Chiari Online Support Group

Feeling so discouraged and scared

#1

Mostly discouraged because I don’t even know if Chiari malformation is my problem. I had an MRi in March because of dizziness (which was gone by the time I had the MRI as it took 2 months to get it!) but in the report there was an incidental finding of a borderline Chiara which was “stable compared to prior study.” Prior MRI was in Feb of 2015 due to problems with dysphagia and there is no mention on that report of Chiari. So I had an MRI in 2015 and 2018, both for different problems either of which may or may not be caused by Chiara. No matter what, none of the medical people I’ve seen or who have read the report seem to think there is a connection or problem.

I went back to my ENT last week because of sudden onset of extreme dizziness, unsteadiness, headache, hyperacusis, etc. She diagnosed me with vestibular migraine and said to f/u with neurologist. I asked her for a copy of the MRI report (from 4 months ago) and it wasn’t until I got home and read it that I saw I had a borderline Chiara malformation (that was a new one for me!). The next day I had an excruciating headache and neckache and went to see my pcp, he prescribed a muscle relaxant and sent me on my way. I think that may have been caused by the ent testing me for bppv and therefore turning my head sharply to each side for a minute, always a very difficult and uncomfortable position for me.

My head and neck are somewhat better but I have other symptoms that nothing helps - some of these are long-term ongoing, others are new just in the last week or two since my recent episode of dizziness.

remnants of bad headache

hurts behind eyes

stiff neck, limited rom

motion sick feeling

some difficulty talking, words don’t come out right

brisk deep tendon relexes

feels like I am walking on pillows (new problem)

hyperacusis - extremely sensitive to noises, especially the typical noises of doing dishes (new problem)

strange sensation when touching certain parts of the left side of my face (kind of like a mild painless electrical shock) (new problem)

fatigue

off and on nausea

thinking problems

cannot walk and talk at the same time, makes me feel very dizzy (new problem)

vertigo (not currently but have had several spells in the past, nothing recent)

much difficulty walking, legs and hips feel like they don’t want to work, this has been going on since Jan of this year but just in the last week has become much worse. Hip and knee xrays were negative for anything.

difficulty swallowing, problem is with liquids and in initiating the swallow, ongoing problem which was the reason for my MRI in 2015.

esophageal problems that I don’t know even how to explain, just weird sensation that makes me feel like I’m going to gag.

I’ve been worked up and have had many tests. I saw the neurologist 3 times over a year and half period and he found my deep tendon reflexes were very brisk. He was slightly concerned a first but as there was no change over the next two visits he said “anxiety” and no need for further testing.

I know darn well my problems aren’t from anxiety (though yes, they are now creating anxiety). My neurology appt (new neurologist) isn’t for another two months (and no, I can’t call and demand to be seen sooner). Until that time I don’t know what to do. I’m frustrated and upset because I don’t know how I can even go to work tomorrow. I don’t have the kind of job that I can easily miss. I’m scared because I don’t know what is wrong. No one seems to think Chiara is my problem, so if it isn’t then what could it be? I was diagnosed with vestibular migraine or menieres or labyrinthitis (their best guess) 10-12 years ago, that might be right or might not.

I really don’t expect anyone here to have the magic answer, mostly I’m just venting because I’m so frustrated and feeling this way for so long without any real answers. I’ve had 3 doctor visits to two doctors in the last week and their diagnosis was more of a shoulder shrug than anything else.

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#2

I’m sorry you are going through this! It’s a horrible burden to manage most days and even tougher when you feel like the medical specialists are not helping. I’m in the same boat, sadly, so I completely understand. I do hope that they are able to identify your ailments soon and treat them!

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#3

I’m so sorry you are going through this. You are not alone. I also share many of your symptoms, and have had little success with my neurologist as well. I’m here if you ever need to vent :grinning:

#4

Your description of symptoms is very Chiari oriented. Choice of doctors is paramount and as a primary care physician an Internal Medicine doctor is best. MRIs detect Chiari, but CINE MRIs verify if you have blood flow to the brain and proper cranial fluid flow also.
When I found out I had it in 2009 I read the report and told my general family physician that I wanted to see a neurosurgeon; her feelings were do nothing. I saw the surgeon and he specialized in Chiari.
When the decompression was done there was more crowding than the MRI had shown and they removed my C-1. Post op one week I had complications of to much fluid on the brain and after several days in intensive care with a temporary drain I recovered fully.
At my six month check up I hugged my surgeon and said I had a new life.
Stay the course and choose your doctors carefully; I had to go a long route for that and a friend mentioning-Internal Medicine was my savior.

