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Need some advice relating to my Chiari Malformation.

So, a little backstory. I've kinda had minor cognitive issues, finding right word, foggy thinking, some memory issues, and depression for a year.
    In September, my symptoms got dramatically worse. So, I went to a different doctor for a second opinion, and he recommended a neurologist appointment, and scheduled me an MRI.

The MRI comes back normal, except for a 5.6mm Chiari 1 Malformation. Upon researching that that was, I find out, essentially all my symptoms matched. So, I message him informing him that. He then recommends me to see a neurosurgeon. But, the appointment is 2 months later, and the Neurologist appointment, even further away.
By the time a get to the Neurosurgeon, my symptoms have continued to worsen, ringing in ears, fatigue, worsed migraines, further decline in thinking, memory, attention, appetite issues, weight loss, difficulty finding words, random pain in body, muscle twitching every now and again, nausea, dizziness, vertigo, clumsiness, etc. Coming into the appointment, they inform me that, essentially, I have too many symptoms for it to be Chiari. And that my 5.6mm herniation is borderline Chiari, and not big enough to cause symtpoms. They later look further and see it actually extends 6.3mm. They do a reflex test, everything below my wasit that they did was +3, and had clonus in my ankles. But, they happily order a Brain MRI with csf flow study.

So, another month later, and further worsening of symptoms, I get the MRI. Results were, my tonsills were now 7mm herinated.the csf flow anterior to the medulla, and between the medulla and cerebellum is normal. However, the csf blow posterior to the cerebellar hemispheres is minimal. And they tell me that,since there is only miminal flow posteriorally, but good flow in the rest of areas, it indicates there isnt severe depression. And explained that the decline in my memory, foggy thinking, and generally cognitive dysfunction wasn't a symptom of Chiari.

However, alot of what I've read about it online, and forums of what people who have it go through. Suggests that it is one of the symptoms? And them mentioning before it was herinated enough to cause issues. But watching lectures and articles on it suggests that small ones can cause severe symptoms, while large ones could be asymptomatic. So, I'm wanting to get a second opinion about it.

I don't know what to do, my Cognition continues to decline, I've got my whole life on hold rn, just sitting in bed all day. It was 2 months of waiting for the neurosurgeon appointment, another month of waiting for the mri, and now it'll be another 2 months till my Neurologist appointment.

There is a Chiari and Syringomyelia center an hour from my house. So, I've been considering going there to get advise from Specialists that are used to treating this condition. But, my current Neurosurgeon seemed pretty adamant that Chiari isn't responsible for my current issues. And it might seem a bit insulting to ignore her advice and go to someone else. Moreover, I'd probably need a referral from them to go to this next place, and have to try and figure out how to have my MRI pics sent there.

It's just, this is really debilating for me right now. I just want to get this all figured out so I can finally move on with my life. And having to wait months between doctor appointments is frustrating. It's going to be 2 months of sitting and waiting for my next appointment, while I'm sure it'll take more months of waiting for future appointments after that. I'm tired of living like this, and I'm not sure how much longer I'm willing to put up with it.

I've spent around 2 hours just trying to write this post. I get migraines every other day, which pain meds hardly help anymore, back and neck pain, tinnitus, blurry vision, excessive sleepiness, fatigue, weakness in arms, dizziness, vertigo, palpations, clumsiness, weakness, muscle twitching, aphasia( I think, when I can't remember a word, I'll substitute it with something similar), decline in concentration, slowed thinking/processing (sometimes while reading or listening, I dont process it at all), most of the time, my mind feels blank, or have trouble even thinking, or more so, the inability to think. My memory has declined so bad, I'll forget what the conversation is about mid-sentence, or a thought, I'll forget words, their meaning, at one point, I forgot the day or the week. Or more embarrassing, we carpooled to a friends house an hour away and I asked the friend whom's house we drove to, (so he wasn't with us when we carpooled there), what time he got to our town to carpool. If that sounds confusing, it's cause I'm also struggling to explain things. I literally feel like my IQ has dropped by 35 points. At some points, I randomly get super irritated by anything, arms will feel heavy, and I'll just feel like falling over and passing out, or wanting to chuck something.  

Idk, I think I forgot what I originally posted this for, and ended up venting more than anything. I just don't know what to do, I hate having to wait months between appointments, and still not knowing for sure if the Chiari is responsible. I wonder if it's just a coincidence that as my smyptoms have gotten worse, so has my tonsill herniation? Does anyone else have similar symptoms? Or is it like my Neurosurgeon stated, that I have too many symptoms for it to be chiari? Sorry for the long read, would've summed it up if I could.
2 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
First, as far as insulting your NS(neurosurgeon) .....having the right Dr is key....and for the Dr to not feel your symptoms could be Chiari is an indication that they are not well informed or  educated on Chiari and related conditions.
May I ask what Chiari center you live near? Not all are the optimal location to go to, you need to research the location and the Drs there before deciding on where to go for guidance with your Chiari journey.

