What a crazy 16 months it has been......
From returning to work, to holidays, to many weddings and parties and then in December being discharged from Neurology, but we saw our 12 week old baby on our first scan.......truly amazing!
If you had asked me this time last year when we would be thinking of having children, I probably would have told you that I could only dream of that at the moment, due to the way I was still feeling. I had always dreamed of having our own little man, that was fit and healthy, with thick black hair and was just as cute as his dad. Here I am now, expecting our first baby (and it's a boy!) in just 11 days and I couldn't be better!
I have had an uneventful pregnancy, which has completely flown by! I was expecting to have headaches in the first and second trimester, due to these being common in these stages of pregnancy, but with having Chiari, I thought I would definitely suffer from these - WRONG! I didn't suffer at all! Fantastic! I have suffered with headaches more recently, but I think that is due to the change in air pressure at the moment - this is always the case! It may be because I am slightly anxious about having a C-Section in 11 days.........who knows!
Either way, I am feeling great and even though I know I may never be headache free, I can cope with the ones that I am having, none of which are the severity they were pre op - So that has to be a good thing!!
Due to my Chiari, I have opted for a C-Section over a natural birth. Reason being, I can still get headaches on straining, so the thought of having no option but to push during labour, scares me into wondering how I would cope with a natural labour and how bad my head would be during and after labour. I have images of my head completely exploding with the pressure (although I have been reassured it wouldn't!), it scares me to think that I could be that ill again with headaches/migraines during the first days of our son's life. How would I care for the little mite with my head feeling like it's exploding 24/7......... I can't let that happen.
So I will be having a spinal anaesthesia, which has been cleared with the neurologists and I am being considered as a normal C-Section, which is great news! I have been warned that due to the needle penetrating the CSF area, there will be a slight leak of CSF in to my system, which can on occasion, cause spinal headaches. With having had lumbar punctures before, I am expecting these headaches, but have been reassured that they can prescribe treatment for this, that will not effect the baby at all, even when breast feeding, so this I can cope with. They would be nothing like the headaches I get on straining, so this makes me ok with it all!
My main concern with having a child, was that our baby could have Chiari also. I would blame myself if this were the case and having to see our child go through Chiari would hit me quite hard. HOWEVER, I have been assured by my neurologists that this is not hereditary in any way. Some studies in the US apparently have shown that this is familiar, but not 100%. Therefore, we have been reassured that our baby will be fit and healthy and from his scans, all appears normal, so happy days....
So, we have another 11 days before we can introduce our little angel to this world and life could not be better....truly, dreams can come true xxxxxxxxx
Friday, 22 May 2009
Tuesday, 29 April 2008
3 and a half months on!
You may think that I have been pretty slack with updating my Blog.......well you're half right!
Things haven't run as smooth as any of us had hoped, so whenever I had set some time aside to grab the laptop to give you all an update - sods law, I would get ill!
Where to start......??? The last time I updated this BLOG I was in the early, early stages of recovery. I had to keep my 45% angel and was still experiencing the lack of appetite and nausea from the op. Luckily now, I am well past this stage, although a recent relapse has brought on the nausea, however am glad to say that this has now passed again!
Approx 6 weeks ago, I revisited my consultant for another follow-up. I sat in the same waiting room I had all those months ago wondering what they hell was wrong with me and what my GP had meant when my MRI showed "signs inkeeping with Chiari Malformation". The room was packed, full of people of all ages, some showing the anxiousness that I must have that first appointment back last year, whilst others were on first names terms with the receptionist.
"These people are clearly regulars", I thought to myself - at the same time, wondering whether I would now become one of these "regulars"....??
After about 10 minutes of waiting, I started to feel really anxious again. What was I doing?? I had been here before, I knew my consultant, I knew what was wrong with me, so why was I so worried...? Pete picked up on the fact that I was worried and just held my hand and in the true romantic way, said "Come on moron, stop worrying!"
The reason I had started to get nervous was because I had been sat there long enough for my attention to be taken from the gorgeous channel shoes I had just spotted in the copy of Vogue I was reading, and wondering whether I could justify to myself that I needed them - to the fact of I was still unwell some weeks post op and was still experiencing some severe symptoms. Why was this, they told me that this op would stop all this - so what was wrong, something must be wrong as they are still here - WHY ARE THEY STILL HERE!!!????
Eventually we were called in to the room and instantly my consultant smiled and we both felt safe again -(Now this may sound silly, but after you have been through such an ordeal, such a major operation - probably any kind of op), basically putting your life in his hands, to see the man that got you through this safely, promising that I would wake up from the operation - YES, stupid me did ask this question) it is always so calming to see him.
Firstly he showed me my previous MRI (PRE-op) to show my extent of herniation....this alone was quite amazing. He explained and showed me the part of skull that they had removed to make room for the brain and fluid flow. He then asked how I had been and how I was feeling. I explained all the symptoms that I was still experiencing - the severe headaches, balance problems, visual blurriness and floaters, nausea etc. This is the bit I had been scared to hear - was this still normal or is there the risk of them having to operate again pretty soon to make the space bigger?(I had been told that if the op wasn't a complete success, then they would have to re-open the wound and re-operate) - I Stopped breathing.....his response was that these were normal and these will now just fade away with time. Breathe again!
OK, so these were normal, the time differs in all people and they would just fade away....I can deal with that! He then said that I would need a repeat MRI in Aug/Sept time so they can check the new spacing, check that the CS fluid is flowing as it should and that there have been no changes! He also confirmed that there were definitely no Syrinx - which to me, was as good to me as being told - Jaffa cakes only have 1g of fat! Result, WOOHOO!!!
We both thanked the consultant again and again and finally left the stuffy, but familiar waiting room. Next I had to just stop off for blood to be taken 4 months before my MRI - as if having to go through the horrible, scary MRI again wasn't bad enough, tests have now shown that MRI scans can actually damage your kidneys - Happy days!! I mean come on!!
When walking back to the car, I began to cry. I had been so worried about being told that my symptoms were abnormal post op, that I had worked myself up so much, I was nearly sick! I could see the relief in Pete's eyes, which meant more to me than being told that everything was normal. He has really been through it, as have my whole family and I hate that it is me that has put them through all this pain and anguish.
