Kirsty

Kirsty’s Story

2007-2008

My fight against Neurofibromatosis (NF1) and Scoliosis continued.

9th January 2007: Lung Function Test
I went for The Lung function tests today, which are being done to help determine the cause of my shortness of breath, which I have been getting for a few months now.

Lung (or pulmonary) function tests test show efficiently I am breathing. I was asked to put on a nose-clip so that all my breathing takes place through my mouth, then I had to breath into a mouthpiece attached to a machine that measures the air that I breath in and out.
I had to breath in a special mix of oxygen and carbon dioxide to see how well my lungs are absorbing the oxygen and excreting the carbon dioxide.

I had to take deep breaths then exhale as fully as possible, I had to keep repeating the test over and over again as they were not happy with the reading.

I had a few different breathing exercises to do, which did make me feel dizzy and breathless.

I had to stay and see the doctor for the results of the test.
The doctor said that he was not sure what was going on as the lung function test came back with some abnormalities but he was still not sure if it was anything to do with the tumour on the lung or not. He thought the tumour was on the outside of my lung when he first looked at the chest x-rays but after having the Gamma scan he said the tumour is inside the lung and that this will be kept an eye on. He is now going to have a chat with another Chest Specialist to discuss the test results and to see what he should do next. He will phone and let me know.

11th January 2007: Sheffield Children's Hospital.
I went to Sheffield Children's hospital today to see Dr Godard, Sue and Rebecca who are all part of the pain team.

After having a chat with Dr Goddard and the team about how my pain had been Dr Goddard decided that I should also take Ketamine to help with the pain, I only have to take this when the pain is bad and no more than twice a day.

Ketamine is a powerful anesthetic drug; Ketamine also works as a pain killing drug. If things don’t get any better I may have to think about going on some much stronger medication. Susan also gave me some more advice about the V T.E.N’s machine that they gave me last time. I have to go back next Thursday to do some more relaxation exercises with Rebecca.

I have also seen my E.N.T Dr again this week and unfortunately I still have the ear infection and using antibiotics and ear drops to try and clear this up and I go back net week.

21st January 2007:
I had a few hospital appointments again last week, paying visits to Sheffield Children’s, St Mary’s and Wythenshawe Hospital.

At Sheffield I saw Susan who is part of the pain management team and physiotherapist. Mum and I both took part in some relaxation exercise, which was really good after the bad journey we had getting to the hospital, the weather was so bad, we got stuck on the moors and could not ring any body as we could not get a signal on any of our phones, the ambulance guy (Keith) was saying we may have to go back as the weather was getting so bad. We did arrive be it 45 min’s late and Susan did the Laura Mitchell Relaxation Exercise and gave me a tape to bring home with it all on. She is also trying to change my spinal mattress for me. We got home at 7.15pm feeling really tired.

St Mary’s Hospital:
I saw both Dr Sue Huson and Rosemary Abbot, after telling Dr Huson what had been happening she felt it would be a good idea if I had a PET Scan.

PET stands for Positron Emission Tomography. This is a fairly new type of scan developed in the 1970s. It can show how body tissues are working, as well as what they look like. The scan produces three-dimensional, colour images of the body using radiation.

It can be used to diagnose a health condition, or find out more about how a condition is developing. It can also be used to measure how well treatment for a condition is working.

A PET scan works by detecting radiation inside the body, and makes images that show how the radiation is being broken down. Radiation is given to the body safely as a medicine called a radiotracer, so it goes to the part of your body that needs to be examined. The level of radiation is very small, so it doesn't damage the body.

Dr Huson is also writing to the plastic surgeon Mrs Brains about having the tumours removed from my neck and breast as not only are they both new they are growing and painful.

Wythenshawe Hospital:
I was at Wythenshawe for my physio’, which went well and over my continued ear infections, both ears are feeling ok at the moment after my last lot of antibiotics.

I am at the hospital everyday again next week so will try and update again next weekend.

24th January 2007
Tomorrow I'm having the colonoscopy test, I will be admitted to hospital as a day case as I am being sedated to keep me comfortable and to help me relax during the examination. Mum is going to stay with me and the ambulance guys said they will make her lots of brews while she is waiting around.

