My daughter had this condition and we went from doctor to doctor to try and get to the bottom of the problem. My own mother said she's probably making up symptoms for attention. No one knows their child better than their mother and I pressed on for answers! Thank God we finally saw a great neurosurgeon and got her diagnosed. She also developed a syrinx because of how bad her csf was blocked! My poor girl ended up having 2 surgies because the first one didn't resolve the problem. This happened when she was 12 years old. She's now 26 years old and has her masters in nursing and is working on the same floor she was a patient on,all those years ago! So thankful for all that you do!
My mom was diagnosed in the 80s with Pseudotumor cerebri/ intercranial hypertension. She was in her early 20s at the time. She had so many shunts to relieve the pressure and at one point she went blind due to the pressure. She suffered with it for decades and was mostly need ridden due to the pain, pressure, and vertigo. It wasn't until she was 51 that she finally got a neurosurgeon to diagnose chiari malformation. She was scheduled for surgery but died before she could have it as the years of her being bed ridden had affected her heart and she died in her sleep one night. A correct diagnosis came too late. She had so many doctors treat her like she was just being a complaining hypochondriac. One dr even accused her of being a drug seeker. It really upsets me to hear that this misdiagnosis is still happening. There's a major issue in medicine of doctors not taking women's pain seriously. Cost my mom her life.
I am so sorry about your mother. Not only did she have a premature death, she suffered greatly for years because of the incompetence of her doctors. I am truly sorry for your loss. May your mother RIP.
Just for kicks… I threw a screenshot of the MRI imaging without the measurements into chat gpt and asked why the scan wasn’t normal… it came back with: “From what I can infer based on the image provided, the MRI scan appears to show an abnormality near the cerebellum and brainstem area. There are a few possibilities for why this scan might not be normal: 1. **Chiari Malformation:** One potential abnormality in this region is Chiari malformation, where brain tissue extends into the spinal canal. This happens if part of the skull is abnormally small or misshapen, causing crowding of the brain at the base of the skull. 2. **Herniated Cerebellar Tonsils:** This could be related to the cerebellar tonsils being displaced downward, which can cause pressure on the brainstem or spinal cord. 3. **Brainstem Compression:** Compression in this area may suggest a structural issue or something like hydrocephalus (an accumulation of cerebrospinal fluid). These are just hypotheses based on what typically causes abnormalities in that region of the brain on MRI scans. If you have more information about the context, I can offer a more specific interpretation.” It would seem that, while AI in no way replaces clinical reasoning and a human physician… it can be quite a useful tool when you have hit a diagnostic wall or don’t know who to refer a patient to see outside of your specialty.
Nurse here! We do use an AI to read our reports called Gleamer. We just started using it in our hospital system about a month ago. We use it in the ER/urgent care to help us see fractures before the radiologist has a chance to read it. The radiologist has the final say but the tool has thus far been very useful. I'm interested to see where it goes from here
Thank you 🙂 someone out here needed to hear this for encouragement to keep on going and not let self doubt keep them from being properly diagnosed. Be well to anyone who needs to see this. Be well. I'm going to try to be braver myself when I go back to my primary.
You are a hero. Patients advocating for themselves is also key here and this patient has the faith in herself to persistently seek treatment and not just accept a life is disabling pain and functional weakness. She’s smart and she met a smart doctor to meet her on her level and take care of her needs appropriately. It’s important to keep seeking answers bc you never know if one diagnosis or even a series of them are wrong based on one misread or just a miss in testing and imaging which is often carried forward in a a patient’s medical history. Love the info in these case studies.
HOLY SHIT!!!! These are my EXACT symptoms and my EXACT diagnosis I was given. Never had surgery in my life and now I’m scared but definitely thinking about going for a second opinion 😭
As a fellow patient with Chiari malformation I knew exactly what she had wrong with her. Now could we get other neurologists and neurosurgeons to understand that chiari can cause symptoms no matter how big or small the cerebellar tonsils are herniated. How do we get a cine flow MRI and do you find it valuable to do upright MRIs? As a GA resident there are a very limited number of providers who even understand Chiari. None in Augusta unless you are a child. Always enjoy your videos Doc!
It appears that there seems to be quite the connection between CFS and Fibromyalgia misdiagnoses of the upper cervical spine. Having experienced those exact same diagnoses, and years later finding out I had a problem in my cervical spine, I’m so glad to hear that this patient came to you for a second opinion, and received the proper diagnosis and care.
Dr. Grunch thank you for these case studies they are very interesting to see. Not a dr. Or in any medical field still very interesting. I appreciate you! Stay safe stay great and keep up the good work!!!
