Some one suffering for years and seeing my MRI and now know I have CM1 and the list of problems a long I suggest you find a neuroscience center who specialize in and do not Waite because if this is the research says it does get bigger.
Hi everyone I know it’s been awhile since I posted. I just now got insurance and trying to find a neurosurgeon near the Memphis area. Selma in one of my previous post you said that Dr. Stephanie Einhaus at seemes Murphy clinic was one of the good neurosurgeons. Is that true is she a chiari specialist?
Hey everyone it’s been awhile unfortunately I’m way worse than I was a couple months ago. The neurosurgeon I was seeing this past year had his nurse call me the day before my follow up appointment to tell me he was no longer seeing me anymore... They told me I should follow up at another location and they we’re supposedly referring me to them but I never got a call from anyone. So now I have to see my pcp and see if he can refer me to someone else. My big and still current issue is I don’t have insurance which really sucks. My biggest problem right now is this constant lightheadedness it’s there almost 24/7. Since I think Sunday I’ve had the lightheadedness every single day and it’s got me severely depressed :( I’m at the hospital right now with my worsening symptoms I just don’t know what to do anymore so ready to give up....
Selma I really need som advice now for sure. The past three days I think I’ve been have major headaches in the back of my head mostly. The thing is I haven’t really dealt with headaches at all through all this just head pressure. That’s what really scares me of what it could be? Why would I all of a sudden develop serious headaches in the back of my head? I went to the er a couple days ago where they did a ct scan that was normal but I’m worried it’s something that can’t be seen on ct...
Really scared about my worsening symptoms... Today my head feels like a weight is pulling my head downward and feet feel disconnected off and on. And the pressure in the back of my head is unbearable :(. Any idea what could be wrong? I'm really thinking of going to the er again I'm so worried...
I’m really getting worried now for sure. For the past two or three days I’ve been having this prickly/tickly feeling in the bottom of my feet and I’ve been really unsteady on my feet. Could this be a Syrinix that’s developrd? Or possible something else like gullian barr? I’m so scared of what this is it feels like my feet are disconnected and I feel so unsteady when walking...
What type of surgery are you hoping for? I can't recall if you were decompressed or not....I know how scary this all can be....hang in there and keep us posted on what they tell you at the ER.
Hi....just knowing you have an irregular heartbeaat does not mean your brain stem is or isn't compressed...as there could be other reasons.....such as POTS which is a comorbid condition of Chiari so, until a Dr sees you and DX's you there is no way to know for sure.
Have you been to your PCP about the irregular heartbeats?
Also for the past month I’ve been having a lot of skipped heartbeats I’ve read with the skipped heartbeats lightheadedness etc. it may be brain stem compression could it be?
Well a little bit of an update. I was supposed to have my 6 month follow up th neurosurgeon yesterday but I had the appointment time wrong... So now I have to wait till October the 15 to see the neurosurgeon.. I wish I could say that I was better and not getting worse but the past couple of months I have progressed it seems.. The past 2 weeks my unsteadiness has been really bad I'm scared to even get up and walk because of it.. My lightheadedness and head falling feeling has gotten worse too :(. Should I go to the er about this? I'm so scared that I'm eventually not going to be able to walk on my own :(
Has anyone had constant lightheadedness with chiari? I’m scared it could be something else :(
Hi I am so sorry you are so stressed out over these symptoms and I know the ER will not be of any help to you.....so I know it will be a wasted trip, but if it helps you feel better going then maybe you should.
I can only offer info on what I know, and all I can suggest is to try to relax, keep hydrated as that can affect how you feel....and look at your weather....we all tend to be walking barometers.....and that too can add to the light headed feelings you experience.
I used to get like I was hyperventalating just with taking....my husband had a few suggestions for me on that one....but I do understand your being worried, afraid....etc....I was too....all we can do is try to see if our activities are a contributing factor, our diet, the weather....etc...then try to avoid some of the things that may add to the symptoms.
