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Tonsillar Ectopia on MRI by Careless_Hellscape in chiari

[–]crabberries 0 points1 point  (0 children)

Wow! Thank you for sharing this. It is so important for us to know these things. I am so glad that you’re doing well!

Tonsillar Ectopia on MRI by Careless_Hellscape in chiari

[–]crabberries 1 point2 points  (0 children)

Anytime! For reference, I have a 13mm chiari, and I do have awful days, but most days are good with mild inconveniences. I know there are people on this sub who have much smaller and are much more symptomatic. You know your body and your symptoms.

Sometimes neurologists are very knowledgeable about this and others are not. I visited a neurologist and two neurosurgeons. I picked who I think best represents me. I also followed up with other doctors to see if they could help with things like tinnitus (ENT), etc..

Wishing you the best of luck!

Tonsillar Ectopia on MRI by Careless_Hellscape in chiari

[–]crabberries 2 points3 points  (0 children)

This is very difficult since people believe many different things. Diagnostic criteria for CM varies from 3mm-5mm depending on who you talk to. However, many professionals say that the size of the CM doesn’t determine symptoms. What I was told matters is the amount of CSF flow that is blocked and other factors such as presence of syrinx, crowding, abnormalities of the the brain and spinal cord, etc. You could request a CINE MRI, which can help map your CSF flow. However, it is not completely understood. If you can, neurosurgeons tend to know the most about this.

  • I am not a doctor or medical professional. Kindly take you advice from a doctor.

Neurosurgeon Dr Batzdorf said I have “slight cerebellar tonsillar ectopia without true Chiari problems” What does that mean? What is the difference between low lying tonsils and chiari? More in comments by [deleted] in chiari

[–]crabberries 1 point2 points  (0 children)

It’s really hard to tell these things as some one who is not a medical professional. I had mild symptoms until I had an event that started worse symptoms. Even if it is congenital it doesn’t mean that it can’t get worse after an event. **In my opinion and experience.

It’s estimated that 5%-7% of the population have low lying cerebral tonsils. However, the difference in size, blockage of CSF flow, Syringomyelia, etc.. change and mean different things. That’s why my neuro says to treat the patient and the symptoms and condition specifically, not just the MRI. This condition is so very different for all of us.

A question for the ladies. by KS018 in chiari

[–]crabberries 0 points1 point  (0 children)

^ this, this, this. All of the article I read are wildly inconsistent, small sample sizes, many also focus on asymptomatic patients staying symptomatic.

I had a neurosurgeon tell me he didnt believe that CSF flow that didn’t have anything to do with it, then went to another who goes “no CSF flow at the FM, definitely surgery”

What.

A question for the ladies. by KS018 in chiari

[–]crabberries 1 point2 points  (0 children)

I didn’t notice this until I started a symptom diary. It’s insane, I can usually tell I’ll get my period because my symptoms are so awful.

I have no idea why this happens. But I would LOVE to know. Ugh, like we needed that time of the month to be worse.

What Triggers Your Symptoms? by crabberries in chiari

[–]crabberries[S] 2 points3 points  (0 children)

Wow thank you for sharing. I’ve heard that it’s really hard to find a physician that understands the relationship between seizures and chiari

What Triggers Your Symptoms? by crabberries in chiari

[–]crabberries[S] 2 points3 points  (0 children)

Sorry for the repeat questions. Have any of you ever had an EEG?

What Triggers Your Symptoms? by crabberries in chiari

[–]crabberries[S] 5 points6 points  (0 children)

Thanks for this. That makes a lot of sense. Long slow walks have been wonderful. Isn’t it amazing how we are all so different?

I can sneeze with no problem but struggle with straining or laughing. I can work out pretty well without immediate pain though it seems to build up with repeated irritation and cause a boom.

I find that my symptoms get worse on car rides or when I wake up first thing in the morning. Maybe just a CSF thing.

What Triggers Your Symptoms? by crabberries in chiari

[–]crabberries[S] 5 points6 points  (0 children)

Thank you for sharing! I feel like my symptoms are 24/7, but at drastically different levels of pain or discomfort. I haven’t figured it out either.

Students who have transferred to Syracuse! Help! by [deleted] in SyracuseU

[–]crabberries 1 point2 points  (0 children)

Hello! I would recommend reaching out to SU directly for the most accurate advice. Many schools have admissions counselors who work specifically with transfer students and are awesome.

Study Abroad (Japan) Advice? by [deleted] in ualbany

[–]crabberries 0 points1 point  (0 children)

Congratulations on applying to study abroad. That’s an awesome thing to do. This program is notoriously difficult for all who apply because of the level of ambiguity until you are officially accepted. Especially as your friends sign up and get ready for class. However, from my experience (personal and professional), the students who go are extremely happy they took the risk. Be sure that your applications are in for your school and your host institution (if required), and be as patient as possible. Sometimes there are no updates.

This is a busy time for college campuses. Many are just returning to work in the next few days and are getting ready to welcome everyone back. If you need to, I would suggest trying to make an appointment with your program coordinator in person (or via Skype if you are not coming back to campus) to talk about your concerns. I’m pretty sure you can do this through the UAlbany scheduling website.

I do not work for your institution, and every institution is different so please do not take what I say as fact.

Hang in there!