Friday I am at Pendlebury Children's hospital so I will try and update over the weekend and let you know how it all goes.

Colonoscopy Test
Mark, one of my ambulance guys picked mum and me up this afternoon to take me into hospital for my colonoscopy test.

When I arrived at the hospital, the nurse gave me a gown to change into and spoke to me about the sedation that I was about to have. A Colonoscopy is nearly always done with sedation and painkillers because it would be uncomfortable without.

Because of the problems I have with needles the nurse put some magic cream on my arm in two spots, this was meant to stop the needle from hurting. After two doctors having four attempts each at trying to get the cannula in my arm they had to send for the theater doctor to have a go. My arms are so bruised, I was crying with the pain (not like me), the nurse was almost crying and so was mum, the doctor said my veins are so bad they just kept blowing every time they went in with the needle. The theater doctor said the only place left to go now was in the wrist on his first attempt the vein went again. Mr Crampton came in to see if he could help and kept saying he was sorry that I was having such a bad time. The only place left now was my other wrist, and at last the doctor managed to get the cannula in, now both my arms are black from the amount of needles I had (ten in all).

Mum gave me a kiss and said she was going to the shop in the hospital to buy me a soft toy to add to my collection for when I came round.

Why I had my colonoscopy?
I was advised to have a colonoscopy due to symptoms such as bleeding from the anus, pains in the lower abdomen that I was getting.

What happened during my colonoscopy?
I had my Colonoscopy test done as a day case. I was given a sedative to help me to relax. This was given by an injection into a vein in the back of my wrist. The sedative made me feel a little drowsy but did not 'put me to sleep'. It is not a general anaesthetic.

I had to lie on my side on a couch. The doctor (Mr Crampton) gently pushed the end of the colonoscope into my anus and up into my colon. The doctor could then look down the colonoscope and inspect the lining of my colon. This was then transmitted through a camera attachment onto a TV monitor for the doctor to look at.

Air was then passed down a channel in the colonoscope into the colon to make the inside lining easier to see. At the end of the procedure the colonoscope was gently pulled out. The colonoscopy took about 30-40 minutes. The doctor said he would send a report but looking at the results everything looked ok, which was great news.

Jason, one my cool ambulance guys stayed late to bring me home and make sure I was ok “thanks Jason”.

My arms are really painful and black and blue from the doctors trying to get the needles in. Mum bought me a dog (not a real one), which is really cool.

This is one of arms, my other is even worse.

Pendlebury Children’s Hospital: Mr N Oxborrow 26th Jan' 2007
I saw my favourite doctor today Mr N Oxborrow and while I was waiting I saw my favourite nurse (Lesley), she is really cool and very funny, and I took some picture of Lesley on my mobile.

Told you I would put you on my site, hope you like it Lesley.lol..

Mr Oxborrow sent me for an x-ray, when I got back I went into see him, looked at the x-rays and was really pleased that my spine had not gone any worse at the top and said the spine had fused well and just looked like solid piece of bone now, if things stay the same I will not need another op’ on my spine.

He than asked why I was using the crutch, I told him about the drop foot and he asked me to take my shoe and foot brace off so that he could have a look. He did a few tests and said “yes” you do have drop foot and wanted to know how long it had been like that? He than called to another doctor and asked him to arrange for an urgent scan of the bottom of my spine and pelvis area to be done. He is worried that I may have a tumour at the bottom of my spine below the mettle work that he did.

My drop foot was very sudden really and this would answer why I have been getting so much pain in my lower back and groin area too.

He asked when I next see Mr Thorn, which is in April and mentioned that he had spoken to Mr Thorn about the pain that I was in, Mr Thorn had told him that I have multiple tumours all over my spine and he was not sure what to do or if removing any of them would help.

I have got to go back and see Mr. Oxborrow in six weeks for the results.

31st January 2007
Hospital phoned, I have got to go for my scan on Friday the 2nd February 2007

2nd February 2007
My scan went well and was done by Ken. I have known Ken for a long time he is a really nice guy. Ken said it will take about a week to get my results sent to the doctor but I'm not going back to see Mr. Oxborrow until March.

