It was Early December 1999 I was fit and well until I woke one morning with the worse headache ever. I couldn't see properly and felt so sick to my stomach. I did not think much of it at first but after a few days of the same symptoms I decided to go and see my GP. My GP looked me over and gave me some painkillers to try and help me because she thought it might of been a virus. A few more days passed by and still the problem remained so back to my GP I went again. She checked me over but this time found something definitely wrong she noticed that my optic discs were severally swollen and sent me straight to the hospital.

It was very late on in the evening when I got to the hospital due to letters and phone calls having to be made by my GP. That first night in the hospital was the beginning of my nightmare journey I remember not sleeping to well because of all the worry about what could be wrong with me.

Early next morning I was taken for a CT scan and being my first ever one I was not too happy but knew it would all be ok. This scan would answer my questions and yes it sure did. I was told that the scan had picked up a malformation on my brain known to us all as an AVM on the left side. I remember my fiancée and mother being there when he showed me the scan I freaked out and can still see the expressions on both my fiancée and mothers faces. The Dr had told me that he needed someone else to take a look at the scan someone who was in the know and just happened to be the top Neuro.Whilst in the hospital things didn't go well for me I had episodes where I didn't know who people were and even who or where I was.This was a very scary time for me and my family.

I was sent home about 2 weeks later and waited for someone to contact me they did and I had to go for more scans I had another CT scan, MRI scan and a Angiogram. My Neuro said that this AVM was not just the problem and I would have to have a Lumber Puncture.The Lumber Puncture Finally gave us the answers. As well as a AVM I had another problem known as Benign Intracranial Hypertension which is Pressure on the brain caused by the body producing to much Cerebral Spinal Fluid.

This illness had to be dealt with first because the pressure was pushing on my optic nerves and could permanently damage my eyesight so after lots of Lumber Punctures every three weeks the decision was made for me to have a lumber shunt inserted. To give you a idea of time span the 1st one was inserted in Oct 00 and to this day I am on my 5th one due to it snapping and coming loose.

Whilst in hospital in Feb 01 I had my 1st big seizure and was unconscious for 45 minutes and both my B/P and Pulse went sky high. I have no recollection about what was happening to me only what I have been told by the nurses and doctors. I was put on some anti seizure meds and they calmed down to some extent.

Now in Feb/March 02 I was admitted again back into hospital because of the sever pain I was in. I was told that the BIH was now under control so they had to look at other possibilities.They played around with my drug prescription and took me off my anti seizure meds because they thought that because they were opiate based that may of been making the headache worse. And yes you guessed it the seizures came back the headache stayed the same and now its all talk about getting the AVM removed.They told me all the facts about what could happen if the AVM ruptures and also what treatment is available for me.I am very scared and anxious about what's going to happen but know I will be in the best of hands.

My AVM is 4cm Diameter and is not on the surface like most AVM's but is layered deep into my brain its on the part of my brain that operates my right side more my right leg and if it was to rupture and I survive it would most certainly loose me the use of the leg. Surgery is not an option because of its size and location and because of it being deep inside the brain. The option they have offered to me is Embolization's which carry's a 5% risk every time they do them.

They want to do Embo's first to section it into smaller parts and will do this by putting in a quick setting glue so that they can then do radiotherapy to get rid of it once and for all. They told me the risk's and prepared me if things did go wrong like the glue going somewhere it shouldn't. He has sent me home to think over every thing he has told me and to be honest I cannot tell you how I am feeling. Everything is a blur at the moment but you can be sure I will make the right decision and at the moment I am 70% sure of what I am going to do.

Update: 30 Oct 2002
My decision has been made about the AVM treatment. I WILL BE HAVING IT DONE.

It was one of the hardest things I have ever had to decide but I don't want this time bomb to rule my life and even possibly take it away. I would be crazy not to try and for that reason I got to go for it. I want to be on the other side of the fence and be classed as an AVM survivor and with this treatment I have every chance.

This is not going to be easy and I am still scared out of my mind but I have to give this a go

Update: 16 Nov 2002

Well this is the update I knew I was going to write sometime soon. My health continues to cause me problems and the last few days hasn't been an easy ride both physically and mentally. My headaches continue to be as nasty as ever and my mental state is somewhat down. I know I have to think positive and believe me I am trying but that fear factor still keeps kicking in.

Today I had the letter I was waiting for. I have been given a admission date to the hospital for my 1st Embolization. I will be admitted into hospital on Tuesday 17th December and the treatment is set for the Wednesday 18th.I will be going down to the operating theatre at 9am on the 18th. I am also on a cancellation list so could be sooner depending if a space comes up but at the moment I am looking to the 17th.

