint looked at as
they were not fitting correctly and giving me blister's.
They are going to send them away to have some more
straps put on at the bottom so my feet will be pushed
back into the brace. They should be ready in about ten
days for me to pick up.
I am still trying to raise a further £60.000,00 to send
30 very poorly children on five day holiday with their
parents to Centre Parc's if you think you can help me
raise this money please make a donation on my just
giving link it is very safe to make a donation in this
way, or maybe you would like to buy some pin badges for
your friends and family every little helps, they only
cost £1.00, if you go to the new link on my front page
you can view what the pin badges look like, you can
contact me by e-mail for more information.
16th August 2008:
I have now got my new splints, they are a bit bulky around the top of my shoes with the second strap on but my foot is not rubbing as much.
I have had a lot of pain in my back this last few weeks and yesterday it was so bad I had to put my back brace on to try and help with the pain. I have not had any news from Mr. Oxborrow over the x-ray he wanted me to have so I presume that everything was ok with the rods. I have also been getting very breathless so I may have to go back and see my GP.
other news really I am still attending hospital weekly,
which does help me with the pain. I find it easer to move in
the hydro’ pool than I do when I do dry land physio’.
I have also got an appointment
with my GP on Monday as I have been getting very breathless
and a lot of pain in my back.
I see my NF doctor in September so I will give you an update
after this appointment.
Well, I am back from my holidays in Florida, which I will tell you more about on my About me Link. The day after I got back from Florida I had to go and see my NF doctor (Dr. S Huson) for my six monthly check-up. Dr. Huson gave me a good all over medical check. I spoke about how my breathing had been getting worse and about the pain in my back and in my knees, Unfortunately Dr. Huson said my foot drop has worsened considerably in the past six months, she is going to contact my GP about all my other problems. But has also decided to send me to see a doctor in London and I may have to see a doctor in the USA due to how things are going.
Dr. Huson said my PET scan was looking good. But that it did show that I have many, many tumours on my internal nerves and that she as never seen anyone like me and that I was a one off (mum always said God broke the mould when he made me lol.. In the meantime I have got to continue with my physio' and do some extra physio' on my feet. I have also been getting very breathless and started being sick again so I have been told to make an appointment with my GP.
2nd October 2008:
Went to see my GP last week and
she said that I have an infection and put me on
antibiotics for two weeks my GP also took some blood
test, can you believe it, I did not have any magic cream
on my arm before I had the needle. Don't you think I
deserve a cheer for being brave? My mum came in with me
thou just in case I wanted to squeeze her hand lol....
I went back to my GP yesterday and I still have the
infection and have now been put on some other medicine
and have now got to go back in two weeks and if things
are still the same then I have got to go for a chest
Next week I have got to see Miss Brains my plastic
surgeon over some new tumours that are giving some pain
and may need to be removed.
10th October 2008:
I saw my plastic surgeon
yesterday to talk about the possibility of having three tumours
removed that are giving me a great deal of pain due to where they
are situated, after the doctor had looked at them he felt it was
possible to have them removed without it causing any damage to the
nerve that are attached to. This operation will be done before
Still no news on when I am to see the doctor in London
yet. but my NF doctor is away at the moment so I think I will know
more when she gets back in her office in two weeks time.
I am busy trying to decide which University to attend at
the moment and what I actually want to study, I am looking at going
into radio presenting as I use to have my own radio show when I did
voluntary work at Wythenshawe FM and really enjoyed what I did at
the time. Plus I will be sat on my bum and it will not interfere
with my disability to much.
15th October 2008:
I had to see my GP this morning and as I have a water infection
(can't stop going to the loo) so I am back on antibiotics. My GP
also listened to my chest as I am still getting very breathless and
after listening to my chest my GP wants me to have an echocardiogram
(or "echo") done. An echocardiogram is a totally safe and painless
ultrasound examination and is a quick and easy way to look at the
valves and chambers of the heart, as well as the blood flow. It uses
high frequency sound waves to form a picture of the valves and
chambers of your heart.
My GP is also going to speak with the doctor I see over the tumour
on the lung to see if I should have the lung function test done
It was then on to the hospital for blood test (more needles and
three attempts before they could get any blood ) and on to physio’
for my hydro’ pool therapy, poor Jane (my physio’) just could not
get on the frog (float) and kept falling off, I’m cruel when I am in
the pool and get everyone else wet too. Physio’ went well, I was
just very tired after.
I was called in to see my
GP this morning after having had my blood results back from the full
blood count that she requested. As we thought the test confirmed
that I am enemic so my doctor put me on Ferrous Sulphate 200mg
tablets, Which I have to take twice a day for the next four weeks
and then have a full blood count done again before going back to see
my GP and she will tell me if I have responded to the treatment. I
really don't like the idea of all these needles.
