Aa
I was immediately referred to Neurosurgeon after a MRI, looking for advise.
Hello, my name is Allen, a 22 year old male.
I will try and compress my story, but I still want to explain everything in detail that I think might be important to disclose that someone who has been down this road before might be able to shed additional insight on.
So up until early September, I thought I was a pretty normal person, few weird symptoms now and then like a stiff neck or the occasional headache/migraine, but I always chalked it up to being normal and I was just holding my neck weird so it would go stiff or whatever.
Well, in early September, I started getting a short (lasted a few minutes at most) pinpoint headache in the same spot at the very top of my head randomly. Normally I just shrugged off headaches, but with this one I noticed my left arm didn't quite feel right. Well that same scenario kept happening every other day or two so I finally got around to moving to a local doctor and setting up an appointment (my previous doctor was an hours drive away, I moved away for College and never changed my doctor).
I saw him in early/mid October, he seemed pretty dismissive and kept telling me that "it's most likely just a migraine." But since I stated I was having some weird neurological symptoms associated with them he ordered an MRI "just to rule out potential causes." (Which I was happy with)
I was able to get into an MRI within a couple weeks, I had it less than 2 weeks ago. When he got the results he called and explained the results which showed "there is a cerebellar tonsillar ectopia with the tonsils extending approximate 9 mm below the level of the foramen magnum." He didn't overly explain much over the phone which left me hanging, but told me he was immediately referring me to a neurosurgeon for consultation and in most cases they just monitor it, of whom I see on Thursday morning. The speed in which they were able to get me in startles me, as I have been researching and it appears that people have had to wait months to years to even get sent anywhere and here I am 1 month after officially complaining about a headache and weird arm sensation getting sent to a Neurosurgeon.
This development made me start researching what a cerebellar tonsillar ectopia was which led me to find out that it is also called a Chiari Malformation (I think this would be a type 1?). I also saw the symptoms and the last few years of weird/random symptoms finally made sense, as they all lined up with Chiari.
Now, my symptoms so far have not been debilitating. Mostly minor pain/numbness that resolves in less a day, but the recent increase in symptoms recently has me concerned and confused. They also seem to be steadily getting worse. In the past they would usually last for a few minutes to a day at most. My most recent round has been present since last weekend and consists of a slight dull pain in the back and top of the head. That flared up on Thursday (thanksgiving) and I was effectively bed ridden the majority of the day, standard pain meds did absolutely nothing to this headache. I even tried caffeine as that had helped with a past headache from the week before. Still nothing. It took a heat pack applied to the pain area about an hour for the headache to become bearable so I could function and it has since returned to the dull pain it had been the rest of the week. Also throughout that week, my left arm has been feeling weird, I don't think its numb as its not tingling/pins and needles, but it definitely feels weaker than it was and there are a lot of uncomfortable sensations coming from it (shoulder to fingertips). I'm also not sure if this is a Chiari symptom, but the past few days, I have noticed I have been having a hard time talking periodically, I will randomly be mid sentence and would mix a word up, or will just freeze with a twisted tongue like situation where I knew what I wanted to say but my mouth was not performing (this is usually pretty brief and lasts a few seconds, but I don't recall it happening in the past). Part of me thinks that headache was a direct symptom of this newfound condition but my family just blew me off and said I was probably just imagining things (why the heck would I want to make myself feel like crap) because I had been researching this condition a lot the past week as it was worrying me.
Essentially, I don't really know what I should be asking this Neurosurgeon on Thursday. I don't know what to expect from the appointment other than it's a consultation and will probably be officially diagnosed and told that they are either just going to monitor it and do regular tests (and I get to live with these new symptoms) or that they are going to recommend brain surgery which frightens the hell out of me (although, I do a good job hiding it). I figured I would ask people who have been going through this journey for their advise as I really don't have anyone taking me seriously in real life enough to give me sound advise. Thank you in advance for taking the time to read this post and for any advise given, its a bit longer than I was expecting.
I will try and compress my story, but I still want to explain everything in detail that I think might be important to disclose that someone who has been down this road before might be able to shed additional insight on.
So up until early September, I thought I was a pretty normal person, few weird symptoms now and then like a stiff neck or the occasional headache/migraine, but I always chalked it up to being normal and I was just holding my neck weird so it would go stiff or whatever.
Well, in early September, I started getting a short (lasted a few minutes at most) pinpoint headache in the same spot at the very top of my head randomly. Normally I just shrugged off headaches, but with this one I noticed my left arm didn't quite feel right. Well that same scenario kept happening every other day or two so I finally got around to moving to a local doctor and setting up an appointment (my previous doctor was an hours drive away, I moved away for College and never changed my doctor).