So, here we are on the 29th April and I am still having severe symptoms. I was due to return to work last Monday 21st, however on the Thursday prior to this I had visited my GP to sign me back in to work and to ask for some stronger painkillers, so that if I did develop a headache whilst at work, I could at least try and suppress it when I was there. The GP prescribed a painkiller that I began to take that Thursday night as I had a terrible head. From that Friday morning until last Thursday I had relapsed to the way I had been 6 or 7 weeks ago. The tablets clearly did not agree with me and made me absolutely terrible again. I returned to my GP on the Tuesday (my actual GP) and he told me to throw them in the bin, explained that I can't return to anything until the symptoms had resolved and signed me off for another 3 weeks. ABSOLUTELY GUTTED!
I feel totally deflated at the moment, I was doing so so well and was so looking forward to starting to get my life back, to get some sort of normality back and see my friends and colleagues that I have missed dearly. Instead I find myself stuck at home still, trying desperately to regain the normalness that I felt 2-3 weeks ago. All I am concentrating on now is trying to get better, so I can try and regain this normality back, as I was meant to on the 21st!
I would like to say a huge, huge thank you to all my friends, family and colleagues that have shown no end of support through this time. It's true what people say "You realise who your friends are at times like these...." - I have been lucky and I didn't realise I had so many beautiful people that care for me - I will never forget the love and support I have received!
Also I would like to say a thank you to my long lost friend Laura who recently found me on Facebook of all places! We haven't been in touch for 10 years and low and behold - she too is a chiarian. Our chats have helped so much over the past few weeks, even though I can talk to Pete or my Mum about how I am feeling, it is so refreshing to be able to talk to someone who "understands" how I am feeling, someone who knows the symptoms and knows what a depressing and unforgiving illness this can be. The one thing that Lau has said that makes the most sense is...
"....even though on the outside we look fine, on the inside we are not".
I feel that the last 3 and a half months have changed me slightly. I feel, even though it's hard to believe after reading all this, I feel like a new person, who has so much to look forward to. I am desperate to get back in the gym (Pete had to drag me before my diagnosis), I am definitely going to get back in to my hockey and have already arranged a team to join in September (I have talked about this for years but never actually done anything about it), I am going to call friends when I say I will and ensure that I reply to every message/letter that is sent to me, and above all, I am going to spend more time with my family, especially my beautiful niece and nephew who make me laugh so much, it hurts!
I don't want to come across as some weirdo who has re-evaluated their life for no reason, but it just shows that none of us know what is around the corner. I have always been one who had her life mapped out - until now! So, all I am trying to say really, is that I am now going to appreciate everyday - rather than wishing it was a Friday on my way in to work on a Monday morning, or stressing over whether we should go out for a drink on a work night...and most of all, I will never take things for granted again........well, apart from my husbands lack of ability to say no when I want to go shopping ;-)
xxxxxxx
If anyone reading this would like to have a chat, if you are a chiarian with a recent diagnosis, or if you have undergone the same as I have, please feel free to add any comments to this BLOG or get in touch with me via this BLOG or Facebook Group "Me and Chiari Malformation" x
Things haven't run as smooth as any of us had hoped, so whenever I had set some time aside to grab the laptop to give you all an update - sods law, I would get ill!
Where to start......??? The last time I updated this BLOG I was in the early, early stages of recovery. I had to keep my 45% angel and was still experiencing the lack of appetite and nausea from the op. Luckily now, I am well past this stage, although a recent relapse has brought on the nausea, however am glad to say that this has now passed again!
Approx 6 weeks ago, I revisited my consultant for another follow-up. I sat in the same waiting room I had all those months ago wondering what they hell was wrong with me and what my GP had meant when my MRI showed "signs inkeeping with Chiari Malformation". The room was packed, full of people of all ages, some showing the anxiousness that I must have that first appointment back last year, whilst others were on first names terms with the receptionist.
"These people are clearly regulars", I thought to myself - at the same time, wondering whether I would now become one of these "regulars"....??
After about 10 minutes of waiting, I started to feel really anxious again. What was I doing?? I had been here before, I knew my consultant, I knew what was wrong with me, so why was I so worried...? Pete picked up on the fact that I was worried and just held my hand and in the true romantic way, said "Come on moron, stop worrying!"
The reason I had started to get nervous was because I had been sat there long enough for my attention to be taken from the gorgeous channel shoes I had just spotted in the copy of Vogue I was reading, and wondering whether I could justify to myself that I needed them - to the fact of I was still unwell some weeks post op and was still experiencing some severe symptoms. Why was this, they told me that this op would stop all this - so what was wrong, something must be wrong as they are still here - WHY ARE THEY STILL HERE!!!????
Eventually we were called in to the room and instantly my consultant smiled and we both felt safe again -(Now this may sound silly, but after you have been through such an ordeal, such a major operation - probably any kind of op), basically putting your life in his hands, to see the man that got you through this safely, promising that I would wake up from the operation - YES, stupid me did ask this question) it is always so calming to see him.
Firstly he showed me my previous MRI (PRE-op) to show my extent of herniation....this alone was quite amazing. He explained and showed me the part of skull that they had removed to make room for the brain and fluid flow. He then asked how I had been and how I was feeling. I explained all the symptoms that I was still experiencing - the severe headaches, balance problems, visual blurriness and floaters, nausea etc. This is the bit I had been scared to hear - was this still normal or is there the risk of them having to operate again pretty soon to make the space bigger?(I had been told that if the op wasn't a complete success, then they would have to re-open the wound and re-operate) - I Stopped breathing.....his response was that these were normal and these will now just fade away with time. Breathe again!
OK, so these were normal, the time differs in all people and they would just fade away....I can deal with that! He then said that I would need a repeat MRI in Aug/Sept time so they can check the new spacing, check that the CS fluid is flowing as it should and that there have been no changes! He also confirmed that there were definitely no Syrinx - which to me, was as good to me as being told - Jaffa cakes only have 1g of fat! Result, WOOHOO!!!
We both thanked the consultant again and again and finally left the stuffy, but familiar waiting room. Next I had to just stop off for blood to be taken 4 months before my MRI - as if having to go through the horrible, scary MRI again wasn't bad enough, tests have now shown that MRI scans can actually damage your kidneys - Happy days!! I mean come on!!
When walking back to the car, I began to cry. I had been so worried about being told that my symptoms were abnormal post op, that I had worked myself up so much, I was nearly sick! I could see the relief in Pete's eyes, which meant more to me than being told that everything was normal. He has really been through it, as have my whole family and I hate that it is me that has put them through all this pain and anguish.
