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Recent Diagnosis - Questions I don't even know I have
Where do I even start? I received the diagnosis over the phone an hour ago.
3/17 I was admitted to the ER with stroke like symptoms: dizzy, nauseous, thought I was going to pass out, pain in my left arm and shoulder, the back of my neck was throbbing, the left side of my face felt tons of pressure and then started twitching... then I all of a sudden couldn't talk... I felt drunk and very confused. They ran me for strokes and none were detected... I was referred to a neurologist with possible complex migraine symptoms... I was sure something in my body broke that day and since then have had a hard time getting anyone to believe me. Previous to that for about 6 weeks I was having dizzy spells constantly. I thought maybe I had some inner ear issue. For the next week I was totally disabled with the same symptoms mentioned above... it would be very sporadic. One day it happened 5 times for short periods of "peaking" as I call it, then one day lasted an hour and 45 minutes. I seemed to be improving but last Thursday severe symptoms returned. I have already had one bad run in with a neurologist who implied I was sleep deprived and prescribed me Xanax. Saw a chiropractor who specializes in neurology (first one I could get into) and she diagnosed me. I visited with a nurse practioner that came highly recommended last week... brought the disc to her a long with a detailed journal of my day to day struggles. Most recently my legs feel weak and almost disconnected and I now have a shooting pain from the back of my neck down my spine to my tailbone. I have blurry vision, I feel totally disconnected and especially angry. They called with my diagnosis and referred me to a neurosurgeon. I have so many questions and don't even know where to start! Do I ever need to go to the ER with these symptoms? I have been tempted to about 10 times but don't want to be back at square one with more bills! I suppose any advice or support is helpful. I feel like this is such a long story so I only could get out like 1/4 of it... Every day i'm in more pain ... I just don't know what worse case scenario is!
3/17 I was admitted to the ER with stroke like symptoms: dizzy, nauseous, thought I was going to pass out, pain in my left arm and shoulder, the back of my neck was throbbing, the left side of my face felt tons of pressure and then started twitching... then I all of a sudden couldn't talk... I felt drunk and very confused. They ran me for strokes and none were detected... I was referred to a neurologist with possible complex migraine symptoms... I was sure something in my body broke that day and since then have had a hard time getting anyone to believe me. Previous to that for about 6 weeks I was having dizzy spells constantly. I thought maybe I had some inner ear issue. For the next week I was totally disabled with the same symptoms mentioned above... it would be very sporadic. One day it happened 5 times for short periods of "peaking" as I call it, then one day lasted an hour and 45 minutes. I seemed to be improving but last Thursday severe symptoms returned. I have already had one bad run in with a neurologist who implied I was sleep deprived and prescribed me Xanax. Saw a chiropractor who specializes in neurology (first one I could get into) and she diagnosed me. I visited with a nurse practioner that came highly recommended last week... brought the disc to her a long with a detailed journal of my day to day struggles. Most recently my legs feel weak and almost disconnected and I now have a shooting pain from the back of my neck down my spine to my tailbone. I have blurry vision, I feel totally disconnected and especially angry. They called with my diagnosis and referred me to a neurosurgeon. I have so many questions and don't even know where to start! Do I ever need to go to the ER with these symptoms? I have been tempted to about 10 times but don't want to be back at square one with more bills! I suppose any advice or support is helpful. I feel like this is such a long story so I only could get out like 1/4 of it... Every day i'm in more pain ... I just don't know what worse case scenario is!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I see CW did a great job is offering support and insight.
Keep in mind not all Drs even those that advertise as Chiari specialists are the best to put all our eggs into the basket....so do visit a few Drs and research them to make sure they are the best one for you....having the right Dr is key !
If your pain is such that meds you have will not help or if you have a breathing issue do go to the ER...but they will only be able to help with the symptoms and not the condition.
2 Comments
What kind of breathing issues are serious? Yesterday my throat felt swollen and I had a hard time even eating. Also what would they do at the hospital? I'm asking because i have a nebulizer with albuterol for my daughters asthma....It's so insane how quickly the symptoms change/progress.
Sorry I am late responding to this....do not use your daughter's meds....call your Dr and let him/her know about the new symptoms. Not being able to breathe .....swallowing issues are common but should also be checked...I had a swallow study and had nothing physical wrong so it was a neuro issue due to Chiari and I have not had it since surgery.
This may not be the answer you need/want to hear. And I am no doctor just another Chiarian who has been very close to where you are now. What you describe sounds like a nightmare yet I know most of the symptoms you describe were there when I was finally diagnosed.