I saw him in early/mid October, he seemed pretty dismissive and kept telling me that "it's most likely just a migraine." But since I stated I was having some weird neurological symptoms associated with them he ordered an MRI "just to rule out potential causes." (Which I was happy with)
I was able to get into an MRI within a couple weeks, I had it less than 2 weeks ago. When he got the results he called and explained the results which showed "there is a cerebellar tonsillar ectopia with the tonsils extending approximate 9 mm below the level of the foramen magnum." He didn't overly explain much over the phone which left me hanging, but told me he was immediately referring me to a neurosurgeon for consultation and in most cases they just monitor it, of whom I see on Thursday morning. The speed in which they were able to get me in startles me, as I have been researching and it appears that people have had to wait months to years to even get sent anywhere and here I am 1 month after officially complaining about a headache and weird arm sensation getting sent to a Neurosurgeon.
This development made me start researching what a cerebellar tonsillar ectopia was which led me to find out that it is also called a Chiari Malformation (I think this would be a type 1?). I also saw the symptoms and the last few years of weird/random symptoms finally made sense, as they all lined up with Chiari.
Now, my symptoms so far have not been debilitating. Mostly minor pain/numbness that resolves in less a day, but the recent increase in symptoms recently has me concerned and confused. They also seem to be steadily getting worse. In the past they would usually last for a few minutes to a day at most. My most recent round has been present since last weekend and consists of a slight dull pain in the back and top of the head. That flared up on Thursday (thanksgiving) and I was effectively bed ridden the majority of the day, standard pain meds did absolutely nothing to this headache. I even tried caffeine as that had helped with a past headache from the week before. Still nothing. It took a heat pack applied to the pain area about an hour for the headache to become bearable so I could function and it has since returned to the dull pain it had been the rest of the week. Also throughout that week, my left arm has been feeling weird, I don't think its numb as its not tingling/pins and needles, but it definitely feels weaker than it was and there are a lot of uncomfortable sensations coming from it (shoulder to fingertips). I'm also not sure if this is a Chiari symptom, but the past few days, I have noticed I have been having a hard time talking periodically, I will randomly be mid sentence and would mix a word up, or will just freeze with a twisted tongue like situation where I knew what I wanted to say but my mouth was not performing (this is usually pretty brief and lasts a few seconds, but I don't recall it happening in the past). Part of me thinks that headache was a direct symptom of this newfound condition but my family just blew me off and said I was probably just imagining things (why the heck would I want to make myself feel like crap) because I had been researching this condition a lot the past week as it was worrying me.
Essentially, I don't really know what I should be asking this Neurosurgeon on Thursday. I don't know what to expect from the appointment other than it's a consultation and will probably be officially diagnosed and told that they are either just going to monitor it and do regular tests (and I get to live with these new symptoms) or that they are going to recommend brain surgery which frightens the hell out of me (although, I do a good job hiding it). I figured I would ask people who have been going through this journey for their advise as I really don't have anyone taking me seriously in real life enough to give me sound advise. Thank you in advance for taking the time to read this post and for any advise given, its a bit longer than I was expecting.
Hey there! Looking through your questions and comment. I have been where you are. They called me back after a MRI and told me they placed an order for more with contrast. I stated, more or less, it had better be important because these tests are not cheap. The nurse assured me it was...
Weeks later I find out that I have a syrinx that runs the length of my thoracic spine. They didn't release my other results for 3 days but they were fine. The stess of waiting is often unbearable so try to distract yourself (easier said than done I know).
Weeks later I find out that I have a syrinx that runs the length of my thoracic spine. They didn't release my other results for 3 days but they were fine. The stess of waiting is often unbearable so try to distract yourself (easier said than done I know).
2 Comments
Thanks for the response. I just got the notification that they published my MRI results on my account and the Radiologist gave me the all clear on the spine. So good news there.
He even left a note that he dint think I had Chiari because it seemed minimal, but that's pretty much in line with most Chiari diagnosis stories I've seen (my Neurosurgeon told me I definitely had it). Herniation size doesn't really matter too much when it comes to if you have symptoms or not. But im glad I dont have a syrinx, for now. My symptoms just started back in September so the hernation could have just started for all I know.
