I forgot to mention that I had an MRI and they said i had no tonsillar herniation. I don't have MS because I was checked for that too as well.
Hi and welcome back !
Many with Chiari do have related conditions....like Ehlers-Danlos and one issue common with EDSers is a hiatal hernia....so in a way it is related...
Have you been checked for EDS?
There are many issues we all deal with and it is hard to know what is related and what is not....so it is important to know what related conditions you have as well as they can affect how you feel and heal should you have surgery.
Thank you! I have not been checked for EDS, and I have not been seen by a Chiari Specialist yet. I don't know whether or not I have Chiari but my symptoms seem to relate 100% and I'm desperate for answers at this point...
Just hang in there and educate yourself while you wait to see a specialist....know what they should be looking at and testing you for....that way you will know when you have found the right Dr for you.
Check for cervical spine arteries pathophysiology. I think the chiari is unlikely if the tonsils are above the foramen magnum. Your symtoms are too serious for the chiari 0 malformation (borderline). What medications are you using now? Maybe some of them could cause that type of side effect.
The only medication I am taking is Amitriptyline 10mg, and it is to help me sleep better since I have a sleeping issue. Even before taking this medication is when I started experiencing all these symptoms. I've suffered with severe neck pain most of my high school days and til this very day. Now I feel like I can barely hold my head up most days and I feel like I have a bobblehead. I really dont't understand what's going on with me...and I am so scared...:/
Maybe PTC in Systemic lupus erythematosus or other autoimmune disorder?
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,
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..
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.
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....
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..
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
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...
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. 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?
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?
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.
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 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..
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?
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.
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.
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...