Help with Chiari Malformation type 1
Posted , 2 users are following.
Hi,
I come from Slovenia – Europe and I am 28 years old. I have
been diagnosed with Chiari Malformation Type 1 this year in September while I
was doing neck MRI because of pains after I was operated on spine. So then they
told me to get MRI of head so they can see if this is real Chiari. So The
Neurologist confirmed Chiari Malformation and told me that my left side works
much bad like the right. I have many symptoms like ( a real bad head pain that
comes from neck and travels to front of the head, trouble with hearing and
strange sounds inside my ears, problems with bladder, problems with balance,
and i have also scoliosis
which is said to be due to chiari.
So the thing is: The neurologist was OK and he say he will send me to do some
neurological test on some institute, but the problem was when I visited the Neurosurgeon,
he had a very rude attitude. He said it is a Chiari Malformation but it is MILD
(but neurologist say it is 10mm) and he will not preform a surgery. Now in
January I have appointment with another Neurosurgeon but I am almost 100% sure
that he will say the same and will not take me under treatment. I am so sad,
because this illness affect my life and I will like to get rid of this problem
that become worse since I had spinal surgery.
I am asking you do you have some information of surgical treatment in Europe,
or some groups for support in Europe, standing/sitting MRI in Europe, cost of
decompresion surgery in Europe, Doctors in Europe or maybe some other information.. thank you
very much.
0 likes, 1 reply
jennifer1979 nejc81841
Posted
i too have chiaria malformation but with block ducts on the brain and hydrocaphelous docs kept giving me antibiotic saying i had mastistious from breast feeding saying i was having panic attacks coz i cudnt see right and always felt sick and weak i kept falling over in work and hitting my head til one day i did and was sick they done a head scan and dound the fluid an chiari sent for more scans and an icp monitioring where they put probes in thro ur skull then they decided cos i had three things wrong to do an etv procedure hoping this wud help fluid flow and lift chiari im still having same symptoms see water everyday prob us some people with chiari have no symptoms but like me n u we seem to get alot most surgeons only do decompression surgery if nothing else and depending on home situation decompression surgery can leave people worse off and maybe not help this is what my surgeon thinks coz now i have fibromayoligy aswell so mightnt help with pain its just a vicious circle now am being sent to a neuroligist for second opinion ??? before i wuda said no to decompression surgery now i want it im 40 with two kids 3 &2 cant work used to be a sport n gym freak now confound ro house alot so i get ur frustration makes the depression worse than ever hope this help ringing in ears i get to sometimes vertigo i also still get numbness down face across mouth nightmare i have is they r is this fibro or chiari me n u both know r bodies i was able to tell them the fibro thing is different sometimes they dnt wanna listen just need to make urself heard goodluck hope this helps