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chiari and hiatal hernia?
I used to post on this forum back then because of my unusual symptoms and to get advice. I haven't been to a chiari specialist because of being in debt and not working. I'm hoping to see one soon because my symptoms seem to be getting worse. So far they are blurred and static vision, as well as seeing after images, buzzing and ringing in my ears, fullness in my ears, constant pressure at the back of my head, i lose my balance, undiagnosed sleep apnea, anxiety, neck and back pain, depression, and just recently last year I was diagnosed with a hiatal hernia when i had a colonoscopy. I just want to know if a hiatal hernia is a symptom of chiari at all..?
COMMUNITY LEADER
Ask about the Nova Som sleep study and oxygenation testing that can be done in your home....it is over a longer period (3 days) and in the comfort of your own home so more accurate assessment of how you are in your bed....
Keep us posted....as that does sound like sleep apnea...
I hope so too. Today I went to my PCP because I have been having breathing issues in my sleep. I noticed that when I'm drifting off to sleep that I stop breathing and I wake up gasping for air. It almost feels like my heart stops beating too..it's very scary and its happening every day....she's gonna send me a referral to a sleep specialist.
COMMUNITY LEADER
Very good....Praying these Drs have the info and experience to help you.
Yes, you're right. Since there is a Chiari Center at UCLA, I'm hoping the Neurologist has at least some knowledge about it and can get me tested. Thank you for your help and advice and I will keep you and everyone updated about what happens.
COMMUNITY LEADER
Keep in mind BIG Hospitals have those BIG Names for other conditions not Chiari, so it is better to look for a Dr that is a specialist instead of going to a BIG hospital for it's name.....
And once you have a DX you may want to see a neurosurgeon...a neurologist is the one that DX's and the NS treats it.....
Take a look at the list, and research the Drs and know you may have to go to a few b4 you find the right one for you.....It is not an easy process...who knows you may find a Dr there and they may be great and well experienced with Chiari and ALL the related conditions....keep us posted.
I'm sorry I didn't realize it was too small. I'm gonna try to make it larger. I have made an appointment with a Neurologist over at UCLA. I'm hoping that they have some knowledge in Chiari and can test me for it as well as any other related conditions that you mentioned such as EDS and POTS...
COMMUNITY LEADER
No worries....I saw the pic and would advise you that your full name can be seen and you may want to remove it and if you want the pic up use a program like photo shop to remove your name and other info.
I really can not see anything from this MRI...I am not a medical professional and even if I was I feel this pic is small and dark...hard to see...
Sorry.
Thank you. I hope to get answers soon. Also I posted a pic of my MRI that I had at the end of last year. I was hoping if you could look at it and tell me if there's anything unusual you see.
COMMUNITY LEADER
Wish I knew...as not all Drs recognize Chiari as anything more then an insignificant finding,.....I pray you get some that are open to Chiari and will offer the help and testing you need to determine if you have this condition.
I got an email back from UCLA Neurosurgery saying that I need to contact the Neurology department when I want to see the neurosurgeon who specializes in Chiari. Will these neurologists still be able to help me if I tell them that I want to get all the necessary tests done to see if I have a Chiari Malformation?
oh ok. Thank you for your help. I requested an appointment online too see a neurosurgeon that specializes in Chiari. I hope they will be able to help me in figuring out what's wrong with me..
COMMUNITY LEADER
Yeah it could be ICP or POTS....so do let your Drs know about that...there is a tilt table test you should have.....
Oh alright. The symptoms seem to be more severe when I'm upright then when I'm laying down. I also feel lightheaded when I get up fast and am starting to become sensitive to sounds and lights.
COMMUNITY LEADER
Yes a few members have been to him....you can use the search this community feature to pull up older threads on this topic...and read what others have posted as they may no longer be active members,you can PM them to generate an email.....
You said depending on your position, this could indicate POTS.....so have a Dr test you....
Are the HA's worse when upright? or laying down?
Thank you. I have been really stressed out lately, but only because how I feel and I feel like my symptoms have worsened. I'm starting to get these headaches that come and go.. depending on what position I'm in and the pressure is constant at the back of my head and literally my whole back of my head feels numb..like there's no circulation back there.
The closest Chiari dr I have found to me is Dr. Ulrich Batzdorf at UCLA hospital. I live in the O.C. I really would like to go see him for a third opinion. Do you know of anyone who has seen this doctor?
The closest Chiari dr I have found to me is Dr. Ulrich Batzdorf at UCLA hospital. I live in the O.C. I really would like to go see him for a third opinion. Do you know of anyone who has seen this doctor?
COMMUNITY LEADER
I know how you feel....and you sound like you are in a flare up...relax and allow it to calm down....Chiari symptoms cycle so, it can feel like it went away or stopped when it is just dormant and it can depend on you, what your activities are and how stressed out you are as to when another flare will happen...or how long it will last...so do try and relax the best you can and avoid activities that make you feel worse afterward.
Keep in mind Chiari is a condition not an illness...so it is life altering and there is no cure,....but you can get to a better lifestyle....but first you need to learn to relax, listen to your body, do not over do things and have patience.
You do not want to just hurry and get to a Dr that may make you worse in the long run, take your time and research Drs and get the best one for you.,
Thank you so much for your kind words. I'm glad to have at least someone understand me. This is illness I have been living with is really taking a toll on my life and not having a definite diagnoses on what's really wrong with me is really hard. I feel like if I don't start taking action soon that I'm gonna continue to get worse...
COMMUNITY LEADER
No need to apologize and this is the place to vent and rant as much as you need to...WE ALL understand.
Take one thing at a time...educate yourself a little as you go and slowly see if you can get your family to come on here and read some of this too, once they see others having similar issues to you it may be easier for them to understand,...keep in mind there are many Drs that do not understand this condition, so for family and friends not to is not that hard to understand....our issues are more that we are hurt they are not supporting us ,.....but they will in time....we have to give them that time,...and until then you have us <3
Oh ok. All of this is so overwhelming..and I have absolutely no support from my family..they don't really understand what I'm going through. Everyone thinks it's nothing when I feel there's something really wrong with me...sorry to vent..its just I have no one to talk to about all this..
COMMUNITY LEADER
It was my Chiari specialist that DX'd my EDS and I was referred to a NL/Geneticist for further review....
A Rheumatologist should be able to help you, but as you know not ALL NS's are Chiari specialists so do look for a Dr that specializes in EDS.
When I was first DX'd with Chiari I had testing to rule out ALL conditions with similar symptoms, MS, lymes and lupus....as they can all present very similarly....
Yes I have a lot of acid reflux as well as digestive problems. Is it important that I see a Chiari specialist for EDS? Or should I go to a rheumatalogist or my primary? I feel like they would just brush me off and not take me seriously.
I have been checked for other autoimmune disorders by my primary...I also thought about Lyme Disease too..but I would have to see a specialist for that as well. Alot of this is overwhelming..
COMMUNITY LEADER
Do you have reflux due to the hiatal hernia?...and are you modifying your diet to help with that ?
Deff have them look at you for EDS....
Many with Chiari are prone to also be DX'd with connective tissue disorders and auto immune conditions....so everything should be looked at,
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