2nd March 2007
Dr Huson as been away and will be writing to the plastic surgeon Mrs Brains about having the tumours removed from my neck, tummy and breast as not only are they new tumours they are growing and painful. She will also arrange for me to have the PET Scan done very soon too.

The pain in my back has been really bad and I have not been getting to sleep until after 2am, I have been taking more of the Ketamine, which helps but makes me feel dizzy and bit funny.

I am also waiting to hear about getting a spenco mattress and electric bed, which doctors think may help me.

Still going to the hospital weekly and Ruth my physio' is really good and we have some fun in the pool, which you may get to see in my TV documentary.

22nd March 2007
Sorry, I have not updated for a while but it's been a bit mad here, the boiler burst in my bedroom and now my room is gutted. I lost four of my teddies, which I was more upset about than anything else. The news of my boiler bursting even hit the press.

Hospital is still the same, the tumour in my neck has grown since January so I have now got to see this other doctor and I get the results about scan I had tomorrow, Friday.

I have filmed the short documentary for Well Child, I had a camera follow me around for two days, it is going to be called "The day in the life of Kay" and will be going on the community channel in May some time.

After the crew had gone home on the Wednesday we were all really tired, I was going to go to bed but as I was not feeling so well mum asked me to stay down so that she could keep an eye on me. I am so glad I did because about an hour later we heard this funny sound coming from upstairs what sounded like air in the pipes, Waaaaaaaaaaaaa,

When dad and me went up the boiler in my room had burst letting out boiling hot water all over my bed down the wall on to the carpet. Chris (my brother) managed to get the water shut off and got this guy who he knows to come out and have a look at it. He said that I was not only lucky that I was not in the room at the time but the boiler had been giving out toxic fumes, which could have killed me in my sleep.

My bedroom is gutted, we had to get a new boiler, we are had the boiler moved into the loft for safety reasons. I was so upset as my teddies got it too and are now ruined. The story of my boiler made the Sunday paper, see link.

26th March 2007: Results of M.R.I Scan:
The documentary I took part in is on sky, the community channel on the 21st May but I don’t have a time slot yet. I will let you know when I have more news. It is only going to be on TV for about 7 min's but you can see more on the internet.

I went for the results of my scan last Friday, the news was not good, and my doctor told me that I have a new cluster of tumours at the bottom of my spine, which has caused the foot to drop. He said one of the tumours was over 3cm and the cut off point was 2 ½ cm, he was also worried that the tumour in my neck had grown yet again and the one in my lung was giving him some worry. He phoned this other doctor on her mobile to tell her about the results and she wants to see me next week when she is back in the hospital, in the mean time she wants all my scan reports getting together for her to look at. So I’m not sure what will happen next until I have seen this doctor next week.

My spinal doctor is really cool and a really nice guy, he asked how old I was now and when I told him 16 I thought he was going to say that it was time I went over to the adult hospital. But he said he would not do that to me and that he would continue seeing me at the children’s hospital until I was 20 years as an out patient, but if I needed more surgery that would have to be done at a different hospital.

Below are x-rays of my spine before surgery and again after surgery with the rods in:

I you look carefully you can see the curve in my spine

This is from a different angle

X-Ray showing the rods

2nd April 2007
Received a letter from Dr S Huson this morning telling me that she has written to Dr Hules regarding the PET Scan. PET Scanning has been shown to be very useful for people with NF1, to show whether any of the neurofibromas has the potential to turn nasty. Dr Huson said is she is not worried about any of my neurofibromas at the moment after examining me in clinic a few weeks back.

Well, it is my Birthday on Thursday, 5th April and I hope to have a brill time as I have in hospital for the last couple of Birthdays. I know mum and me are going out but mum is not giving much away, lol, I will tell you all how my day went over the weekend.

5th April 2007
Well, it's my Birthday today and it's great not to spend it in the hospital.

I received a letter about the PET scan this morning along with lots of Birthday cards, I go for my scan next week and will let you know more about that soon.

10th April 2007
Mum phoned to confirm my appointment for the PET scan only to be told it had been cancelled Dr Brennan is going to see me as soon as she has reviewed all the scans etc. Dr Huson and Dr Brennan feel that to do the PET scan before that may complicate things further. Also that all the Doctors involved in my care need to liaise (Mr Oxbarrow, Thorne, Dr Barber, Dr Brennan and Dr Huson, Dr Brennan is going to coordinate this). So I will let you know when I have some more news.