At least I now know why I have been feeling so tired and this could
also explain why I have been getting shortness of breath and having
an irregular heart beat, which can be some of the common symptoms of
Mum phoned college this morning to explain why I had not been in
today and to let them know that I will be in tomorrow but to take
into account that I am more tired then usual and that they may find
I am less active and that the ability for me to focus is some what
reduced at the moment.
I have not got the date for
my echo test yet but my GP did mention it this morning when I went
to see her, so I think she was going to give the department a call.
I have now received the date for my
Echocardiogram (echo scan), which will take
place at the Cardiac Diagnostic Centre on the 13th November 2008.
This is a simple test, which will not cause me any discomfort and I
don't have to have any needles, which is a great relief.
Still getting a lot of pain in my back, tummy and legs and I think the tumour in my groin has grown, which I will mention to my doctor when I see her in a few weeks. I have not got my appointment to see the doctor in London yet so I cannot give you anymore news on that. But will let you all know as soon as I have some news.
My echo scan went ok and I was told the results will be sent to my GP but looking at the scan everything looked ok, which was good news. I see my doctor next week and she will tell me more then.
On Wednesday I went for my normal hydrotherapy. I haven't had my physio' in the pool for three weeks as I had to go to Leeds. It felt good to get back in the pool this week as I can do a lot more in the water. I spent half an hour in the pool and did all my exercises, which was a bit of walking in the water, my physio' pulling on my feet, trying to balance on this frog and playing ball with my physio'. I felt a bit wobbly to begin with as I have not been feeling so well and still getting very tired at the moment. It did not help matters by me falling at college. My next session in the hydro' is in a fortnight. My back did ache a lot afterwards this week, and my knees were sore too for a while after, next week I do a dry land physio', which is much harder for me to do and lot more painful.
Heart scan result:
see my doctor until
Monday 8th December when I will get the results of my
heart scan and recent blood test. But I’m sure everything was ok
with the scan.
I had to have some more blood test, which made me scream when the
needle went in, well, it did take a few attempts again before they
managed to get any blood, I just don't like parting with it.
10th December 2008:
I went to see my doctor this morning and unfortunately I have
an infection again so back on antibiotics for two weeks, my
blood results were
ok this time, which was some good news. My doctor looked at
the swelling to the back of my knee and decided due to how
bad the swelling is she is contacting one the hospital
doctors to have a look at it.
Later in the afternoon I was at the
hospital for my hydro’ physio, which I still have to have
every two weeks and then my dry land physio’ every other
week, I always feel tired after physio’.
18th December 2008:
I was at hospital for physio' this afternoon, I am having a lot of problems with the tumours behind my knee and cannot wear my knee braces, my physio' said that I really need to wear them all the time and asked mum to contact the guy who makes my braces to see if he can review the situation.
22nd December 2008:
Received a letter over the review on
my knee brace’s, I don’t go until 2nd February
2009. But I am going in hospital on the 20th
January 2009 for an operation to remove some of the tumours
that have been giving me some pain and that doctor said they
can remove safely, they did want me in on the 6th
January but I have got a lot of work on at college and
cannot afford to have time off.
If anyone reading this blog is going into hospital for treatment and they want a friend to talk to, maybe you are worried, not sure if you should go for it, just send me an email and I will get back to you. It helps to talk and remember I am here as a friend to you too.
I hope you all
have a great Christmas and New Year, I’m sure Santa will be
good to you all and remember if you have a spare penny or
two and would like to make a donation please click on my
link, which is a safe and secure way
to make a donation. I would also like to say a really big
thank you to everyone who has kindly made a donation to my
next £65,000 target to send 30/40 poorly but very brave
children on a five day holiday to Centre Parc’s with their
families. Some of these children will never of been able to
have an holiday like this so it’s really important that I
achieve this for them.
I am pleased to say that 100 poorly
children and a parent have just had a magical trip to
Lapland to see the real Santa with the last £65,000 that I
|6th January 2009:
The pain in my back has been really bad this past few weeks, mum was saying it could have something to do with me not having any hydro' therapy over Christmas so I will see how it goes after my next lot of physio' in the pool. The tumours at the back of my knee has also grown so this another thing that I have got to mention to my doctor, I did receive letter from the hospital telling they would contact me with a date to see the doctor over the tumours in my knees as soon as possible.
I have got to do a dry land physio' on Friday so my physio'
maybe able to offer me some advice on what I can do as I
still cannot wear my knee braces due to them rubbing on the
You have got to take a look at my
fun page link
as I have had some really exciting things happen to me and I
cannot thank the people involved for setting it all up
enough and I had the best day of my life. Have a read and
to find out what it was that set my heart beating so fast.
|13th January 2009:
I have got to attend the pre-operative assessment clinic tomorrow before going on for my physio' in the hydro' pool. This assessment is to make sure I am fit for my operation next week. I just hope I don't have to have any blood test done, the last blood test I had did not go down so well as the nurse had problems trying to find a vain to take the blood.
