Hi friends, my name is Sandra a 40 year old. I was doing research online using terms used in my MRI report. Among so many other things listed. One thing I was concerned with was the low lying tonsils. In the report, it is written as cerebellar tonsils are low lying without definite ectopia. Can anyone explain what this means? My Doctor has not even mentioned this or what it means. After researching and finally coming to this site, it leaves me concerned on what I should do next. I have also been seeing an Ear, Nose and Throat specialist because of vertigo, buzzing and ringing in my ears and so forth. The Doctor performed many tests and could not tell me what was causing this. I have most of the symptoms associated with Chiari Malformation. Vertigo, buzzing in my ears, depression, tiredness, vision problems, and frequent severe headaches. I basically can be honest and say that I could rarely say that I feel good.
I feel like my family don't understand why I say I feel bad, and don't want to be this way.
I also have DDD, sciatica among others. I suppose it would just help to have some encouraging words from others who experience these things, although I hate to know that any one is in pain in any way.
Thank you for taking time to read this and I sincerely look forward to hearing from you.
" . . . it is written as cerebellar tonsils are low lying without definite ectopia. Can anyone explain what this means?"
The cerebellum is shapped like an egg on its side. The bottom part of your cerebellum (the tonsil) is poking down (probably less than 5mm or it would say Chiari). In some people, the whole cerebellum is also pointed at an angle or down - this is called "ectopia".
That's kinda hard to type to get an accurate picture. Do you understand that visually? Too bad I can't draw on here.
just diagnosed with cerebellar tonsillar ectopia. had a lot of symptoms mentioned here, but haven't seen the one that worries me the most. Twice, I have had the symptoms of a heart attack. First time put me in the hospital, every test ran, no heart trouble. Dr. said some nerves in back can get enflamed and mimic a heart attack. Searing pain and pressure in chest and back, extreme nausea . Second time was after being diagnosed with the cerebellar tonsillar ectopia. Has anyone else that has been diagnosed with the same, ever had the heart attack symptoms? If so why? Any help is greatly appreciated.
Welcome to our little family. As everyone has replied above that usually means Chiari. The size of the herniation isnt as important as the amount of crowding this "low lying cerebrallar tonsils" might be causing and if it is causing a blockage of cerebral spinal fluid.
Lots of doctors dont acknowledge that chiari can be symptomatic and can cause all the things you are going thru this may be the reason why it was never mentioned. Do yourself a favor and find a Chiari specialist and dont waste time or energy seeing local NS and NL's who dont get it. Your journey will be alot less stressful and frustrating. Getting to the right doc makes all the difference in the world. They will be able to order the test you need to answer the rest of the questions.
I was also recently diagnosed with tonsil ectopia. Doc told me it should not be causing my headaches. I'm having a really hard time believing him now. Have severe pressure in base of my skull, loud ringing in ears, dizziness, severe headaches, and vertigo-like symptoms. Now severe lower back pain. I've been in karate twice a week for a year now and live a healthy life-style. MRI otherwise normal. He put me on anti-seizure meds to help with migraines. After reading your posts, I'm expecting to pursue a cine MRI to measure CSF flow. I'm a licensed therapist and I feel crazy when I talk about it to others -- it does sound like depression, but it's not.
I am sorry u addressed ur reply to a member that has not been active for a while on the forum, so if it is ok with u, I will reply.(A member added to Sandra's org thread)
Many Drs do treat us for depression, and we may have outward signs..most r from the drs not hearing what we r telling them, and the pain....but, the brain stem being compressed will affect moods....so it is not uncommon for a chiarian to be highly emotional....easily angered....or depressed.
U deff want to get the CINE MRI done and also a full spine MRI to rule out a syrinx....
We r happy to have u join us, but not happy for the reasons that caused u to seek us out.
Hi Selma, and thank you for responding. Happy New year, by the way.
I fear the "doctor-shopping" stigma at this point since my PCP has sent me to two neurologists and both have sent me away with no treatment plan. Though the latest Dxed me with tonsil ectopia. It's ironic that you mention mood, I thought my thyroid was low as my moods were out of control, but it tested normal (I do take meds for hypothyroid). I was just also started on 100 mg of Topamax to help with the horrible pressure in my head (the neurologist calls this pressure "migraines"), and that seems to be helping, but also enhances the moods.
I lived in the Central Florida area -- do you have any suggestions by any chance of a neurologist in Central Florida that would specializes in this area?
Again, thank you for responding, and its very refreshing to find this community.
Hi...I am not aware of NL's in the state of Florida, there is a chiari NS in Miami....and once u have a chiari dx u should go to a NS not a NL....but it is good to have a good NL on hand as they r good for follow up if u should be told u r a surgical candidate.
And do not worry or consider this dr shopping, as this is ur brain....not a toe....u need the best experienced drs in this area.....
Unfortunately, chiari is something that has not been updated in medical school and many flounder at what even mandates what chiari is.....
I'll hold on to this list. I have done a ton of research in the past two weeks, and did find the name of an NS closer to me on another site who I will contact Monday, and I feel pretty equipped now with the right questions to start with. Again, I can't thank you enough for answering and putting me in the right direction. All of my symptoms make sense now.
U r welcome...just be sure to research all drs regardless where u find them...as I found not all drs on these lists r chiari specialists.....some have even retired...so call ask questions and do have a back up in place.And most important is have a NL in place too as they do the dxing and all the aftercare should u be considered for surgery.
Post op care once we r released from the NS is non existent....so get a good NL in place or be sure ur PCP is willing to learn about chiari.
Please keep us posted on this dr u see and if u find him to be a good dr, let us know so we can add him/her to our list...we only add names of drs after surgery by members so we know they have done surgery and the member has to like them....again it doesn't make them all specialists but gets us closer to drs that r in the know.
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