It all started one night when I was seven years old. I had a severe headache, couldn’t lift my head, couldn’t look at the light and was vomiting. My Mum got the Doctor out to the house as they both initially thought it was meningitis. I continued to get episodes like this on a very regularly basis and was treated for childhood migraines with calpol.
All through my childhood into my teenage years I continued to get these symptoms but they worsened with age. When I was seventeen they sent me to a migraine clinic at the Southern General Hospital. While at the clinic they gave me an MRI scan and the results show in fact it wasn’t migraines it was a chiari malformation I was suffering from. I’m told “don’t start work for a removal company and we will review you on a yearly basis”. What sort of advice is that from a neurologist? I think he wanted to become a comedian.
I continued to get MRI scans on a yearly basis and was seen by a neurologist. After I had my Daughter Lauren I developed a syrinx which was growing quickly. Initially I wasn’t even told I had this syrinx. My neurologist stated that he didn’t agree with surgery. I found out I needed to be referred to a surgeon when my file went in front of a panel of neurologists for review. They were angry that I hadn’t been referred to a surgeon before now.
So now I’m referred to Mr o Kane for my first decompression surgery. He said with my syrinx growing by the day there was no other option but to Operate.
I got married on the 4th August 2013 and was admitted for decompression surgery in September 2013. My decompression surgery was on Friday the 13th!! I should have known that wasn’t a good idea! The surgery wasn’t a success, I developed meningitis due to a reaction to the dura patch that was used and the cerebral tonsils fell back down. I then started what seemed a continual administration of antibiotics. All my veins had given up so they ended up having to use my feet!
Once the were sure they had fought the meningitis they did they second decompression. This time they didn’t use a dura patch our use any glue and they amputated the cerebral tonsils so there was no risk of them falling back down.
My daughter during all this was going through hip and pelvis operations and was in a spica cast. She was due to get her spica cast removed after 18 months of having no legs!! I didn’t want to miss this!! After surgery I was still in pain and still didn’t feel right but wanted to see my baby get her cast off so I told them I was fine. Your children are the most Important things in the world. I seen her cast removal as more important than me being sore.
So I get home and I get to see my Daughters cast removal. It was the most amazing experience in the world! My daughter now had legs after 18 months of traumatic operations. However during the happiness I’m really not feeling well. I’m in a lot of pain and feeling dizzy and lightheaded. I decided the best thing was to get back home.
I was at home alone and I wasn’t feeling great so thought I’d better eat. I organised lunch and as I walked from the kitchen with a plate and a glass I collapsed. I woke in a pool of blood and broken glass. I had managed to smash the glass and the plate and glass myself in the face. I crawled over to the couch and managed to get on it. I must have a guardian angel as I wasn’t due to have any visitors but my aunt suddenly walked through the door. She phoned and ambulance and I was blue lighted to the Southern General hospital.
It turned out I needed decompression number three! This time two surgeons went in Mr o Kane and Miss Brown tried their best but due to the meningitis there was too much scar tissue to continue. If they continued there was too much chance of nicking the brain stem. They instead took away more skull and vertebrae.
After surgery I still wasn’t feeling right. I had extreme pain in my face and couldn’t sit up. I was sent for an emergency CT scan and it turned out I had hydrocephalus on top of everything else. So back down to surgery for a vp shunt!
Due to me being bed bound for so long when I tried to get up I couldn’t walk. I was sent to the Disability Rehabilitation Unit to build up my strength and learn to walk again. I eventually got home in April 2014, 8 months in hospital! It wasn’t how I was expecting to spend the first 8 months of married life, plus we still haven’t had a honeymoon.
I was monitored very closely every few months going forward but symptoms got worse and syrinx got bigger. Mr o Kane decided that a shunt was needed to be put directly into the syrinx. So this meant more surgery and I would have two shunts in situ. I agreed this was the best course of action.
I had the surgery and the syringal pleural shunt was in place but when I woke up something was wrong. I couldn’t feel my left leg from my knee downwards or my left foot. The surgeon came around to speak to me and he explained when they are placing the shunt they go through the area of the spine that controls sensation. This was obviously damaged, and would not return. He explained it Is a risk of surgery. My syrinx was reducing which was what they wanted but I’d lost the use of most of my left leg. When I tried to get up I couldn’t walk. I had to learn to walk again for a second time!!
