Luke's Mam got in touch a few days ago through the blog, and asked me for some help. I read the story of her son Luke, and for a minute I really didn't know what to say. Luke has had it harder already than a lot of us, and still has surgery to go for Chiari, and possibly then onto other surgeries. How could I possibly help a young man like that who is far stronger than I ever could be?

Well, it looks like I could after all and have put Luke's man, Victoria in touch with a good friend of mine on the forums who has been in a similar situation with her daughter. Brilliant news.....I am sure that Anne Marie will offer her usual wonderful level of support and help this family get through the near future.

One bonus too...we have a Cumbrian connection!

Anyway...here's Luke's story (oh...and this one is to be continued!)

Firstly I must say how helpful your site has been to me over the past few days thank-you.

My son Luke (9)was diagnosed with chiari about 12 months ago, its quite a long story!..... About 2 years ago my Mum noticed that Luke had a curve in his spine, as Luke was already seeing a paediatrician for constipation I mentioned it to her on our next visit. She felt sure it was nothing to worry about but had an x-ray taken and referred him to the orthopaedic surgeon at our local hospital in Whitehaven, Cumbria. During this visit the consultant decided it was a scoliosis and also felt it was nothing to worry about but wanted to refer him to another surgeon at Newcastle for advice. At Newcastle we were told that scoliosis was less common in boys, less common to be come apparent at Luke's age and also less common in the way that Lukes spine curved (left sided thoracic). Mr.Gibson (Luke's consultant) therefore requested that Luke have an MRI scan for investigation.

After a long wait Luke had his scan and we were told that Luke had 2 cysts in his spinal column and that he was now going to be referred to a neurosurgeon as I'm sure you can imagine we were all very scared and upset as we presumed everything would be ok following the scan.

Another anxious wait (a neurosurgeon sounds so scarey!!) Mr Nissen was so nice and explained everything to us, Luke had 2 syrinx a large one (extending from C4 to T2) and a second smaller one (extending from T5 to T9) also that he had mild cerebella tonsil descent. He did lots of reflex tests on Luke (there was only one that he didn't respond to) and asked lots of questions about headaches, discomfort, pins and needles etc, fortunatley Luke doesn't suffer from any of these. Mr Nissen requseted another MRI scan this time to include Lukes head (which we later found out that he was checking for tumours) which only showed Lukes chiari.

Mr Nissen explained that if Luke were ever to need the operation to straighten his spine for his scoiliosis that he would need to operate on Luke chiari first otherwise as Lukes spine was staightened it would push up into Luke brain. As far as Lukes scoliosis it was being monitored for any progression. At out last appointment in August (09)Mr Gibson felt that Lukes scoliosis was progressing mildly but from study that when Luke has his early teen growth spurt that there could be a big increase in his scoliosis and he felt there is a significant chance that Luke would need surgery.

During our Sept (09) appointment with Mr Nissen he requsted another MRI scan (asap) which we had last week and fortunatley it was arranged that we saw Mr Nissen in clinic that afternoon. Following on from Lukes MRI earlier in the year his syrinx were slightly smaller but after this more recent MRI they had increased in size again, Mr Nissen says that this can happen and also said that Lukes chiari was mild.

Mr Nissen has therefore decided to operate(although he did say he needed to also speak with Mr Gibson and the radiologist). He is the only consultant at Newcastle General that operates on youngsters and says that every case is different and every case is treated as individual.He has operated on 12 youngsters and 10 have been succesful with little complications. The 2 other cases he felt would be difficult as the scans were very complicated and the children had other problems. Mr Nissen asked how we felt about the surgery and I feel we must go with his advice so Luke has now been put on the waiting list for surgery.

Now having come away and waiting for 'the letter' lots of things are going through our minds (we obviously have a very uptight and at times very angry Luke). We have spoken to Luke's school about it and his class teacher has been very supportive (Luke doesn't want his friends to know as he doesn't want them to make a fuss).

Unfortunatley when we 1st found out about Lukes chiari I researched it and lots of things I read about were American and VERY scarey!! Things like will Luke need to go to intensive care/high dpenedency following surgery? how long will surgery last etc.I am also concerned that we will be a 2 hour drive from home so Luke's visitors will be minimal (which I'm sure would be a little tonic for him!).

I wonder if you have any other members in the same situation as us or if you could guide us in any way. We are trying to be truthful with Luke without making it too frightening for him.

Sorry if this is all a bit waffley !!

Victoria and Luke Garroway