Things still the same with my back and I have been wearing my back brace to try and help with the pain, my physio', "Jane", wants me to see about having a new back brace made so that I can wear it when my back is really bad like it is at the moment.
I have got the date for seeing Mr. Henry (27th January) over the tumours growing on the back of my knees and not being able to wear my knee braces due to the braces rubbing on the tumours.
I have got something really nice to look forward to this weekend, take a look on fun page link to find out what it is.
14th January 2009:
My mum and I ended up spending most the afternoon at the hospital, the nurse who did my pre-operative assessment was really nice and we were chatting about Hollyoaks (she likes it too) and after doing all the different test that she needed to do, she decided that I should go for a chest x-ray and blood test. "Yes", I had to have a needle, I thought I was going to get away with it this time. But I am never that lucky. She also decided that it would be better if I came in hospital on Monday, the night before my operation, I asked if I could come after college and it was agreed that it would be ok to come in after tea.
My physio' in the Hydro' pool went ok, but my back is really painful tonight so I am going to put my back brace on to sleep in.
22nd January 2009:
I am now out of hospital after having five tumours from different parts of the body removed. These tumours were giving me significant pain and Mrs. Brains my surgeon said she could remove them safely. I have known Mrs. Brains for many years now and she is really good and always has the time to explain what she intends to do and what risk are involved with the surgery.
The tumours that I had removed gave me a great deal of pain each time I bumped against them, the pain was unbelievable at times.
Before going down for my operation I was told I would need a needle, which is no go with me unless they put some magic cream on the area first, one of the nurses said that it had not been prescribed for me and unless they could find a doctor to prescribe it I would have the needle without. My mum said that she would go down to the children's ward and get some for me, mum had not been gone above 5 minutes when the nurse came back with some magic cream so I texted mum to let her know that I had got some. But that was not the end of my injection's, I was given an injection to stop the sickness, injection's to stop my blood from clotting and "Yes" they had problems putting the injection's in and "Yes" I cried. The next day I told them I did not want the injection to stop my blood clotting as I was able to move about and that I would cope with the sickness by having tablets. I had to stay in hospital a few nights.
I have got to go back on Monday for a review of my dressings. Tuesday I have got to go to the Children's hospital to see Mr. Henry as the tumours at the back of my knees have grown and giving me some pain.
My gran was in the ward over the corridor to me and one of the nurses off grans ward brought my gran to see me after my operation, which cheered me up. My gran is still in hospital as she is not very good on her feet at the moment and the doctor wants her walking a little better with her frame before they can let her home.
Yesterday, I had my dressing
where I have had my tumours
removed, the scares look nice
and neat so should heal nicely.
I received a lovely bunch of
flowers over the weekend from my
very good friends, Keith, Pat
and Alex and I would just like
to say a big thank you as they
were really beautiful and really
cheered me up.
I am at the hospital in an hour
to find out if I will need
surgery on my knee as one of the
tumours that is at the back of
knee is growing and giving me
some pain and also stopping me
from wearing my knee brace, so
my knee keeps giving way on me.
29th January 2009:
Mr. Henry did not say very much
really, apart from wanting me to
have more physio', he looked at
my knee's and said my knee's
caps are not stable, he told my
mum that one of the tumours in
my knee is over 3.5cm in size
with lots of smaller one's
growing round it. He mentioned
that the tumour could of grown
and that he did not know how to
go about trying to remove the
tumour or even if it could be
removed so he wants me to see
another doctor at the M.R.I
hospital who knows more about
NF. I don't know when that will
be yet. But I hope not too long
as my knees are giving me some
pain and making it difficult for
me to wear my braces.
Having a really bad time with my
back at the moment, but I see
Mr. Oxborrow in two weeks, mum
said she will mark my back with
a marker so that I can pin point
where I am getting most the
My foot braces have gone in for
repair at the moment and the guy
at Orthotics said he will find a
different kind of knee brace for
me to wear as the ones I have
hurt the back of my knee where
some of the tumours have grown.
He is also going to make me a
new back brace so I can wear it
when the pain is really bad and
don't want to be doped up on
tablets. I will not get the back
until the 25th February though.
My mum's been in hospital too,
she had to have an operation on
her toe, they fused one of her
toes and had to remove one of
the nerves in her toe as it had
thickened, my poor mum is now
hobbling around with a rod
sticking out of her toe for the
next six weeks.
Then it was my brother's turn at
the hospital, mum received a
call to say that work had taken
him to the A/E department with a
bad nose bleed, after four hours
in A/E he had recovered and was
able to come home and told to
take things easy for the next
forty-eight hours. What a
start to the year, surely it can
only get better.
