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Incidental Cerebellar tonsillar ectopia?

Hello, can someone please respond to this question. I have posted multiple questions about this topic on other sites and I can't get anyone to respond. I had an MRI because I have headaches, pain behind my left eye. I also have weakness in my left hand and foot. My MRI says I have Incidental Cerebellar ectopia which is the upper limits for normal for an adult. I thought that 5mm or more was considered a malformation? If this is the case, why are they still saying it is normal and incidental if I'm having symptoms. Before I had this test, my doctor said to me he thought that I was bipolar 1. He said that he expected all my tests to come back negative and I needed to talk to a medical psychologist. I told him I have never had mania or nothing like that. It makes me so mad. I also had a small pituitary mass on my MRI also.

I don't ever want to see him again. I called the office to try and get my pituitary mass looked at by an endo. I got my doctors nurse calling me sounding very frustrated wanting to know why I'm going around my doctor. I said I did not want to see him. After that, he is now leaving messages on my phone.I don't know what to do. I just want to get my tests done by someone who will listen to me and not think I'm crazy. No one even told me about the "incidental cerebellar tonsillar ectopia." I found out when I requested my records. I want to be clear, 5mm cerebellar tonsillar ectopia is chiari malformation? If so, what tests should I request? I have to have another MRI for my pituitary mass. So, I would like them to check out the cerebellar tonsillar ectopia at that time also. Thank you so much for your time. If anyone could respond that would be great. I have been so worried and I don't have anyone to give me any advice on this.
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620923 tn?1452915648
COMMUNITY LEADER

  It all depends what u mean by worsen....can it get longer, yes, can it cause more issues then u have now, yes.....

There is a list of activities to avoid with Chiari and Syringomyelia to help prevent the symptoms from flaring...the list is also in the Health Pages use the same link I included above.
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Avatar universal
Thank you so much for your help selma! Can the herniation worsen?
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Since ur herniation is 2mm's u may have an issue finding a NS that will consider ur Chiari as the cause of ur symptoms....u will need to research Drs to find one that does not look only at the herniation, but at how it is affecting u....

See our Drs list in the Health pages as well as other helpful tips and info.

Our Dr list is not a referral nor an endorsement...it is only meant as a starting place to do ur research.  http://www.medhelp.org/health_pages/list?cid=186
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Avatar universal
MRI report states that mine is 2mm. I can’t stand to sleep on a pillow my neck hurts so badly. I can only tolerate looking straight ahead well. I suffer from constant nausea. I also have headaches, face pain and sharp pains in my head. The neck pain is horrible. I also have some cognitive stuff going on. I also have sleep apnea and sleep with cpap.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many have had similar issues with seizures, and different types of cysts...

Do u know where the cyst is located and if it is a syrinx (another name is Syringomyelia)?

We do have a list of ?'s for the NS in the Health Pages....

If u need help with navigating the forum, please let us know.

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6870851 tn?1385741446
Just found out that my nine year old has 5mm. They are setting up an vist to see the neuro, she has scars on her brain from seizures that we are unaware of. She also has a cyst. Anyone else have these symptoms? I need all the info I can get and what should I ask the dr? I am really worried, her sister just had surgery for a cyst in her front temp lobe...
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620923 tn?1452915648
COMMUNITY LEADER

Hi...for those that define chiari by the length of the tonsil herniation u would be classified as Chiari 0....here is a link to Conquer Chiari's article on it.

  http://www.conquerchiari.org/subs%20only/volume%204/issue%204(1)/Chiari%200%204(1).asp

  Hope this is of help,....if u need more, research Chiari 0

       "selma"
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Avatar universal
Anyone have a link to studies on length of tonsils as opposed to position in relation to symptoms?

Radiologist said 2-3 mm tonsil and presence of small C7-T1 neurogenic cysts are insignificant but I have plenty of symptoms.

Need official study/statement to show dr.

Thank you.  
Helpful - 0
Avatar universal
I feel your pain, all of you. I am in the process of figuring out what is going on with me too. Been to see a neurologist, and he basically told me that my Chiari was 'incidental' and that it could not be causing the symptoms I was complaining of (arm and hand numbness and weakness). So now I am going to see a neurosurgeon for a second opinion. Being brushed off *****, but you just have to keep plugging away until you find someone who will listen to you and take you seriously. You are doing the right things.
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1179332 tn?1297478990
meatsafe- That was my question way back when they thought it was "all in my head". I was like, even if it is....are you just going to leave me like this and not offer any help?? It's like they want to label you and then just hope that you disappear...

none- I totally remember the things you are going through right now...all I can offer is that once you see a specialist and you start being treated the way you should be (and cared for) you will come to peace with it. I have, but it took two years... I finally now believe in myself, that my symptoms really WERE caused by this "little" herniation and I have accepted that I will have to live with some of these symptoms for the rest of my life. Now, I am just "getting on with it" the best way I can. I wish you all the luck for when you see your specialist :D

