Spica Warrior

I couldn’t believe my eyes when I opened the box! This shiny white book with my name on it looking back at me. It didn’t seem quite real ???

I have written Spica Warrior due to my Daughter having bilateral hip dysplasia as a child and undergoing 5 huge operations and 18 months in a cast. I wanted to use my experience to help other families and make sure no more kiddies were scared when they heard the word “surgery” again!

I’m so so pleased with how the book turned out. I was so worried that I couldn’t get what was in my head to paper but it all went to plan. Lauren’s surgeon even wrote the foreword. 
We started a Facebook for the book ” Spica Warrior by Karen Kerr” and started selling the book on Etsy. I can’t believe how popular the book has been and the reviews have been lovely. It’s great to know that the book is useful and people are loving it!! 
I’m so proud of what I’ve achieved and I’m so glad I’m helping all these families and these wee kiddies. The more families we can reach the better so keep spreading the word!!!
Lots of love karen x x x


Chiari and Change!

Over the last nearly 4 years my life has went through so much change, some good, some bad! Chiari has definitely changed my life forever. At first I thought my life had ended but I feel if you embrace change and have a positive mindset thinks can happen for the better. I believe everything happens for a reason! I also believe you’re not given anything you can’t handle!!

I went from working 40 plus hours a week, in charge of loads of staff, completing paperwork and dealing with unhappy customers. Plus running a house and looking after a 3year old. 

I then went to being stuck at home alone all day every day, looking out the window. My mobility really poor that I’m falling all the time and in a lot of pain. All I have to do is watch garbage on the TVs and my mind seizes up!!
I thought no I’m changing my mindset, think positive! Change your life! Try and get out of this dark hole!

I looked online and joined the Glasgow Disability Alliance who get people out and enrol people in programs to help them with their self confidence. I’ve met so met people and made friends. I’ve been put on the “future visions program” which is ten weeks of coaching and self help and things for me!

I’m doing distance learning course with Reid Kerr College. I’ve completed 3 already and currently doing introduction to counselling as I want to volunteer in the future and help others like myself. 

I’m currently trying to arrange funding to do an Open University degree starting in September. 
These are some of the examples of what you can do when you put your mind to it and decide that Chiari is just another condition and you’re not going to let it win. Sometimes people think “oh there’s no point” but there is!! We are only young and we have our lives ahead of us and we need to do something about it. It’s just a matter of finding what interests you and what’s in your area. 
If anyone needs any help please drop me a message. Don’t fight alone!!
Love karen x x x

Chiari support is growing!!

We are nearly at 350 members!! I never thought I’d be helping so many people! When I was going through my chiari journey I had no one and that’s the reason I started this page. I didn’t want anyone to feel alone and scared like I did! I really hope that I continue to help as many people as I possibly can. 

Ill just tell remind you of how i got to where I am. I’ve been having headaches since the age of seven but wasn’t diagnosed with chiari malformation until I was seventeen. I continued to suffer with the pain until I had my Daughter Lauren. After my pregnancy I had an MRI, they said my chiari malformation had worsened and I’d developed Syringomyelia. They reckoned they weight of the baby during pregnancy caused this. They said I would require surgery immediately. However I was due to get married in two months time!!! 

I got married in August 2013 and had my first decompression surgery in September 2013. The surgery wasn’t successful, I took a reaction to the dura patch they used and developed meningitis and the cerebral tonsils that they shrunk fell back down. 

I had weeks of antibiotics. All my veins collapsed and they ended up having to put them in my feet!! 

Once the meningitis had gone they tried decompression number two where they amputated my cerebral tonsils. This time they didn’t use a dura patch!  

The surgery seemed to have worked and I got home. 

When I got home I didn’t seem right. I was home alone. It was New Year’s Eve and I made myself lunch. I walked from the kitchen with my plate and glass and the next thing I collapsed. I woke up in a puddle of blood. The glass and plate had broken and I’d glassed myself in the face. I managed to get myself onto the couch. I think I must have a guardian angel as no one was due over but at that moment my aunt walks through the door!! She starts screaming when she sees all the blood and phones and ambulance. I’m blue lighted back to the hospital and on New Year’s Day I have decompression number three. 

After that I’m still not feeling well so they do a Ct scan and they see I have hydrocephalus so now I have to go for further surgery and get a VP shunt. 

Due to being bed bound for so long they send me to the physical disability rehabilitation unit to learn to walk again and build up my strength. I eventually get out of hospital on April 2014!!!

The first 8 months of my marriage I was in hospital!!!!

I then had to return for a week a few months later to have a syringal pleural shunt fitted due to my Syringomyelia. When they fitted the shunt I lost the feeling in my left leg from my knee downwards. 
I’m hoping my journey helps me help you 💜💜💜 
Please don’t be alone because you don’t have to anymore x x
Lots of love karen x x x

Chiari and a little help from your friends

As you all know I’m struggling from severe depression. I honestly wouldn’t wish it on my worst enemy. There’s no escape or relief or anywhere to run and hide. My only time I’m at peace is when I’m sleeping. 