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#5

I’m having a hard time remembering things my life is fallen apart i can’t work i dont have medical insurance dfcas said i dont qualify. I have to keep calendars or notes for everything i hardly sleep i have really bad time when i do i wake up wet from pee not aware. Everything is a fog i have three children i miss appointments and all because i forgot or dont recall i cant do anything in order you will have to tell me more than once and ive forgotten again before you explain i cant dance play games if u say left ill go right i cant give directions. I thought the surgery would fix me it didnt. I cant learn new things it doesnt process i dont even recall what happen 3 days ago it gets me into trouble nobody believes me or helps then people take advantage of me in some ways because they no i dont remember anyway.

#6

My 12 yrs old daughter has alot of the same symptoms. She is unable to attend school and had to do home bound schooling. Her neurosurgeon advised surgery but she has to lose a total of 20 lbs. She has 8 more lbs to go and he will schedule her decompression surgery. We talked to SEVERAL doctors until we finally found someone to treat my daughter. Just remember that you are not alone. We are all here when you want to talk or just to vent.

#7

I have a lot of your same symptoms! Especially the dysphasia (liquids and initiating a swallow)… they never told me about mine for 6 years I thought I was crazy! I had borderline Chiari was never told in 2009. Had so many issues and symptoms and tests that my doctors blew me off. In 2015 I had another Brain mri that revealed my Chiari malformation with a 9mm herniation at that time. I truly need surgery but have been putting it off bc the recovery sounds rough and I’m so busy with my kiddos! I just wanted to give you validation that your symptoms do sound like they are Chiari related & I hope you are able to get relief! Sometimes lifestyle changes help, gentle exercise etc… but everyone is so different… sometimes surgery is the best option too.

#8

Have you tried any cognitive retraining therapy? This sounds silly, but it your doctor doesn’t offer your cognitive retraining therapy, try to do crossword puzzles and word searches in the meantime.
Also if you are allowed, Omega 3 is helpful. Good luck to you!

#9

Hi Janey! I’m so sorry to hear all that you are going through. My 20 yr old daughter is going through many of your same symptoms and has been for 2 years. Hers was never seen on an MRI because it is under 5 mm and that’s when radiologists will report herniation measurements. We just had a neurologist order an MRI but not request measurements and I had seen my daughter’s MRIs come back with “no Chiari malformation present” on it so this time I wrote in big letters across the patient form, “Please report ANY Chiari measurements”. And I spoke to the xray technician begging him to relay the info. It worked! They reported herniation of 3.8 mm and 4.4 mm. Under the 5mm but now considered Chiari since 3mm - 5 mm is borderline Chiari.

So, all you can assume from your report that your herniation is between 3 - 5 mm and that’s why they are calling it borderline. You are lucky that they radiologist considered it and wrote Borderline on it because on the last two MRIs they wrote nothing yet it must have been under 5 mm. We finally have a direction to head in! And I hope you do too.

You may want to call once a week to see if there have been any cancellations with your neurologist. My daughter’s neurologist wouldn’t give her the time of day regarding Chiari even with the new measurements. Her primary care is who believes and supports my Chiari findings. You may want to go that route and get referred to a neurosurgeon. I took in a complete list of medical issues and symptoms that are Chiari related. Look them up. My daughter had mild cerebral palsy, mild scoliosis, sleep apnea, worse when bending over, starts at back of head and moves towards eyes, etc, all the failed meds (46!), and then her current symptoms plus the MRI results . I also had researched the fact of “3 - 5 mm herniation with symptoms” can be Chiari and told her about the research. She was totally behind us and impressed with all the medical history and symptoms. You might want to try your PC now for a neurosurgeon because that will be a wait too. If your neurologist gets on board he will then refer to a neurosurgeon and will be another two month wait.

Another thing that we also just found out was that a keto diet is helping immensely!! Her pain level has been reduced from 6 - 8/9 daily to a 3 daily that will spike to a 5 with any activity but go back down to a 3. She has never experienced a level 3 pain in two years! It started out at a 5 and only went up to 10 and usually stayed at 8. It still shows that the malformation is there causing pain but the keto diet has reduced the inflammation and made it more bearable.

Good luck and know we are all in the fight and support you too. Barb