Kirsty’s Story




This is my Diary:

2008-2009

Living with  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 this year.

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.
24th March 2008:
I saw
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
Mr. Oxborrow thinks first.

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 normal.

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 be done.

8th April 2008:
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 more detail.
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.

I am going into hospital for surgery on my foot tomorrow, I should only be in a couple of days thou depending how surgery goes.

11th April 2008:
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 weeks).

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 appointments.

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 news.

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 size.

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 cancellation.

I am having my PET scan on the 3rd June at Christies Hospital, having had one of these before I know what to expect.

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 is.

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 children's hospital.
Mr. N Oxborrow was not expecting to see me as it was not really his clinic, he was just filling in for Mr. Williamson.

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.

I 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.

Some new pictures of my spine:

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 Gary.

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 wobbly.


 

Cathy (my dietician) checks
my weight.



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 chronic pain.
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
shoulder.

External Neuromodulation
Unit.

Having treatment on
my shoulder


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 first.

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.

No 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.

19th September 2008:
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 x-ray.
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 Christmas.
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 again.


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.


27th October 2008:
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 iron deficiency.

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.

10th November 2008:
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.

15th November 2008:
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.

27th November 2008:
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:
I don’t 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
Just giving 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 raised.


2009
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 tumours.

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 see the Pictures 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.

27th January 2009:
Yesterday, I had my dressing changed
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.

14th February 2009:
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 pain.
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 believe it.

I have got a busy few weeks with hospital appointments and will let you know the results when I get them.

26th February 2009:
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 them.

I was 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.

2nd March 2009:
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.

Before 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 Dr. Ferner.

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 back.

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 you.
23rd April 2009:
I 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.

I am 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 the About Me 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:
the hospital 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.

9th June 2009:
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 with them.


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
events 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 cleaned out.

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 appointment.


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 made.

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.

15th August 2009:
I have had a busy few weeks with hospital appointments and have appointments almost everyday for the next two weeks.

On Tuesday the 14th 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.

Plans for my Spookathon are going well, I have a special guest coming and anyone wanting to bid for a place please visit my "events for charity" link for more details. "Thank You".

25th August 2009:
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.

8th October 2009:
I am 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 headaches thou.

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 it.

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. I am 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 Oxborrow".

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 the scan’s.

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 ok.

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.

2nd November 2009:
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 follows:

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  ventricles 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 tract.

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 alternative treatment.

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 stomach.

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 do.

The operation to fit the pacemaker, which takes around one-hour, is carried out under general anaesthetic.

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 removed. My weight is steady at the moment, which is another good thing.

Mum 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 others.

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.

17th November 2009:
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 Gastroparesis”, 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 new.

Monday I am at the hospital over the problem with my knees and will let you now how it goes.

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.

2nd December 2009:
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 knee. This is why both my knees keep giving way.


15th December 2009:
I hope you all have a great Christmas and New Year.


Please Click on any of the Dates below to read more.
2002-2003    2004-2005 2006-2007 2008-2009 2010-2011    2012-2013