I’m really becoming so scared the lightheadedness is there constant even when lying down :( I want to go to the er again but don’t want it to be a waste of time again... The lightheadedness even at rest is what really worries me.....
The ER can't help, only a CHIARI specialist can.....the ER is for life saving and to help with intollerable pain....outside of that they have no idea how to begin to treat someone with Chiari.
I don't think spinal tap will help in fact it could make you feel worse......
I just don’t know what to do I feel like I’ve done everything I could possibly do :(. I’ve been to the er countless times and they do nothing regardless of how bad I am. Every day gets worse I’m progressing fast and just don’t know what to do... Should I go back to the er and demand a spinal tap?
YES, it can be Chiari related.....and it can be related to the weather in your area, including temps, and barometric pressure.....it can also be what you do activity wise as well......there are so many variables to what could be causing you to feel this way....including worry and stress, they factor in as well......
Please guys I’m really worrying today. I’m feeling really faint for some reason :( I’ve had everything checked out so many times so it’s gotta be chiari related right? The fluid and fullness feeling is really bad what could be happening??
Alright I’m really starting to get worried.. This heaviness I’m the back of my head is so bad along with the lightheaded spells. I’ve also developed nausea the past couple days does this sound chiari related?! The back of my head just feels so heavy and I’m having derealization where it looks like everything seems unreal I’m really scared I don’t know what to do :(
Hi...have you had POTS ruled out? HHI?.....Chiari can come with other conditions, and until all testing rules these others out it is near impossible to say what is causing which symptoms. OR how to treat them and which one first....
I got discharged last night I still worry about having ICP... I did read I had moderate disk bulging in c-6 and c-7 maybe that could be causing the headaches and neck pain? It wouldn't really explain the ear and fullness in the back of my head though.. I just really wonder whats causing everything if not chiari. Is it less likely I have ICP with a clear eye exam?
Well I saw a neurosurgeon about they scans I had yesterday and he said it’s a small malformation at around 5mm. He said he knows quite about chiari and he didn’t see any kind of blockage or anything and he said he didn’t think chiari was causing my symptoms... Which I don’t really believe that but guess I’m gonna have to investigate other causes. I did get a eye exam here at the hospital awhile ago and their was ok swelling of my optic nerves which is good but doesn’t rule out ICP..
I did have burning pain in my neck and back of head. And the shoulder blades. And the ringing in the ears (which I always have but gets intense with the pressure) is very high pitched and it’s literally all I can hear along with a helicopter sound thumping nonstop. Very frustrating.
I wouldn’t let anyone jump to inserting a shunt as those can cause more issues than they help sometimes. It was proposed for me but was a last resort. Most times the decompression surgery can help and sometimes the surgery can cause high ICP. Which is what happened to me after surgery no 1.
Without the proper testing it’s haed to say what it is or isn’t. I can only go by symptoms that I’ve had. I had throbbing pressure headaches that pulsed loudly and painfully inside my head. Couldn’t move my head even slightly without it. I literally heard my heartbeat every time I moved and the ringing in the ears was deafening. Also I had visual disturbances including bright flashes of light and black spots that caused loss of vision. I had many visual field tests and had significant abnormalities show.
If you proceed with an LP, be sure they are aware of your chiari because drawing too quickly can cause the brain tonsils to be pulled down further causing worsening symptoms. Also be aware of the chance of spinal fluid leak from this procedure. It happened to me and had to have a blood patch to seal it
Hydro and high ICP are similar but different things. Hydro is fluid inside the brain itself and high ICP is fluid buildup on top of the brain. I have high ICP and although miserable I’ve not heard of it causing death. It can lead to permanent blindness if not treated due to pressure increase on the optic nerve. There is a mad that is used to treat it called diamox. It has nasty side effects but it reduces the amount of fluid. I was on it for well over a year.
Hoping you get some answers soon