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Chiari 1 - 6mm - How likely is treatment needed?
Hello
I recently had an MRI for prolactinomas due to fertility problems and the incidentally also found that my cerebellar tonsils descend 6 mm. Obviously my obgyn is not an expert in this area and had never seen this before, so she is contacting my primary care doctor and referring to a neurologist.
Over the past 10 years, I have had mild symptoms that have been put down to chronic fatigue syndrome (following severe mono in 2003). These have been periods of extreme tiredness, frequent vomiting without explanation but not really headeaches. I have had several blood tests for iron disorders, but nothing found. In the last year, I have begun to experience pain in my hands that can't be explained.
None of these symptoms really mean I can't function yet, they are just a general annoyance!
Could these be due to Chiari I? Are there any associated conditions I could have to explain them? How likely is it that a neurologist would suggest treatment - as the surgery sounds pretty severe!!
Any help would be useful!!
I recently had an MRI for prolactinomas due to fertility problems and the incidentally also found that my cerebellar tonsils descend 6 mm. Obviously my obgyn is not an expert in this area and had never seen this before, so she is contacting my primary care doctor and referring to a neurologist.
Over the past 10 years, I have had mild symptoms that have been put down to chronic fatigue syndrome (following severe mono in 2003). These have been periods of extreme tiredness, frequent vomiting without explanation but not really headeaches. I have had several blood tests for iron disorders, but nothing found. In the last year, I have begun to experience pain in my hands that can't be explained.
None of these symptoms really mean I can't function yet, they are just a general annoyance!
Could these be due to Chiari I? Are there any associated conditions I could have to explain them? How likely is it that a neurologist would suggest treatment - as the surgery sounds pretty severe!!
Any help would be useful!!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
We do have a list of Drs that we share for areas you can travel to...not all areas have a true Chiari specialist and we may have to travel to get to one.Unfortunately we do not have any listed for your state.
There are Drs in Ohio and TN...let me know where you can travel to.
May I ask what testing have you had so far?
How do you find a Chiari specialist? I have 3 small children and I just want my life back.
HI Eruk,
I'm new to the Chiari forum. I joined because I have had Chiari since 2002. The Chiari was diagnosed after a very bad fall while jogging. It finally got so bad that I had the decompression surgery in 2005. The neursurgeon was an excellent doctor and the surgery went well. It took some time to recover from the surgery but I've had many years of being free of those dreaded life altering Chiari symptoms. Last year I fell again and it was a nasty fall. Within about 2 weeks I started have pain in my head and it progressed to a wide range of Chiari symptoms. I went to see a neurologist and he wasn't able to help me. He was convinced that it was some type of head trauma and would heel over time. He finally told me that there wasn't much he could do, and recommended that I see my original neurosurgeon. So my takeaway from my experiences is that you should find a neuro doctor that specializes in Chiari and who understand the symptoms, effects of the malformation, and how to go about giving you a better quality of life. I've had the decompression sugery once, and although it was tough and took some time to recover, I would do it again to get my life back. I'll see my Chiari neurosurgeon in September and hopefully will get some options from him about how to proceed. Good luck in your search.
I'm new to the Chiari forum. I joined because I have had Chiari since 2002. The Chiari was diagnosed after a very bad fall while jogging. It finally got so bad that I had the decompression surgery in 2005. The neursurgeon was an excellent doctor and the surgery went well. It took some time to recover from the surgery but I've had many years of being free of those dreaded life altering Chiari symptoms. Last year I fell again and it was a nasty fall. Within about 2 weeks I started have pain in my head and it progressed to a wide range of Chiari symptoms. I went to see a neurologist and he wasn't able to help me. He was convinced that it was some type of head trauma and would heel over time. He finally told me that there wasn't much he could do, and recommended that I see my original neurosurgeon. So my takeaway from my experiences is that you should find a neuro doctor that specializes in Chiari and who understand the symptoms, effects of the malformation, and how to go about giving you a better quality of life. I've had the decompression sugery once, and although it was tough and took some time to recover, I would do it again to get my life back. I'll see my Chiari neurosurgeon in September and hopefully will get some options from him about how to proceed. Good luck in your search.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I have to echo much of what u have been told by the other members but I will repeat...find a well informed and experienced Chiari specialist and get more testing..as it is possible to have related conditions which can cause many of the same symptoms....And not having a lot of pain or head aches could be due to nerve compression....if the signals for pain can not travel the nerve, u wil not feel it, that does not indicate ur Chiari is not at the point u need surgery as the longer nerves are compessed the higher the possibility for perm nerve damage...so get a CINE MRI to see if u have an obstruction and testing to see if u have a syrinx, tethered cord, ICP, POTS,ehlers-danlos, sleep apnea... as these related conditions can affect how u feel and heal should u be considered a surgical candidate.
