Hi and welcome to the Chiari forum.
Were you given a Chiari DX? If not, what cerebellum condition DX were you given?
Do you see any marked improvement with the class or does it cause symptoms to worsen? If it helps or you feel ok, I would say continue......but do look into what the condition is called and how it is affecting your overall health.
i a 72 tears old suffering for celeberrum condition everything looks pariatial normal felling except for balancing and slow turning and moving .....i am under theraphy class..... is it worth to con tinue my theraphy lesson ......
No problem :) Thank you so much for all the help :)
I am not sure but I will see if I can find out for you....it may take a while but I will let you know : )
That's what I thought you were talking about :3 No, they found a build up of something that they're guessing Is calcium :/
I don't think they found that, what tests do they do to find it? I'm only getting half of the usual dose because of my age :3
No Drowsey is when you are tired and can not hold you eyes open.....I have heard of others having calcium deposits not sure where they were or if they were behind the eyes.....
Pseudo tumor cerebri is excess CSF fluid that can build up on the brain and the symptoms mimic a tumor..which it is not. Diamox is often used to help reduce the amount of CSF.
The grand gives away that you're irish xD Yeah, she replied to both of my questions and is really helpful so i understand :D Thanks for the links ^.^ And I'll try to educate myself as best I can :)
My doctor said drusey ( mom records it as she's forgetful) but I looked it up and couldn't find it anywhere so i was really confused O.O Is drowsy a build up of calcium behind the eyes? :3
what's pseudo tumor cerebri? .-.
The last doctor who did one was really good, it took about half an hour and he filled four small vials so i didn't mind him as he also made me relaxed but he was only temporary and gone now so I'm not sure if I feel comfortable with someone else doing one..
I was hoping that is what it was...thanks Ray <3
You are doing grand, ask your questions that is why we are here, they are NOT silly or stupid. We all have experience of negative clueless Doctors.
I have sent you a private message with a link to some educational videos on CM. Size is not the main worry with CM, overcrowding causing fluid blockage is the problem so do not let your Dr;s pull that on you. So there is way more to CM than the normal 5mm criteria Dr's use. Educate your self and ask questions.... .
That's drowsy Selma!.
Selma is our community leader HeloiseOS or as I call her "cyber mom" lol
Hi,,,,we are seeing your reply so you are doing it ok....
May I ask what is drusey?....
Yes many do get the optic swelling.....sometimes it is from the Chiari alone...but it can also be a related condition known as pseudo tumor cerebri....
Be careful letting them do a LP on you especially since they do not seem to know much about Chiari if they draw the fluids too fast it can pull the cerebral tonsils down further...causing symptoms to increase.
This is how you reply I think
I have no idea if this shows there's a reply or not to a comment so I just hope it does :/ Thanks for the reply :) I've been noticing little things like headaches and dizziness etc (almost all the chiari symptoms) for a few years so I'm glad that I'm not going crazy and that there are others who are going through the same thing .-.
Yes, I noticed that the doctors were a little dismissive, they discovered I have papelodema and drusey aswell and so they kind of shoved me at the eye doctors and I haven't seen a neurologist yet :/ I was going to but then my pediatrician said I didn't need to..
Oh, sorry my doctors kept going on about how it wasn't that important because I barely had chiari malformation by 1 mm and they've done an MRI of my head but none of my spine :/ They also said i was the first patient in the hospital with this condition so i don't think they really know what to do except monitor it. They didn't even mention surgery..
Today the eye consultant gave me diamox tablets to get rid of some of the fluid in the brain so that there isn't as much pressure there (though they did a lumbar puncture *without any anesthetic D:* and they discovered the pressure was normal but when they found out I had chiari they decided the pressure probably fluctuates so they'll have to do many more LP's)
I was also wondering if many people with chiari had papelodema?
Thanks again for the replies by the way! :)
Hi....like the above poster mentioned it is not the cerebellum but the cerebral tonsils that may continue to grow....length is not the concern it is the width and if they are creating a CSF obstruction....the longer they are does not mean the more issues, as some with smaller almost no herniation can have more immediate issues and symptoms.
Related conditions need to be looked for and ruled out b4 surgery is considered as they can affect the outcome of surgery and recovery.
Most with Chiari are type one...meaning they have a malformed skull which forces the cerebral tonsils to herniate...the other types have other issues that would be noticed at birth and type 2 is more commonly known as Arnold Chiari....type one is just CM.