Mum is a little upset by it all as I have been getting a lot of pain in my chest and getting very breathless.

I had a great Birthday, which you can read about on my about me link.

19th April 2007
Unfortunately the hospital did not go so well today, Mr. Thorn my doctor put the scans up for me to see and told me that I have at least one tumour on every nerve that is coming out of my spine some of which are above 4cm. He also thinks that I may be starting with foot drop in my other leg and will need to wear a foot brace on that leg soon. Mum asked him about trying to remove some of the tumours and he said that it would cause more damage if he did and he was not sure if he could remove any. I took pictures of some of the scans,see pic's below

(sorry if I upset anyone by these pictures).

Scan looking from side

Scan looking down the spine

The doctors points to the tumours

I don't really understand the scans. But Mr Thorn said all the round bits and funny shaped bits that you can see are tumours and that the scan is kind of taken in slices.

Mr Thorn wants me to have a lung scan and if the tumour in my lung has grown then that will have to be removed.

3rd May 2007
I had to have the lung function test repeated today so the doctor could see how efficiently I am breathing since my last test.

What I had to do for the lung function test:
I was asked to put on a nose-clip so that all my breathing took place through my mouth, then I had to breathe through a mouthpiece attached to a machine that measured the air that I was breathing in and out. I found this really difficult and was asked to repeat the test a number of times. On one of the tests I had to take a really deep breath then exhale as fully as possible to measure my Forced Vital Capacity (FVC); this I was asked to do a number of time because I was not getting the peak that they wanted on the chart. I also did a test where I had to breath in a special mix of oxygen and carbon dioxide to see how well my lungs are absorbing the oxygen and excreting the carbon dioxide. I then had to go and sit in small chamber for some more breathing test.

I had to sit in a Small Chamber similar to this one

How the lung function test will help
Lung function tests are used to help determine the cause of shortness of breath and other breathing difficulties. They can help to differentiate between different forms of respiratory disease, such as obstructive conditions like asthma or problems caused by infections such as PCP.

I have now been put on the waiting list for a MRI Thorax scan to see if the tumour in my lung as grown. I go for a MRI Brain scan on Tuesday (8.05.07).

8th May 2007
An MRI scan usually gives the clearest scan of the brain and spine. I had to

have an injection of a dye, called contrast medium, to make the MRI scan clearer. I was not happy about the injection as when my mum phoned the x-ray department they told her I was not having the dye so would not need an injection. When the doctor came in the room and pulled e from the MRI machine I thought he was joking when he said I was going to need a needle. So yet again the doctor had problems trying to get the needle in my arm, which left my arm with several bruise’s and me feeling really dizzy and sick.

9th May 2007
Today I was at hospital for a weight check-up and hydro’ therapy, I had lost about 3lb in weight so was told that I must start having the scandishake everyday as I am not eating so well. Hydro’ got cancelled due to a problem with the pool. I am back at the hospital next week.

I received a call to say my electric bed will be delivered tomorrow, "can't wait".

10th May 2007
Well, my bed came and then had to go back as it was too big for my bedroom, I can't believe it as they told me it would fit. I have now got to see if the O.T's can get a smaller one. I will keep you informed.

I have got a few hospital appointments next week, so will update when I have more news. Please take the time to watch the video clips on my front page or N.F link, I am sure anyone with NF will find them interesting, there is video clips of: My Day, mum's interview, my interview and an interview with my N.F doctor.

20th May 2007
I am having so many problems with getting my electric bed at the moment and all because the wrong size was ordered.

I have got lots of hospital appointment over the next few weeks so I will up date as soon as I can.

12th June 2007
I have still not got my electric profiling bed this is all because the OT's ordered the wrong size bed.

I saw Dr Crompton the Gastroneterology doctor who said my results came back ok but that he wanted me to try docusate sodium capsules 100mg x2 at a night and see if that helps with the problems that I am getting.

