Hi

I have 5 year old daughter who have been diagnosed last. week of having Arnold Chiari (1). We saw a Neuro Surgeon the day after received a phone call from the hospital who took the initial MRI scans.

Those 24 hours were all of a blur as you could imagine fter getting the phone call and reading up on the condition before we saw the a Nero Surgeon.

He explain the condition and the whys and wherefores and surgeryed the best he could to non surgical people. My duaghter has been put on a wating list for a further MRI to 'dot the Is' and 'cross the ts' as he called it to check for .

Obviously we are in the hands of the surgeon but would welcome some independant advice at this stage, as surgery scares the living daylights of us.

We managed to get away as a family over the new year. The first time that we have been away at that time of year, but we own property in Lanzarote, so it was a little easier than usual.

We had all been working hard all year, and I had been feeling the pressures of working lots of stupid hours on a website launch.............so needed a break.

I had also started on a new course of meds which were getting me down. I was taking Gabapentim and Amitriptylene to help me sleep and then be able to get up in the morning without feeling too achy and stiff, and having to wait an hour before my body woke up!

Anyway......2 days into the holiday and I stopped taking the Gabapentim (nervously) but I felt like I didn't need it. At the end of the 2 weeks, I hadn't taken any, felt much better and was sure it has to do with the warm weather.

Well I started back to work at the beginning of January after nearly 18 months off.

Difficult to get back into it initially? Very much so!

Getting a basic level of fitness back in order to get through the day has been the toughest. You do not realise how quickly you do lose your fitness levels by leading a sedentary lifestyle, even though you might have led an active life before.

The muscle groups and condition that you have previously taken for granted all need work to make them work again. I had aches and pains galore in the first few weeks, but thankfully they are all now subsiding.

I have been to my second opinion appointment at Walton last week and have some great news to report.

I decided to go for a second appointment because my last NS wrote me off with physio and rehabilitation even though I still had progressive symptoms with regards to motor function in my hands and fingers, lots of pain in my upper spine, muscular pain in my back and neck and constant heavy fatigue, due to lack of sleep but also because everything that I did seemed so much harder to do.

I went to Walton and saw a great Registrar who wanted to carry out a full body MRI to rule out any issues further down my spine. (This had not been done previously......which I was slightly worried about)

I haven't been on the blog for a while, and for that I need to apologise. I have returned to work recently and have been putting all of my time (and energy) into this for the time being.

To be honest, I have been too exhausted and too busy to do much else other than concentrate on geting back into it.

My reasons for returning to work are just as much about taking my recovery to the next stage, just as much as trying to repair my financial situation, having been off work for around 18 months.

I originally went for the interview for the role 8 weeks after surgery last June 2009. I am not one to stand still. In the end there was a hold on recruitment until the end of December, and I responded to a call that I received and accepted the role more or less straight away.

The last 7 days has seen 5 friends from the Chiari forum attend appointments for decompression surgery. Two of them have already been sent home after a very successful surgery and a very fast initial recovery proving just how effective that having a positive attitude can really help. Two unfortunately have had their surgery postponed until later in the year and early in the new year, yet remain positive. Another has had a troublesome time with their own surgery, but today I hear that they have made lots of progress over the last 24 hours and are being told that they can contemplate going home.

I think all of us have experienced the start of the cold weather this week. It can be a real issue for those if us with already aching muscles and joints.

For those of us with relatively new surgery scars it can be painful too!

So, is it just that we need to apply common sense when we venture out, or do we need to exercise a little more preventative caution?

From my own experience, it is often too late to do much prevention when we are already feeling the effects of cold. Some people fall victim because they are fashion concious and some because they are just ill-prepared. Feeling the cold means that you are at risk of suffering more pain and stress than you need to.

Tomorrow marks the day when 3 of my friends should undergo decompression surgery, I am saying "should" because for one of them tomorrow is round two after having their surgery cancelled last week at the last minute. For another, they have their own round two on Friday after a similar story.

Four people in the same week, three of them on the same day and they say that Chiari Malformation is a rare condition?

I wish Ian, Laura and Rachael the best of luck for tomorrow and Suz for Friday / Saturday! I will be thinking of all of you!

Remember water and PMA!

Well, its been all go here! Apologies for not posting, have been trying to sort my life out a little.

I have never been this busy even when I was working!

More will be revealed at a later date - but suffice to say the future seems bright!

I also seem to have hit a brick wall or at least the pain barrier with posting and driving the blog. It takes a heck of a lot out of me, and sometimes I just need to sit back a little and take a rest from it.

If anyone would like to help out and possibly "guest post" some articles on here, then that would be awesome!

I am still looking for stories, especially those from carers or parents or partners of sufferers? Please consider helping out this way as it is an amazing tool to help others connect.