I have been told by my surgeon it would be far too dangerous to do anymore surgery. The benefits would really have to outweigh the negatives. I have been left disabled and housebound but I’m trying to not let chiari win. I’m using my bad experiences to help others. I have started a Facebook page called Chiari Support which helps support other chiari sufferers through their journey. I also blog about my journey in the hope that my stories help others and they can hopefully relate.
I hope this helps give people an insight into what it’s like to suffer from chiari because it’s not been easy!
It’s been the worst three years of my life due to chiari but I’m determined not to let it win!!
X X X
Go to the chemist and guess what my prescription isn’t right again and there is things missing!! This time it’s my oromorph. Chemist says they never had a prescription from the doctors so they suggest I should phone the doctors. It’s never straightforward!
The next morning when the doctors open I call and the receptionist answers. It’s a voice I don’t recognise which Is strange as I know all the staff. I start to explain my long story that I had a phone appointment with the doctor on the Monday of that week and the doctor was to prescribe me my usual oromorph that I get every week. Her reply in a sarcastic know it all voice was ” are you sure you had a phone appointment??? No I just imagined it!!!! She made me feel like I was some sort of crazy woman!
She then eventually accepted I did actually speak to the doctor on Monday and I told her I should have had a prescription for oromorph. Roll on debate number two!! She says ” you had oromorph last week” I say yes I know I get it every week! So I get put on hold and then she comes back with her next attack ” you are on mst and the doctor did a prescription for that on Monday so that will be why you didn’t get a prescription for oromorph”. My reply mst had notning to do with oromorph, could you get the doctor to do a prescription!!!! Eventually she agrees she will ask the doctor and if there is any problems the doctor will phone me.
It was the most horrendous phone call I’ve ever had to make! I first felt like some raving lunatic then felt like a criminal/drug addict. I felt I had to justify myself to the receptionist and jump through hoops to get something I should have had in the first place! All this time I’m sitting in agony because I have no oromorph!
I am now sitting with a horrendous headache brought on by crying and the stress of the phone call. I’m waiting to see if I passed my phone interview to get my prescription from the doctor!
People need to realise that you don’t treat everyone the same. We are on this pain relief because we are genuinely in pain and we need it. We are not criminals or drug addicts! We shouldn’t be made to be feel the way I did today!
I really wanted to share my experience with you as I’m sure a lot of my members have had similar experiences and it’s not nice.
Join us at Chiari Support uk
X X X
A day in the life
It’s 7am and my alarm is going off to get Lauren up for school. I open one eye to see how I’m feeling, in turn the kind of day I’m going to have. I shut my eyes again because I realise I have stabbing pains in my head, feel sick and my body is aching all over but still I need to get up for school!!
I somehow manage to get Lauren breakfast and ready for school but realise I’m supposed to be going to a friends house for dinner that leaves me with the usual horrible dilemma of, do I cancel? I could cancel just now to give them some notice or wait and see if I get better later. However if I don’t get better I’m cancelling with no notice at all, which is worse!
So when you cancel and tell your friend that you have a horrendous headache and pains all over and below is some of the things you might be told –
– have you tried fresh air (really???!!)
– I have a headache too it must be something that’s going about (no!!)
– I hope you feel better soon (there is no cure, in fact I am to deteriorate)
– I think it’s all the tablets you take (and again no!!)
The list is endless and very frustrating.
While at home nursing my horrendous headache I speak to my friend who also has chiari. I met her on the Chiari Support UK page I created. She is struggling with post surgery pain and frustrated that she can’t get the support she needs. Unfortunately this is the same all over as chiari is so rare doctors either don’t know about it or don’t understand it. In turn there is not a lot of funding for it so no clinics or support groups. That means you are left struggling to find help which can be scary. She is glad she has Chiari Support UK and at least we have found each other and can help one another.