I am still scared out of my mind and am trying everything in my power to take my mind of things but that's easier said than done [G].

Update: 18 Dec 2002

Well I didn't expect to be sending an update at this time as you know I am suppose to be in hospital today, 17th December, for my first embolization tomorrow 18th. Bags were packed and was ready to go and It's been cancelled not going to happen now till the new year.

I am very upset and emotional at the moment and just keep thinking why always me (What more can I say) I will leave this update short and will write again soon. Just thought I would let you know the situation.

Update: 20 Dec 2002

Hello thought I would give you this news as soon as I could. Today (December 19) I had another letter and I have another date set 23rd January please keep your fingers crossed that this time I get in for my Embolization.

The cancellation really knocked me down. I am just going to get straight back up and start to re climb that hill to the very top.

Update: 21 Jan 2003

I thought I would just add a little update. It's now only one day till I go into hospital for my first embolization :-( 23rd Jan. I want to thank everyone who is sending me well wishes they really do help as the fear is now kicking in and I just want to get it over with now so that the fear of the unknown is no longer unknown. I will be back with the family as soon as I am fit enough. Every one take care.

Update: 28 Jan 2003 (by Sandy)

I am sending this to you to update for Rachel, I wasn't sure how to do it for someone other than myself. I am in constant contact with her family over in England. She did go into the hospital as scheduled on January 23, 2003. They did the necessary preparations for her emobilization on the 24th. She went in, as scheduled and they proceeded with the emobilization. From what I understand, they did 3 shots of glue, 2 were perfect and 1 kind of escaped and went into a vessel it wasn't supposed to and caused a mini stroke. It affected her right leg, but she is having psysiotherapy and is moving her toes.

She had another scare on Friday or Saturday when her blood pressure and oxygen levels plumeted. But after a CT and an angio they said she was doing ok, it was not a bleed, which they had first suspected.

Thank you so much.

Update: 6 Feb 2003

I finally got home yesterday from hospital, after my first embolization to rid me of my AVM. Its so nice to be back in familiar surroundings and be able to speak to you all again through my computer.

My AVM was shrunk by 25% after the first embolization but the bad news was I had a mini stroke and have lost the use of my right leg, at the moment I am using a walking stick to help me get around as best I can, but I am working on that with all my strength and will walk again unaided just like I did before. When my surgeon told me that I would never walk again it was the hardest thing to accept and I just didn't want to accept it, all I kept thinking about was my nursing career and how much I really need my legs, and would some how get the use back and I am pleased to tell you that I am doing better and my leg is working some what now.

I have to concentrate really hard now on what I am doing and the smallest of walking tasks are such an ordeal but with my determination and the help from intense neuro physiotherapy I will try and make my leg as strong as I can.

The headaches are somewhat worse at the moment but have been told that's normal after my procedure and the selection of pain medication I am on at the moment help me get through the day. The next embolization is set for about 6 weeks time and will let you all know when I have confirmation of that date.

To Be Continued>>>>

Dear Rachel,

You have a family here that will pray for you and be with you always.

James

Rachel,

James is right you do have a family here who will always pray and love you for you! You are a stature of strength and courage! You will help so many others just by sharing your story a tear of joy and saddness will fall because you cared enought o share and make a difference another person with and AVM may be offered a hug or word of encouragement or understanding and many will ask questions a life will alwayd be touched by your story of touching human spirit and determination! I love you Rachel so many do thanks so much for sharing!
                                                            Love and prayers,
                                                              Chrissy

Hi Every one first I want to say sorry for being away from the forum for so long I have missed this board and I am now trying to get back into things and thought that I should start with my to be continued story if you all dont mind>>

Update: 7 Mar 2003

I went back to the hospital today Thursday 6th March to see my neuro surgeon to check on my progress and talk me through the next embolization and to see if I am ok with everything.

My Surgeon is pleased with my progress after my stroke and I am really working on it with all my might. I have ditched my walking stick around the house now and my leg does a good job following what the left one does. I cannot lead with that leg it just doesn't happen and it could take up to six months to come back. I just have to keep working as best I can.

As for the headaches they continue to be as nasty as ever. My pain medication gives me a little relief for so long which is something to be thankful for at least.

During my meeting today with my surgeon the future plans were discussed and my next embolization is set for early/mid April - GULP. He also said that this embolization will be one of three which I yet to have - DOUBLE GULP. His words were "little and more is better than big and less" with that statement I nodded like you do and trusted his advice.

