Chiari Malformation 16.7mm Need Help URGENTLY

Hi,

Everything you have listed is exactly the same as my list of symptoms!

I had decompression surgery last year and honestly thought I'd just push through this and get back to normal after the surgery.

The pressure headaches have totally gone but all of the other symptoms are just the same, as the surgery can only stop this condition progressing, it can't reverse any of the symptoms.

I'm so sorry you're having such a hard time, we really need support for this condition but unfortunately not enough is known about it in this country.

I'm thinking of you, take care

Kimberlee xxxxx

Hi hunni, you need to speak to your Doctor and ask to be referred to another Neurosurgeon. Your Malformation is already fairly large and could carry on making your Syrinx bigger. Some of what the Neuro said is partly true, having the surgery doesn't stop the headaches.....for some.

Having the op will not cure Chiari, there is no cure. Also the surgeons can't give us any guarantees on stopping the symptoms, they can only say that our headaches may be stopped or be less severe with the op.

Having the op will hopefully slow down the progression of the condition. Having said that, some people find that all their symptoms more or less disappear altogether. It depends on the individual. I have all mine back but most will be fine afterwards. 

Hi kinkyfix i have just had my op and so far i feel a lot better please ask to be referred to another neurosurgeon i take it you are in England i saw a brilliant one Mr Ashpole who is based in Leicester and Queens med i was told the op doesnt cure you but stops it getting worse anything else is a bonus hope you can sort something out xx

Hi,

Yes definitely like 2dizzydora says, I would definitely ask to be referred to somebody else!

As you're already at 16mm that's quite large. Mine was only 9mm but it wasn't the Chiari that has caused most of my problems, it's definitely the syrinx. By the time I was finally diagnosed, I had syrinx from C1 right down to my thoracic spine! They have caused so much damage and loss of feeling in my arms and legs.

My headaches were instantly gone after the surgery, it was amazing not to have a headache for the first time in years!

It's true, the surgery can't make the Chiari go away, but by having the surgery, it will stop the syrinx getting worse as the flow will be returned to normal hopefully.

You know your own body, and every single person is different with symptoms and recovery, but from the little I know and have experienced, I would do anything in my power to make sure the syrinx don't get any larger!!

I found a great book written by a fellow sufferer, it's got great facts and research and a personal approach too, it's really helped me to understand. It's called CONQUER CHIARI and it's by RICK LABUDA I got it from amazon and it's not to expensive, but extremely helpful.

I hope you get help & support. I'm thinking of you. Take care,

Kimberlee xxxxx

Oh yeah sorry, meant to say, I have a brilliant Neurosurgeon, he is based at Salford Royal Hospital in Manchester and is called Mr Bukhari. Even his secretary is amazing!!

Good luck & take care xxxxx

hi and thanks for the replies.

Luckily my syrinx is VERY small.

I appreciate that chiari is not curable but can be stopped getting worse and that everyone reacts differently to the surgey.

What amazes me is I only know this from research i have done myself and not through the consultation with the surgeon.

I was stunned beyond words to hear the surgeon tell me that all the typical symptoms were definately unrealted to a chiari malformation and were not heard of with this condition.

On the website that he has his services offered under the section chiari it has some of my symptoms which directly contradicts his statements at the consultation.

FYI im in Eastbourne and the surgeon was dr hardwidge of hurstwood park.

thanks again guys. just going to wait for his report and get a second opinion.

cheers

Writen on behalf kinkyfix

Hi,

It's shocking I know, but unfortunately it's all too common a story with Chiari. I also have a list of symptoms very close to your list, and after researching myself on social media sites too, I've made a few friends in my area and have learned a whole lot more!! What upsets me is the total lack of knowledge within the medical industry, and until I saw Mr Bukhari every step seemed like I had to fight my own corner, and at that time, I was in so much pain, fighting was the last thing I wanted to do!!

I think you're so right to get a second opinion, you literally have a list of symptoms straight from a book!!! It's crazy that your surgeon says otherwise!

The research I've done also unfortunately shows that this is all to common, I personally was told I was stressed & depressed and there was nothing wrong with me, after 4 years of crippling pain, but other symptoms going back many years before that, I was finally diagnosed, but unfortunately as the syrinx were so large and advanced, the damage to my spinal cord is permanent and I now am in a wheelchair!! I didn't push enough, I believed the doctors and consultants, cos they're supposed to know better and I even blamed myself for being so pathetic about the pain!

This is why I say, trust your own instincts, you know your body better than anyone.

Good luck xxxxxx

Hi, my grandaughter is suffering too. She had her decompression surgery done 2013 at Kings in London and three days after was discharged with no aftercare whatsoever! We live in eastbourne and the DGH has been helpful trying to find things out for us but you really have to fight all the way. We got her transfered to another hospital by a lovely consultant from the DGH. Would love to meet up if you would like to, I live in Old Town.