I have a rare disease, Jealous?

Welcome to the first Chiari Carnival celebrating Rare Disease Day.

Hello to any new readers.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you? I was diagnosed with Chiari on March 31st 2010 and I was 21 years old at the time at the time. I had been having symptoms for years but they all suddenly hit me then.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation? I have Pernicious Anaemia, scoliosis and High pressure.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery? I became a zipperhead on July 29th 2011. This means rare disease day is my 7 month zipperversary I am currently awaiting surgery to fit a shunt, which should be very soon.

Western medicine focuses on medicine and medical procedures. However, many people benefit from 'alternative' therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief? I have not tried too many things but I find massage helps with my back pain and heat helps with my neck pain.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom? I don't think I really have an odd symptom. Mine are all pretty standard. One thing I do have is a VERY bad squint, one of the worst my eye doctors has seen. It isn't too odd, but is pretty extreme.


Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don't understand. What would you like others to know about living with Chiari? Remember that just because someone paints a smile on their face, it doesn't mean there is not pain hidden under the mask. I will often try and protect people I know by acting like I am fine, when really I am in bad pain. I am the typical British person, keeping a stiff upper lip, most of the time.

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude? I love to bake and sew. I also run a active chiari group on facebook, full of people who will drag me out of any dark place I fall into from time to time.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration? I love quotes, I have so many I could share. I will just find a few.
"I swim for brighter days,
Despite the absence of sun,
Choking on salt water,
I'm not giving in,
Swim." Swim- Jack's Mannequin

"Sometimes your circumstances suck, but life doesn't." Andrew McMahon

"Before I criticise someone I walk a mile in their shoes.
That way, if they get angry, they are a mile away and barefoot!"

Update on appointments so far.

Turns out I am unable to sleep quite yet (how surprising) anyway I was at Kings yesterday. Left the house at 7am for a 10am appointment (I hate London sometimes)
So I see the doctor who took a full history properly from me, went through everything. He told me I was complicated (I already knew that) basically, he said it is obvious that my pressures are still going crazy. He also did some crude eyes tests which show a marked deterioration in my vision since October. I am really upset about this because SGH had a chance to stop this and chose not to, that and I need my eyes.
I am had a CT scan today and he is going to talk to his boss doctor to check his plan, but basically he doesn't want to hang around with this as my sight is getting worse so quickly. He is going to get some records from SGH, and contact me in the next few weeks. He wants to admit me one day, do the LP and then if the pressure is high he will arrange a shunt to be done before I am discharged, within a day or two of the LP. Those of you who don't know I am in Southampton and my hospital is London, which is about 90 miles and so he doesn't want to do the LP, send me home only for me to have to come back up (spending £50 on travelling)
Also, my pulse has always been a little bit silly, goes very high with no reason to, pretty common with chiari. Yesterday it decided to play silly buggers whilst I was having the pre appointment checks with the nurse. Was bouncing around between 140 and 170BPM and they didn't like it, not with my normal blood pressure being about 95/50 ish. Anyway, Southampton ignored it but he sent me for an ECG this morning at the hospital and has put me on the books to see a cardiologist if the shunt doesn't reduce the pressure and make my heart behave!
So that is a rough guide of what has been going on.
I am seeing my eye doctor on Monday so will update on how my eyes are doing. Have a wonderful day!

Busy!

So in the next little while I am having lots of hospital stuff done. I have a neurology appointment tomorrow, in London at 9.45, Wednesday I have a CT scan, next Monday I have an eye appointment and the following Monday I have an appointment (the only on unrelated to chiari) to arrange having my wisdom teeth removed.
All in all a fun time =/

The hardest post I have ever written.

21st August 1978- February 8th 2012


This week has been tough for me, in fact tough for many people in the chiari community. This week we lost one of our own, on of the best chiarians I will ever have the pleasure of knowing.
Heather Andrews was a fantastic, sweet, funny and all round amazing person. She chose to help anyone who needed it, without a second thought.
She spoke to me for what must have been hours when I was in hospital this summer. She normally succeeded in making me laugh in the dead of night and get me a right telling off from the nurses. She made me feel better when I cried and see the light at the end of the tunnel when I was at my lowest. We talked for endless hours about the surgery I had just had and that she was soon to have. She faced it with the same attitude she seemed to face everything else, showing only brief moments of uncertainty, normally privately and quickly slipping it into a discussion. She was one of the worlds special people that once you have spoken to, you want to cling on to everything they are saying. She lived thousands of miles from me, we never met. We talked about our connection with Ireland, her love of Guinness and my total hate for it, her love for brown sauce and my hate for it. I think she should have come from here rather than me. We talked about meeting when she came to Ireland or England. We talked about me NEVER going to Las Vegas because of my fear of gambling my every belonging away. She made me laugh till my brain hurt and recently cry till my brain exploded.
Heather had her surgery back in November, I remember getting excited when she like my comment on her wall the day after her operation. She went back and forwards from hospital, having 10 operations in the following 10 weeks and then last week she slipped into a coma that even a strong person like her could not fight her way out of. She passed away after doing the last selfless act and donating her organs. I for one will always remember her and though she has gone I will cherish what she taught me about grabbing every opportunity with both hand. So to a true chiari fighter, I <3 you!