Stormy
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Avatar universal
Zygy2, thank you for your comment. This illness worries me a lot.But at least I know what it is and have a good start finding some answers. I definitely do not want things to get any worse. Hopefully, if I take care of it now I can avoid a lot of problems down the road. Meatsafe, it is nice know that even us "crazy" people are entitled to care. LOL Maybe the doctor thought I was in the mist of mania. I never said I would take over the world with my headaches and numbness. But maybe I gave him that vibe. Anyway, I'm looking forward to talking to someone who takes me seriously.Tomorrow, I'm going to get copies of my MRI and sleep study and hopefully I can get a specialist in Seattle to look them over for me. I will let you guys know what I find out.
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1690602 tn?1306714071
Sadly, many doctors are of the opinion that an abnormality you've had since birth can't be causing symptoms that recently appeared. This sort of ignorance might explain why your Chiari malformation was labeled "incidental." As others have said, you need to seek out advice from a specialist.

As someone who really is "certifiable," I can only imagine how difficult it is for you to be falsely labeled bipolar by your doctor. Know, thought, that even we crazies receive treatment for our physical symptoms! It's not like manic depressives are known for inventing symptoms like headaches and numbness just to vex their doctors. Don't let him use this suspicion to deny you care for your corporeal complaints.
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1667208 tn?1333107849
:)  I don't want to be a downer but from what I understand, 5mm herniated IS chiari :)  Welcome to our world :)  Straining was the worst for me too.  The head pains when I stood up, bent over, lifted anything, went to the bathroom, stretched, or laughed... just terrible.  They were not bad in the beginning and after about five years they were crazy, I felt like I could not move without these ten second head pains and they were so painful.  It really does sound like you have lots of the chiari symptom complaints.  I hope you find help and find answers but sure sounds like Chiari to me!  Good luck and keep me posted :)
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Avatar universal
zygy2, I don't know what sounds worse the prospect of a bad surgery or this illness getting worse. It is good to hear that you had a good outcome. I think there is some truth to the fact that people with a good outcome might not voice themselves as much as others. I find this talk about a Chari cough interesting. I have not experienced this. My head does hurt if I strain myself by coughing. But I do not feel compelled to cough nor do I cough very often. I have problems with excessive yawning. Sometimes, I have fits were I just yawn for long periods of time. This probably has something to do with my apnea. But I don't even understand why people yawn to begin with. I hope I don't have Chari but all of my symptoms are consistent with it. My luck, I might have an illness that no one has ever heard of, not even most doctors.

I think the difficult thing for me is my difficulty communicating. When my symptoms are bad, I can't focus. My girlfriend says I don't finish my sentences. I can't place words or remember terms and it makes communication very difficult. I sometimes stutter or slur my words. I stop mid sentence because I can't describe the word I want to use. I also feel very dangerous at work because of my loss of focus when the pressure behind my eyes gets bad. It is so hard to concentrate. I feel like I have to struggle so hard to just maintain focus and be aware of what I'm doing. I'm tired of people asking me if I'm ok or why I look so lost. Its so annoying because It happens when I need my focus the most. If it just happened when I was on the computer at home that would be one thing but when I'm doing something that strains myself it has to be the worst.  

I do agree that you have to be consistent when discussing your symptoms. I think that this is very hard because their are so many of them and they cause a lot of distress. I'm going to pay attention to this so that I don't sound crazy to the doctors. I was looking forward to making some calls on Monday. I guess I will call my dad and say happy vets day instead. Thanks for your comments they made me feel better.
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1667208 tn?1333107849
I think if I could choose one thing that this posting board has helped me the most with it would be the fact that once you read MANY stories like your own you can start to feel that maybe you are not crazy!  Once you can get past that frustrated stage and into a motivated frame of mind it works much better.  It is really sad that so many doctors are not educated enough to be of any help.  There are two sentences that get to me..... Chiari is incidental... and ... you don't need surgery for headaches.  This morning I sat up on the edge of my bed and as soon as a did a Chiari cough headache grabbed on!  Now, I know it is only about ten seconds of pain while the pressure adjusts again but it is the worst ten seconds of pain.  Unless someone can feel some of the things that we feel I just don't know how you can change their uninformed mind!  I told the neurologist (the one I have had the hardest time with) that once she has her baby (she was pregnant) that I would come back and ask her again, what if she could not laugh at or with her child.  I could not get it through her head that this much head pain each time I laugh would no doubt be worth having surgery to cure!  She made me feel completely crazy and did not listen and did not help, she was just a huge brick wall in my Chiari journey!  I can see easily where frustrated could go to depressed and into crazy!  Then her plan would have me addicted to pain meds!  

