Chiari Online Support Group

Help. Am I crazy?

#2

No… you are not crazy. See another neurologist (they prescribe medications), see a neurosurgeon (they do surgery), see the balance and dizzy exercises here on the site (might have to do them regular-like as your brain continues to be stressed). Basically, find people who can help.

I have found that it is more useful for my well-being to thank an unhelpful medical person for their time and excuse myself when I can see that the visit is no longer fruitful. I have to remember that it is not personal for them. They just do not know what is wrong and doctors do not like that feeling so it must be you and your mental health that is the problem!

If the neurologist really thought that a psychiatrist was the answer, ethically they should have referred you on. Otherwise, I suspect they themselves do not know what is wrong with you. Take care to not dismiss your mental health as an undiagnosed, wonky symptom illness can be rather concerning and flare up anxiety and stress.

I have found that it is helpful to ask medical folk what the symptoms of Chiari are in their eyes. I also suggest to view your MRI’s with them - both the sagittal and the horizontal views. Research yourself what are the anatomical structures that can be compromised with Chiari. What are the effects of compression on these structures? Can the doctor answer your questions? Just be careful of putting people on the spot as that is not recommended.

Carry on with the journey and know that most everyone here has had a callous appointment. It is unfortunate but also the way of the little known diagnoses.

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#3

Thank you. He said he has done lots of surgeries on chiari patients. He showed me the mri and said yep you do have chiari but chiari is just a structure problem, doesn’t cause your symptoms. I asked why is it that anything you read has the symptoms just like mine and it says chiari and he said yet again it is just a structure problem. I’m so frustrated going from doctor to doctor all ready. When i get really mad i cry first. I didn’t want medicine nor surgery. I just wanted answers by a guy who says he is a specialist. I left there thinking unless I’m knocking on deaths door i will not be back to see any doctor. I knw that’s not realistic but thats how he made me feel. My sister and one of my coworkers thinks im crazy anyway. He also said he deals with patients who has larger chiaris than mine. Mine is a 6mm. I guess mine just wasnt big enough to give me the time of day. I knw after a few days i might start looking for another doctor but i don’t know another doctor. That is a neurologist and a neurosurgeon that was supposed to be a specialist and wasn’t. I live in Tennessee.

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#4

Ditch that doctor and find another one if this is affecting your life.
Your symptoms are classic Chiari.
You have a 6mm herniation which is just a 1mm herniation through the foramen magnum which to someone who has never felt the pain of Chiari could be dismissed. Which is wrong.
Find a neurosurgeon.
I had a 12mm herniation and a neurologist told me my symptoms ( same as yours minus the migraines) were not related to Chiari and tried to tell me I had fibromyalgia.
2 weeks later a neurosurgeon looking at the same scans said that I absolutely needed surgery.
All the best

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#5

Keep looking for the right doctor. I was diagnosed in 2009. Doctors kept telling all the same things. I finnaly found help at the Cleveland Clinic. Don’t know where you live. Try to find a place like the Cleveland Clinic, Mayo Clinic. Just don’t give up.

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#6

Thank all of yall. I am looking for a new doctor. I live in Tennessee.

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#7

Yes, definitely find a new neurosurgeon. One who actually is a chiari specialist. Many may say “oh sure, I’m a specialist. I’ve seen and done plenty of surgeries for chiari patients.”

BUT THAT MEANS NOTHING.

While not common, there are neurosurgeons who focus their entire career on understanding and treating patients with chiari malformations. For someone with a small herniation, you’re going to be brushed aside by a typical neurosurgeon who often sees patients with 15mm herniations probably even with a syrinx. Those are the patients they are doing surgeries on.

However, a real chiari specialist’s understanding is much different. They see patients like us (mine is only 5-6mm) and realize there is more to our diagnosis than just a measurement.

Looks like you said you’re in Tennessee. Unfortunately you may need to go to a different state for excellent chiari care. I went to the Wisconsin Chiari Center in Milwaukee, but like others said Mayo is always a great option too.

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#8

Hey!
I am 21, I had the surgery at 17 with Boston Children Hospital, and I had a Chiari length of 24mm. I had every symptom you listed excepted for the Migraines. Some days were worse then other and some days I felt great. I can say sense my surgery I rarely get any of my symptoms any more! I do not think your crazy! your symptoms are consistent with Chiara. I would recommend finding another doctor! Different factor effect people differently, but you do have symptoms other with chiari have and you have the herniation. I wish you the best of luck! just keep strong and faithful to what you know!
I found have a notebook record data on when I got worse to when I felt better help my neurosurgeon, and also using that same notebook to date the days I had MRIs or saw the Neruo team and what they said to me and further what questions I asked them. I also being so young had a guardian with me but I found it helpful because they could take a step back and look objectively and ask the harder questions that I didnt really want to know!
Im rooting for you! and BELIEVE YOU, Chiara strong!
<3, Nicole

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#9

Hi honey, I’m in TN also and unfortunately had my first decompression here by one of those so called Specialists. I got screwed up. Also been told im crazy, etc. there are no Real Specialists here. I had to go out of state. I did lots of research and ended up going to NYC to see Dr Greenfield. Who is amazing by the way and a true specialist in Chiari and the conditions that go along with it. You have a lot of the same symptoms I had before my surgery with him.