The first embolization was hard but now because of what I have experienced I am really frightened about this whole ordeal.

Update: 19 Mar 2003

I said I would update my story when I received the next date for my 2nd embolization. Well today I got that letter and the date is set for the 1st May being admitted and the 2nd May for the actual procedure. Again like before there is a chance I get cancelled due to emergency cases taking priority. I will be on the same ward as I was before so know the care I receive will be the best. Even though I have been through this before it still doesn't make it any better I am scared and I'm not afraid to admit it.

As for my health right now I continue to have nasty headaches but am pleased to say my walking is coming on in leaps and bounds, still cant lead with it. I just have to work on it every day and with time hopefully I will gain most if not all of the mobility back.

Update: 11 May 2003

Hi everyone. Boy have I missed the computer and my family over this last week. I got out of hospital early last night(Thurs - May 8) just glad to be home in my own surroundings as for the treatment I had the embolization on Friday 2nd May went down at about 9am and was under for about six hours got back on the ward for about 6pm.

The embolization went quite well but there was a major problem but with swift action from the team they got it all under control. What happened was the catheter wire decided to go where it wasn't suppose to and the tip came away and was travelling down an artery it wasn't suppose to travel so what they did was grabbed it and pulled it back but it got stuck to the avm so they had to cut it loose and fitted me with a stent in the artery so no problems will occur from it,no real harm done and its just one of those risks that can happen.

My neuro got a good bite of the avm and didn't want to push his luck so stopped at a good stage and will tackle the next in two more Embolizations.

The pain after this one was really really bad Friday night and Saturday on the ward was shear hell I couldn't stand the pain and just wasn't with it at all. The pain was centralised to the AVM area and if I had a marker pen I could of drawn accurately around the area where the avm and the pain is. The Dr was called and I was put on IV pain killers through a drip. It was set at maximum release but the pain still remained and in the end they had to change the pain killer for a stronger one. This one takes effect somewhat but again the pain still remains with me. I will be glad when it goes away some.

While in the hospital after this Embolization I suffered seizures 3 times + a day. I was rushed into ct to make sure all was well and thank the Lord it was.

The Dr's on call to the ward were called to me many times because during the seizures I dropped my coma scale from a 15 to about a 6 which is a bad drop and also I developed tachycardia and my blood pressure was all over the place. They decided that it was time I had to go onto Anti Seizure medication and am now on a drug called Topamax.

I have also been put on blood thinner medication because now at this stage I am at a more higher risk of blood clots forming and well we all know the outcome of those don't we!!!

My Anti Depressant dose has been upped also as I have been feeling the pressures, stresses and worries more over this last 3 weeks or so. If these meds help to keep me stable so be it. I am just glad that I am able to get help for my avm and through this bad experience a new better life will become. Now I wait for a appointment to go and see my neuro and set the date for Embolization number three. I will keep you all updated on this.

Update: 5 Jun 2003

I wanted to update my story as I have some news, Since the second embolisation the pain I was left with has never gone away,and the past few weeks have been a real nightmare for me the pain just never seems to leave me.Some good news the seizure meds are doing there job and that is undercontrol.My walking is doing ok still have the odd slip up where my brain and leg don't talk to each other and I stumble,I am still having problems using it as the lead leg it just doesn't seem to happen again only time will tell.

Now to the reason I am writing this update,Today I received a letter and have been expecting a outpatient appointment to go and be checked out and talk through embolisation number 3. Well it wasn't an outpatient appointment at all,its a date set for my next Embolisation and if that wasn't a shock and unexpected enough!!!!!!! I go into hospital on my BIRTHDAY the 26th June,three weeks from today.

This has surprised me and has come as a shock as I was expecting the outpatient appointment first, and to go into hospital on my birthday for the second year in a row well yeah I am in tears at the moment and scared half to death. I know I have to get another one over and done with but GULP

Update: 04 Jul 2003

In this update I should be telling you all how well Embolzation number three went!!! but I don't have that news to give you, all I have is hurt and disappointment.

I woke on the 26th with my stomach doing turns and my heart racing,the call was made to the ward to check my bed was available and again I couldn't get a straight answer as the doctors hadn't done all there rounds yet to know which beds would be free. I waited a very long 3 hours for the phone to ring to get my answer "was I going in or not"? My prayers had been answered there was a bed and I was ready to get this next step over and done with even though I was absolutely terrified.