He even left a note that he dint think I had Chiari because it seemed minimal, but that's pretty much in line with most Chiari diagnosis stories I've seen (my Neurosurgeon told me I definitely had it). Herniation size doesn't really matter too much when it comes to if you have symptoms or not. But im glad I dont have a syrinx, for now. My symptoms just started back in September so the hernation could have just started for all I know.
From what I understand there are a lot of people who live with Chiari and never present with symptoms. In my opinion that has, for lack of a better term, confused the individuals who read the images and given them the background to say things that are just not true for all of us. I hope with all my heart your symptoms resolve.
Just wanted to post an update.
My anxiety is through the roof at the moment.
I had a Full Spine MRI done Saturday.
Well, they released 1/3 of the results this morning. My Lumbar spine is all clear. But now I'm trying to figure out why they didnt release the other two MRI's of the rest of my spine? Last time they released everything all at once (mri and mra).
Im probably over thinking it, but it makes me worry that they found something in the other two and are writing a more detailed report/getting other eyes to look at it. Anyone have something similar happen?
Essentially, if they find a Syrinx im likely getting surgery.
My anxiety is through the roof at the moment.
I had a Full Spine MRI done Saturday.
Well, they released 1/3 of the results this morning. My Lumbar spine is all clear. But now I'm trying to figure out why they didnt release the other two MRI's of the rest of my spine? Last time they released everything all at once (mri and mra).
Im probably over thinking it, but it makes me worry that they found something in the other two and are writing a more detailed report/getting other eyes to look at it. Anyone have something similar happen?
Essentially, if they find a Syrinx im likely getting surgery.
COMMUNITY LEADER
I do know and understand Drs looking at the herniation and the larger it is more likely they will suggest surgery...but the width is more the issue if it is creating a blockage of CSF flow...that is what causes a syrinx to form.
Even the small herniation's can be as or more symptomatic then some longer ones....again the reason is the width, and other possible issues along with it....such as a retro flexed odontoid, syrinx,basilar invagnation.....my herniations were not large 4MM and a 6MM but I also had a partially retroflexed odontoid making CSF flow more difficult.
I also tested positive for EDS.....did they rule that out for you?
2 Comments
They didn't consider any other conditions. He felt pretty firmly that it was Chiari. The MRI perspective from top down showed a really tight space for CSF flow on 3 sides (left back and right) of the spinal cord just under the line they draw to determine the herniation (if that makes sense). I think that's why they didn't order a CSF flow MRI as it was clear it would have a hard time flowing. To me it looked like there was a lot of contact with the spinal cord from the top down view. I can upload images tonight when I get home.
I uploaded my MRI's that were given to me. They should be on my profile.
COMMUNITY LEADER
With the barometric pressure dropping due to rain that alone can cause symptoms to flare....I often have referred myself as a walking barometer.
With every change of season and weather fronts I am greatly affected....we aare all different but it is worth taking note of symptoms and the weather to see if you too have these issues.
I have the list and will post that one here for you....keep in mind it is not a referral nor an endorsement, it is only a starting place for you to begin researching Drs. The Drs on this list were used by members here and we only post names once the member has been to, treated by and liked the Dr....some names are removed if several members report bad experiences.....
MICHIGAN
Dr Lynn Hedeman
Great Lakes Neurosurgical Assoc.
414 Plymouth NE
Grand Rapids, MI 49505
(616)454-3465
Dr. Karin Muraszko
C.S. Motts Childrens Hospital
University of Michigan
Ann Arbor, Michigan
DR Richard Veyna
Head and Spine Institue of MI
West Bloomfield, MI
1 Comments
Update on how my appointment went.
Pretty much the first thing he told me was I had a Chiari Malformation type 1 with a 9mm herniation into the spinal column. We reviewed the MRI's and he did a thorough exam to test my current neurological state. He seemed well versed like he has explained this conditions many times before. He covered everything I had learned online.
One note of concern I noted is that he made a comment on how much my legs re-flexed when he hit the knees. When I asked why, he said it could be a sign of pressure in the spinal cord (which is when I started freaking out on the inside cause the first thing I thought of was "great I probably have a syrinx...")
He did not recommend surgery at this time but did order a full MRI of the Spine because he wanted to rule out if I have a syrinx.
He told me the general guidelines they follow are dependent on symptoms, but they also factor in the herniation size. He said anything under 5mm they rarely offer surgery, 5-10mm depends on symptoms, and 10mm+ they are more likely to offer.
For me he pretty much said if I have a syrinx he would likely offer surgery so we can prevent damage. He was very clear that not relieving pressure before a syrinx gets too bad would cause permanent damage. But he was also very clear that surgery was not a cure, just a preventative measure to protect against damage.
