Chiari Online Support Group

MRI's - why is my Chiari ignored?


#1

I had an MRI in Jan of this year as I was having an episode of extreme imbalance, severe headache, neckache, hyperacusis and a couple more neurological symptoms. It showed an incidental finding of borderline Chiari, stable compared to 2007 MRI.

The 2007 MRI was because I was having severe vertigo attacks. I also had an MRI in 2015 because I developed dysphagia (and still have it). Neither of these mentioned the Chiari and other than the one mention of borderline Chiari everything was normal. I also had an MRI about 20 years ago for vertigo but don’t have that report, and had a CT scan about 15 years ago for severe headache but don’t have that report. I was told all was normal.

I’m curious - if I’m presenting with symptoms that are consistent with Chirari (vertigo, dizziness, dysphagia, imbalance, bad headache and neckache, dysphagia, etc.) why would the MRI be written off as normal with just a bare mention of an incidental finding on one of the reports? Are there other findings that they should see on the MRI that would indicate Chiari and without those one probably doesn’t have it (I’m not asking about CINE, just asking about a regular MRI). Why would it be mentioned on one report only? Does the referring neurologist see anything other than the report I have in hand? Do they look at the MRI, do they get an additional report? Is borderline too small to bother with?

Whether or not my symptoms are from Chiari I honestly can’t say for sure. But so far, other than “vestibular migraine” doctors haven’t been able to find any other reason. The only neurological abnormality my neuro could find (2 years ago) was brisk deep tendon reflexes with clonus. I saw him at 6 months and 1 year and there was no change so I was “dismissed.” Now I find that this is a symptom of Chiari. I see an ophtahmologist this week (for an enlarged optic nerve) and a new neurologist next month. So afraid I will be brushed off again (or worse, will be found to have a brain tumor).


#2

I am sorry to hear about all the brush offs. The same thing happened to me with two MRI’s being dismissed by the radiologist, then in turn by a handful of neurologists and other speacialists. Please keep in mind that radiologists are not neurosurgeons and are not able to tie a clients symptoms with radiological findings. Radiologists see descended cerebellar tonsils “all the time” in people with no such symptoms- of course the percentages are not what you and I think of as “all the time”. In regards to Chiari findings, they report what they see and leave it up to other specialists to determine if it is an actual concern. Radiologists typically do not remark on the horizontal view of the foramen magnum. If you do not know what this view is, please research and be prepared to ask specialists.

Also keep in mind is that if the radiologist does not raise a red flag on their radiological findings, then a neurologist is not going to be too concerned. Typically, a neurologist does not even look at the actual images - just reads the MRI report. Also, a neurologist might not even see very many people with Chiari findings on an MRI report AND talking about Chiari symptoms. One of my neurologists had been working for over 30 years and had seen one patient with Chiari at the beginning of his career. Needless to say, he did not know what to do with me and was fuzzy on what Chiari symptoms are. Often, a standard neuro physical assessment is not going to reveal much neurologically going on.

Discouraging with the gaps in medical knowledge and coverage - yes. What to do about it? Ask questions and be knowledgeable.

Ask a radiologist/neurologist to review your MRI with you 0- saggital AND horizontal view. The saggital view reveals the length of the descension while the horizontal view indicates how much of the foramen magnum is filled with descended cerebellar tissue. A neurosurgeon needs to review both in conjunction with your symptoms before making a decision of surgery.

Ask your neurologist what he knows about Chiari symptoms?
Does it fit with your presentation? What criteria does he use to refer to a neurosurgeon?
Are there other concerns or medical issues that need to be ruled out?

Does he feel that psychological issues need to be ruled out? Some times doctors bring this up as a way to get rid of you as they do not know what to do with you within their scope of practice. Try not to be insulted. You can say that psychological issues have indeed been ruled out so could we please focus on medical issues. It happens…

Ask to see a neurosurgeon. Ask the same questions.

I read somewhere that the average length of diagnosis for a Chiari patient is 5 years. It did not say how many doctors a person had to see. Carry on and continue to see specialists who may have a knowledge base appropriate to help you.

Please watch your attitude when discussing with specialists as they do not like their authority to be challenged. Approach the dialogue as a partnership with you desiring to understand and to find help. Presenting angst, hysteria, and hostility tends not to help. Of course the stress of being ill and not having any medical support does not bring out the best in us. Good luck with your acting skills!

Carry on the journey towards health!


#3

As Gabby mentioned, your story is frustratingly common.

In addition to supporting her suggestions(which are on point), alarms bells went off during your last sentence. There is an at least 5% incidence of idiopathic intracranial hypertension and Chiari. Most Chiari are congenital(we think most people are born with them). However, some patients will acquire the Chiari, most commonly in association with elevated intracranial pressure. The increased intracranial pressure looks for release and pushes the cerebellar tonsils through the foramen magnum, creating the Chiari. Treatment is very different for the 2.

