Just some questions!

General
1

Hey Chiarians,

Although I am still in the process of getting a diagnosis, given that my MRI 6 years ago showed low-lying cerebellar tonsils, I'm pretty convinced I have Chiari 1 or at least, a symptomatic type 0. As I've been researching, I've come across some conflicting information and I'm currently just trying to absorb as much as I can. Hopefully you guys could clarify some things?

1. Is Chiari progressive or not? I have read that it is and that it is not and I'm not sure what to believe. If it's not progressive, how come the symptoms get worse over time? Why would doctors just watch and wait then?

2. I noticed a lot of people have issues with not getting enough sleep. Is anyone like me, where they need excessive amounts of sleep (10-12 hours a night) to function? And still suffer from crazy fatigue during the day?

3. Is it normal for symptoms to feel better when lying down? Sometimes it's the only time I have relief from the dizziness, blurred vision/focusing problems, headaches, but it also enhances the tinnitus.

4. Is it normal to have days that are worse then others? Or should the symptoms be consistent and daily? For instance, I have very bad days where I can barely get out of bed, and when I do, I'm so dizzy I can't walk a straight line, I can barely see anything, etc. But then I can (mostly) function on other days.

5. Is it normal for the headaches to not be the worst symptom? I have issues with fatigue, vertigo, eye problems (focusing, pupil dilation, photophobia, floaters, blurred vision), major cognitive problems with memory loss and slurring/stuttering speech and word retrieval, tremors, neck/ear pain, numbness/tingling, etc. I do have headaches that consist of dull pressure in the back of my head but they are tolerable (most of the time - sometimes they get bad and shoot forward like a tension headache or behind my eyes).

6. I don't even know if surgery is an option in my case, but I'm trying to collect as much information as I can. So I ask - is surgery ever successful in treating fatigue? I've read stories where it helps with dizziness and such, but the fatigue combined with everything else is life-ruining.

7. Is surgery more successful at a younger age? I'll be 21 in a few weeks, been symptomatic for at least 6 years. Is there a chance it would work for me?

Any advice/answers would be greatly appreciated. You guys rock!

2

1. Is Chiari progressive or not? I have read that it is and that it is not and I'm not sure what to believe. If it's not progressive, how come the symptoms get worse over time? Why would doctors just watch and wait then?

I will answer this on my personal experience, YES chiari is progressive. why do they get worse over time- beats the heck out of me-lol- and why do docs wait and see- because 90% or MORE do not 1. believe chiari can cause ALL those problems, 2. don't understand chiari or 3. have no frickin clue!

*** I want to remind you GET copies of ALL testing preformed on you for your records for future needs***

2. I noticed a lot of people have issues with not getting enough sleep. Is anyone like me, where they need excessive amounts of sleep (10-12 hours a night) to function? And still suffer from crazy fatigue during the day?

Again from my own experience, before surgery and when symptoms were slapping me silly- i could sleep all day long and still be tired as you say. Since surgery I do not sleep well at night and often get worn out quickly during the day even just by traveling- I've since learned not to fight it and LISTEN to my body if it says sleep thats what i do.

3. Is it normal for symptoms to feel better when lying down? Sometimes it's the only time I have relief from the dizziness, blurred vision/focusing problems, headaches, but it also enhances the tinnitus.

i initally felt better when i laid down, until multiple symptoms slammed together at once- then it didnt matter up or down nothing felt better,,,,good thing i slept alot-lol

4. Is it normal to have days that are worse then others? Or should the symptoms be consistent and daily? For instance, I have very bad days where I can barely get out of bed, and when I do, I'm so dizzy I can't walk a straight line, I can barely see anything, etc. But then I can (mostly) function on other days.

Yep, welcome to the wonderful world of Chiari-ism

5. Is it normal for the headaches to not be the worst symptom? I have issues with fatigue, vertigo, eye problems (focusing, pupil dilation, photophobia, floaters, blurred vision), major cognitive problems with memory loss and slurring/stuttering speech and word retrieval, tremors, neck/ear pain, numbness/tingling, etc. I do have headaches that consist of dull pressure in the back of my head but they are tolerable (most of the time - sometimes they get bad and shoot forward like a tension hor behind my eyes).

Yep, welcome to the wonderful world of Chiari-ism

6. I don't even know if surgery is an option in my case, but I'm trying to collect as much information as I can. So I ask - is surgery ever successful in treating fatigue? I've read stories where it helps with dizziness and such, but the fatigue combined with everything else is life-ruining.