So, here we are on the 29th April and I am still having severe symptoms. I was due to return to work last Monday 21st, however on the Thursday prior to this I had visited my GP to sign me back in to work and to ask for some stronger painkillers, so that if I did develop a headache whilst at work, I could at least try and suppress it when I was there. The GP prescribed a painkiller that I began to take that Thursday night as I had a terrible head. From that Friday morning until last Thursday I had relapsed to the way I had been 6 or 7 weeks ago. The tablets clearly did not agree with me and made me absolutely terrible again. I returned to my GP on the Tuesday (my actual GP) and he told me to throw them in the bin, explained that I can't return to anything until the symptoms had resolved and signed me off for another 3 weeks. ABSOLUTELY GUTTED!
I feel totally deflated at the moment, I was doing so so well and was so looking forward to starting to get my life back, to get some sort of normality back and see my friends and colleagues that I have missed dearly. Instead I find myself stuck at home still, trying desperately to regain the normalness that I felt 2-3 weeks ago. All I am concentrating on now is trying to get better, so I can try and regain this normality back, as I was meant to on the 21st!
I would like to say a huge, huge thank you to all my friends, family and colleagues that have shown no end of support through this time. It's true what people say "You realise who your friends are at times like these...." - I have been lucky and I didn't realise I had so many beautiful people that care for me - I will never forget the love and support I have received!
Also I would like to say a thank you to my long lost friend Laura who recently found me on Facebook of all places! We haven't been in touch for 10 years and low and behold - she too is a chiarian. Our chats have helped so much over the past few weeks, even though I can talk to Pete or my Mum about how I am feeling, it is so refreshing to be able to talk to someone who "understands" how I am feeling, someone who knows the symptoms and knows what a depressing and unforgiving illness this can be. The one thing that Lau has said that makes the most sense is...
"....even though on the outside we look fine, on the inside we are not".
I feel that the last 3 and a half months have changed me slightly. I feel, even though it's hard to believe after reading all this, I feel like a new person, who has so much to look forward to. I am desperate to get back in the gym (Pete had to drag me before my diagnosis), I am definitely going to get back in to my hockey and have already arranged a team to join in September (I have talked about this for years but never actually done anything about it), I am going to call friends when I say I will and ensure that I reply to every message/letter that is sent to me, and above all, I am going to spend more time with my family, especially my beautiful niece and nephew who make me laugh so much, it hurts!
I don't want to come across as some weirdo who has re-evaluated their life for no reason, but it just shows that none of us know what is around the corner. I have always been one who had her life mapped out - until now! So, all I am trying to say really, is that I am now going to appreciate everyday - rather than wishing it was a Friday on my way in to work on a Monday morning, or stressing over whether we should go out for a drink on a work night...and most of all, I will never take things for granted again........well, apart from my husbands lack of ability to say no when I want to go shopping ;-)
xxxxxxx
If anyone reading this would like to have a chat, if you are a chiarian with a recent diagnosis, or if you have undergone the same as I have, please feel free to add any comments to this BLOG or get in touch with me via this BLOG or Facebook Group "Me and Chiari Malformation" x
Wednesday, 30 January 2008
On the road to recovery now........
Well I am sat in my living room, propped up with 8, yes 8, pillows - trying to keep a 45 degree angle - which at the moment, is the only way I can sit or lie without my head feeling like it is going to explode!
This surgery has been a very long process and has made me feel more awful than anything else ever has. I have had a couple of relapses, but at least now I am home!
It all started on the 16th Jan - the longest day of my life! Feeling extremely apprehensive, Pete and I sat at home waiting for a call from B4N (my neuro-surgery ward) to say that a bed was available. A call at 11am, went to 2pm, then to 4 pm - at which time the "good" news was reported "We have a bed for you now Mrs O'Sullivan".
This was the news that we had been hoping for all day, you work yourself up to the fact that this is going to happen and I am now as prepared as I was ever going to be, so being told that there was no bed available, would have been my worst nightmare. However, when they finally confirmed that a bed was available, I wished it wasn't all happening again....so maybe I wasn't as prepared as I thought I was! (The truth is, I don't think I could ever have really prepared myself, as when it came to it, I was scared, VERY scared!).
So in we went, Pete and I were shown to my bed on a ward of 8 other women, some pre-op and some post-op by a few days. I had never felt fear like this, here I was in a neuro-surgery ward and I was due to have surgery - this couldn't be happening to me. I had held myself together all day, no tears - but now the tears flew out and people were giving me sympathetic looks as if to reassure me that I would be fine.....this just made me feel worse. I felt like a victim, I didn't want sympathy, I just wanted my "normal" life back which had no mention of Chiari.
Within the next hour, we met 2 anaesthetists, the nurse who would be looking after me that night and the following morning and then my Consultant Mr Nannapaneni (my hero!) Mr Nannapaneni was with us for no longer than 10 minutes and in that short time, he put my mind at ease. He discussed in depth what he was going to do exactly:
" We start by anaesthetising you in the anaesthetist room, when asleep you are then taken in to the theatre, don't worry, you won't see anything in this room (THANK GOD!). You will be face down to operate on and safety procedures are in place i.e. Your head will be in a vice to ensure no movement, as well as being kept on oxygen for the whole procedure to ensure your breathing is regulated the whole time. A 3-4 inch incision is then made at the base of your head, I will keep the hair removal to a minimum as I know you have 2 weddings this year (he remembered!), and as you have long hair, this will hide the loss also. I will then cut through your muscles, not through the middle of them, but where they meet, to keep the bleeding to a minimum. We will then cut and remove a 2x2 cm squared section from your skull (crainectomy). In decompression operations, I like to also make an incision in to the the Dura (the outermost, toughest and most fibrous of the three membranes (meninges) covering the brain), which also relieves the pressure on the brain.
This surgery has been a very long process and has made me feel more awful than anything else ever has. I have had a couple of relapses, but at least now I am home!
It all started on the 16th Jan - the longest day of my life! Feeling extremely apprehensive, Pete and I sat at home waiting for a call from B4N (my neuro-surgery ward) to say that a bed was available. A call at 11am, went to 2pm, then to 4 pm - at which time the "good" news was reported "We have a bed for you now Mrs O'Sullivan".
This was the news that we had been hoping for all day, you work yourself up to the fact that this is going to happen and I am now as prepared as I was ever going to be, so being told that there was no bed available, would have been my worst nightmare. However, when they finally confirmed that a bed was available, I wished it wasn't all happening again....so maybe I wasn't as prepared as I thought I was! (The truth is, I don't think I could ever have really prepared myself, as when it came to it, I was scared, VERY scared!).