It took my sister years to get diagnosed with chairi! She was sick everyday vomiting, with horrid headaches. Thankfully she was able to get surgery and completely recover.
Wow I was diagnosed that as a secondary to pseudotumor cerebri. I received a vp shunt and doing well. I had massive headaches for 20 years. Since surgery no headaches of any kind. Eye doctor started my diagnosis that something was wrong. Thank you for explaining. 💜💜💜
Sincerely, is it acceptable to reach out to the original physician & inform them of this honest mistake? You know, so that they can do better in the future, or is that a big no-no?? I mean, aren't all doctors suppose to be learning & educating themselves, all of the time? ❤❤
That is why those second opinions should always be an option, even a third if needed - patients need the right answer and if there is a question about the correctness insurance should cover those second consults, with specialists when the pcp has honestly done all they can… patients aren’t usually crazy, most often they just haven’t been heard… specialists are a crucial part of patient care, patients need to understand their pcp sometimes needs that extra help to figure these things out…❤
This is crazy. My eye doctor has been telling me to see a neurologist for probably a decade for my recurrent headaches I’ve had since I was a child. I looked at the list of symptoms and I have every single one 😅 but I can’t even get diagnosed with fibromyalgia or cfs. No one cares. I have seen a neurologist once as a teen and they traumatized me. I really don’t want to go back.
Do it there are great doctors out there. Life isn’t too short. My eye doctor found my issues Trust them. Reach out to chat for doctors. List your state they will hook yours up I✝️💜✝️💜✝️
My BIL didn't get his Chiari diagnosis until he was a teenager having excruciating headaches. He'd had issues with his health for several years before they finally looked at his brain.
I have hypermobile Ehlers Danlos and was misdiagnosed with fibromyalgia. The doctor who diagnosed me gaslit me. I am always nervous about being misdiagnosed due to radiological reads.
Part of the problem is that the prescriber of the MRI does not give a clear indication for the MRI study. The prescriber should say something like, "rule out Chiari, patient complaining of headache and other Chiari symptoms". If you don't tell the neuroradiologist what to look for, they may not focus on the thing that is hidden in plain sight.
my bestie was 14 when she was diagnosed. she had an bad burn on the bottom of her foot. her mom saw the burn when she was sitting in a lounge chair and her bare feet up....the weirdest part was that my bestie was totally unaware of that burn. no pain at all. turned out she didn't have hot/cold sensations on that side of her body along with other issues. she had surgery and is still alive and kicking. she still is numb to pain and temperature on that side of her body and always gets shots and blood draws on that side 😂
**in her case, the surgery involved adding a shunt for the fluid to flow thru. I'm guessing hers was congenital. she was born with a club foot and also diagnosed with scoliosis at the same time the chiari malformation was diagnosed
I have chronic back pain. N just cause it’s not a pinched nerve. It’s just said that arthritis. Also very weak n tired a lot. I do deal with depression. But the sharp pains I get in my lower back. Effects me daily. N I can’t get real answer. Anyone have any idea what would cause strong pain if I ever lay on my back for a short period it hurts so much to get up I grind my teeth. Or lay down n getting up. Sharp pain. Lot of times feels like it’s locking up Hard to explain
So many drs don't know enough of this condition. It's generic in my family- some of us are worse than others. I was at 11mm before they even gave me surgery out fs is NOT a cure but can help... at least for me 🤷🏼♀️.
We have to be our own advocate but specialists are hard to get in to see, expensive, and often as dismissive as the ER & PC doctors And women are often dismissed and diagnosed with fibromyalgia
If I could afford it, I would come see you. But I cant afford the flight right now. And Im 99% sure my body wouldnt handle getting to you by ship, so it has to wait, as I live on an island in the pacific ocean. I would love to know your opinion!
DR. Grunch studied for years and worked hard to be the hero this patient needed.
I love when a doctor truly loves what they do and try to right by their patients… ❤
My daughter had this condition and we went from doctor to doctor to try and get to the bottom of the problem. My own mother said she's probably making up symptoms for attention. No one knows their child better than their mother and I pressed on for answers! Thank God we finally saw a great neurosurgeon and got her diagnosed. She also developed a syrinx because of how bad her csf was blocked! My poor girl ended up having 2 surgies because the first one didn't resolve the problem. This happened when she was 12 years old. She's now 26 years old and has her masters in nursing and is working on the same floor she was a patient on,all those years ago! So thankful for all that you do!