One thing you need to understand surgery is NOT a cure, it is basically a band-aid and provides relief- Many who have surgery remain with problems, and some even have complications from surgery ( i am one of them). IF you are going to consider surgery PLEASE make sure the Neurosurgeon you choose is an EXPERT in Chiari! Now that being said after my decompression I will say for the most part it was successful because I do not have the same amount of problems i had before BUT none the less i have problems, some are similar- My complication from my decoompression was Hydrocephalus which was odd because i did NOT show any signs of this at ALL!! prior in any studies- and I also have cervical stenosis, So now I play the game of which issue is causing which problems--- thankfully i think i found me a Neurologist who actually knows whats wrong with me!

7. Is surgery more successful at a younger age? I'll be 21 in a few weeks, been symptomatic for at least 6 years. Is there a chance it would work for me?

This i do not know, I am not even sure if there was a study performed as such,

3

Hey lissa, I can definitely understand the confusion, there is a lot of information out there and yet it’s not enough.

from my understandings point of personal viewpoint, chiari hits people different ways, there are those that are asymptomatic their whole life, there are those that are asymptomatic during childhood then become symptomatic during adulthood. In my case, I was symptomatic my whole life slowly progressing until I was hit in September then it started rapidly progressing. From what I have found and bee Tod by my doctors is that once you are symptomatic and you have signs of getting worse (progressing) surgery is the option. You have to watch your symptoms , there is a list that vs. Be found on this website.

  1. My doctors did play the watch and wait game with me…since September show most neurosurgery next week.
  2. Sleep is an issue for a lot of us and yes I am extremely tired
  3. I cannot answer this one any longer because use to be lying in my right side gave comfort now I’m miserable
  4. Yes you can have days worse than others
  5. Yes headaches are one of the main problems with chiari
  6. Talk to your neurologist and neurosurgeon for their recommendations
  7. I do not believe age is a factor I will be 41 in June maxi am having the surgery soon, I will let you know how it goes

I apologize for any typing or spelling errors my eyes bother me and my fingers hurt.

you are welcome to text me if you want 206-■■■■■■■■
also can say is be persistent and insistent with all of your docs

hugs

4

Hi There....

Lisa and Destini gave you wonderful insight....I personally do not have much to add to what they have said...I had surgery in 08 and though better than b4..still struggle with some issues..would I do it again?? yes.

WELCOME!!!!!

Peace,

Lori

5

Hi Lissa,

I am sorry you have been not feeling well for such a long time. Please know we are here to answer any questions you may have & if we don't know we will find out. Do you have a NL or NS? You of course will need a current MRI of the brain & cervical spine. Then I would make a list of the questions and symptoms you have to go over with your doctor.

1)yes- Especially if you are in an accident that involves your head and or neck, or if you develope a syringomyelia.

2)yes- I need 10-12 hours of sleep . Just to function.

3)yes

4)yes- Every day is different. Stress and Overexertion makes things much worse.

5)-Everyone has different Symptoms. Many have headaches post surgery.

6)-I have never know of surgery helping fatigue, but that is only from my experience.

Surgery is just a treatment to stop the progression of the Cerebullar Tonsils from blocking off your CSF from circulatng around your brain. Please do not believe anyone that tells you Surgery is a Cure.

7)Surgery seems to have better results as far as recovery and the degree of post surgical symptoms.

I hope you get some answers soon.

Tracy Z.

6

I've only been diagnosed a week and basically my doctor hasn't decided what to do with me. I'm having an MRI of my c-spine next week and then he will decide whether to refer me to a specialist. I have a lot of the same questions.

1. Not sure yet.

2. I am tired all the time. I sleep an excessive amount compared to the average person and some days it feels like I didn't sleep at all.

3. I feel better lying down with my head elevated a bit.

4. IDK what is normal being so new but I have good days and some days where I feel like I've been hit by a bus! Especially if I've done a lot the day before.

5. It seems like most people report headaches as the worst. I get headaches but I thought they were sinus and they are painful but not crippling. I have more trouble with numb hands and feet, burning pains all over, tingling, dizziness, brain fog, and pain in my neck/shoulders.

6. & 7. I would love to know these answers too! Though I'm 34, not really young per say.

7

Thank you, everyone, for your answers. It's so confusing and crazy trying to navigate through all the information on the internet. At least I know where to go with my questions! Thanks again.