So in we went, Pete and I were shown to my bed on a ward of 8 other women, some pre-op and some post-op by a few days. I had never felt fear like this, here I was in a neuro-surgery ward and I was due to have surgery - this couldn't be happening to me. I had held myself together all day, no tears - but now the tears flew out and people were giving me sympathetic looks as if to reassure me that I would be fine.....this just made me feel worse. I felt like a victim, I didn't want sympathy, I just wanted my "normal" life back which had no mention of Chiari.
Within the next hour, we met 2 anaesthetists, the nurse who would be looking after me that night and the following morning and then my Consultant Mr Nannapaneni (my hero!) Mr Nannapaneni was with us for no longer than 10 minutes and in that short time, he put my mind at ease. He discussed in depth what he was going to do exactly:
" We start by anaesthetising you in the anaesthetist room, when asleep you are then taken in to the theatre, don't worry, you won't see anything in this room (THANK GOD!). You will be face down to operate on and safety procedures are in place i.e. Your head will be in a vice to ensure no movement, as well as being kept on oxygen for the whole procedure to ensure your breathing is regulated the whole time. A 3-4 inch incision is then made at the base of your head, I will keep the hair removal to a minimum as I know you have 2 weddings this year (he remembered!), and as you have long hair, this will hide the loss also. I will then cut through your muscles, not through the middle of them, but where they meet, to keep the bleeding to a minimum. We will then cut and remove a 2x2 cm squared section from your skull (crainectomy). In decompression operations, I like to also make an incision in to the the Dura (the outermost, toughest and most fibrous of the three membranes (meninges) covering the brain), which also relieves the pressure on the brain.
Some surgeons do this, some don't, some do and leave the Dura open, however I then use a patch to stitch over this new opening, the patch used is actually lining of a cows heart (this is because it is close to the actual material of the Dura - NICE!). That is the procedure done and then all we need to do is stitch it all back up very carefully, to ensure no CSF (cerebrospinal fluid) can leak through the wound as this could cause infection - Meningitis to name one. This closure procedure takes some time! We then staple the incision at the back of the head, these staples are removed after 10-14 days. The op will take about 1 to 1.5 hours. Hospital stay will be about 4 days. Any questions...?"
Hell yes I have questions!
I can't really remember what I asked now as at the time I was in a daze and just completely hanging on every word he said!! I was chuffed to bits that the op was so short as every thing I had read said approx 4 hours - so he must be a pro!
My mum joined us at the hosp about an hour later and we re-iterated all this info to her, which made her quite nervous I think, but she didn't really show it (brave girl!).
So after some Temazepam that night to help me sleep (great stuff!) and some the next morning at 6am, I was extremely relaxed about the whole thing and when Pete and my Mum came in at 7.30am they couldn't believe how relaxed I was!
8:15 soon came and I was wheeled off to the anaesthetic room - still very chilled may I add! I had some lines inserted and that is pretty much all I can remember.....I didn't even have to count back from 10 - I was out of it!
6 hours later, yes 6 I was wheeled back on to the ward. My Mum and Pete were beside themselves as the theatre will not call the ward with an update until you are wide awake and ok. I still don't really know what happened, but things took a lot longer that 1.5 hours!! Apparently I reacted quite bad when I came around, mostly vomiting I think, but not good. I have no recollection of this at all, which is probably a good thing! I remember waking up when back on HDU (High Dependency Unit - like intensive care but on neuro), I saw Pete and Mum at my bedside, their grey faces with worry, I waved slightly and then drifted back off to sleep. I then woke about an hour before they had to leave and had to fight to stay awake. They looked terrified and completely knackered from the whole day, this made me feel so sorry for them and I desperately tried to reassure them that I was ok, but this was made quite difficult as I probably vomited on them about 4+ times in that hour alone!
I remember having a good nights sleep that night, the anaesthetic probably had a lot to do with that mind! I was woken every 30 minutes for Obs (observation) during which my BP, pulse, Oxygen levels were taken, along with questions asking who the PM was, what was the date and day, where was I etc.... You would think that this was annoying, but I was so grateful for the care and attention they could have woken me every 5 minutes and I wouldn't have cared!
The next day was better, I still slept a lot but was a lot more with it. I cherished seeing Pete and my Mum at every visiting slot and I wanted to prove to them that I really was ok. I was still quite nauseous, but at the same time, they saw an improvement day by day. Sleeping through the nights got harder, as the anaesthetic wore off, the harder it was to sleep on the back of my head, but if I turned on to my side - nausea came back!
By Saturday I could walk back and forth to the toilet with some help of my mum (just in case!). They were both chuffed to bits to see me up and about, albeit for 5 minutes here and there, they knew I was getting better. Pete admitted that he wasn't sleeping at all since Thursday, but felt that tonight he may sleep better knowing that I was getting better.
Sunday came and so did my discharge - they either had to move me to a different ward, or I could maybe go home. The consultants came around and they along with me, decided I could go home. Hoorah I thought, home means more sleep!! Also I hadn't eaten for 4 days, so maybe being back home would make my appetite come back...???
Less than 24 hours later I was rushed back to the hospital, grey, weak, couldn't really talk or move my head for the pain and certainly couldn't walk on my own. I had also been sick twice..... I had been released too early and I had relapsed! There were no beds for me, so I was taken in to the treatment room, covered in blankets as I was freezing! One of the consultants then came in and said I had to have another LP (Lumbar Puncture), this was to be my second. Their concerns were either my CSF pressure, or I had an infection - Meningitis. One of the DR's came in, one that I had seen many times when in hospital and he started the LP. 30 minutes later, screaming and crying my eyes out, he was unsuccessful in finding the CSF, hitting every nerve in that area constantly. I begged Pete to tell him to stop and take the needle out - which he did. However, I either had to finish this now or let them try again tomorrow. I couldn't go through this again tomorrow so Pete and my Mum talked me in to proceeding with it now. One of the top consultants came in and took over and within 5 minutes the CSF fluid was being drained.
The normal pressure should read below 15. After the op, my first LP pressure read 26, this was drained down to a pressure of 19. On the LP today my levels had come down to 15, however the CSF fluid was pink. Normal CSF fluid is champagne clear, however mine contained blood (either from the op still or from the trauma of the LP itself), so this was drained down to a closing pressure of 3. The CSF was sent off for testing and came back -ve for any infection - PHEW! No more LP's were needed as the pressure was now 3, and daily our brains produce half a litre of CSF fluid, so with some movement from me, along with lots of water, this would help the CSF regain it's normal champagne colour and flush the blood out. With the blood being removed, this would reduce my headaches - as it was the blood that was causing the headaches and nausea!