Don't forget to look out for me
on Hollyoaks this Friday (20th
February) when Andrew Moss and I
flirt at the bar. I cannot thank
Noel Edmonds enough for
arranging for me to go on
Hollyoaks and I still can't
I have got a busy few weeks with
hospital appointments and will
let you know the results when I
picked up my new knee braces, which felt ok when I tried
them on in hospital, but after having worn them for a while
they began to itch. Mum got me some long socks to wear under
also fitted for a new back brace and as I am getting more
pain to the top of my spine the new brace will go higher up
the back. I have gone for a really cool picture on this
brace. Keith, the guy who makes my brace, said I was too old
for pictures now, but he knows I’m a big kid and he let me
pick a picture. I have gone for a blue background with stars
on it, I’ll take a picture of it when I get it back.
I went to
see my favourite doctor, Mr. Neil Oxborrow, who is my spinal
surgeon at Hope Hospital in Manchester about my back. The
operation I had on my spine in 2005 did not go without it
problems for Mr Oxborrow as many of you will have read in my
earlier blog. But recently the pain in my back has been
getting worse and one of my hands has started to feel cold
while the other feels warm. Mr Oxborrow said I would need to
talk the problems with my hands over with my Neuro’ surgeon,
but was concerned about the pain that I am getting in my
back. Having put one of my last x-rays up on screen, he was
a little concerned about one of the screws to the top of my
rods and the fact that my spine is curving above where he
went up to with the rods.
After having a chat with him it was decided that I go
back in the back brace to help with the pain when I am in
college and when the pain is really bad. He mentioned doing
further surgery to put more rods on spine taking them all
the way to the top. He said the surgery comes with risk as I
have so many tumours on my spine and that he would have to
do surgery from both the back and front of my chest. He
wants me to ring him in May and let him know if I want to go
ahead with the surgery. If I decide not to go ahead he will
discharge me as there is nothing more he can do for me. I
really do not know what to do, the pain really kills me at
times, but the thought of another big operation also worries
me. If I do decide to have the operation I will need to have
lots of other test and scans and I would only allow Mr.
Oxborrow to do the surgery.
going home with lot to think about Mr. Oxborrow sent me for
a full spinal x-ray so that he could view both x-rays.
I had to wear one of those silly gowns
that never fit or fashion up at the back, Phil, one of my
favourite ambulance drivers had arrived to take me home and
seen me in the gown, how embarrassed was I.
lol… I knew I would
be in for some stick off him. But being a girl I can take it
and will give as good as I get lol.
17th March 2009:
I saw Dr. Huson a couple of weeks back, we spoke about the
operation that Mr. N Oxborrow asked me to consider having.
Dr. Huson was also going to London for a meeting with Dr.
Ferner she was also going to have a chat with Dr. Ferner
about me and see if she would like to do a video link in
clinic. But Dr. Ferner said she would like to see me in
person so I will have to go to London at some point to see
I received some notes from Mr. Oxborrow and in it he says
that he is a little concerned about the appearance of the
top screw and wondered whether that some progression of my
NF had caused scalloping around the top pedicle screw. He
was going to have my x-rays reviewed at the x-ray meeting.
I am back in the hydro’ pool tomorrow, I have not been for a
few weeks as I have had other appointments to attend and as
my back as been really painful I am hoping the warm water
and gentle exercise will help.
I will be glad when my new back brace is ready as my other
one is far too small for me now. I was in so much pain that
I asked my mum to ring up and see if my new brace had come
back and maybe get an earlier appointment but it’s still not
I have also started being sick again and cannot keep
anything down, I am just hoping it a tummy bug and will see
how it goes over the next day a so.
2nd April 2009:
Kirsty is not very well at the moment and
unable to update her web page. But she wants you all to
keep emailing her if you have any problems of your own
and she will get back to you and do what she can to help
23rd April 2009:
have just spent the last four weeks in hospital due
to continues sickness. Mum took me to see an out of
hour’s doctor who gave me an anti sickness tablet
that melts under the gum but they did not help, so I
saw one of the GP’s at my surgery two days later who
said I was mildly dehydrated and gave me some
Dioralyte and said I would need to come back if
things got any worse, I could not manage to keep the
Dioralyte down so mum and dad took me back to the
out of hour’s doctor two days later, the doctor
asked my dad to take me to the A/E department and
that he would fax them to say I was on the way.
When the doctor at the hospital
saw me I was put on a drip and told I would have to
stay in hospital for a few days, little did I know
them few days would lead to four weeks.
During my four week stay in hospital I had some
investigation’s done to try and find the cause of my
sickness, the first test they did was an endoscope,
this was done by using a narrow flexible, telescopic
camera, which I had to swallow and then they passed
it down my
oesophagus and into my tummy. I kept being sick while they were doing the test and they kept having to vac the sick away. The results showed that I had some inflammation to my duodenum. But they did not think this was the cause of my sickness. The doctor said that he had taken a biopsy (a small sample of tissue) for testing. I had a sore throat for a while after the test.