The tumour in my neck has continued to grow and I have to see this other doctor on Thursday with a high possibility of having to have surgery on it. The test that I had done on the lung are still inconclusive so I have to have more x-rays in July and at that point if the tumour in my lung has grown then I will need to have part of my lung removed. My E.N.T appointment went ok too and I don't have to go back until later in the year unless I have any bad ear infection. I still have to continue going for physio' every week, which I don't mind. I will let you know how things go on Thursday.

15th June 2007
Thursday did not go so well, I have got to have surgery on my neck, arm and side. I will be in hospital a couple of days depending on how things go as they may be a problem with the surgery on my neck as the doctor is not sure what nerves the tumour is attached too yet. Surgery is planned for when the doctor gets back from her holiday in July.

Mum also received a call to say that Mr Oxborrow had ordered an urgent MRI scan of my pelvis, which I think is due to the results of the Nerve conduction test, we will just have to see. Mr Oxborrow thinks I may have tumours in my pelvis too. I have to go for my MRI next week.

1st July 2007
I had my scan scan last week and the great news is I did not have to have any needles, which I was really pleased about, I have not got the results yet but I will let you know when I have any news.

I have also got my new electric bed and spinal mattress so I am managing to get some sleep at long last.

24th July 2007
I have not had any news about the scan I had so I think that is good news. I should have the date for my surgery in the next week a so when the doctor gets back from her holiday.

The visit with Prince William and Prince was great please go to my About Me link to read more about that. I go for the fitting of my other foot/leg brace in August, I had to put the date back due to other hospital appointments.

31st July 2007
I got good news from my lung doctor Mr. P Barber today; he said that my lungs were looking good at the moment and that he thinks it best if he left things alone so does not plan to do surgery for the time being. But he wants me to see a lung Physiotherapist to give me some breathing exercises to do and see if that will help with the shortness of breath.

Last night I got very breathless so my hospital electric bed came in very useful and helped my breathing tremendously by being able to put the bed head up, which helped relieve my shortness of breath. I will let you now how the physio' goes.

14th August 2007
I have received news from the hospital that my surgery will be on the the 29th August '07, I go in hospital on the 28th August '07 ready for surgery on the 29th August, I am not sure how long I will be in for yet but it should only be a couple of nights. I will get conformation on Thursday when the doctor is back.

I start with physio' on my lungs tomorrow, the physio' said he would try and work it round my other physio' so that I don't have to come another day for it.

I also received a call over the scans that I just had to say the results have been sent to Dr Hughes and Dr Huson who plan to see me on the 12th September '07 and will then tell me what happens next.

23rd August 2007
I have been getting a lot of joint pain and bruising for no apparent reason especially on the legs, which I mentioned to my physio’ today, she told me to try rubbing or massaging the joints with some anti-inflammatory gel and to try some gentle exercise. Heat from a hot water bottle may also help relieve the pain and stiffness. If things are no better by weekend she wants to make an appointment with my GP

I am going to use a Mediflo Duo to help with my breathing a Mediflo Duo (see pic' below) is a dual use incentive spirometer that can be used for both Sustained Maximal Inspiration (SMI) and Positive Expiratory Pressure (PEP) simply by turning the product round and re-attaching the corrugated tubing. During SMI the flow-regulation lid allows the unit to be adjusted according to the my functional capacity. I have got to try and use this three times a day.

This is a Mediflo Duo

I go for my new leg/foot brace on Friday, I have got to have one fitted to each foot so I am going to ask if they can make it so they will fit into in trainers this time.

24th August '07
Went for the fitting of my new leg/foot brace's today, I had a pleasant surprise as Mike who I have spoken about before did the fitting, I have not seen Mike for over three years so it was great to see him again. My new brace's will be ready on the 26th September, which is day after my brother's 21st Birthday.

Please take a look at Mike's web page by clicking the link to learn more information on what an Orthotist does.

7th September 2007
My operation went well, I was only in hospital a couple of days, I had four tumours removed all together and mum was able to stay with me. I am still in some pain but that is only to be expected.

I have got to go to the hospital on Tuesday due to having a bad ear infection again and I am at the hospital for my scan results on Wednesday. Still having to go to physio' every week and my breathing is still bad so my physio' is writing back to the chest doctor for more advice.