Tuesday I was much better, still grey but not as headachy and then Wednesday much much better! So much so, that I was discharged (for the 2nd time) and off home we went. I felt ready to be home this time, nothing like last time!
So we are now nearly a week since being home and I am feeling ok. Not great unfortunately but ok. I would have updated this sooner, but I haven't had the energy to anything until today. The next few weeks are going to be frustrating for me as I may feel like I can go for a walk etc, but Monday I went to have my staples out and the whole outing completely took it out of me and I felt awful again Monday and yesterday. So I am going to have to listen to the DR's and my body and fully rest for the next 6 weeks at least.
Overall the op was a success. I was quite ill for a couple of days post op, then some more days recently, however it WAS a success! I am so relieved to be able to update this and tell my story as the fear and thoughts that have run through my head during this experience have been horrific - but it is all over now and I look forward to a headache free life!
Whilst in hospital I learnt that I have Chiari Type 1, no signs of syrinx and the herniation is actually 10.2mm, which is not the smallest nor the biggest - which is just the best news and the prognosis is good!
The nurses of B4N are absolutely outstanding and I feel I owe them so much, along with my consultant Nannapaneni. Thank you cards and a few chocolates just to not feel enough to give them, I wish I could give them more, as they are all very special people. They cared for me 24/7 and are true angels! I have an awful lot of respect for these people, working with such difficult situations along with under staffing and not enough bed space - but even though they have to contend with such problems daily - they exceeded my expectations and I know I have made friends for life there - with special thanks to Lynne and Sian, who helped me through my toughest times there!
I hope I haven't scared anybody reading this before their own surgery. If I were to change anything it would be my own interpretation on this op and how naive I was coming up to this surgery. I was extremely naive - this is major surgery and you can not expect to be up and about, or even watching DVD's in hospital in the first week or so. I physically could not do anything for at least a week, I did feel awful following the surgery for quite a while and I have vomited more than I have in my whole life put together! I still have off days now and I know I will for the next month or so, but you do see improvement and the love and support from my family and friends is just overwhelming, which has also helped!
It's still not an easy pill to swallow, but in a month or so I will look back on this time and be proud of what I have overcome.....in fact I already am!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hell yes I have questions!
I can't really remember what I asked now as at the time I was in a daze and just completely hanging on every word he said!! I was chuffed to bits that the op was so short as every thing I had read said approx 4 hours - so he must be a pro!
My mum joined us at the hosp about an hour later and we re-iterated all this info to her, which made her quite nervous I think, but she didn't really show it (brave girl!).
So after some Temazepam that night to help me sleep (great stuff!) and some the next morning at 6am, I was extremely relaxed about the whole thing and when Pete and my Mum came in at 7.30am they couldn't believe how relaxed I was!
8:15 soon came and I was wheeled off to the anaesthetic room - still very chilled may I add! I had some lines inserted and that is pretty much all I can remember.....I didn't even have to count back from 10 - I was out of it!
6 hours later, yes 6 I was wheeled back on to the ward. My Mum and Pete were beside themselves as the theatre will not call the ward with an update until you are wide awake and ok. I still don't really know what happened, but things took a lot longer that 1.5 hours!! Apparently I reacted quite bad when I came around, mostly vomiting I think, but not good. I have no recollection of this at all, which is probably a good thing! I remember waking up when back on HDU (High Dependency Unit - like intensive care but on neuro), I saw Pete and Mum at my bedside, their grey faces with worry, I waved slightly and then drifted back off to sleep. I then woke about an hour before they had to leave and had to fight to stay awake. They looked terrified and completely knackered from the whole day, this made me feel so sorry for them and I desperately tried to reassure them that I was ok, but this was made quite difficult as I probably vomited on them about 4+ times in that hour alone!
I remember having a good nights sleep that night, the anaesthetic probably had a lot to do with that mind! I was woken every 30 minutes for Obs (observation) during which my BP, pulse, Oxygen levels were taken, along with questions asking who the PM was, what was the date and day, where was I etc.... You would think that this was annoying, but I was so grateful for the care and attention they could have woken me every 5 minutes and I wouldn't have cared!
The next day was better, I still slept a lot but was a lot more with it. I cherished seeing Pete and my Mum at every visiting slot and I wanted to prove to them that I really was ok. I was still quite nauseous, but at the same time, they saw an improvement day by day. Sleeping through the nights got harder, as the anaesthetic wore off, the harder it was to sleep on the back of my head, but if I turned on to my side - nausea came back!
By Saturday I could walk back and forth to the toilet with some help of my mum (just in case!). They were both chuffed to bits to see me up and about, albeit for 5 minutes here and there, they knew I was getting better. Pete admitted that he wasn't sleeping at all since Thursday, but felt that tonight he may sleep better knowing that I was getting better.
Sunday came and so did my discharge - they either had to move me to a different ward, or I could maybe go home. The consultants came around and they along with me, decided I could go home. Hoorah I thought, home means more sleep!! Also I hadn't eaten for 4 days, so maybe being back home would make my appetite come back...???
Less than 24 hours later I was rushed back to the hospital, grey, weak, couldn't really talk or move my head for the pain and certainly couldn't walk on my own. I had also been sick twice..... I had been released too early and I had relapsed! There were no beds for me, so I was taken in to the treatment room, covered in blankets as I was freezing! One of the consultants then came in and said I had to have another LP (Lumbar Puncture), this was to be my second. Their concerns were either my CSF pressure, or I had an infection - Meningitis. One of the DR's came in, one that I had seen many times when in hospital and he started the LP. 30 minutes later, screaming and crying my eyes out, he was unsuccessful in finding the CSF, hitting every nerve in that area constantly. I begged Pete to tell him to stop and take the needle out - which he did. However, I either had to finish this now or let them try again tomorrow. I couldn't go through this again tomorrow so Pete and my Mum talked me in to proceeding with it now. One of the top consultants came in and took over and within 5 minutes the CSF fluid was being drained.
The normal pressure should read below 15. After the op, my first LP pressure read 26, this was drained down to a pressure of 19. On the LP today my levels had come down to 15, however the CSF fluid was pink. Normal CSF fluid is champagne clear, however mine contained blood (either from the op still or from the trauma of the LP itself), so this was drained down to a closing pressure of 3. The CSF was sent off for testing and came back -ve for any infection - PHEW! No more LP's were needed as the pressure was now 3, and daily our brains produce half a litre of CSF fluid, so with some movement from me, along with lots of water, this would help the CSF regain it's normal champagne colour and flush the blood out. With the blood being removed, this would reduce my headaches - as it was the blood that was causing the headaches and nausea!