“Enlarged optic nerve” may mean papilledema, which is evidence of elevated intracranial pressure. When you see the opthalmologist, specifically ask if there is a chance your eye findings could be related to elevated intracranial pressure. If they confirm that concern, make sure the neurologist is aware of your opthalmological findings. The veins in the eyes are the only ones we can see externally that directly communicate with the brain.

If the neurologist is sufficiently concerned, they can order a lumbar puncture(LP) to assess intracranial pressure. Again, it is important for them to know of your Chiari so they check pressure but do not perform significant CSF drainage(so you don’t draw the cerebellar tonsils down further). If your pressure is elevated, there is medicine to treat that(usually Diamox but the neurologist would handle it).

I hope these thoughts have been of some assistance and hope you are traveling down a more fruitful path!


#4

Thank you for your helpful comments and hints on dealing with the doctors. I saw the ophthamologist yesterday, and just read your response tonight so couldn’t ask about intracraneal pressure. She did say one optic nerve was larger but it looked to her like a variant of normal. I had my pupils dilated and they took several pictures, a couple of which she showed me. Much as I would have liked to ask her something like that I don’t think I could because it would come off sounding like I spend half my days with Dr. Google (which unfortunately I do sometimes). I hope I do better with the neurologist!


#5

My goodness - I could be writing nearly this exact post. I had vertigo, dizziness, headaches, neck pain, hypercusis, for years (since 2001). I also have clonus & am hyper reflexive. I spent 12 years being misdiagnosed with Meniere’s disease and many other things. I visited numerous Neurologists, Otolaryngologists and took more medications & had more tests that I care to remember. Finally in 2012, when I was at my wit’s end with symptoms my PCP decided to just start over at the beginning and ordered a brain MRI (which I had also when this all started - and it was read as normal). The new MRI basically said normal as well, but buried up in the notes (not the conclusion) it was written that I had descended cerebellar tonsils. Because of my ongoing symptoms, my PCP sent me to see two Neurosurgeons to rule out Chiari. I had a Cine’ flow MRI which showed 6mm Chiari malformation. That on its own is not that bad, but after 12 years of ruling everything else out & still having debilitating symptoms, both Neurosurgeons agreed that the malformation could be the cause & gave surgery as an option. I initially said no, but a year later after changed my mind. I had to quit my job as a PT because I could not function & I loved my job. I also found out my daughter was expecting a baby. The thought of not being able to be a “real” grandmother helped me make the surgical decision. At age 51, I had a decompression/duraplasty. Unfortunately, it did not turn out as I planned. I ended up with a pseudomeningocyle (fluid build up), which luckily resolved itself after a few months, so I didn’t need to have another surgery. The biggest issue is though that I suffered occipital nerve damage. The headaches & pain from this are nearly as bad & sometimes worse than the Chiari headaches. While I don’t have the skull based headaches much, I have constant pain & numbness on the entire left back side of the my head. I continue to have vestibular migraines as well as dizziness & vertigo. As for my neck - it is a mess. I am in constant pain. I basically swapped one type of headache for another. If I had to do it over, I highly doubt that I would have the surgery (and I had the number #1 brain surgeon in Pittsburgh). I get nerve blocks (40 injections) in my head every 3 months which give minimal relief. I still take migraine medication as well as an anti-depressant & klonopin. Everyone with Chiari seems to have different symptoms & some more prominent than others. Surgery is the answer for some and not for others. I hope that you find some answers, as it seems to be a never ending journey.


#6

BigD - thank you for sharing your experiences. So unfortunate that surgery hasn’t helped you. I’ve also been told Meniere’s as well as several of the other dizzy disorders. No doctor has ever suggested Chiari to me and if I didn’t see it as an incidental finding on my report I probably never would have thought of it. If indeed, it is found that Chiari is causing my symptoms I would have to think real hard about having surgery as the success rate isn’t that great and at best it seems ie prevents things from getting worse but doesn’t really help to relieve current symptoms.


#7

Chiari and the effects it has on people continues to make me sad. It also saddens me when I see that the medical community does not understand the effects of Chiari and the impact it has on people. It also saddens me that people with Chiari do not understand how Chiari affects them and their brains.

Chiari is a physical manifestation that affects the tissue structures in the immediate surroundings. With surgery, people can see some immediate relief of some symptoms. We are often told that not all symptoms will resolve. We are not told why that is. We might get a shrug and be told “there is permanent nerve damage” or a shrug and be told that “the brain will only heal so much”. Platitudes with no help.

When the Chiari compression is present, it affects a lot of structures. Have a look at what is present in the foramen magnum. Any of these structures can be affected by the compressive forces at work in this small area. Chiari symptoms range so much and that only makes sense.

What medical professionals tend not to understand, and consequently do not pass on to their clients, is that the brain tries to make sense of the damaged information that it receives. Those compressive forces affect nerves, spinal cord pathways, blood vessels… When this happens, tissue structures send garbled information to the brain for processing. This information does not make sense to the brain, but the brain does its best.