I also had an ultrasound scan of
my tummy this just showed some tumours but they were
really small and again they did not think they were
the cause of the sickness. I also had a Brain scan,
which confirmed I have a brain. But they found
nothing to worry about on the scan, which was good
news. I also had a MRI scan on my tummy, which
showed more tumours than the ultrasound scan did and
the doctor hopes to talk with my NF doctor (Dr. S
Huson) to see if there is a possibility that one of
the tumours are on nerve that is making me sick.
One of the doctors suggested that I am making
myself sick, my mum went mad with her and told her
to ask the nursing staff who had been sat with me
when I had been being really sick and one of the
doctors had also been in the room a number of times
when I had been vomiting. Mum asked the doctor if
they would do a gastric study but she just said what
did we hope it would show and my mum said, the
answer to why she is being so sick. But she refused,
saying she did not see the point in having the test.
My mum continued to ask if they would just do
the gastric test and in the end they the doctor
agreed to arrange for me to have it.
Five weeks on and I am still
vomiting over 1000ml a day back, it’s not that I
don’t want to eat and drink, I do, it just does not
want to stay down for some reason.
having a gastric emptying study test done on the 1st
May, which will show if my food is going down and
digesting as quick as it should (This is the test my
mum kept asking for them to do).
I would like to thank all the Nurse's and staff
on ward F14 at Wythenshawe Hospital for taking such
good care of me and I'm sorry for giving you so many
pooook bowls to empty. Mum and dad are running up
down emptying them now lol.
I have now got my new back brace, I will take a picture and let you see how jazzy this new one is.
2nd May 2009:
I had the gastric emptying study done
yesterday and pleased to say I managed to drink the
stuff they gave me and was only sick a little bit.
Since I have stopped taking all the anti sickness
tablets my sickness is settling down and I have not
been sick after every drink that I have. I will let
you know when I get the results of the test.
Please take a look on
link to read some great news
that I got up to last weekend. Thank you Linda and
Phil for a great weekend and for nominating me for
the award in the first place.
23rd May 2009:
phoned on Tuesday to say the doctor had looked
at the gastric emptying results that I had two weeks
ago and wanted to see me to discuss the results.
Mum and I were asked to attend
the hospital the next day. After sitting with the
doctor and her asking if the sickness had stopped, I
explained that things had settled a little, but I
was still being sick everyday. The doctor then told
me that the results showed that I had severe form of
gastric emptying and that any food I eat is not
moving as fast as it should, which is why I am being
so sick, on top of that the doctor said I have so
many tumours in my tummy that they are not sure if
any of the tumours are on a particular nerve that is
making things worse. They want me try Erythromycin,
one tablet four times a day for four weeks (this is
normally used as an antibiotic, but in my case it’s
being used to make my food move more quickly), if it
helps I have got to continue taking it for another
four weeks. But if it does not help after the four
weeks, I have got to stop taking it and try this
other tablet for four weeks (can’t remember what it
was called). I go back and see the doctor in eight
weeks and if things are still the same they will
talk about trying hypno’ therapy, if that does not
help I may have to have my stomach removed.
The doctor said they are running
out of medication to try, which is why they think
the tumours maybe making things worse. Let’s just
hope these tablets work and I don’t have to go down
the path of having my stomach removed.
Not much news
really, I am still being sick and the tablets that
the hospital gave me are not helping at the moment.
I am seeing my GP one day next week and will try
some other tablets for four weeks and see how I go
I have been busy working on my next charity
event. I am hoping to stay over night in an haunted
place. Chris and Pete came to see me this evening
they are from the Manchester Paranormal and are
going to help me find the most haunted place in
Manchester that they can. Many of my ambulance
drivers and other medical people involved in my care
are going to do the event with me. Channel M filmed
me last week talking about the event and hope to
come along on the too. If everything goes to plan I
should raise lots and lots of money for other poorly
children to have a wonderful holiday.
26th June 2009:
Fingers crossed the plans for my stay in an
haunted place are going well, I am looking at
staying in Hyde Town Hall, which is meant to be one
of the most haunted places that is near to my home.
Keep looking on my
page for more information on how plans for that
event are going.
I am still being sick
after having any fluids, I
saw my GP this morning due to the sickness my GP is
going to have my hospital appointment brought
forward, I have also asked for a second opinion, my
GP is going to ask for a different doctor to see me.
I have also got a really bad ear infection again at
the moment, I am at the hospital today to have them
I have still not got the appointment to see Dr.
R Fernere at Guys Hospital yet, my NF doctor said
she wrote to Guys before she went away so I should
hear something soon.
The pain in my back has been really bad too, I
am waiting on a scan of my spine to see if I need
further surgery to the top of my spine.