Tuesday I was much better, still grey but not as headachy and then Wednesday much much better! So much so, that I was discharged (for the 2nd time) and off home we went. I felt ready to be home this time, nothing like last time!
So we are now nearly a week since being home and I am feeling ok. Not great unfortunately but ok. I would have updated this sooner, but I haven't had the energy to anything until today. The next few weeks are going to be frustrating for me as I may feel like I can go for a walk etc, but Monday I went to have my staples out and the whole outing completely took it out of me and I felt awful again Monday and yesterday. So I am going to have to listen to the DR's and my body and fully rest for the next 6 weeks at least.
Overall the op was a success. I was quite ill for a couple of days post op, then some more days recently, however it WAS a success! I am so relieved to be able to update this and tell my story as the fear and thoughts that have run through my head during this experience have been horrific - but it is all over now and I look forward to a headache free life!
Whilst in hospital I learnt that I have Chiari Type 1, no signs of syrinx and the herniation is actually 10.2mm, which is not the smallest nor the biggest - which is just the best news and the prognosis is good!
The nurses of B4N are absolutely outstanding and I feel I owe them so much, along with my consultant Nannapaneni. Thank you cards and a few chocolates just to not feel enough to give them, I wish I could give them more, as they are all very special people. They cared for me 24/7 and are true angels! I have an awful lot of respect for these people, working with such difficult situations along with under staffing and not enough bed space - but even though they have to contend with such problems daily - they exceeded my expectations and I know I have made friends for life there - with special thanks to Lynne and Sian, who helped me through my toughest times there!
I hope I haven't scared anybody reading this before their own surgery. If I were to change anything it would be my own interpretation on this op and how naive I was coming up to this surgery. I was extremely naive - this is major surgery and you can not expect to be up and about, or even watching DVD's in hospital in the first week or so. I physically could not do anything for at least a week, I did feel awful following the surgery for quite a while and I have vomited more than I have in my whole life put together! I still have off days now and I know I will for the next month or so, but you do see improvement and the love and support from my family and friends is just overwhelming, which has also helped!
It's still not an easy pill to swallow, but in a month or so I will look back on this time and be proud of what I have overcome.....in fact I already am!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Tuesday, 15 January 2008
Not long now..
Well, I am sat here wondering what lies ahead....
Pete is asleep on the sofa, I think this is taking quite a bit out of him too, and I am trying to cram some last minute trashy TV in before I head off to hospital tomorrow!
I'm being admitted at 2 pm tomorrow, so today has been full of some last minute jobs, including buying some new jammies as well as making sure I clear all the ironing (so Pete has things to wear when I am not here), as well as cooking some food to freeze for him, so he has some quick and nice food to come home to after visting me in hospital every night! You probably think I am mad, but I like to think that I can still look after him when I am not here!
I just want to take this chance to thank everyone for all your wonderful messages that I have received over the last few days, I have so many wonderful friends and it is at times like these, that you learn who your friends are.
So thank you ever so much for your support and I hope to be back soon to keep you informed!!
Take care
Zoe xxxxxxxx
Pete is asleep on the sofa, I think this is taking quite a bit out of him too, and I am trying to cram some last minute trashy TV in before I head off to hospital tomorrow!
I'm being admitted at 2 pm tomorrow, so today has been full of some last minute jobs, including buying some new jammies as well as making sure I clear all the ironing (so Pete has things to wear when I am not here), as well as cooking some food to freeze for him, so he has some quick and nice food to come home to after visting me in hospital every night! You probably think I am mad, but I like to think that I can still look after him when I am not here!
I just want to take this chance to thank everyone for all your wonderful messages that I have received over the last few days, I have so many wonderful friends and it is at times like these, that you learn who your friends are.
So thank you ever so much for your support and I hope to be back soon to keep you informed!!
Take care
Zoe xxxxxxxx
What is ACM??
Chiari malformation (ACM, CM) is a rare condition where the lower part of the brain (the cerebellar tonsils) has herniated down in to the spinal cord area.
Hans Chiari first identified the disorder in the 1890’s. A colleague of Professor Chiari, Dr. Arnold, later contributed to the definition of the condition, and the students of Dr. Arnold suggested the term "Arnold-Chiari malformation" to be the full term for the condition.
There are 2 main types -Type I and Type II. Tyoe 2 being more serious and is associated with Spina Bifida. We then have Type III and IV, however these are very rare.
The cause is unknown, believed to be primarily a congential condition, although there have been some reported cases of an acquired form.
This condition affects people of all ages, however is usually diagnosed in children and adults in late 20’s – early 30’s.
Classic definition involves the length of the herniation (>3-5mm).
Research has shown little correlation between length of herniation and symptoms; focus now on flow of cerebrospinal fluid (CSF); malformation blocks normal flow. This can also lead on to a secondary condition, syringomyelia, in some people.
Hans Chiari first identified the disorder in the 1890’s. A colleague of Professor Chiari, Dr. Arnold, later contributed to the definition of the condition, and the students of Dr. Arnold suggested the term "Arnold-Chiari malformation" to be the full term for the condition.
There are 2 main types -Type I and Type II. Tyoe 2 being more serious and is associated with Spina Bifida. We then have Type III and IV, however these are very rare.
The cause is unknown, believed to be primarily a congential condition, although there have been some reported cases of an acquired form.
This condition affects people of all ages, however is usually diagnosed in children and adults in late 20’s – early 30’s.
Classic definition involves the length of the herniation (>3-5mm).
Research has shown little correlation between length of herniation and symptoms; focus now on flow of cerebrospinal fluid (CSF); malformation blocks normal flow. This can also lead on to a secondary condition, syringomyelia, in some people.
Thursday, 10 January 2008
I suppose I had better introduce myself & explain why I am doing this!
"For god's sake Zo, will you stop reading that crap on that sodding laptop, you'll just make yourself feel worse!"
These were the words of my wonderful husband Pete just a few months ago when I started searching the net for literally anything and everything I could for this new and scary condition I had just been told I had - Arnold Chiari Malformation (ACM).
I mean what is a girl to do? You suffer with headaches for years, just putting them down to an inconvenience or a hangover, then a few years later you start to get other strange symptoms, like pins and needles, numbness etc else where in the body and then the brain starts telling you that maybe you should take that trip to the Dr's that you have been putting off for weeks. Eventually (if you are lucky and your GP listens to you) you may get an MRI scan and then BOOM - your whole world is put on standstill, you can hear the consultant neurosurgeon explaining your MRI results and you can hear what he is telling you, but all you can think about is - please not me, this can't be happening.......?!