My mom was diagnosed in the 80s with Pseudotumor cerebri/ intercranial hypertension. She was in her early 20s at the time. She had so many shunts to relieve the pressure and at one point she went blind due to the pressure. She suffered with it for decades and was mostly need ridden due to the pain, pressure, and vertigo. It wasn't until she was 51 that she finally got a neurosurgeon to diagnose chiari malformation. She was scheduled for surgery but died before she could have it as the years of her being bed ridden had affected her heart and she died in her sleep one night. A correct diagnosis came too late. She had so many doctors treat her like she was just being a complaining hypochondriac. One dr even accused her of being a drug seeker. It really upsets me to hear that this misdiagnosis is still happening. There's a major issue in medicine of doctors not taking women's pain seriously. Cost my mom her life.
I am so sorry about your mother. Not only did she have a premature death, she suffered greatly for years because of the incompetence of her doctors. I am truly sorry for your loss. May your mother RIP.
Thank you for your kind words.
Just for kicks… I threw a screenshot of the MRI imaging without the measurements into chat gpt and asked why the scan wasn’t normal… it came back with:
“From what I can infer based on the image provided, the MRI scan appears to show an abnormality near the cerebellum and brainstem area. There are a few possibilities for why this scan might not be normal:
1. **Chiari Malformation:** One potential abnormality in this region is Chiari malformation, where brain tissue extends into the spinal canal. This happens if part of the skull is abnormally small or misshapen, causing crowding of the brain at the base of the skull.
2. **Herniated Cerebellar Tonsils:** This could be related to the cerebellar tonsils being displaced downward, which can cause pressure on the brainstem or spinal cord.
3. **Brainstem Compression:** Compression in this area may suggest a structural issue or something like hydrocephalus (an accumulation of cerebrospinal fluid).
These are just hypotheses based on what typically causes abnormalities in that region of the brain on MRI scans. If you have more information about the context, I can offer a more specific interpretation.”
It would seem that, while AI in no way replaces clinical reasoning and a human physician… it can be quite a useful tool when you have hit a diagnostic wall or don’t know who to refer a patient to see outside of your specialty.
Nurse here! We do use an AI to read our reports called Gleamer. We just started using it in our hospital system about a month ago. We use it in the ER/urgent care to help us see fractures before the radiologist has a chance to read it. The radiologist has the final say but the tool has thus far been very useful. I'm interested to see where it goes from here
So interesting. That girl must be so grateful to you. It must be such a relief for her knowing there was a physical reason for her symptoms.
I love that you encourage to seek a second opinion if you are still having issues… it’s so important to empower patients
God Bless you, Dr. Betsy. Thank you for talking about Chiari malformation and C1 C2 instability on your channel.
Thank you 🙂 someone out here needed to hear this for encouragement to keep on going and not let self doubt keep them from being properly diagnosed. Be well to anyone who needs to see this. Be well. I'm going to try to be braver myself when I go back to my primary.
You are a hero. Patients advocating for themselves is also key here and this patient has the faith in herself to persistently seek treatment and not just accept a life is disabling pain and functional weakness.
She’s smart and she met a smart doctor to meet her on her level and take care of her needs appropriately. It’s important to keep seeking answers bc you never know if one diagnosis or even a series of them are wrong based on one misread or just a miss in testing and imaging which is often carried forward in a a patient’s medical history. Love the info in these case studies.
I’m 13 days post op from chiari decompression surgery, thank you so much for raising awareness!!
HOLY SHIT!!!! These are my EXACT symptoms and my EXACT diagnosis I was given. Never had surgery in my life and now I’m scared but definitely thinking about going for a second opinion 😭
I'm so grateful this patient found you!
Dr. Grunch you are such a blessing! ❤
So, glad you were able to help this young lady. You are an amazing caring Dr. I always learn so much from your videos. Grammy from Texas
As a fellow patient with Chiari malformation I knew exactly what she had wrong with her. Now could we get other neurologists and neurosurgeons to understand that chiari can cause symptoms no matter how big or small the cerebellar tonsils are herniated. How do we get a cine flow MRI and do you find it valuable to do upright MRIs? As a GA resident there are a very limited number of providers who even understand Chiari. None in Augusta unless you are a child. Always enjoy your videos Doc!
It appears that there seems to be quite the connection between CFS and Fibromyalgia misdiagnoses of the upper cervical spine. Having experienced those exact same diagnoses, and years later finding out I had a problem in my cervical spine, I’m so glad to hear that this patient came to you for a second opinion, and received the proper diagnosis and care.
Dr. Grunch thank you for these case studies they are very interesting to see. Not a dr. Or in any medical field still very interesting. I appreciate you! Stay safe stay great and keep up the good work!!!
It took my sister years to get diagnosed with chairi! She was sick everyday vomiting, with horrid headaches. Thankfully she was able to get surgery and completely recover.
