What to Do?

[azaquid3]

Hi!
I've recently been having some issues for about 9 months (maybe more but that is when they really began interfering with my life) with neck/shoulder pain along with occasional episodes of extreme pressure, numbness, tingling, weak arms and legs, lack of focus, dizziness, blurry vision-the list goes on.
I was in the hospital two weeks ago for similar issues though these were more severe, to the point were I wasn't able to walk very well or speak for that matter since my throat felt numb, I couldn't stick out my tongue and there was extreme pressure around my neck, in my head, and kind of down my spine. -Nobody could tell me what was wrong though they first sent me home saying it was anxiety and then, when I had to go back the next day, then they decided it was a problem with my newish meds. I had to do a lot of tests all of which they told me were normal. Since that experience I'm still struggling with the same issues every day, sometimes severe, sometimes just frustrating but I feel like I'm barely getting by. I went to see the neurologist a couple of days ago and he told me he thought I was fine and my issues weren't neurological-probably a pinched nerve and that my mri was fine, is sending me to get my ears checked. I felt invalidated by the experience and also wondered if maybe I was making a fuss about nothing, I felt stupid. After the appointment with the doc I checked the mri on my chart and saw that it said the cerebellar tonsils extended approximately 4-5 mm and that it was consistent with cerebellar tonsillar ectopia. I looked that up and found out about chiari malformation. So I am confused about what to do, I'm not even sure if I have a problem based on what the doc said, he didn't even mention it so does that mean it is no big deal?
I decided last night I was just going to give up on trying to figure this out but then today was so awful I couldn't pretend there wasn't a problem. Should I contact another doctor? Who would I even talk to about this?

[AnnieDear]

Definitely find another doctor to review, one who has experience with Chiari. I had a similar problem; one dr said Chiari and the syrinx were nothing and didn't cause any problems. The next said These conditions do cause problems, but with a 5mm herniation, mine shouldn't be. My final NL said everyone responds different to these conditions; let's check you out. He recommended decompression surgery. When he went in, my herniation was a relatively short 5mm, but he had to perform an aggressive decompression because it was very wide. He said he did not expect it to be so bad based on the MRI, but that my cerebellar tonsils were acting as a cork over the foramen magnum.

So, definitely find a doctor who understands! It can be a very frustrating experience, but the end result is worth it. Hang in there :)

Best wishes,
Annie

[TinyRN]

When reading your post it felt like dejavu (or who ever you spell it). I am glad that you took the time to reach out in this manner. When i found out about my diagnosis no one could quite explain it to me either and just wanted me to see a doctor for my headaches and stroke like symptoms. I signed up with a neurologist that I trusted in the area and she referred me to someone else who then referred me again to someone else. it was a frustrating battle but I am so thankful that I continued looking. Selma is a wonderful person to answer lots of questions as I have been following a lot of these posts since my diagnosis. I believe that if you find the right doctor, which like she said you may have to travel for it may be befneficial for you to do so. You may need a MRI of the lower spine and upper to rule out any other diagnosis that may be contributing to your chiari malformation and like she said despite the sizes some people may never have symptoms with the largest of the herniations while others with smaller ones can have symtpoms after an exacerbation period may happen. I didnt know I had mine until after child birth and I am so greatful that I followed my path because so many doctors pushed it off and my neurosurgeon told me if I kept ignoring it I would probably have my upper body paralyzed within 5 years. Its a long journey and each case is different from the next. But to feel comfortable you should seek a specialist near you to discuss your symptoms and seek management and consultation that make you both comforable. I hope you update us along the way.

[selmaS]

  Hi and welcome to the Chiari forum.

Yes u deff will want to find another Dr and that can pose another issue and a sinking feeling if u go and get another one that feels this is an incidental finding. Far too many Drs do not have a clue as to the fact Chiari can and does affect us no matter how large or small the herniation...it is more if the herniation is causing a CSF obstruction.

We do have a list of Drs for u to use to research Drs as the list is not intended to be a referral nor an endorsement...the list was and continues to be compiled by the members here of Drs they have been to, treated by and liked...

Learn as much as u can about Chiari ( we will do our best to help u there) and  research Drs and be advised u may have to travel to get to one, but it is well worth the effort...

And know u r not alone on this journey.