I really can tell you that I felt great after surgery!  I know that not everyone is helped.  I would assume that some Chiari's are incidental and really are not causing the problems that someone is having.  I would assume some people are crazy out there.  I also know that everyone on the planet can write a list of things they think don't work right in their bodies BUT for me, my major complaints did go away after my decompression surgery.  I know that because of the pseudomeningocele I really don't know long term how I will do but I have high hopes.  I think enough people don't return to the posting board for support so that to me would mean that there are lots of people that have a great deal of improvement!  I think what happens is that we look for a solution to one problem at a time and that does not work so well with Chiari.  It is a whole package deal and we need to be able to show a doctor everything at once without looking crazy.  Things like sleep apnea you try to solve the ONE problem.  One problem at a time could take a long long time!!

My killer headaches were gone after surgery, not one.  I know that does not sound possible but I seriously wonder if my "migraines" are not something related to chiari headaches because I had 20 years of migraines and then months with nothing! It was amazing and my head felt completely different.  I hate to say empty because that sounds funny but it is true :)  

Really push those symptoms that you know are Chiari related and are the most neurological so that they listen!  I do believe that having a headache is not a reason for surgery... but it is more that certain headaches are not a reason for surgery!  Things like balance and such should be looked into!  Monday is a Holiday so you will have to wait until Tuesday to start your phone calls but happy hunting!!!  There is someone out there that will listen, you just have to find them!  Make sure it is also someone that is very educated.. a specialist.. not someone that just wants to do surgery for a paycheck.  You want help but you don't want a surgery if you don't really need it!  Very confusing :)  Lots of luck to you! -zygy
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Avatar universal
It is so interesting that all three of us had herniation's and no one thought that it was important enough to tell us. I fell better after reading your comments.  It makes you question your own self when you pursue something that your doctor deemed incidental. I don't want to be considered a hypochondriac. zygy2, I know how you feel. Before my MRI, I honestly thought I might have MS too.

I don't know how you guys made it down this long road. I feel discouraged and doubt myself tremendously. I was so relieved when I got my diagnosis of sleep apnea a year ago. I thought I was saved. But even looking back on it now, I had symptoms that went beyond sleep apnea. I thought that maybe the oxygen deprivation was causing the cognitive, balance issues, headaches, and numbness. I wanted to believe this even though I did not have hardly any desaturation during my sleep study. My sleep doctor even told me that my symptoms were not all consistent with sleep apnea. Now, I'm not falling asleep driving anymore, which is a relief. I can actually sit down at work without passing out. It got so bad I could not even sit down at work, literally all day. I would wake up with headaches and off balance so bad I thought I had a stroke in the night.

Right now, I'm just looking forward to Monday, when I can make some phone calls. Hopefully, I can find a good specialist in Seattle to look at my MRI. Stormy, thank you for your comments.I will start to be a good advocate for myself. You guys gave me a direction, which is finding a good specialist, and now I'm starting this journey.
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1667208 tn?1333107849
Well said Stormy!  I too could not get past the issue of anxiety and them just assuming that is your problem that can explain everything.  Amazing that Chiari that can be seen and documented on an MRI causes NOTHING but anxiety that you can't see or prove can cause EVERYTHING!  I think everyone on the planet has a bit of anxiety over something but it should not be causing all of the things that Chiari can cause!  

None-  In my case I think the only reason that I made it to a diagnosis was that I called the hospital after my MRI because it had been so long.  My Neurologist was on vacation so I had a student read it to me!  I think the neurologist would have not even told me what the MRI said because they do ignore smaller herniations and Chiari in general!  I have no idea why!  The funny thing was that all the reading that I had done on my symptoms I thought either MS or Chiari and really felt it was this "thing" called Chiari that I had never even heard of but because of my anxiety I threw away the paper that I had printed to show my husband.  I just thought everyone would say I was crazy diagnosing myself with something I knew nothing about, I just knew the symptoms fit!  When the student read the report, she followed up by saying " you have probably never heard of Chiari"  I could not believe it when I heard that word!  I had been right!  I had a 6mm herniation but plenty of symptoms.  It is so important to find a doctor that recognizes Chiari as a real problem or you will get nowhere!  A neurologist that does not believe you is just banging you head on the wall ... and that is not good for Chiari people :)  You HAVE to find someone to listen and that can be difficult and confusing but just keep pushing!  Don't keep going to a doctor you don't trust or like.  I always feel that if you walk in the room and don't like them from the start that you might as well leave and start over somewhere else.  You have to trust them and know they are listening to get anywhere.  Keep your list of problems short too so that they don't just start to assume you are crazy!  Be organized, articulate and informed!  I know it sounds like a lot of work but it is so worth it when you find the right person to help.