12th July 2009:
No real news, things are still very much the same at
the moment. But I have got a few hospital
appointments coming up over the next few weeks so I
will update after I have been to all my hospital
I had to take my leg/foot braces and back brace
back to the hospital last week as they were giving
me some problems, they have been taken off me while
some adjustments are made and I should have them
back next week. Paul spoke about me going in a brace
that goes over my shoulders and round my neck as
this type of back brace would hold me more straight
but I don't want to go down that line as I will not
be able to drive with it on. I am sure my other
brace will be ok once the adjustments have been
No news on my book being published yet as I am still
waiting on Julie (Mr. N Oxborrow's sec') to write up
what Mr. Oxborrow wrote for my book, when that is
done I can start moving forward with it.
have had a busy few weeks with
hospital appointments and have appointments almost
everyday for the next two weeks.
July I was invited to the Didsbury Rotary Club where
I was asked to do talk about the charity that I
raise money for, I also took the opportunity to sell
some of my pin badges and sold 27 raising £27.00 for
the charity. I always have pin badges at home so if
anyone wants to buy one please email me.
Physio’ in the hydro’ pool and
dry land physio’ as continued as normal and Jane (my
physio’) works me hard. “Thanks Jane”.
My ears have been really bad again
and after having antibiotic and seeing my GP every
week I was sent to the hospital to have them cleaned
out. I have to go back to the hospital on Monday to
make sure both ears are still clear. I have also had
a really bad headache for the past few weeks and my
GP has arranged for me to have a Brain scan done.
I am still being very sick after having any fluids or anything that si sloppy, none of the tablets are working. I went back to see Dr. Watts this week, I was told that my sickness was going to be very difficult to cure due to the tumours in my tummy. It was suggested that it could be the Gabapentin that was making things worse until I mentioned that I have been on the Gabapentin for many year and that I had the same problem after my spinal surgery and I was not on Gabapentin then. The doctor also mentioned that I should have a brain scan repeated due to my headaches even though I only had one in April, he wants to make sure nothing was brewing on the brain (his words, not mine), I told him that my GP had just arranged for one to be done, the next day, I received a call to go for my brain scan (10th September), which is when we get back from holiday. The doctor also spoke about trying hypnotherapy and about the possibility of having surgery to remove my stomach. He did some blood test and also wants me to have a chest x-ray. He is going to write to me next week and tell me what is going to happen next. I was given a new appointment for November.
I go to the hospital over my knees
on Monday, they are no better and still continue to
give way on me.
I have also got the date for going
to see the doctor at Guy’s in London, which again is
when I get back from holiday and will let you know
how my appointment goes.
My book is now finished and I hope
to find a publisher very soon, again I will let you
know when I have news on finding a book publisher.
my Spookathon are going well, I have a special guest
coming and anyone wanting to bid for a place please
"events for charity"
link for more details. "Thank You".
I having a MRI Brain
scan and MRI spine Thoracic and Lumber/Sacral scan
in the next few weeks so will update after I have
the results of these test.
I saw the doctor over my knees
and he said that both knees are out of line and
wanted to do key-hole surgery to re a line them
both, but I asked if he could try anything else
first so he is going to arrange for me to have some
more intense physio' where they wrap my knees up in
straps. Could not understand what he was going on
about really, but anything is better than surgery.
sorry I have not updated for a few weeks. But I have
been really busy with hospital appointments, working
on my next charity event, getting ready for starting
University and I have been on holiday to Florida
with my mum and dad.
On returning home from our holiday on the 9th
September I had to go for a MRI Brain Scan the
following day due to the headaches that I have been
getting. I have not received the results back from
this scan yet. But I am looking at it as being a
good thing, if anything was wrong I am sure I would
have heard by now. I am still getting lots of
|I am still having my weekly physio', which is going to be moved up to Warrington so it will make things easer for me and every six weeks I will have physio' with Jane at my local hospital (Jane has been my physio' for the past four years), just so she can keep an eye on things.
I had my spine scan on the 22nd September, the
scan was taken of my Thoracic and Lumbar/ Sacral
spine, I have been getting a lot of pain in my back,
which is getting worse. My mum came with me and she
brought some of that magic cream with her, you know
the type that helps stop the needle from hurting (I
don't do needles) just in case I needed a needle,
mum waited in the waiting room while I went into the
scan room. The scan started well until they said
they needed to inject some contrast dye into my arm.
I told them that my mum had some of the magic cream
with her and would they kindly put some on before
attempting to inject my arm. I have a fear of
needles as the nurse/ doctor can never find a decent
vein to use and when they do, my veins always pop
and they have to try again.
After the nurse put the cream on
my arm I asked if my mum could come and sit with me
while I had the injection, but the nurse said I
would be ok and that she would hold my hand (I
wanted my mum, not the nurse). I warned the nurse
that I might scream, shout or even swear and I was
saying sorry now before I have the injection, it was
no good telling me to be brave that’s not helpful.