Cutting this short- I'd been to numerous doctors, ER visits, etc for nearly 9 months with no answers. Went to a family get together of sorts. All I remember from that day was my wife and sister standing in front of me asking what is wrong. Then someone taking me from the local ER up to a nearby city hospital. They said I had a stroke. By the next morning all the symptoms were gone and the NS/NL team said I made it all up and put me in the psyche ward.
Don't want go into my story here. I just shared that much with you to help you see that you are unfortunately far from alone. In a strange way sometimes that helps. Early on after my dx I wanted information. All the facts I could find about Chiari Malformation.
If that is where you are at now and it sounds like perhaps you are... This is the right place. Without this list I may have very well went crazy. You will learn more about your condition here and from a qualified NS than you ever will surfing the net or talking to inept doctors who do not believe in Chiari.
As to you question about the ER- I hate to give you what I call a non-answer but without being in your skin its hard to do anything else. If your body is telling you that it needs help. Then listen to it. And I hate to tell you this but if your community is like mine then you may have to travel a bit to find an ER that will take you serious. But either way just go . If your body is saying go then go.
Not so many years ago no one in the medical community around me knew or should I say believed Chiari symptoms are real. Now that has changed. We have a few in the local hospital that used to snuff their nose at me who now accept Chiari is real. Many times they can't do much except treat the symptoms. But that's true with a broken arm too is it not? They can't unbreak the arm. With Chiari the symptoms can become so severe that we want a FIX not the symptoms treated. I bring this up because your anger and the stress it brings will only make the Chiari symptoms worse. We all have to try and maintain a firm attitude towards our medical care. At the same time forcing our minds to stay calm. This may sound counter productive as we have to fight to get the care we need. However, what I have found is that when I control my own emotions... I am controlling how severe the symptoms become. Then I am able to think better and end up getting more help.
I do hope my babble helps you just a little bit in some way. At the very least please accept my welcome to the list here today. I pray you will find the encouragment/answers/experiences that will help you to better wrap your mind around this and help you deal with it the best you can.
CW
Cutting this short- I'd been to numerous doctors, ER visits, etc for nearly 9 months with no answers. Went to a family get together of sorts. All I remember from that day was my wife and sister standing in front of me asking what is wrong. Then someone taking me from the local ER up to a nearby city hospital. They said I had a stroke. By the next morning all the symptoms were gone and the NS/NL team said I made it all up and put me in the psyche ward.
Don't want go into my story here. I just shared that much with you to help you see that you are unfortunately far from alone. In a strange way sometimes that helps. Early on after my dx I wanted information. All the facts I could find about Chiari Malformation.
If that is where you are at now and it sounds like perhaps you are... This is the right place. Without this list I may have very well went crazy. You will learn more about your condition here and from a qualified NS than you ever will surfing the net or talking to inept doctors who do not believe in Chiari.
As to you question about the ER- I hate to give you what I call a non-answer but without being in your skin its hard to do anything else. If your body is telling you that it needs help. Then listen to it. And I hate to tell you this but if your community is like mine then you may have to travel a bit to find an ER that will take you serious. But either way just go . If your body is saying go then go.
Not so many years ago no one in the medical community around me knew or should I say believed Chiari symptoms are real. Now that has changed. We have a few in the local hospital that used to snuff their nose at me who now accept Chiari is real. Many times they can't do much except treat the symptoms. But that's true with a broken arm too is it not? They can't unbreak the arm. With Chiari the symptoms can become so severe that we want a FIX not the symptoms treated. I bring this up because your anger and the stress it brings will only make the Chiari symptoms worse. We all have to try and maintain a firm attitude towards our medical care. At the same time forcing our minds to stay calm. This may sound counter productive as we have to fight to get the care we need. However, what I have found is that when I control my own emotions... I am controlling how severe the symptoms become. Then I am able to think better and end up getting more help.
I do hope my babble helps you just a little bit in some way. At the very least please accept my welcome to the list here today. I pray you will find the encouragment/answers/experiences that will help you to better wrap your mind around this and help you deal with it the best you can.
CW
2 Comments
I am short for words tonight due to exhaustion but you totally summed up how I'm feeling. I'm sure as I go on I will have more specific questions, but that is exactly what I needed for now. Everything you said made a lot of sense. I have been following this thread for about a week because before an official diagnosis, a local chiropractor who specializes in neurology told me I have it after viewing my MRI. I went with the attitude that "I don't have it until the Dr. tells me" so I like everyone on the planet googled the hell out of it for the next week. Stumbled on this and it seems to be the most logical place to start until i see a Dr. With the help of this community I was able to find a Chiari Specilist in WI where I live. Dr. Dan Heffez. Just have to wait for him to review my case for an appointment.
Thank you so much. It really did help.
Thank you so much. It really did help.
I guess I wasn't as short for words as I thought LOL
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