An example is when the blood vessels to the occipital nerve are blocked, the occipital nerve is ischemic. When a nerve is ischemic, it results in pain. However, our brain is not designed to understand that our occipital nerve is vascularly compromised. The brain just senses pain in the occipital area, aka the Chiari headache, and nothing seems to help much. Can I get an ‘amen’ here!

Our brains are complicated and complex organs that work very hard to make sense of the stimuli it receives to keep us safe and out of harms way. When the brain gets mixed-up messages or information that does not make sense, it has a tendency to interpret the faulty information as pain. When our brain tells us that we have pain that is our cue to act. Unfortunately, when the brain itself is messed up, traditional ways of managing, reducing or resolving pain are not effective, and we do not know how to act.

Before I had surgery, I had the Chiari headache. It was a vague ache somewhere in the back of my head or maybe a centimeter away or maybe it was itchy. Did not make sense. After surgery, it went away, but lots of other strange things started up and the Chiari headache (but not!) came back. I had dizziness and vertigo but many vestibular therapists said that they did not know what was wrong with me. It seemed that everything around my head and neck hurt, scarves, collars, hats, hoods, head bands, all hair dodads It was crazy and getting worse. My neck hurt. Movements hurt. Thinking about movement hurt. Neck movements affected my cognitive abilities. Psychologists were repeatedly encouraged. My vision deteriorated even when optometrists said my vision was fine.

What I found out is that surgery was a success. Surgery removed the compressive forces on my tissues in the surrounding area. What surgery did not fix was the maladaptive strategies that my brain had adopted to make sense of all the years of crazy input.

How do you fix a broken brain? Not easily.

I did graded motor imagery (Neuro-Orthopedic Institute) for the crazy head and neck pain. It fixed the cognitive disruption. I followed up with motor-control neck exercises so that my neck could move normally. I did neurodynamic exercises (Neuro-Orthopedic Institute) to normalize neck and upper extremity nerves. I did primitive reflexes to get rid of the dizziness. I did vision therapy to normalize my visual processing abilities. Everything is brain-based with a focus on normalizing the brain’s processing and structures.

BigD the ex-physical therapist, you should be able to research this stuff, but truly anyone can. Of course, finding someone to assist is another task. Other than the vision therapy, these are assessment and treatment techniques that fall under the physical therapy jurisdiction.

My whole point, is that Chiari folk do not have to settle with a lousy brain that is not working right. We are now past the Decade of the Brain (1990’s according to George W Bush), and there is a lot of new research that came out of it. Please do not despair and lose hope. If I can turn my crazy brain around, or at least in the right direction, so can others.

Ask questions and demand better treatment options!


#8

Janey, Gabby gives very sound advice. Stay vigilant in your pursuit of health improvement.
The central nervous system is so complicated and surgeons are human as well. They need to be more willing to admit the surgery is not a cure all. My surgeon was very good at what he did surgically, but sent me off without any life after surgery directions.
Do not do over exert with exercise. If you drink alcoholic beverages do so sparingly. Stretch regularly because tight neck muscles compromise an already compromised area. Message therapy is an excellent benefit that helps a lot, and especially if you are not one to stretch often enough. I have done chiropractic care for over 20 years and it helped before and after my surgery; many Chiari patients also have connective tissue disorder and dislocate easily which again can compromise the malformed area.
Lastly, fighting the pain. I now have an Internal Medicine Doctor for my primary care. If you are not seeing one find one. Mine sent me to the Mayo Clinic where I saw Dr. Stitt, a neurologist, yes the first neurologist that has ever helped me. He recommended Cymbalta and only one capsule a day helps my confused nerves function much better.
All results very for each of us as I never presented with headaches. Stay the course of persevering because then you get results and can help other Chiari patients pre and post op.
Best to you always, Linda.


#9

Thank you for your understanding and responses. I still haven’t seen the neurologist and won’t for another 2 weeks. Meanwhile after a brief remission my symptoms are acting up. I have no idea what is wrong with me, no idea if Chiari is in any way responsible for what’s going on in my brain. No idea if it’s something worse or something very benign.

When things are acting up my main symptoms are headache, hyperacusis, strange.uncomfortable sensations (not pain) on left side of face, imbalance, difficulty walking, hip pain.

I’m afraid at my appointment I’ll be blown off and I’m also afraid he’ll take me seriously and find something terribly wrong. Neither scenario is sitting well with me.


#10

Just wanted to update - I saw the neurologist - yup, blown off again. He said I have vestibular migraine, barely even looked at the MRI report, I tried to discuss my swallowing/esophagus problems with him but he didn’t want to get into that. I felt it was useless to even bring up the notation on my mri of the incidental borderline chiari. I can understand him thinking my imbalance/headache/neckache could be migriane related but not the swallowing issues. So frustrating . . . . . . .