I also asked about a CSF Flow MRI but he was much more concerned with the syrinx in relation to if he was going to offer surgery.
If they dont find anything I get to have it monitored with the 9mm herniation as the baseline.
Pretty much the first thing he told me was I had a Chiari Malformation type 1 with a 9mm herniation into the spinal column. We reviewed the MRI's and he did a thorough exam to test my current neurological state. He seemed well versed like he has explained this conditions many times before. He covered everything I had learned online.
One note of concern I noted is that he made a comment on how much my legs re-flexed when he hit the knees. When I asked why, he said it could be a sign of pressure in the spinal cord (which is when I started freaking out on the inside cause the first thing I thought of was "great I probably have a syrinx...")
He did not recommend surgery at this time but did order a full MRI of the Spine because he wanted to rule out if I have a syrinx.
He told me the general guidelines they follow are dependent on symptoms, but they also factor in the herniation size. He said anything under 5mm they rarely offer surgery, 5-10mm depends on symptoms, and 10mm+ they are more likely to offer.
For me he pretty much said if I have a syrinx he would likely offer surgery so we can prevent damage. He was very clear that not relieving pressure before a syrinx gets too bad would cause permanent damage. But he was also very clear that surgery was not a cure, just a preventative measure to protect against damage.
I also asked about a CSF Flow MRI but he was much more concerned with the syrinx in relation to if he was going to offer surgery.
If they dont find anything I get to have it monitored with the 9mm herniation as the baseline.
COMMUNITY LEADER
What has your local weather been like? Weather plays a big role in how we feel symptom wise.....
Ask if you can record the session and how to contact the Dr should you formulate questions once you get home and digest the info.
We do have a list for your state of Drs that treated Chiari....this does not mean they are true Chiari specialists...and you should research them...but it may be helpful having a place to start. Some peds Drs will also treat adults....so ask.
Good luck and keep us posted.
1 Comments
I am up in Michigan and we are transitioning into winter. Other than the odd rain shower it has been pretty stable weather wise. My mother thinks its allergies but ive never had these type of headaches that originate in the back of the head due to them.
Where can I find the list of Chiari Specialists in Michigan? Ive found one on another website but was only able to track down 2 of them, it may have been outdated.
Where can I find the list of Chiari Specialists in Michigan? Ive found one on another website but was only able to track down 2 of them, it may have been outdated.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is important to take someone with you to help you with the info the Dr gives you as we can become like a deer in headlights. And know that even having a list of questions may not help you be completely prepared for the visit.
You will 1- want to know if the Dr is a true Chiari specialist
.2-make sure testing for ALL related and non related conditions are done to rule them out, and know what all you may have going on.
3- Have a CINE MRI done to check CSF flow
4-Listen to why your Dr may be offering treatment...what his definition of Chiari is.....some just look at the length of cerebral tonsil herniation....that is not Chiari, Chiari is the malformation of the skull....and if you do not have a CSF obstruction surgery most likely will not help as surgery is done to restore flow of the fluid.
1 Comments
Thank you for the tips!
Unfortunately I don't really have anyone that can go with me that I would be comfortable with being there to get whatever news I get, will be going in solo hopefully level headed. But my head has only been getting worse since I originally posted. I was getting better until I sneezed once last night which made the headache in the back of my head spike again...
I already know my NS is not a Chiari specialist :( I was.only able to find 2 in the state of Michigan that were in my insurance network, and they are all several hour drives. One was a pediatric nuerosurgeon so I'm not sure if they could even work with me.
I will be sure to ask what he thinks I have and why as nobody in the health system has mentioned Chiari to me. Will see if it lines up. It just seems that Chiari seems to be the main reason why the tonsils would depend like that outside of head trauma which I have no recollection of having.
Unfortunately I don't really have anyone that can go with me that I would be comfortable with being there to get whatever news I get, will be going in solo hopefully level headed. But my head has only been getting worse since I originally posted. I was getting better until I sneezed once last night which made the headache in the back of my head spike again...
I already know my NS is not a Chiari specialist :( I was.only able to find 2 in the state of Michigan that were in my insurance network, and they are all several hour drives. One was a pediatric nuerosurgeon so I'm not sure if they could even work with me.
I will be sure to ask what he thinks I have and why as nobody in the health system has mentioned Chiari to me. Will see if it lines up. It just seems that Chiari seems to be the main reason why the tonsils would depend like that outside of head trauma which I have no recollection of having.
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