Newly Diagnosed with Chiari type 1 and looking for any help

I had an MRI done just a little over a week ago and was told that I am borderline at 4mm. Some symptoms I have are migraines, neck pain, back pain, light sensitivity including even flashing lights are bothersome, ringing in my left ear, numbness that come and goes in my feet, left facial numbness, burning sensation on left side on my neck, pressure when bending over, and memory problems increasingly worse.

I have had some of these problems for years but others have just started in the past few months which is the only reason I finally got an MRI. My migraines became so debilitating that I was shaking, couldn’t walk without help, and apparently woke up in the night put my birth control pills in the freezer without any memory of doing it.

I was told by the surgery clinic that it’s not surgical for just headaches I should see a neurologist which I don’t want surgery but makes me wonder if they got all the information involving my symptoms because a different dr ordered my MRI then the dr I talked to about all the new symptoms that have recently started since the request for the scan was sent. Luckily they still set up an appointment for me to speak with a nurse practitioner about the MRI so I can get information just not for another week.

I am just hoping for any information from anyone about there experience because I don’t know anything about this and I don’t know when I will get in to see a neurologist as I am still waiting to hear about the referral.

Thank you to anyone willing to take the time and read this and respond! :slight_smile:

A neurosurgeon should be the one to review your MRI. A radiologist, neurologist, and a nurse practitioner do not have the skills to read the actual images from the MRI to determine Chiari ramifications. Given your symptoms, they seem to cluster well under the CHiari banner. Doctors do like to send you on a run around for every little symptom! Good luck with your Chiari journey!

2 Likes

Thank you for responding. It was a neurosurgery clinic that looked over my MRI and said it wasn’t surgical so they told me to go to a neurologist but I will be seeing a nurse practitioner from the Neurosurgery office to talk about the MRI. Sorry didn’t notice I forgot to put that detail in there.

My husband did though call another office today and they said the same thing this isn’t something under a neurologist so they transferred his call to neurosurgery.

Important to ask the nurse practitioner if they have looked at the images themselves and to discuss the saggittal images AND the horizontal view. So often the sagittal views are stressed with a Chiari investigation when the horizontal view provides a more rrounded impact of the CHiari malformation. ie how much of the foramen magnum is filled with herniating cerebellar tissue. Best to get some good answers on this to understand the neurosurgeons take on your CHiari presentation.

Of course, it is still not clear who and with what credentials is reviewing your actual images and not just the radiologist report. They also need a clear image of your symptoms to go along with!

1 Like

Ok great thank you so much that is really helpful.

Hi. It’s important that you get a CINE MRI to check for blockage of cerebrospinal fluid flow. I had a very minimal herniation, so small that even an expert in looking for minimal herniation almost couldn’t find. Despite the small size, my CSF flow was blocked. Also, it ended up being worse than it looked on MRI. Best wishes. Don’t let anybody dismiss your symptoms or blame them on depression and anxiety. Those things are secondary.

2 Likes

Hi thank you for your response. I will see a nurse practitioner for neurosurgery on Tuesday but I don’t have any hope in them since they have already told me they are going to send me to neurology.

However today I received a call about an appointment being scheduled in January with an actual neurosurgeon that is more well known in my state for treating chiari patients so I have a lot more hope for that appointment to be taken more seriously because even they couldn’t believe another office was sending me to neurology so the almost 3 hour drive will be worth it for better care.

I have heard a lot about that type of MRI being important is it of your whole head and spine. For your blockage did that require surgery to fix it?

I know I have scoliosis so I often have a lot of mid to lower back pain and hip pain but my neck has hurt more in more recent years.

Was it a CINE MRI? Also if possible go to a Chiari specialist. A neurologist is ok but if you can find a Chiari specialist its well worth it.

No all I have had is a normal MRI and I requested a neurosurgeon at a different hospital that has treated chiari before rather than a neurologist.

Hey Laangel,
You’ve been given some good advice here.
Just somethings I’d like to pick up on here. Gabby states “They also need a clear image of your symptoms to go along with!” and rhollyn states “Don’t let anybody dismiss your symptoms or blame them on depression and anxiety.”