After the nurse had four
attempts at trying to get a needle in my arm and my
arm looking like a pin cushion I was beginning to
get very upset, they decided to call for the doctor
to try and get a needle in after he had tried a
further three times he said let me try the back of
your hands. I pleaded with him not to go in the back
of my hand as although the veins look juicy they
riddle and pop, he would not listen and said he
needed to get this needle in so that they could
complete the scan. My vein did riddle and pop as he
went in with needle and by this time I was really
upset and just wanted my mum. He decided after
having eight attempts it was clear they were not
going to find a vein and they allowed me to go and
see my mum. The doctor said that he would have a
word with my spinal doctor and if he really needs
the scan doing with the contrast dye then I will
have to come on to the ward while they try and do
When I got to the waiting room
and saw my mum I just burst into
tears again, my arm was
beginning to go black and blue
from where the needles had been
given. After having a hug off my
mum I was glad to be home. I am
just waiting on the results now.
On the 30th September was my visit to Guy's in
London to see Dr. Ferner, mum came with me and we
were picked up at 7am by ambulance. Jim and Tony
were our ambulance guys and they were both really
nice and very funny. I had to lie down some of the
way as I was in a lot of pain with my back.
Dr. Ferner was really nice, we
had a chat but unfortunately she had not seen any of
my scans, I thought Dr. Ferner was going to tell me
if I was a good candidate for the treatment in the
USA, but she did not speak about it. Dr. Ferner said
I should think about having my spinal surgery in
London by one of the NF doctors as if they think any
of the tumours on my spine could be removed they
would do that at the same time. But I really like
Mr. N Oxborrow, he is a great doctor and he’s always
been there for me and I have so much trust in him, I
am going to chat with him when I next see him as the
pain in my back is getting really bad.
still very confused about the surgery on my spine.
But if I do decide to have it there is only one
person that I would let do the surgery and that's
the doctor that's been there for me "Mr. N
Dr. Ferner said she would see me
again if I wanted to come and see her again. I may
go and see her again but not until she’s looked at
On the way home I was sick a
couple of times and Jim and Tony took care of me.
“thanks Jim and Tony for being so understanding”.
On the 1st October I went to see Dr Lieberman
at the pain clinic, due to the pain in my back Dr
Lieberman's decided to double my medication so
instead of taking 300mg of Gabipentin 3 x a day I
have now got to take 600mg 3 x a day and I go
back and see him in four weeks.
Next month I am back to see the
doctor over my sickness, which is still happening
everyday, Dr Ferner thinks I might have a problem
with my thyroid as even thou I am being sick
everyday I am putting on weight, I am tired all the
time and my periods are very heavy, I am having a
blood test next week just to make sure everything is
I have my own car now so I can
get a round much easer and it helps me be more
independent. I will try and get a picture of my car
on my web soon, so you can all see it. I have called
my car “Spike”.
I have been in so much pain
lately that I am keen to get answers and a diagnosis
as to why the pain in my back is so bad.
I have now got the results of
my brain scan and chest x-ray that I had in
September. The findings on brain scan were as
There are multiple small nodules
in the subcutaneous soft tissues of the head and
neck, and the deep facial spaces, and further in the
medial and superior aspects of both orbits. There
are possible small mass-like nodules within the
cavernous sinuses. There are further multiple
bilateral lesions affecting the exiting cervical
nerve roots and cervical plexuses. The appearances
are in keeping with neurofibromatosis.
I had a normal cerebrum,
brainstem and cerebellum for age. Normal
and basal cisterns. Normal midline structures and
craniocervical junction. Normal major
cerebrovascular flow voids.
Comments: multiple head and neck
subcutaneous soft tissues and deep facial space and
orbital extraconal, cavemous sinus and cervical
nerve roots and cervical plexus neurofibromas. The
appearances are in keeping with neurofibromatosis.
No intracranial large mass or hydrocephalus.
The notes for chest x-ray said
there were no change from the x-ray I had in January
but my doctor said she could not find any notes for
chest x-ray in January and I could not remember
having one in January.
I am still having weekly physio’
and this look like it’s going to be on going for a
long while yet.
I was contacted this month by a lady who had read my
web page about me constantly being sick due to
having “Gastroparesis”, which is delayed gastric
emptying, it’s a disorder where the stomach takes
too long to empty its contents.
Gastroparesis occurs when the
vagus nerve is damaged and the
muscles of the stomach and
intestines do not work normally.
Food then moves slowly or stops
moving through the digestive
This lady very kindly sent me a
link to a story about a young
woman who she had read about and
that had the same problem as me.
She too had tried all the anti
sickness tablets and none would
help. So she turned to the
internet to try and find an
Eventually this young woman stumbled across a
pioneering treatment which involves a special
pacemaker being attached to the stomach.
The pacemaker, which is implanted under the skin,
with wires going down into the muscle walls of the
When the patient is eating gastric activity prompts
the pacemaker to send a small electrical impulse to
the muscles and the gut contracts helping the
stomach to move the foodstuff along the gut.