We have a list of unofficial Chiari symptoms because even the "specialists" do not recognize all the symptoms we have listed. One reason for this is because Chiari rarely comes alone. It is possible to have several conditions so it can be difficult to know which condition is causing which symptom.

Our list is inclusive to all the symptoms we experience as we feel they are related to Chiari is some way.

Some conditions to rule out are Syringomyelia, Ehlers-Danlos, Tethered cord, ICP, POTS,retroflexed odontoid,Hashimoto's thyroiditis,....that is where to start....but there are others they will rule out too...such as MS, Lymes, Lupus....

And to help yourself. try to relax as stressing over your diagnosis can actually cause your symptoms to worsen. Chiari symptoms can and do cycle...and they can flare when you are stressed, so find ways to relax the best you can.

The best advice I can give you is this..Always ask for copies of your MRI's and other testing along with the reports. It is the best way to have the info when you do go to new Drs....you can have all your info and it helps speed the time to get answers. I personally do not believe there is a MILD Chiari....another way to explain this is to imagine the herniation as a long piece of shoe string licorice hanging down an inverted funnel...it will not stop liquid from flowing down the funnel...but replace that licorice with a gum drop and it will clog the flow. WHy am I using these analogies...because some Drs, only look to the length of herniation some feel the longer the herniation the worse the symptoms and the need for surgery is greater....but it can be the other way round, the shorter herniations can cause more symptoms then the longer ones.....so, again do not listen to Drs, regardless  if they are a NS or NL unless they are a true Chiari specialist, they may not have the background to offer you insight. Just as you would not take an expensive foreign car to a regular Mechanic to repair the transmission, you do not allow a regular NS to touch your brain.Research and educate yourself and sue that information to help you find the Dr that is right for you.

Lastly, when your herniation changes that mush in a short time, I would first look to see if  all the MRI's were done on the same magnification and the same slice.Many times  we have heard of  a person who was told their herniation shrank....to explain how this could happen, imagine the herniation as an upside down pear, slice it in thirds.....if you look to the one on the far left or far right they could be considered short....and the center slice is considered long....or longer....so, depending on which slice they are looking at, and if they are not looking at it the same way, it can appear that the herniation is growing or shrinking....the only issue I know can change like that is a syrinx....OR if your CSF flow was really compromised.
2 Comments
Thank you for taking the time to reply!

https://chiari.wustl.edu

Currently, this is the closest Chiari Center where I live. I'm going to try and get copies of my MRI's and see them, although, im not sure how they compare to other Chiari Centers.  I do feel like my symtoms cycle a bit, I'll feel better for a few days, then worse for awhile, then repeat.  So far, we haven't looked into other possible causes, I believe the NL is being left for that.  I'm not competely sure how they looked at the MRI to confirm if it really did change, or just looked at a separate angle.

So far, they haven't scanned for a syrinx, or
even mentioned anything regarding it. I'm not sure how the whole process usually goes, if we should've scanned for it or not.

Is it possible for CSF flow to be compromised one day, and relatively normal another day? Or, flow fine while lying down, and become obstructed while standing? My MRI was on one of the days I had been feeling better. It's definitely a struggle navigating on how to proceed, what to do, etc by yourself. It's reassuring to be among other who are going through similar things.
Position can alter CSF flow especially if you have a compromised area due to the cerebral tonsils herniating and or a retroflexed odontoid...there are few things as well as position that can affect flow.There are some Drs that do a MRI with the patient sitting upright ! It is not the normal or conventional way of doing it....but some do.
The areas that should be looked at to rule out a syrinx, is cervical spine, thoracic and lumbar, as well as a CINE MRI to look at CSF flow.
Did you request copies of your MRI's and the reports? If not, call the facility that did the studies , NOT the Dr ( the Dr will charge you) but the facility should offer them to you at no cost....you should be asked to sign off on them sending the reports. But always ask for copies when you sign in for the testing as it will speed the process up of getting all the information to the Dr you want to help you.

I do not recall any of the members here that have been to that Chiari Center....it is not on our list....so, the best you can do is educate yourself on what they should be looking at and see what they propose to do.....Hopefully we will have another location to add to our list! ( I have none for Missouri.)
Avatar universal
I recognize some of your symptoms, without being able to say or know if it's from the CM, I've someof them, Have you asked the GP to check your vitamin/mineral status and hormones? Then you at least have ruled those out, and can go back and hit in the table, and demand help in other ways.
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