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#10

You poor thing no one deserves to leave the offices of their specialist feeling bad about themselves. You’re symptoms sound very classic Chiari to me. I’ve read lots of literature and done lots of research and most good websites explain the measurement of a Chiari is not necessarily relevant to their symptoms. Someone can have a small herniation and have worse symptoms that a large herniation. In the case of Chiari size is of little relevance.
I think you’ve unfortunately gone to see a neurosurgeon who for whatever reason is not as knowledgeable or experienced as others in Chiari. And that’s okay they can’t all be specialised in every disease the human body can have. But… if only they would admit they’re not sure, can’t help and refer you to someone who can. This would save much heartache and suffering for people already faced with with challenges

#11

Hi rooster.
This is my first post. I’m so sorry you’ve got to go through the same things we’ve been dealing with, even though your young. When you’re young and complain of such things, you’d think the doctors would want to get to the bottom of it!

I just wanted to let you know what I learned from my friends non-conventional Neuro: ‘when specialists don’t want to go further in your case’ (either they see too many complications or they just don’t feel qualified)… they will actually ‘use tactics to make you drop them’!
#1 tactic is telling you:
it’s all in your head…its stress… you need a psychiatrist.
With myself, I’ve found that the diagnosis of fibromyalgia or chronic fatigue syndrome makes doctors RUN.

It’s really hard to deal with such cruelty from professionals (or if that’s not their reason… stupidity).
I try to imagine them as normal people trying to make a living, doing as little as possible in order to spend as much time with their grandchildren while still sending them to college. Grumpy old men, some of them.
What makes it worse is the part of our brain that is compressed and lacks spinal fluid flow, deals with our autonomic system. That includes fight or flight feelings, anxiety etc.
So every time I get humiliated or let down by a Dr, I still bawl all the way home. It’s nearly impossible to not take it personally when you invested in them so much time, energy and most of… hope.

Nearly ALL neurologists dismiss Chiari 1 from mri’s because most of the patients that have this herniation have no complaints. The problem is, when there ARE complaints, they need to schedule a spinal flow test. The root cause of the symptoms is the lack of spinal flow or the force of partially blocked spinal fluid, compresses the brain stem, cerebellum, causes further herniation through the years and pockets of fluid in the spine.

I’m fighting to get my 4yr old daughter scanned and tested. Even though she has all the symptoms that I have from Chiari, (gags nearly every day, aspirated her food, her feet pool with blood, has double vision and coordination problems, neck/head pain etc) But because when doctors/pediatricians look up chiari, they read about how common it is and most gave no symptoms… they tell you scans are not necessary. :rage: Boils the blood.
But I just wanted to tell you you’re not alone. Also with your pregnancy 4yrs ago, did things get worse? Did you an uneventful epidural?
Hang in there!

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#12

Dear roosteradh08,

You live in Tennessee?!? You are my ‘neighbor,’ then. I went to one of the BEST Chiari neurosurgeons in Hendersonville, NC - Dr. Michael Rosner. He was one of the very first neurosurgeons to do Chiari decompression surgeries - and he’s been in a number of ‘fusses’ with the state medical system because he’s been so… well… progressive with Chiari treatment. I don’t know how close to the NC border you are. (Tennessee is a long state) But, I ended up having to see several neurosurgeons in and around Charlotte - and they all said I didn’t even have Chairis!!! (my ‘brain ooze’ was out the sides of my skull - not out the very back - so all those Charlotte neurosurgeons missed it entirely.)

I found Rosner to be brutally honest with me, though. He’s treated thousands of Chairi patients from around the world - and he did tell me that post-surgery decompression healing was anywhere between 0%-100%. I was willing to take the chance as I was in SUCH agony 24/7. I ended up with 75% recovery after the decompression surgery -and loving it! The 75% improvement was much more life than I had WITH Chiairs;

#13

Thanks everyone! I am so thankful for this group.

#14

Wow. Thank you. I am 6 hours from there. I am right at the Alabama state line in a little bitty town. I will definitely look in to him!!

#15

Sounds like you had a bad appointment, unfortunately I’ve learned they happen too.

In my case a Neurologist told me something that did not make sense, fortunately not only could I find credible information that contradicted his diagnosis but also another Neurologist who seems much more thorough and who has come up with more logical investigations (I have tried to hold back on supplying any of my “ideas” :slight_smile: ).

In your case the symptoms all sound like they could be Chiari related, it fits at least, so until there is some proof what it is it has to remain on the table.

Here I do find it frustrating where medical experts either dismiss it out of hand on fairly useless evidence, or latch onto something that requires ignoring all the other symptoms or adding in a new symptom. I can understand diagnosing is a tricky business and sometimes we are never 100% sure of anything, but I’d rather they were completely honest than just went with something random because they had to say something.

