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Chiari specialists in Ireland

Hi I was wondering if there were any Chiari malformation specialists in Cork or near? I don't know where to find them online and I'm recently diagnosed .-.
13 Responses
999891 tn?1407276076
Hi.I live in Cork :)
There are 3 Consultant Neurosurgeons in Cork University Hospital, none are experts on CM, the nearest we have to a Chiari expert is Prof Ciaran Bolger in Beaumont Hospital Dublin.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

We do not have a list for Ireland but we do have other members in Cork so mayb they can help you....not sure there are true Chiari specialists there but you may be able to find a Dr that is familiar...and that is not what you really need....sorry wish I had more to offer...

May I ask what symptoms you have been having?
620923 tn?1452915648
COMMUNITY LEADER

  Thanks Ray <3
Avatar universal
Thank you :) One of my neighbours is a cousin but she's more of a GP and I have a few cousins who are doctors in Cork but none of them specialise in the brain or anything so they don't really know how to help :/
No, I appreciate the reply, thank you :)
I wrote down some of the symptoms I've been getting after they did the MRI
*Photophobia (Any bright/flashing lights)
*Headaches (back of the skull and behind my eyes but that could be the papelodema)
*Dizziness (Especially when I stand up)
*Back of neck and shoulders pain (knots)
*Difficulties sleeping (I wake up at 7/8 am,  10/11 am & about 1pm/2pm so i get very broken sleep)
*Fatigue
*Nausea
*Shortness of breath lately/tired easily (even though I'm physically very fit and do a lot of sport)
*Blurred vision (spots of dark or bright spots in vision aswell)
*Abdominal pain often even when I'm not on my period (and not in the right place)
*Balance problems (swaying when I stand up or something)
*Body weakness in arms and legs (mostly legs as I can run and sprint but if I stand for too long (more than 10minutes)  then i get headaches and dizziness)
*********Chest pain (Most painful, it's like in between my ribcage "closes up" and I have to stay completely still for a minute or two and lie completely straight)
*Hoarse/rough voice sometimes
*Forgetfulness (and confused easily as it gives me headaches)
*Moodswings (Irritated one second and fine again the next)
*Sort of gagging (bile raising in my stomach but no vomiting)

Those are the ones I've written down so far (I started three days days ago)
Avatar universal
You do? :D That's so cool :) Are there any groups or anything around?
I had an appointment with the eye consultant today and he was shocked that i hadn't spoken to a neurologist so he's making one for me with either the pediatric one Olivia or the adult one, whichever will see me faster :3 Mhmm sister goes to college in Dublin so i might be able to see him in the future, thank you :D
999891 tn?1407276076
No problem, we have a few here on MedHelp from Ireland, one from Cork. I sent a message to them to get in touch with you. We dont have an organised group as there are not many wjth CM in Ireland :)
620923 tn?1452915648
COMMUNITY LEADER

  Many with Chiari also have acid reflux or GERD...so the issues you mentioned about the  gagging is not surprising at all....there are many related conditions so you will need to have more testing and many of your symptoms are in line for someone with Chiari.

It is good to keep a journal....it is easier to  keep your Dr informed as we do tend to forget once we get in their office....

Avatar universal
Thank you very much! :)
Avatar universal
My dad said if was acid reflux and that milk would help but he said he had that aswell so if could just be genetics?
My doctors aren't mentioning anything about any other tests, they just want to make sure the swelling in my optic nerves goes down, but they did another test today and it's not going down..
Yes, I get a bit flustered and just hand my mom a page with  the questions I have xD..
Avatar universal
Hi , I'm 25 and have just told that I have chairi 1 I'm heart broken and scared and it explains so much - even my job is pushing me away - it's my dream job - can I love as normal until I get seen - am I best to go public or private ? Anybody have any advice - living in Dublin
999891 tn?1407276076
Hi and welcome :)

I understand how you feel, It is a scary diagnoses.
I would get a copy of your MRI scans and medical records.
If your work is impacted by your illness then you need to talk to your doctors and see where you go from here,
You need a good Neurosurgeon, they are few and far between in Ireland, I think we have 5 in total so go privat if you can.

I have heard good things about prof Ciaran Bolger in Beaumont Hospital. I think he works in the Hermitage Clinic as well
Avatar universal
Hi welcome here., sorry that you are here.
yup you are so right in saying it is a very scary dx.I t is difficult for ourselves to understand it because the symptos are so many in number and unpredictable and making  other believe in the problem is even more difficult because on the outward people with chiari appear like every normal person.
can I live as normal till you get seen is you question as i understand( though you have typed is as*love normal*).
My advice is that you try to live normally because one cant live always with fear and too much planning.
but always bear in mind that certain activities can increase the symptoms and be extra cautious as to think primarily as to the activity would affect the chiari in anyway.
If your job is impacting your symptoms then you need to think and assess how far it is worth to pursue it and think of other alternatives You can also assess if having surgery or doing the activities associated with job in a better way would allow you to continue the job.This has to be done with consultation of  nsg knowing chiari..I know this chiari part is very hard but sometimes life throws situations without much choices.Hang in with hope and mental strength .
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

rod44 is good for info on Drs in Ireland and has broad shoulders too....great listener and offers a smile on bad days so you tapped on a good one there....

If there is any way I can be of help let me know....know you are not alone with this frustrating and scary condition...
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