My bag was packed so me and my fiancé made our way to the hospital and I got settled into my bed. The doctors came and asked all their questions and did all their tests and talked me through what was to happen in the morning. As it was my birthday John stopped with me a few hours longer and at about 9.45 at night it was time for him to leave and for me to try and get some sleep, I got emotional at this point and the tears began to flow the fear was starting to effect me now I knew I was going to be alone, I let John go and that is when I got the worst bit of news it was like they were waiting for him to leave before they told me "sorry Rachel your procedure is cancelled you will have to go home now"at that point I shot out of the ward in floods of tears and caught up to John and asked him to come back to the ward with me.

I couldn't believe what I was hearing this just wasn't right how can they treat someone this way!!!!! I got back to the ward and found the doctor who had just told me this news and asked him to explain more, someone needed my bed (I get kicked out) he said he was sorry and walked away from me and hid his face in a pile of papers as I broke down. Don't get me wrong someone was probably in trouble and yes me giving that bed up may of saved their life but it still doesn't make my disappointment any better and what would of happened if I or someone else became an emergency that night would they tell us to hold on because there are no beds for us!!!!! I left that ward totally distraught and crying my eyes out what a nice birthday I was having!!!!!!NOT

I never want to ever experience something like this ever again because it has totally turned me upside down,this last week I have not wanted to talk to anyone because I don't want to keep breaking down every time I talk or see someone so I have kept myself to myself and am trying to deal with this huge disappointment

Update: 17 Sep 2003

Well this may be the hardest update I have yet written,and one which (I hope) may help me to come to terms with a few things that are playing on my mind. I always wanted to be honest and open about my AVM experience

It was the 21st August I was to go into hospital on this day for my 3rd of 4 Embolisations I awoke on the morning my heart racing and the fear running through my head "did I have a bed or not"? The normal routine was performed we called the ward but this time things were different they knew about me, I guess I was a priority after my cancellation in June. I still had to wait for that phone call back to tell me that the bed was available and boy did time go slow they finally called me around lunch time and told me to make my way in. I arrived onto the ward and had to sit in the relatives room as my bed wasn't quite ready for me, while in there my neuro surgeon came to see me to talk me through the following days plans and to get me to sign the consent form for the embolisation.

Friday Morning came and boy was I scared, I was collected at about 8.15am and taken down, there I was passed over to the surgeons team and everyone got to work a very nice man gave me something to calm me and boy was I floating around that room by that time I had no care in the world,then I was put to sleep. The Embolisation took about 6-7 hours and all in all went well and some more of the AVM got shut down.

What happened next is quite a blur to me, I do remember some, more than I want to really so what I write here is what I have been told by doctors and nurses and family. I came round from the general feeling like I had just been hit around the head with a metal bar boy did I have pain in my head all situated where the avm was, it was one heck of a headache. It was there that I realized I couldn't move my right leg and remember thinking "ow man please no not again", the nurse that had me in her care kept asking me all the questions "where are you"? "what year is it"? I was doing quite well until...

The nightmare began I started having seizure after seizure they lasted about 3-5 mins at first and none of the staff could get any responses out of me I was totally out of it, from what I am told I was then taken into a room within recovery where doctors and nurses worked on me to try and stable me but still the seizures kept happening each one getting a little more violent and lasting longer. My poor fiancé John sat at my empty bed back on the ward expecting me back,and still I didn't return from what I am told he was brought down to recovery with a nurse just so he could see me but that never happened, he was taken away because a major problem occurred. This is the bit I'm really having a hard time dealing with and turning it into words I hope will allow me to cope a little better, I had a massive seizure which stopped my heart it's really weird, I remember hearing things "she's arrested" and hearing that awful arrest alarm then everything went dark it's really upsetting for me to talk about but I feel I must to try and let it go. You hear story's of people's experiences during these awful times and well I am just thankful that they got me back and I can sit here and continue to write my story.

I had no idea what was happening around me at this point so again this is from what I have been told by the doctors and nursing staff, I was put back to sleep and kept ventilated and a CT scan was performed because they thought that I might of been haemorrhaging, nothing bad showed up on the scan to be of major concern but it was decided that I would have to spend some time on the Surgical High Dependency Unit to be closely monitored. My Surgeon went to the ward to explain everything to John and once I was settled onto SHDU he would be aloud to come and see me for a few minutes. It was decided that they would take me off the ventilator and put me onto oxygen to see how I could manage on my own, John came in to see me but I cannot remember him being there. I had been pumped with drugs to try and control the seizures and help this awful pain in my head,then again back came my nightmare the seizures started up again one after another. From what I am told my whole right side would shake sometimes really violently and my eyes would roll into the back of my head. Something else which I really find upsetting is during these seizures on SHDU again my breathing just gave out and I had to be bagged to assist me, I couldn't do it on my own.

