Hi and welcome to the Chiari forum.
Thank u for sharing ur surgery experience....please review our list of drs thread and see if ur dr is listed, if not please add him since u feel u had a good dr : )
I anm a chiarian. I had my decompression surgery in my home town. I had a neuro surgeon that took good care of me and the support of my family being at my bedside.
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.
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.
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.....
We do have a list of chiari specialists....use it as a means to research drs...u may have to travel- and the drs on the list do not constitute a referral-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
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 and welcome to the Chiari forum.
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.
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.
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.
Good luck and again, welcome!
Hi and welcome to the chiari forum.
I had heart palps, and had a ECHO done and a few other tests, I was told it most likely was a combo of other issues I had going on...one being HASHIMOTO'S thyroiditis....
It is also possible that ur vagus nerve may be affected...if u also have GERD that could explain it...many with chiari have GERD as well.
Best advice, find a true chiari specialist to help u .....u will need tests to see what other related conditions u may have, and rule others out...plus, see if u have a CSF blockage and overcrowding.
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.
Glad to see you found the forum. Check out the list of doctors that people have posted. Maybe you will be able to find one that is near you.
Good luck. I sent you a reply to your message.
" . . . 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.
Thank you Selma for your help and support. It is greatly appreciated!
HI and welcome to the Chiari forum.
Low lying tonsils is a part of ur cerebellum that extends out below the skull....this happens when a chiari malformation is present....area of the skull that holds the cerebellum is too small.
The overcrowding does not allow the CSF fluid to flow properly.
U do sound like u have many of the typical symptoms of chiari.
Next u need to find a chiari specialist....most of us find we need to travel some in order to get to one.
We do have a list of chiari specialists as a seperate thread.
If u have ne other questions ....please feel free to ask...we r here for support.