I like you had lots of light headed (brown outs), dizzy, numbness in my arms and tons of headaches and neck pain.  I don't sleep well but don't know if it is apnea.  I had sleep apnea pretty bad with pregnancies but don't wake up gasping anymore.  I am lucky, I don't seem to have lower back or leg issues.  I had my surgery one year ago and I felt amazing after!  My Chiari cough headaches had been terrible and for three months I did not have one headache.  Right now I am preparing for surgery 2 because my patch is leaking but I am still happy I had the surgery, I know that it helped!  I hope you can find someone to listen quickly.  Maybe someday Chiari will not be ignored on an MRI but until then some of us have to fight to find out what is going on!!  At least you know, lots of people post that they were never told and find it when they get their own reports years later.  
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1179332 tn?1297478990
I'm sorry to hear about your struggle...and the ladies above have given you sound advice.

I just wanted to tell you...my MRI was also stated as normal and the Chiari wasn't even dictated on the report...so that doesn't mean anything!!!! Too often, this malformation is not recognized by the radiologists and even some specialists. I went over and above my NL to see a NS that I knew and it was the best decision I ever made. You need to tell this DR that you are choosing to advocate for yourself and will NOT put up with receiving health care from someone that is not putting their patient first (just their preconceived notions..) I know how it feels, I have been treated for anxiety my whole life (which I believe was related to Chiari, after surgery I haven't had a single panic attack). My Dr immediately went to that when I started having symptoms and their misjudgment cost me a lot as now I have permanent damage from waiting so long. So I urge you....do something now!! I know that your insurance may be an issue but look into it now and pull out all the stops...you will be so glad you did. Good luck!

Stormy
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Avatar universal
Selma, thanks for the advice. I will try and relax. I have noticed that I have cycles. Unfortunately, it is getting to the point that I feel that I have some permanent damage. Even when I'm not having major headaches, my leg and arm still feel slightly heavy and a little numb. It is not terrible but I definitely notice the difference. Thank you for listening. I will take your advice and relax. I don't think worrying about it anymore tonight is going to do me much good. I will make updates in the future.
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620923 tn?1452915648
COMMUNITY LEADER

  U need to find the best way to relax....a good soak in the tub, ...avoiding things that trigger u, loud locations, florescent lights bother many of us too, so try and avoid things like that...lifting....straining.....


  Chiari does cycle, and u may be in a flare, so just try to relax.....and when u do begin to feel better, do not be tempted to do more as it will trigger it to flare all over again.

   "selma"
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Avatar universal
Thanks for your comments Selma. I will try and stop popping my neck. The pressure is just very annoying. I'm going to make some calls on Monday. I will let you all find out what I learn. In the mean time, is there anything that I can do to stop these headaches. Do you guys no anything that might work to make them go away or reduce them. Thanks.
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620923 tn?1452915648
COMMUNITY LEADER

  Stop popping ur neck....that is not a good thing with chiari....

U r not nuts, the symptoms r very similar to what many of us deal with....so , what u do need is a dx, request the copies of ur MRI along with the reports...u may be able to send them to a Chiari specialist for a opinion , some do this for free ( with hopes u bcome a patient) others do it for a nominal fee.

  Check out the Drs list we have here and do some research-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
The list is not meant as a referral just a means to help u with ur research.

"selma"
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Avatar universal
Thank you both for your comments. I don't know if my insurance will cover me to see a specialist. I think they might if I got a proper diagnosis. Unfortunately, on my report it says that it is "normal." I work for the state but the insurance has specific doctors that they will let you go to. I will call my insurance company on Monday. I need to find another primary doctor anyway. I was wondering if you guys have similar symptoms as I do. For example, I have headaches that hurt in the front of my head. I pop my neck a lot because I feel pressure in the back of my neck. Unfortunately, that seems to make it worse but relieving that pressure for a few seconds is worth it. I get bad pain behind my left eye. Sometimes, I don't get pain behind my left eye but I do get pressure behind my eyes. This pressure is usually accompanied by being lightheaded and feeling off balance. When this happens, my cognitive function is reduced. I sometimes slur my words, have word finding issues, stutter. I notice that when my head hurts, I have more weakness in my left hand and foot. I have sleep apnea also. I have both types. From what I hear, central apnea is not very common. If you guys have similar things going on please comment. I just want to know I'm not going nuts.

Thank you
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1435895 tn?1304291241
I absolutely agree with Selma.  Having a specialist is the most important thing you can do.  Any neurosurgeon can do CM surgery but the risk of complications is reduced if you see a CM specialist.  You will also have your symptoms validated and they wont think you are crazy.  There is a list here in the forum of docs other members have used and liked.  I hope this helps.

Pam
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