Mum set up the just giving web page for me so can I ask if you will very kindly visit and consider making an on line donation, this is very safe , Thank You.

12th September 2007: Scan and nerve conduction results
I went to see Dr Huson (my NF doctor) today for the results of my nerve conduction test and pelvic scan results. Unfortunately the nerve conduction test showed that I do have damage to the major nerves that work my legs and feet, which is why I have developed the foot drop in both feet and pelvic scan showed that I have tumours all round and on the major nerves in the pelvis, which is why it’s been decided that I should have a PET scan done. Dr Huson said if any of the tumours show up as a grade 3 then it may mean a trip to a hospital London, which I don’t really mind if it helps doctors to understand NF a little more.

But it’s not all bad news as when Dr Huson looked at my feet they had not got any worse so my physio’ is working well.

Dr Huson did talk about contacting a doctor in the USA to ask if I would be suitable for the drug trial, but I have got two years left at college so we decided we would leave that idea for the time being and see how things go with the PET scan and my foot drop first.

What is a PET scan?
PET stands for Positron Emission Tomography. I was meant to have this scan a few months back but it was cancelled. But now due to the pelvic scan I had it’s now been decided I should have the PET scan.

The results
It will take about two weeks for my test results to come through. The scan will be examined by a specialist in radiology or nuclear medicine and a report typed up. The report will then go to my specialist (Dr Huson), who will contact me if need be.

26th September 2007
Today was a long day at the hospital as first I had to attend Hope Hospital to pick up my foot brace’s that Mike Gilligan made for me (see pic’ below). Mike is an Orthotist and if you would like to know more about Mikes products please click the picture of Mike and Me below.

For all those who are new to my story and have not managed to read my full diary, Mike and I go back a long way as Mike was the very first person to make my back brace when I was only 9 years old.

This is Mike

My foot Braces

After we had finished with Mike it was back in the ambulance for a trip down to my local hospital for my physio’. Mum and I left home at 8am and did not get back home until after 5pm so we were both really tired.

I started being sick again and when I saw my doctor yesterday he said that if it continues I will have to have the camera into my tummy again but in the mean time to double up on my tablets. Other than that I am doing well and just waiting on the date for my P.E.T scan at the moment.

30th October 2007
A lot has been happening recently, the good news being the recent tumours that I had removed were not nasty, which was great news. The doctor looked at my foot as I had been getting a lot of pain in it and she said that I have a tumour that is deep into the bone and that it would be a good idea to have it removed, which I agreed with. But not before Christmas as I hope to take my driving test in December, the doctor said that would be ok as long it did not get any worse. She also looked at my tummy as I has been getting a lot of pain around the kidney area so she decided to arrange for me to have an ultrasound scan of my kidney’s to make sure I don’t have an tumours on my kidney’s.

I have been having lots of falls recently, I fell down the stairs at home, fell at college a few times and my ankles have been swelling so I have got to see about having a full leg brace.

I have my P.E.T Scan next Friday and will let you know more after I have had the scan.

What a PET scan is
P.E.T stands for Positron Emission Tomography. This is a fairly new type of scan. It shows how your body tissues are working, as well as what they look like. The test involves having an injection of a small amount of radioactive material, using the signals from this radioactive injection a scanning machine can build up a picture of the part of the body. PET scans can be used to look for abnormalities in the tissues.

PET scans are not a routine test and are usually only used for the small number of patients for whom other types of scans cannot give all the information their doctors need.

10th November 2007
Just to let you know my PET scan went ok, I had to lie in this quiet room for 45+ min's on my own while the radiation that they injected went round my body and then they took me in the scan room, the scan took over an hour as they scanned from head to toe. They would not let my mum come in with me, which I was not too cool about as I have never been in the scan room on my own before mum's always, always come's in with me, I also forgot to take my teddy waaaaaa, I pleaded with them to let my mum come in this other room while they did needle and they agreed to her doing that. I have got two to three weeks wait now before the results are back. If anyone is having a PET scan and would like to know more about the scan please e-mail me or sign my guest book and I will do my best to answer your question's.

1st December 2007
My doctor is having a meeting next Wednesday over the results of my PET and will phone my mum on Thursday with the results and tell mum what happens next, I will let you know.