The quality of her life has been completely
transformed by the revolutionary technique and she
hasn’t been sick since. I am going to tell my doctor
about the pioneering treatment and ask if I can be
referred to Robert Macadam, a consultant in upper
gastrointestinal surgery, at the University Hospital
Aintree, Liverpool who is at the forefront of this
pioneering treatment. I may have to apply for
special NHS funding as it cost around £10.000, which
is what the young woman who had the operation had to
The operation to fit the pacemaker, which takes
around one-hour, is carried out under general
A five inch incision is made above the belly button,
and the surgeon then cuts through the fat and muscle
and the abdominal wall until they are able to fit
the pacemaker, roughly the size of a credit card,
directly above the stomach.
Electrodes are then inserted
into the stomach wall in various
locations so they are able to
pass electrical impulses and
cause the stomach to contract.
The first experiments into this
type of treatment were carried
out in the US but are now
available in the UK.
My sickness as been a little
better this past week but I am
not drinking much as it’s when I
drink that I start being sick.
But this is something worth
looking into as it’s not as bad
as having to have my stomach
My weight is
steady at the moment, which is
another good thing.
um spoken to my GP last
week about the doctor in
Liverpool and about
the pioneering treatment which
involves a special pacemaker
being attached to the stomach
to stop the sickness and my GP
said to mention it to Dr. Watts
when I see her and that she
would be happy for me to be seen
by this doctor in Liverpool, so
on my GP's advice that's what I
am going to do. While I am not
drinking much fluid I am not
really being sick very much,
some days are much worse than
9th November 2009:
My knees are really painful
and keep swelling up at the moment, I have started
some new physio' so not sure if it's this new physio'
that's making the knees swell, but will mention it
to my physio' when I see her this week.
I went to see Dr. Watts last
week over the sickness, mum spoke about me seeing
the doctor in Liverpool who is doing
pioneering treatment which involves a special
pacemaker being attached to the stomach, which had
been successful on another young woman who has
she did not think I would be an ideal candidate for
the treatment due to the tumours in my tummy. But my
GP said she will send me to see him if want to get
some advice off him, I feel I am back to square one
this week with the sickness and just feel really
drained at the moment, this week has been
particularly bad with the sickness.
The doctor also spoke to me
about the brain scan results and she is going to
show the results to the neuro surgeon due to the
following “possible small mass-like nodules within
the cavernous sinuses and the further multiple
bilateral lesions affecting the exiting cervical
nerve roots and cervical plexuses”. They are going
to compare the scan with the last one that I had in
April and see if these latest results are something
Monday I am at the hospital over
the problem with my knees and will let you now how
Not long off my spooknight now, everyone is
looking forward to it and I'm sure everyone will
have great night as well as raising lots of money
for the poorly children.
I have just spent another week
in hospital due to this sickness, but I also had an
infection this time too.
I had been to Chester with Uni’ and really did not
feel very well and phoned my mum who told me to go
and see the nurse on campus, which I did when I got
back, the nurse was just leaving but said that I did
not look very well and she phoned the GP who I
normally see when I am at Uni’, the receptionist
told her they had no appointments and that she would
have to ring the out of hours service, which the
nurse did only to be told she was to ring the GP
back as they were still open and should still see
me. After having no further look with the
receptionist I decided to wait until the surgery was
closed and ring the out of hours doctor up again.
By the time I got to see the out
of hours doctor I was feeling really poorly, he had
a look at me and sent me straight to hospital, I
phoned my mum and my brother (Chris) and my mum and
Chris met me at the hospital, I was kept in and put
on a drip to get some fluid back into me. As the
days went by I was beginning to worry that I was not
going to get home in time for my charity spook.
I managed to get home from hospital just days
before my spook night.
I am feeling much better after my recent hospital
stay. I was at the MRI last week seeing the doctor
over my knees. He said that I need surgery on both
knees and that they will try keyhole surgery first,
if I agree. I asked if I could think about it so
he’s given me three weeks to make my mind up. He was
really good looking and I said if he does it than I
will have it done lol… But he is the reg’ and only
assist in the operation's. I asked him to put a
comment in my NF book for my NF doctor and told him
that doctors normally include their mobile number so
the NF doctor can ring them if she needs too, he
started laughing lol, well, it was worth a try lol…
I go back and see
him on the 21st December '09. The operation that I
need is realignment surgery to both knees.
The doctor was really good and explained that the
kneecap normally sits in a groove in the end of the
thighbone called the trochlea. When the knee bends
and straightens the patella moves up and down in
this groove. This movement is termed ‘patellar
tracking’ and if the patella sits centrally on the
femur and does not deviate then no symptoms arise.
But if the patella has excessive outward or lateral
forces then it can move in an abnormal way causing
discomfort and the feeling of instability. In severe
situations the patella can even dislocate from its
correct position and pop out of the side of the
This is why both my knees keep giving way.
I hope you all have a great Christmas and New Year.
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