Depression also makes you feel very alone. However this week felt quite different. A selected few people seen how much I was struggling and wanted to show me that I wasn’t alone and I didn’t need to fight this alone. It felt as if a bit of weight was lifted. 
These two special ladies sent thoughtful presents to cheer me up. They had put a lot of thought into them and took a lot of time to put them together which meant a lot. 

These same ladies seem to know when I’m at my rock bottom and send me inspirational messages to bring me back up. 
They have gave me a bit of a spring board to help me get myself out of the deep hole that I’ve been in for a very long time. It’s making it easier to see the positives. 

From Monday it’s been a more positive week than it’s been in a while. I usually get moments during the day when I feel down, when it feels like a dark clouds came over me. I’ve not felt that this week, which is great! 
I’ve put some positives things in place for the near future to try and keep me focused and positive. I have enrolled to college to do some distance learning courses to keep me busy and keep my head going. I have a trip to Dumfries at the start of April to see family and the Chiari girls. I am then going to apply to the Open University to do the Sociology degree. I’ll continue to think of things to keep me busy, focused and positive. 

I have chiari, Syringomyelia, hydrocephalus, I don’t produce steroids and have had 15 plus brain ops and would rather that than depression over and over! It’s a horrible illness!! 
I just wanted to show how thankful I was for the help fighting the illness because I need all the help i can get. 

Thank you Lisa and Lynsey x x
Join us on chiari support

Love karen x x x

Chiari and depression go hand in hand!

“The difference between you and me is that when you wake up , your nightmare ends”

That quote sums up how I feel on a daily basis!
I thought I would only have to deal with physical pain. I never thought when I had my surgeries I would have to go through a daily mental struggle too! Chiari is an invisible illness and now you are fighting another. Depression is so difficult to fight because you can’t see it and you don’t know when it will strike. 

Depression is such a lonely illness. I want to be alone but I don’t want to be lonely!

“I am the type of person that will sit in the bathroom and cry, but then walk out like nothing ever happened”

That quote really sums up how I deal with my depression. I think a lot of people can relate to that quote. You don’t want anyone to see you cry because you don’t want them to ask you what’s wrong. The truth is you don’t really know what’s wrong yourself! You are also scared of what advice you might get!

” You can’t just wake up and say oh, I wanna be happy, and be happy! Believe me, I’ve tried!”

It’s like telling someone with cancer to get better, it just can’t happen!
The worrying thing about it is you don’t know when it will go away, or if it ever will. If you have a cut or bruise you know in a few days it will be gone. You don’t have that luxury while suffering from depression. In actual fact it might never go away, and that is a horrible thought. 

“You feel like a prisoner in your own mind”

The trouble is it’s all in your head and there’s no escape or respite, it’s 24/7. If you have a headache you take some painkillers and get some short term relief. Instead it’s a struggle of flashbacks of things you don’t want to remember. 
The only escape is sleep. If you’re sleeping, you’re not hurting. On my worst days I find myself going to bed earlier and earlier because I know sleep makes it all better. 

I can only describe my current state like being at the bottom of a big black hole trying to get out, while I watch the world go by living their lives. Its hard sometimes when people are only there for the good and not there at the black hole with a rope to help you out. It’s okay though while looking up I’ve seen the light at the entrance of the hole. 
The two pieces of advice I could give is there is always a light at the end of the tunnel so continue to think positive and remember it’s not your fault! Depression is an illness, don’t ever feel it’s something you’ve done or not done. 

This blog is the most honest I’ve been about my feelings. I have wrote this in the hope it helps other chiari sufferers. 
Join us at Chiari Support 
Love Karen x x x

Chiari – no one knows!

So what actually is chiari??
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
From speaking to many fellow chiarians the most frustrating thing is going to a Doctors appointment and you knowing more than the Doctor about your condition. It’s even worse when they bring up google on the computer. It doesn’t fill you with confidence!!! It would be nice to go to an appointment that you don’t need to teach the Doctor about chiari. 

Recently I attended accident and emergency due to my worsening chiari symptoms. I had to wait six hours to see a Doctor so I was tired and in agony and just wanted to lie down! Eventually I was seen by this young Doctor who greeted me with ” I hear you have a headache”. So you can imagine how angry that made me!! Then she says ” I see you have a shunt so that’s because you have chiari?” I say no that’s because I have hydrocephalus. By this point you see the Doctors eyes glaze over. She then says so I think I’ll phone ward 64 as they know your condition better. So I wait six hours for that! Unfortunately it happens all the time! 

On a more positive note I got a phone call from my GP. She said she had medical students doing neurological research and she thought of me. She asked could she bring them to my house so I could teach them about chiari, I jumped at the chance! Any opportunity to raise awareness or educate health professionals is priceless!She brought 5 medical students to my house and I told them about my journey and all about chiari. It was great to have people genuinely interested and asking questions. They said it was interesting and useful. I also told them about the Chiari support page and I told them to read my blogs to get a better insight into the life of someone living with chiari. 

I understand and relate to the frustration and have experienced it myself. I’ll continue to blog and take every opportunity to raise awareness and educate people on chiari so that less people have to experience that frustration in future. 
Please join us on chiari support

Love Karen x x x

My chiari journey

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!! 
Love karen