What type of chair did she have
I have a question. Should not mris be taken when the patient is standing upright
Wow I was diagnosed that as a secondary to pseudotumor cerebri. I received a vp shunt and doing well. I had massive headaches for 20 years. Since surgery no headaches of any kind. Eye doctor started my diagnosis that something was wrong. Thank you for explaining. 💜💜💜
I got learnt today. Ty for explaining and educating your viewers.
Sincerely, is it acceptable to reach out to the original physician & inform them of this honest mistake? You know, so that they can do better in the future, or is that a big no-no?? I mean, aren't all doctors suppose to be learning & educating themselves, all of the time? ❤❤
honestly, who cares if it’s considered acceptable! It feels imperative, and doctors need to know about these things imo
Very interesting! So glad she finally was referred to a neurologist.
My sister was diagnosed with this when she was in elementary school. She had one shunt placed then another when she was older.
That is why those second opinions should always be an option, even a third if needed - patients need the right answer and if there is a question about the correctness insurance should cover those second consults, with specialists when the pcp has honestly done all they can… patients aren’t usually crazy, most often they just haven’t been heard… specialists are a crucial part of patient care, patients need to understand their pcp sometimes needs that extra help to figure these things out…❤
So if you remove a small part of the skull, does it need to be replaced with something to protect the brain in that area?
This is crazy. My eye doctor has been telling me to see a neurologist for probably a decade for my recurrent headaches I’ve had since I was a child. I looked at the list of symptoms and I have every single one 😅 but I can’t even get diagnosed with fibromyalgia or cfs. No one cares. I have seen a neurologist once as a teen and they traumatized me. I really don’t want to go back.
Do it there are great doctors out there. Life isn’t too short. My eye doctor found my issues Trust them. Reach out to chat for doctors. List your state they will hook yours up I✝️💜✝️💜✝️
There’s only one thing to say…YOU ROCKED IT!
My BIL didn't get his Chiari diagnosis until he was a teenager having excruciating headaches. He'd had issues with his health for several years before they finally looked at his brain.
I have hypermobile Ehlers Danlos and was misdiagnosed with fibromyalgia. The doctor who diagnosed me gaslit me. I am always nervous about being misdiagnosed due to radiological reads.
Part of the problem is that the prescriber of the MRI does not give a clear indication for the MRI study. The prescriber should say something like, "rule out Chiari, patient complaining of headache and other Chiari symptoms". If you don't tell the neuroradiologist what to look for, they may not focus on the thing that is hidden in plain sight.
Does your staff help you with your social media accounts? Where do you find time to edit and post while being on call and performing surgery?
my bestie was 14 when she was diagnosed. she had an bad burn on the bottom of her foot. her mom saw the burn when she was sitting in a lounge chair and her bare feet up....the weirdest part was that my bestie was totally unaware of that burn. no pain at all.
turned out she didn't have hot/cold sensations on that side of her body along with other issues. she had surgery and is still alive and kicking. she still is numb to pain and temperature on that side of her body and always gets shots and blood draws on that side 😂
**in her case, the surgery involved adding a shunt for the fluid to flow thru. I'm guessing hers was congenital. she was born with a club foot and also diagnosed with scoliosis at the same time the chiari malformation was diagnosed
I have chronic back pain. N just cause it’s not a pinched nerve. It’s just said that arthritis. Also very weak n tired a lot. I do deal with depression. But the sharp pains I get in my lower back. Effects me daily. N I can’t get real answer. Anyone have any idea what would cause strong pain if I ever lay on my back for a short period it hurts so much to get up I grind my teeth. Or lay down n getting up. Sharp pain. Lot of times feels like it’s locking up Hard to explain
May I have a referral? To a dr that will take me seriously?
Thank god that woman trusted her gut to get a second opinion.
So many drs don't know enough of this condition. It's generic in my family- some of us are worse than others. I was at 11mm before they even gave me surgery out fs is NOT a cure but can help... at least for me 🤷🏼♀️.
I guess we can call it "Big Brain problems"...
Ha! I was right
We have to be our own advocate but specialists are hard to get in to see, expensive, and often as dismissive as the ER & PC doctors
And women are often dismissed and diagnosed with fibromyalgia
If I could afford it, I would come see you. But I cant afford the flight right now. And Im 99% sure my body wouldnt handle getting to you by ship, so it has to wait, as I live on an island in the pacific ocean. I would love to know your opinion!
Youre such a perfectdoc 🥺
You know, with all the BS that you come up with in your goof-off videos, this was a very good one.
May I have a referral? To a dr that will take me seriously?