I have decided to start this BLOG to detail my experience of Chiari and try to shed some light on this rare condition. Now, I am certainly no expert, extremely far from it, but I DO have this condition and I have trawled the internet and searched GOOGLE more than it ever has been before, in the hope for some decent, realistic information of this condition searching for my main question - "what happens now??". I suppose I'm trying to put something on the NET that I would have appreciated reading......someone real, someone in the same boat as me, someone who understands.
So let's fill you in on how I came around to being diagnosed....
Pete & I were involved in a car accident about 4 years ago. BANG - a car hit us at 30 mph, he was not looking in our direction at the junction and just decided to pull out. Before we had chance to do anything or to really work out what had happened, I was surrounded by firemen and an ambulance crew.
4 years later here I am, repeated episodes of time off work with neck pain, headaches and migraines and more recent pins and needles and numbness symptoms, I did go back to my GP and I was re-referred to physiotherapy for my neck. During my sessions I started to mention these new symptoms and it was believed that they were of no concern and certainly no neurological cause - this was more likely to be related to my neck injury and a possible trapped nerve. With no joy from my physio about further investigations, I spoke with my Chief Medical Officer (CMO) in work for his opinion. I have spoken many times with our CMO about my neck pain, so felt at ease in discussing such problems with him. It was then that he suggested I asked for an MRI scan.
My GP was the one who reported the findings, and to be honest, he had to search Google to explain the situation to me. I sat there and cried in the consultation room, right in front of him. I couldn't speak for the amount of tears that were flooding down my cheeks. I think it was more difficult as he didn't really know much about the condition. Now, I have always seen my GP as the man who can make anything better, but unfortunately, such conditions do not come around that often, and some GP's may never have a patient with Chiari, so I completely understand that this was a learning curve for us both!
I was then referred to a neuro-surgeon. The appointment seemed to take forever to come through my front door - but it did. I remember sitting there in the waiting room at the Heath Hospital, Pete at my side, and my whole body felt numb. I mean, hang on a minute, I.....I was sat in a neuro-surgery consultation ward - it shouldn't be me, it's always someone else. No, this was me, it was really happening and nothing I did could change that! My name was called and in we went. I sat there and had to go through my symptoms and history for the last 4 years, when it all began. I then had my reflexes tested as well as the pin prick test. "Sharp - Blunt - Sharp - Sharp - Blunt." I passed with flying colours! Fantastic I thought, there's nothing wrong with me. Yes I may have this Chiari thing they're talk about, but clearly I am in a full bill of health.
How wrong could I be...
The DR then explained that he wanted to discuss my MRI with one of the senior consultants. Then I met my consultant. This was the scary bit - surgery was mentioned pretty much straight away, well it was in my head anyway. Surgery in my head means that something is really wrong, it won't go away on it's own - it's there and needs to be sorted. My mind went blank, the only question that I could manage was " How much hair will you take away??" Pete started to ask the important questions. It was explained to us fully, what the surgery means, the less than 5% risk involved, the amount of hair that is shaved away, the complications that can occur if I didn't have the surgery - which can be irreversible.........of course this didn't make me feel any better.
Being told that you have something wrong with you is always a hard and painful pill to swallow, it is natural for anyone to feel shocked, scared and concerned when you find out that you are not the fit and healthy person you believed you are.
I was given the option to either go under 6-12 month review with an MRI each year, so they could compare to the last. This would check whether there has been any progression in the condition and whether "cavities" had started to form. At this point if they do, I was told that there would be no treatment to cure this. Therefore, needless to say I have opted for the surgery in the hope that I will then be symptom free!! My surgery is now a week away, I get admitted to the hospital on the 16th and then my op is the 17th. I am yet to be told which type if Chiari I have as apparently I have some, but not all of the symptoms, so this will all be revealed when I see the consultant when admitted, so I am very anxious as you can imagine but am now in the state of mind that I just want to get in there, get it done, recover and then come home and start my recovery.
I was offered the option of going to the ward to have a look around, which of course I jumped at. I am the kind of person that wants to know everything about everything, and even more so if it involves me. I was the kind of child that would always ask "Why??" I would recommend anyone who opts for the surgery to jump at the chance. I must be honest and say that it scared the hell out of me and prob made me feel far worse for a few days, as it is a very "sad" ward. Not many people were awake and not many, if any were talking with each other. I also learnt that I will be put on the high dependency ward when I return from surgery, and will be here for approx 2 days, as long as I do ok, I will then be placed on a normal neuro ward and can expect to be there for a total of 4-7 days - OBVIOUSLY I AM HOPING FOR THE 4!
I am not a hospital person and am in fact, quite a wimp when it comes to something being wrong with me. I have since I found out my surgery date, which has to be maybe 4-5 weeks now, but I have started to accept that this is my only option to get on with my life, symptom free and to start to think of a family of our own - so get on with it hey!
I will be posting lots of information before I go in to hospital for those of you who don't really know much about Chiari. From then on this will be used as my diary for the next month or two, a place to vent my frustrations and a place to share my experiences. I think members of my family reading this may be slightly shocked as I have not really discussed how I am feeling with them, not because they haven't asked me, but just because until now, I have sub-consciously closed up - completely, but then fallen to pieces the minute someone asks me about it. I have spoken with Pete of course, he has tried his best to get me to talk about it all, but I have even held back there, again not purposely. This again is just a natural reaction, clearly not the best, but one I could not change....until now!
My families support, along with my friends and work colleagues support, has been truly touching so for that I am so lucky and ever thankful!
Closing note....
This is in NO WAY to be used as a medical reference clearly and obviously - but simply something that people can try to relate to and read for their own piece of mind - just knowing that someone else is having the same worries and concerns as you, can be reassuring in itself! Decompression surgery is not something to be frightened of, this I am now sure of, it is something simply that has to be done for us all, to get on with our lives - otherwise I may never go skiing, running or laugh out loud without my head feeling like it is about to explode....so this is a good risk in my eyes! (Maybe not quite Std Rates, but do-able hey underwriters?! hee hee)
Plus I hear that you get spoilt after having neuro-surgery, so that's a plus! ;-)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
These were the words of my wonderful husband Pete just a few months ago when I started searching the net for literally anything and everything I could for this new and scary condition I had just been told I had - Arnold Chiari Malformation (ACM).
