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!
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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!
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