Out of interest, have you been able to measure your heart rate during these headaches? If the headaches are due to raised inter-cranial pressure then raised ICP also depresses your heart rate, it is worth monitoring it even if it is on a simple fitbit watch as it gives some useful evidence of things going on, I use mine to tell when a headache starts getting serious when my heart rate drops low enough.

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#16

Hey. I have not heard of ICP but i am going to look in to it. I have never measured my heart rate other than when i had my mirganes that sent me to the ER. I have Hemiplegic Migraines but dnt get then very often. I dnt remeber my heart rate being off then but i have all my medical notes so i am going to go back and look. This last week my head has been great but my back is another story. Thought i had the 24hr stomach but i had to go to the ER since I was so sick and because I have some issue going on with my potassium but they said it was not the stomach bug. Test showed infection. They dnt knw where. I have been having issues with my kidneys. Does anyone else have kidney problems? Said it wasnt a UTI. I got antibiotics and fluids but still fill bad. I have to have more blood work Monday to see if one of the levels have went down. Said if not then it could be my liver instead of my kidneys. Quick run down. I am on 2 HCTZ pills a day. Have been for 5 years. If i do not take them i swell. Can not miss a dose. Never have an issue till Nov. Potassium was critical. Long story short. I take 11 potassium pills a day now along with the HCTZ pill and Aldactone. Had blood every week since Nov to watch potassium and every week we have had to go up on potassium pills. Kidney GFR is anywhere from 49-78. Looking at going to see someone after this blood work Monday.

#17

I had a kidney issue registered in my hospital notes back in 2016, it was some sort of crises declared after a blood test came back bad. But that one probably was more to do with a bad reaction to a drug (Stemetil)

Otherwise I’ve not heard of anything kidney related. The ICP thing is a general one, if you find your heart rate goes low, especially if it drops during the worst bits of a headache then its possibly you have high ICP. Shouldn’t diagnosing something though just based on this when there can be so many causes, so I’ll leave that one to the experts :slight_smile:

But its definitely something to look for to see if the headache has something particular about it that needs to be investigated, so if things are not going anywhere and you notice this then its useful information to nudge things along with.

For example I noticed, more by accident, that my SpO2 dropped spotaneously during the worst bits of my headaches (I brought the meter to record my stats over night to check for sleep apnea). No explanation exactly for what is going on, but it seemed to get some response better than “its just a migraine, take xyz and hope it goes away”.

#18

I seem to have the same problem. Have been told that mine is not bad enough on a scan to be causing my headaches. My symptoms on a daily basis are:
Tension headaches/ pressure at the back of my head
Migraine
visual disturbances/blurry vision
tinnitus
dizziness
neck and shoulder pain

I have been backwards and forwards to hospital and doctors seen neurologist who all say that it is not chiari that I just suffer from migraine.
I haven’t even been told how many mm my herniation is??? I have just been told it is not any thing to worry about. how can this be when I feel so rough ALL the time???

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#19

Hey Lisa,
“I ‘just’ suffer from migraine.”
Sorry but there is no ‘just’ about suffering with migraines. It can be rather easy/simple for a non sufferer to make such statements, but for the individual who has to live with such pain, it ain’t that simple. I too suffer from what I call ‘head pain’. I’ve lost count of how often if I say I have headaches and people say ‘Ohh I get them too’. What I want to say in response ‘Not like these you don’t. I don’t get simple headaches, rather I get nauseating, mind numbing, explosions of agony’, but trying to express it as a headache is just inadequate. Those who haven’t been there really have no clue just how bad the pain can be. So trying to relate it to a non sufferer… …impossible. So I now just call it ‘Head pain’.

But, I must say I too have all of those symptoms, but no chiari. I have been trialled on every sort of migraine type med, none of them worked. It may be of benefit for you to find a physician, someone to investigate the ‘whole you’ until you can obtain a comprehensive diagnosis. Some pcp’s can be great for your normal, run of the mill conditions, but for more complex issues you may actually need a proper investigating physician. Someone to look for an answer rather than give a simple diagnosis.

I hope it helps
Merl from the Moderator Support Team

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#20

I waited 12 years before having surgery because of my small children. I had surgery at Johns Hopkins. You don’t need anyone’s permission to take care of yourself. Get copies of your MRI and records from every visit. I love my neurologist but she did not think I should have decompression but it was not her dec to make. I no longer suffer from pain in the head while moving my bowels. Yes, every single time feeling like my head would explode and I could not breathe. She did not recommend the surgery. I was not crazy and you are not either. My life is still full of pain but just not that one anymore.

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#21

Hi i too think your symptoms fit. We have probably all had bad experiences with our specialist at some stage so try to ignore the bad comments and find a new neuro. I am in ireland and neuros are hard to come by but sometimes i feel so frustrated with the one i am with. Stay strong.