In recent reports Drs are reporting they feel that many who have Chiari may have a disposition to also have EDS and Chiari is a result of having it....EDS or Ehlers-Danlos is more then just having hypermobility and can be one of the top reasons surgery for Chiari can fail.....knowing and using precautions during surgery can minimize post op issues.
Educate ur self and know that u r not alone....ALL of us have a hard time locating a Dr...but with persistence we do...
You are quite young .,so it is natural that you dont know much about an ill known condition even to the medical fraternity .
Hence Please dont feel that you might sound like stupid when you ask some questions on chiari here .
People like selmaS are very helpful. They would answer it as best as they can and as and when they are free .
Reg Drs saying that they will have to google .
1.*There is no surprise becoz till date Chiari.,/ its effects/ and co-existing conditions like EDS (name of a connective tissue disorder)/syringomyelia/Intracranial hypertension etc., are not known to
many drs ...except might be chiari specialists who have successfully handled multiple chiari cases .
2.Also some drs dont take it seriously but dismiss it as something which is
congenital and harmless like having squint eye /bent nose etc.,
.coming to your question
1.As far as I know the cerebellum is not measured .....but cerebellum has two tonsils bilaterally and they are me asured .
2.I think that by asking *** My brain isn't developed fully will cerebellum grow? ***you mean to ask if your bilateral cerebellar tonsils might grow in length as you grow older .
reg Chiari malformaiton I shall answer as much as I know..
sorry that I might not be 100% accurate ..
1.Tonsils might grow or might remain the same or in extremely rare cases might regress fully without any treatment.,
2.The measurement of the tonsils does not count much.
3.It might be less than 5 mms or more than that or in few cases might even be zero.
4. But from what i have read widely., It is an old school of thought that the longer the tonsils the greater the impact .and that the other cases of lesser measured tonsils dont need treatment .
5But the fact is that in some cases even zero chiari( the tonsils which measure zero) might causes severe symptoms blocking the flow of csf .
6.So what counts is the fact that the tonsils might block the cerebro spinal fluid(csf) flow and cause serious symptoms day in and day out .
.7.If not addressed also in the due course of time csf blockage might cause damage to the nervous system and organs by forming a syrinx inside the spinal cord ...This condition called syringomyelia .
8.Again.... this syringomyelia might have been there already since birth along with chiari
.In short syringomyelia can also be congenital along with chiari
,9.so if any one is diagnosed with chiari the drs need to check for the presence of syringomyelia through full spine MRIs
Coming to the treatment.
1.In cases without syrinx some Drs choose to wait .,
They look mainly into the severity of the symptoms ,/ the impact on the present quality of life / and if it is left untreated what might happen in the future ./
2.,.Usually they go for surgery as soon as possible if they find a syrinx.,and if they feel that it might be responsible fr the severity of the symptoms .
3..Some drs have a **wait approach **even for patients with a syrinx which measures less like say ., 1 mm /2 mm etc.,
so it depends on the drs .
4.But It is *very Important* that the dr is aware of not only chiari but also of the conditions that might co exist along with Chiari .
5.They need to test them as well .and plan things accordingly , Otherwise even having chiari surgery might not help the patient fully .
few other points .
1.some other dieseases and disorders might mimic symptoms of chiari .,(like Disc degenerative diesease) .and it might co exist so it is important to ascertain if chiari alone.is really causing the problem or is it something else along with existing chiari .
2.There is no permanent cure to this condition ..
3.Surgery is perhaps the best and Only way of treating the condition .But there is no 100% guarantee.
Hence repeatedly remember that it is VERY IMPORTANT to consult drs knowing this condition very well..and have treated patients successfully .100%Dont blindly jump into surgery expecting a full cure .
Reg surgery
..
Drs take a call for surgery based on Cine MRI which depicts the cerebrospinal flow .,
Reg this condition in brief ...
1.This condition is thought to be mostly congenital .,The symptoms are known to be triggered after some trauma .
2.,In some cases there is no reason or very minor reason like sneezing which bringforth the symptoms of chiari to the surface
3.In few cases Drs think that it is also acquired after whiplash injuries in accidents .
4.It is also refereed as *cerebellar tonsillar ectopia. by few drs .,.But Arnold chiari malformation is the common well known name .,
First and foremost dont have much anxiety and fears
.,But do know about it as much as you can .Because it helps a lot.
Medicine has advanced greatly ., Like I said it is treatable and a reason for you to cheer up is that Youngsters have the most favourable results .