While talking to my friend she said another frustration she has is when people tell her she looks great when she feels horrendous. She maybe has dragged herself out of bed, popped loads of pain killers and forced herself to get dressed but she has an invisible illness. She doesn’t want to explain that actually she feels horrendous and not going to get better!
After talking to a few of my chiari friends and listening to their troubles I decided to write this. They are struggling to see the light and the positives in daily life and I just wanted to show that I have been there too and can relate. I focus on the positives mostly but I think it helps to highlight the negatives too.
Come and join us at Chiari Support UK
X X X
This week started off doing all the usual things. I had just finished tidying the kitchen and Lauren was watching TV, eating dessert. I had been developing new chiari symptoms over the last few weeks one of them being numbness in my lower spine but it was yet to cause any other problems. However that evening in the kitchen I suddenly lost my balance and fell back, hit the back of my head and my lower spine off the kitchen door and landed on the floor! It’s terrifying not knowing where you are going to land! I was in agony and all I could do was lie there as i have no power in my left leg, so can’t get up on my own.
My daughter Lauren was fantastic, she said ” I’ll phone daddy to get him to come home and lift you up”. She didn’t flap and sat with me until he got home. Grant came running in about 10 minutes later, he says he has never moved so fast!
This last few days I’ve been in agony and felt like I’ve been in a car crash. I’ve been using my microwave wheat bag permanently! I’ve also had to revert back to using my delta frame as my legs are weak and wobbly. I’m really hoping as the bruising goes away so does the weakness and I can go back to using my elbow crutch.
My mantra is always see a positive In a bad situation, so I need to practice what I preach! I’ve spent a lot of time this week stuck to my chair with my beanbag so in turn had a lot of time to think. I decided i was going to do some writing courses and started to research online. I hated English at school but love blogging and have written a book, how times change. The writing courses will take up some of my time and will be something I enjoy which will hopefully help with my depression.
Lastly but definitely not least another positive was my new friend Laura came to visit me for a chat and check how I was after my fall. It’s crazy to be able to say my friend came over. It’s nice to have someone to just chat nonsense to and they don’t mind 😃she sits and listens and genuinely wants to hear about what I’m saying. She also has chiari and suffers badly with the condition so can relate to everything I’m going through. She’s a lovely person inside and out and I’m really glad I have her as a friend.
I can’t write about positives and not tell you about my lovely surprise parcel I got. There was a knock at the door and the delivery man handed Laura this huge box. When I opened the parcel it was a gorgeous box all hand tied with lots of thoughtful gifts inside from my friend Melissa. She sent me it as she knew I was struggling and wanted to cheer me up. It was such a kind, thoughtful thing to do.
Then to finish it off my fab hubby gives me my favourite bottle of perfume.
So as much as a I kamikazed round my kitchen, there were loads of positives too!
Don’t let chiari win!
Come join us at chiari support uk
Love karen x x x
When you spend so much time on your own not working and not surrounded by people you lose all confidence! I was determined that I was going to get that back!!
I am so proud of myself lately I have arranged and met so many new people which I didn’t think I would ever have the confidence to do! It was a scary thought arranging the meet ups but I did it! I was determined to get my confidence back and not let chiari win!!
I first met Laura and margo. They came for a cuppa at my house we had a great time chatting and laura has been back since. Laura and I have since became good friends.
Next I visited Jamie a few times in hospital. I found this really important as I have had the same rare operation Jamie has had and Jamie’s family lives far away whereas we live near the hospital.
Lastly I met Ashley and hollie for a play date. Hollie has had dislocated hips just like my daughter Lauren.
I don’t know where the confidence came from to arrange all the meet ups but I know I want to continue!! Chiari will not continue to take my confidence any longer!!
I’ve also decided that I am going to do a college course. Not only will it help with the confidence but it will keep my brain going!!
The added confidence In turn has helped my depression. I feel more positive and feel I can see more clearly. It’s been a really positive week with lots of nice things happening and I have realised I do have some really lovely friends, the depression just didn’t let me see it!
On my chiari page I have the location spreadsheet so that my my members can find others with the same condition close by. I have done this to build the members confidence and get them local support.
I’m hoping my new found confidence rubs off!
Please come and join us at Chiari Support UK
Love Karen x x x