My mum received a call from my GP today asking her to bring me to see her this afternoon, when we got there my doctor called me in and said she had received a letter from my physio' over my knee problem. My physio' wants me to have an MRI scan of my knee due to the amount of falls I have been having, I now have to wear a brace on both knees due to a problem with the ligaments being damaged. My doctor is sending a letter to the orthopaedic surgeon to inform him of the new problem.

14th December 2007
I am sorry I have not let you know the results sooner. But my gran was taken into hospital with a chest infection so it’s been a little worrying here, I am pleased to say my garn is due home some time today after being in hospital two weeks.

The results of PET scan

Mum received an e mail from my NF doctor, which read:

Good news-there is nothing obvious to worry about. I am about to go to a meeting but will ring next week to go over things and catch up.
Sincerely
Sue H

Today I had to have an ultrasound scan on my tummy/side due to the pain that I have been getting, the good news being I don’t have any tumours on my kidney but they found a cluster of new tumours in my tummy in between two major nerves that cross over each other, they are not too big at 1.5 cm in size but with NF tumours it does not matter how big they are they can give you some real bad pain. My doctor will now be informed of the results and I should be told some time in the New Year what they decide to do about them.

I have got to see a orthopaedic doctor in January over my knee problem so will let you know more about that when I have seen the doctor.

4th January 2008
Mum received a call from my Nf doctor on the evening of the 28th December '07 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 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.

Tuesday 22nd January 2008
I saw my pediatric orthopedic consultant today who looked at both 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 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 stocking first. We also spoke about me being transferred over to the adult services at my local hospital, which will happen sometime this year.

Well, it’s only weeks off my Ball now 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 008
I was at the hospital on Wednesday for 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 so 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 hydro'

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. I will let you know when I get the results.

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 in hospital on the 9th April for an operation on my foot, I have got a tumour that is deep into foot and that is giving some pain when I try to put shows on so 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 about fund raising I have got some great news to tell you all next week. But, "sorry", you will have to call back next week for that 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 also 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. J Thorn said he cannot do anything to help me at the moment, but if the PET scan shows that the tumours on my 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 his 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 the stitches removed from my chin, I think the nurse said I had four 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 a six month gap so he can compare the two scan 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, he said that the results of the scan showed that I had lot 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 said I think it was like that before anyway. I am due to see my spinal doctor in 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; 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 of the 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 the 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 my 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. A small 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 benefit 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 seem 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 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. S Huson to tell me that the P.E.T Scan showed that that the internal tumours are not growing too 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 my 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 and in my shoulder and the treatment is not really helping now. I have got to go back and 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 of my spine this morning that Mr. Oxborrow wanted me to have, I also had to have my foot splints 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 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. Sue 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 as 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 every time they scan parts of my body they find even more tumours. Dr. Huson also mentioned 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..). I am not sure when my visit to London will be yet as Dr. Huson is away for four weeks, but I think it will be before Christmas. 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
I will let you know when I have anymore news.

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 thought 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.

27^th 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.
And 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 treatment ok. 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 doctor but looking at the scan everything looked ok, which was great news. I see my doctor next week and she will tell me more than.

Will up date more soon
In the meantime please don’t forget if I can help you in anyway please let me know, I can't help answer any serious medical questions, but I can help you with anything that may be worrying you, or help you understand what will be happening to you. This website is not meant to be technical or full of medical jargon. I’m here as a support for you, to be a friend, someone you can sound-off at when you're feeling down. If you need any advice, or just want somewhere you can meet fellow sufferers then this is the place to be!

While people of any age will struggle to adjust to a life with pain it can be particularly hard for teenagers and those in their early 20s. At a time when the world should be opening up, offering exciting things, it can feel as if a door has slammed shut instead. Don't dwell on what you can't do, but concentrate on what you can, explore new interests you will be amazed how much it helps.

Anyone can tell you it won’t hurt tomorrow. But I’m here to listen while it hurts today.

I will keep checking my forum and e-mail while I'm in hospital so don't worry I will get back to you.

Thank you to all my doctors, nurses, family and friends for getting me through some of my difficult times.

Take care

Love Kirsty x x

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