After about 15 seizures within about an hour a full medic team was with me and yet again I had to be put to sleep and back onto the ventilator for another CT scan, again no bleed was found but I would have to stay ventilated and ended up in intensive care. I cannot remember much about intensive care apart from this one weird experience where they were bringing me around and getting me off the ventilator, my whole body was paralysed I couldn't move a thing, not even make a noise. The tubes in my throat were bothering me and I wanted them out of there but I couldn't move to do anything about it then I must of gone back to sleep for awhile. I awoke again but this time I could move and the first thing I went for was the tubes, I was panicking and didn't like them being there. I was retching so the nurse who was assigned to me pulled them out I was put onto oxygen. It's a blur now about what happened from there I was monitored like a hawk and finally got moved back up to the ward I started on Sunday afternoon. That in it's self was a big step and I was so glad to see familiar faces.

I lay in my bed and just felt so numb more than anything I couldn't get to grips with what had happened over the last few days, I was just so thankful and grateful to all of those that worked on me that allowed me to still be here. The next few day's were hard the seizures still kept coming and the pain was not getting any easier. I was on complete bed rest for most of the week,the doctors were trying to get my seizures controlled with Phenytoin and Topiramate anti seizure drugs. I was still having 2-4 seizures a day even on the drugs and each one took every ounce of energy out of me and made the pain in my head three times as bad. The movement in my leg was still very weak, that really hurt me after the effort I had made to get some movement back from my stroke back in January. I had done it once so I was going to do it again,walking was a priority and something I was going to work on with all my might.

Friday 29th August it was decided that I was to have a MRI scan to have a more in depth look at what was going on because of the amount of seizures I was having and the pain I was experiencing. I was taken down with a nurse escort and had the MRI done, I was hooked up to all kind's of monitors and was a little concerned about if I had a seizure while in the tunnel. I did get a little panic stricken but remembered Sandy (Mum) and what I had told her, so I gripped that buzzer and Sandy was with me every step of the way, we got through it together. The result came back and it shows that there is a large amount of swelling around the AVM they are not really concerned but the bits of puzzle fit together now and this is the reason for so much pain and the nasty seizure episodes plus the loss of weakness in my leg. I was seen by the physioterrorists Grin and they gave me a walking frame to try and get round on, when I was feeling up to it I tried with all my might to get around. It was really hard work and my legs shook but I had to try and keep trying I have my nursing career so I need my legs.

I got transferred from the Neuro Surgical ward to the Neuro Medical ward which was just next door to be monitored as the seizures were still a concern, I went a couple of days without any seizures at all and thought that things were looking up and I could possibly go home, the seizures came back and I was told that could be expected but not to be too disappointed. They would sort me out but I wasn't allowed home till they were happy that I was under control with the drugs and if the seizures did happen nothing as bad as I have experienced over the last few weeks would happen (that still cannot be guaranteed).

I had a phone call today (Tuesday 16th) from the hospital the doctor promised to call me and give me any information she knew about what was happening regarding the next steps, as it lies at the moment my Neuro Surgeon doesn't want to put me through another embolisation if Sheffield will take me with the AVM the size it is for the gamma knife, there are no promises and I must be prepared to go through another embolisation if necessary. The doctor on the phone told me that my surgeon was in talks with Sheffield and would be in touch as soon as that decision was made, I told her I needed to know what ever so I could prepare myself and she understood my feelings and reassured me that they wouldn't keep me hanging on. Right now I am just so glad to be home 3 weeks stay in hospital wasn't what I expected and the experience is one I would like to forget but know it will always stay with me, dealing with the experience I am finding really hardthroughout. The pain really is nasty in my head and I keep having these weird dizzy attacks which knock me for six and make me loose focus on everything so far so good as seizures go I haven't noted any in the daytime but am not sure about in my sleep I have woke in the morning a couple of times feeling like I do after a episode, I really couldn't do this without you guys and my family and I am so thankful that my time on this earth is not yet over, you guys keep telling me I am a fighter well I really believe your words now this isn't taking me without a fight.

Look through the times of uncertainty, find there are always wings of hope, brighter tomorrows and friends to see you through.

Thank you for sharing your continuing inspiration that touches us all tenderly and deeply You truly are a fighter.......I am so glad and blessed to be able to call you my friend....


Nothing but Love,
Chrissy

i have been reading up on your story and have to say that you are very brave, i suppose none of us really know what you are going through but i would like to give you my support and will pray for you.
god bless, love parvez