Some dr’s are of the opinion that if your tonsil is less than ‘x’ mm in length you will not have symptoms. This is not always true. For some they can have a large tonsil but minimal symptoms and yet for others the tonsil can be small but their symptoms be overwhelming. This is why I must agree with Gabby they need ALL of your info to make a full diagnosis. The images may show very little, but the images are only 1/2 of the story.

“Don’t let anybody dismiss your symptoms or blame them on depression and anxiety”. This is, unfortunately, rather common, especially when it comes to neurological issues. Some issues can initially seem fairly benign, more ‘odd’ than a problem, but overtime those issues can start to increase. I had been informing medicos of issues for many, many years and depression and anxiety were a VERY common denominators. When my symptoms got REALLY bad the dr’s decided to investigate a bit more, then they came back with the line of “Ohh, look what we found…” Like it was all something new. I was ready to scream. I’d been telling them for decades there was something not quite right. It was easier to say ‘He simply can’t be having pain like THAT. It just can’t be THAT bad… …He’s a nut, he’s crazy in da coconut…’ than to investigate and then by the time they had investigated it had turned into an emergency situation. Don’t be letting it get to that point. If you are symptomatic, they need to know.

One thing I found was that we often go along to these appointment fairly overwhelmed before we even walk in the door. Then the dr rattles off 20 quick fire questions and gives us their opinions. We then leave the appointment. If you’re anything like me about 30minutes later I’m thinking ‘Ohh I forgot to mention THAT symptom’ or ‘I forgot to ask him about THIS ‘odd’ sensation’. I now take a list of questions pre-prepared. Some times our information can be seen as hearsay or anecdotal but if you can try to keep some sort of diary of symptoms vs activity vs medications it can assist in showing patterns of symptoms. It can also show that you are being proactive in your own care. Do not let them minimise your concerns, only you know how BAD bad can be. No one else can feel your pain.

Merl from the Modsupport Team

Thank you I definitely will write down all the symptoms I can think of and I also have my husband going with to add things that I don’t even notice or may forget. This has definitely shocked me how many people have this condition but yet the fact that it’s so hard to have an mri scheduled because of insurance companies and lack of knowledge.

Part of me was happy to know what was wrong so it could be fixed and everyone could stop thinking I was making it up all my life but I didn’t realize it was going to be something that can’t ever be fixed and gone.

1 Like

I can only give you a +1 for this, but I want to give you a +100

OHH YEA!!! But I must admit, when I was first diagnosed 20yrs after the first signs, after the initial OMG, I did get a sense of profound satisfaction in sticking it to those disbelievers. One of them turned up on my doorstep 20yrs after the diagnosis and got told in no uncertain terms of my opinion regarding their behaviour. We don’t choose to be here.

Ahhh, don’t just be writing down symptoms, but also try to include a bit of background. What had you been doing prior? What time of the day was it? How did you manage it? Rest? Medication? Diet? I found a chart online which I printed up to record all of these details. I found that with differing specialists, they wanted to repeat the same test/same therapies over and over. By having everything documented it can help to reduce that repetition and duplication.

Merl from the Modsupport Team

Well saw one dr yesterday and it was a waste of time they made up there minds before I ever walked in that they weren’t going to do anything for me. They told me they don’t do anything other than the surgery if needed and they don’t consider it anything until 5mm. Also told me the only symptoms that chiari causes is occipital headaches and neck pain so none of my other symptoms have anything to do with this so they want me to see a neuropsychologist, physical therapist, and neurologist. Basically if I have a worsened problem that lasts for months they will see me again for another scan.

I am so glad that my husband already found me a different dr that is knowledgeable in this and we have an appointment scheduled in January because this office made me so mad at all the misinformation they are giving people that come in because they aren’t running any other tests or looking at anything other than the mm and saying this causes no other symptoms so basically I’m crazy and have something else going on.

Yup. Definitely a good idea to move on.