I've read the size of the herniation doesn't really matter, it all comes down to how severe your symptoms are. My herniation showed as 5mm on MRI but was actually 15 and 16 mm during decompression, the tonsils were hidden behind the spinal cord.
I had my surgery at The Chiari Institute, Drs. Bolognese and Millorat (now retired). Dr. B explained that surgery is only done if symptoms aren't manageable conservatively (medication) and have significantly impacted your quality of life. In my case the neck pain was so severe that I couldn't be upright much of the time. To give you and idea - I'd compare the pain to childbirth.
Absolutely see a neurologist that knows something about Chiari (they can be difficult to find). Or go directly to a Chiari specialist to get an opinion and at least begin tracking, especially if your planning to have children. The strain of childbirth can affect herniation and bring about symptoms. Worth checking into.
I had my surgery at The Chiari Institute, Drs. Bolognese and Millorat (now retired). Dr. B explained that surgery is only done if symptoms aren't manageable conservatively (medication) and have significantly impacted your quality of life. In my case the neck pain was so severe that I couldn't be upright much of the time. To give you and idea - I'd compare the pain to childbirth.
Absolutely see a neurologist that knows something about Chiari (they can be difficult to find). Or go directly to a Chiari specialist to get an opinion and at least begin tracking, especially if your planning to have children. The strain of childbirth can affect herniation and bring about symptoms. Worth checking into.
Don't waste time with anyone except a Neurosurgeon... imo.. and it may mean nothing now. There are further tests needed to determine if you have blockages or not
Hi and welcome. I too have a 6mm herniation and am very symptomatic. I pray every day that my Neurosurgeon will do surgery (SOMETHING) to make it better. I have severe headaches, neck pain, pain in both legs, lower back, and I just started a new symptom. My skin hurts. It hurts to have clothes touching my skin and my eyes are foggy. I also have syringomeylia (syrinx) on my spine along with numerous Tarlov cysts. Because of this, I have difficulty sitting.
I say all of this so you can see the differences in how the same size herniation effects everyone differently. It's a long journey with the doctors but be persistent and don't give up!
Kim
I say all of this so you can see the differences in how the same size herniation effects everyone differently. It's a long journey with the doctors but be persistent and don't give up!
Kim
2 Comments
Kim, I know this message was in 2013 so not sure if you will read this but I curious how your case turned out. I just found out about my Chiari and I also Tarlov Cysts all the way up my spine, the largest are at S2. I'm at the beginning of this journey and there are so few of us with BOTH of these conditions. Any help would be appreciated. Thank you
Hi it is possible to get in touch with members that may not be an active member at this time by sending a PM (private message) that should generate an e-mail and let the member know you are trying to make contact.
Eruk...
Since the only effective long term treatment is surgery, yes you should see a neuro surgeon. Some neurologist may be more likely to dismiss your condition or lean towards prescribing medications which will may or may not make you feel better temporarily but does nothing to correct the root cause. I hope this helps you. Don't hesitate to ask questions anytime :-) Lisa
Since the only effective long term treatment is surgery, yes you should see a neuro surgeon. Some neurologist may be more likely to dismiss your condition or lean towards prescribing medications which will may or may not make you feel better temporarily but does nothing to correct the root cause. I hope this helps you. Don't hesitate to ask questions anytime :-) Lisa
Thanks!
The trouble I am facing now is whether to see a neurologist or neurosurgeon. I have found a neurosurgeon with Chiari experience, but can't get an appointment for 7 weeks (his vacation and mine!). Should I be trying to see a neurologist?
My obgyn and PCP seem a little out of their depth...I am trying to navigate this myself and feeling a bit confused!!
The trouble I am facing now is whether to see a neurologist or neurosurgeon. I have found a neurosurgeon with Chiari experience, but can't get an appointment for 7 weeks (his vacation and mine!). Should I be trying to see a neurologist?
My obgyn and PCP seem a little out of their depth...I am trying to navigate this myself and feeling a bit confused!!
Hi Eruk
Wow I think most of us here would say that at some point yes, needing treatment is likely. You may be able to handle symptoms for years or may not even recognize them, but eventually one or more of them becomes pronounced. Other factors in life can be attributed to that process such as child birth, accidents etc. my herniation was 6mm when discovered as well, now is 8 with complete crowding and blockage of cerebral spinal fluid in the back. In short, your symptoms will let you know when and if you need to seek out help :-) Lisa
Wow I think most of us here would say that at some point yes, needing treatment is likely. You may be able to handle symptoms for years or may not even recognize them, but eventually one or more of them becomes pronounced. Other factors in life can be attributed to that process such as child birth, accidents etc. my herniation was 6mm when discovered as well, now is 8 with complete crowding and blockage of cerebral spinal fluid in the back. In short, your symptoms will let you know when and if you need to seek out help :-) Lisa
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