Hi and welcome to the Chiari forum.,
Ur breathing issues has me concerned....did u have a CINE MRI? U deff need to see a Chiari specialist and I do not know neone else in Hong Kong that has posted here to offer info on whom to see.
As for playing the violin I used to play yrs ago and if u can play holding the violin in place instead of using ur chin that may help as I am sure that is part of the problem....but I would curtain playing if u can until u r seen....not knowing the extent of ur Chiari the position u r in while playing could be adding to ur problems.
I'm sorry to hear about your symptoms making you so miserable. You will find support here, and I know that one of the most beneficial things for me has been finding that I am not alone, and don't have to be alone, in this journey. Many on here have said that Chiari is life altering. I have found that to be true on many levels. You don't say whether you play professionally or for the mere love of the art. I have been a singer since I was 12 years old. Never professionally, but it was a very integral part of my life, my faith journey, ... I know it may sound trite... but it was part of my spirit. I say was because several of my Chiari symptoms have made it nearly impossible for me to perform anymore. I have recurring tinnitus ( ringing in the ears ), the pressure/pain when I hit a note and hold it out is UNBEARABLE, and vertigo makes it impossible for me to stand on a stage or even to sit on a stool. I truly sympathize with what you are facing.
Here are my thoughts on dealing with change:
1. the only people who enjoy change are wet babies.
2. courage (even in the face of unconscionable change) does not mean absence of fear. it means facing your fears and moving forward in spite of them.
3. regardless of the changes I face, I refuse to merely survive. I intend to thrive in spite of them.
hope some of that helps.
My breathing problem appear early when I was kid, I just need to take a very deep breath regularly (say, every few minutes) at that time, though sometimes fail to relieve the unbreathable feeling. And since at secondary school I sometimes feel pain on my left chest that if I take further breath I feel painful (just like something has blocked at a certain place to avoid me go further). But is was less frequent and happen in time of very wide range, say, once a month to a whole year. Recently, just like today, when I go out to have a casual walk (not to places far away as you know HK is so few spaces) , about an hour I started to breath with force and consciously, until I went to a supermarket with lightings, my condition get worse quickly and gotta get out of there after staying for around 8-10 mins.
I am not professional, but a music student. But I am not very young as I have worked for a few years before I go back to school to study music, as I found that I can’t get away from it even after those years..
The most part I remember, and also scared of, is the spot light when I stand on stage.
word missed...the supermarket is with white* lightings
What is CINE MRI?
Btw, surgery is not recommended by my doctors, as they said, until I have serious problem, like can't walk properly , can't hold things by hand..
On the other hand, I wonder what's the percentage of successful surgery for chiari? How about that of fail cases? Is that doctors in U.S. usually recommend patients to have surgery ? And, how worse is the condition would a chiarian to take surgery..?
I also had breathing issues like I was not getting enuff air...and was and am a mouth breather as a result....when I was 7 my parents had me go for my tonsils and adenoids removed....this did not help the issue, but I have noticed I can breathe thru my nose better post op...but at times still breath thru my mouth as I am sure it is now a habit...
To have a successful surgery I feel u need the right Dr...a well informed and experienced with Chiari and related conditions....I feel my surgery was a success....it was 4 yrs ago today.
A CINE MRI is one that shows the CSF moving instead of a still pic....this helps to determine if the CSF pulsates and if there is an obstruction of flow.
U really need to know if u have a CSF obstruction or a syrinx, or other issue going on.....
Thank you very much. I will do more research and plan about it. I will tell you when anything updated.
And thank Loriann as well. I will bear in mind your words. And.. is there still pain when you sing? Worried about you..singing is amazing. Can it be some way that may possivly improve the situation poco a poco? .. but I'm happy that you are singer..we gotta bring our instruments but, the body of a singer herself is the instrument made by nature. It's miracle. The sound of violin becomes richer through time. I believe the instrument of a singer does as well.
Sorry it's taken so long for me to reply. I have been out of town without my laptop :) Jackelyn, I do still have pain when I sing, and it has actually been getting worse recently. The pressure in my head begins after just a few measures now, and doesn't matter if I'm holding a note for a beat or two only... It no longer waits for me to hit a high note or to hold out a phrase for several beats or measures. My voice has become somewhat "richer", what I would term "warmer", however I have lost quite a bit of vocal range. This issue is (emotionally) one of the most painful for me to deal with. I feel like I've lost a very vital ability... comparable to a dancer being suddenly able to only sway to the music instead of spinning, turning, leaping and fully expressing themselves. (*sigh*). I sincerely hope that the situation may improve with time and treatment, poco a poco. Thank you so much for your concern and kindness. I hope the same for you, improvement over time, with treatment, bit by bit.
How are you? Sorry reply after this long..I am fine, yet always struggling against myself in mind once headaches/vertigo appear.. What ways do you use to fight it? say, the emotions, all negative thoughts...
And, what attitude should I have to face those symptoms? Me now seems like just waiting for the day when it worsens to the state that cannot 'walk' properly.
Are u still playing the violin?.....so sorry u r still not doing well.....
The best way is to talk to others to help keep ur spirits up, and to those that understand like all of us here : )
And be pro active in ur care....to wait until u can not walk is looking to the darker side so ur emotions will reflect what u r doing.....
Thank you so much..
"be pro active in ur care....to wait until u can not walk is looking to the darker side so ur emotions will reflect what u r doing" ---you're right..