I mean what is a girl to do? You suffer with headaches for years, just putting them down to an inconvenience or a hangover, then a few years later you start to get other strange symptoms, like pins and needles, numbness etc else where in the body and then the brain starts telling you that maybe you should take that trip to the Dr's that you have been putting off for weeks. Eventually (if you are lucky and your GP listens to you) you may get an MRI scan and then BOOM - your whole world is put on standstill, you can hear the consultant neurosurgeon explaining your MRI results and you can hear what he is telling you, but all you can think about is - please not me, this can't be happening.......?!
I have decided to start this BLOG to detail my experience of Chiari and try to shed some light on this rare condition. Now, I am certainly no expert, extremely far from it, but I DO have this condition and I have trawled the internet and searched GOOGLE more than it ever has been before, in the hope for some decent, realistic information of this condition searching for my main question - "what happens now??". I suppose I'm trying to put something on the NET that I would have appreciated reading......someone real, someone in the same boat as me, someone who understands.
So let's fill you in on how I came around to being diagnosed....
Pete & I were involved in a car accident about 4 years ago. BANG - a car hit us at 30 mph, he was not looking in our direction at the junction and just decided to pull out. Before we had chance to do anything or to really work out what had happened, I was surrounded by firemen and an ambulance crew.
4 years later here I am, repeated episodes of time off work with neck pain, headaches and migraines and more recent pins and needles and numbness symptoms, I did go back to my GP and I was re-referred to physiotherapy for my neck. During my sessions I started to mention these new symptoms and it was believed that they were of no concern and certainly no neurological cause - this was more likely to be related to my neck injury and a possible trapped nerve. With no joy from my physio about further investigations, I spoke with my Chief Medical Officer (CMO) in work for his opinion. I have spoken many times with our CMO about my neck pain, so felt at ease in discussing such problems with him. It was then that he suggested I asked for an MRI scan.
My GP was the one who reported the findings, and to be honest, he had to search Google to explain the situation to me. I sat there and cried in the consultation room, right in front of him. I couldn't speak for the amount of tears that were flooding down my cheeks. I think it was more difficult as he didn't really know much about the condition. Now, I have always seen my GP as the man who can make anything better, but unfortunately, such conditions do not come around that often, and some GP's may never have a patient with Chiari, so I completely understand that this was a learning curve for us both!
I was then referred to a neuro-surgeon. The appointment seemed to take forever to come through my front door - but it did. I remember sitting there in the waiting room at the Heath Hospital, Pete at my side, and my whole body felt numb. I mean, hang on a minute, I.....I was sat in a neuro-surgery consultation ward - it shouldn't be me, it's always someone else. No, this was me, it was really happening and nothing I did could change that! My name was called and in we went. I sat there and had to go through my symptoms and history for the last 4 years, when it all began. I then had my reflexes tested as well as the pin prick test. "Sharp - Blunt - Sharp - Sharp - Blunt." I passed with flying colours! Fantastic I thought, there's nothing wrong with me. Yes I may have this Chiari thing they're talk about, but clearly I am in a full bill of health.
How wrong could I be...
The DR then explained that he wanted to discuss my MRI with one of the senior consultants. Then I met my consultant. This was the scary bit - surgery was mentioned pretty much straight away, well it was in my head anyway. Surgery in my head means that something is really wrong, it won't go away on it's own - it's there and needs to be sorted. My mind went blank, the only question that I could manage was " How much hair will you take away??" Pete started to ask the important questions. It was explained to us fully, what the surgery means, the less than 5% risk involved, the amount of hair that is shaved away, the complications that can occur if I didn't have the surgery - which can be irreversible.........of course this didn't make me feel any better.
Being told that you have something wrong with you is always a hard and painful pill to swallow, it is natural for anyone to feel shocked, scared and concerned when you find out that you are not the fit and healthy person you believed you are.
I was given the option to either go under 6-12 month review with an MRI each year, so they could compare to the last. This would check whether there has been any progression in the condition and whether "cavities" had started to form. At this point if they do, I was told that there would be no treatment to cure this. Therefore, needless to say I have opted for the surgery in the hope that I will then be symptom free!! My surgery is now a week away, I get admitted to the hospital on the 16th and then my op is the 17th. I am yet to be told which type if Chiari I have as apparently I have some, but not all of the symptoms, so this will all be revealed when I see the consultant when admitted, so I am very anxious as you can imagine but am now in the state of mind that I just want to get in there, get it done, recover and then come home and start my recovery.
I was offered the option of going to the ward to have a look around, which of course I jumped at. I am the kind of person that wants to know everything about everything, and even more so if it involves me. I was the kind of child that would always ask "Why??" I would recommend anyone who opts for the surgery to jump at the chance. I must be honest and say that it scared the hell out of me and prob made me feel far worse for a few days, as it is a very "sad" ward. Not many people were awake and not many, if any were talking with each other. I also learnt that I will be put on the high dependency ward when I return from surgery, and will be here for approx 2 days, as long as I do ok, I will then be placed on a normal neuro ward and can expect to be there for a total of 4-7 days - OBVIOUSLY I AM HOPING FOR THE 4!
I am not a hospital person and am in fact, quite a wimp when it comes to something being wrong with me. I have since I found out my surgery date, which has to be maybe 4-5 weeks now, but I have started to accept that this is my only option to get on with my life, symptom free and to start to think of a family of our own - so get on with it hey!
I will be posting lots of information before I go in to hospital for those of you who don't really know much about Chiari. From then on this will be used as my diary for the next month or two, a place to vent my frustrations and a place to share my experiences. I think members of my family reading this may be slightly shocked as I have not really discussed how I am feeling with them, not because they haven't asked me, but just because until now, I have sub-consciously closed up - completely, but then fallen to pieces the minute someone asks me about it. I have spoken with Pete of course, he has tried his best to get me to talk about it all, but I have even held back there, again not purposely. This again is just a natural reaction, clearly not the best, but one I could not change....until now!
My families support, along with my friends and work colleagues support, has been truly touching so for that I am so lucky and ever thankful!
Closing note....
This is in NO WAY to be used as a medical reference clearly and obviously - but simply something that people can try to relate to and read for their own piece of mind - just knowing that someone else is having the same worries and concerns as you, can be reassuring in itself! Decompression surgery is not something to be frightened of, this I am now sure of, it is something simply that has to be done for us all, to get on with our lives - otherwise I may never go skiing, running or laugh out loud without my head feeling like it is about to explode....so this is a good risk in my eyes! (Maybe not quite Std Rates, but do-able hey underwriters?! hee hee)
Plus I hear that you get spoilt after having neuro-surgery, so that's a plus! ;-)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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