Chiari Malformation Type 1?

Posted , 3 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi all, my first post and after some general advice please.

As from last July I have had tinnitus. It wasn't until September I went to see my GP who referred me to an ENT specialist. I had a hearing test which confirmed some mild hearing loss and I was sent for an MRI to check for an acoustic neuroma.

I had to have to two MRIs, the first in January and another in March because I was told in the first the areas of interest to ENT weren't seen suffiently well enough.

Since the beginning of this year I have been getting continuous headaches that are pressure-like at the back of my skull. I also feel fatigued all the time, have difficulty sleeping and get occasional blurred vision and dizzy spells. On a couple of occasions I've experienced severe vertigo.

The second scan reported an indication of Arnold Chiari which i believe is another name for Type 1 and I have a 5mm herniation which they said isn't Chiari and is within normal limits and I shouldn't be getting any symptoms. Nonetheless ENT have arranged for me to go back and see them at the end of June. In the meantime my GP has ordered a blood test to check for anything else that might be causing my symptoms.

I feel like I'm stuck in limbo and no one is taking me seriously. From doing my own research between 3-5mm hernitation is considered borderline Chiari whilst other sources say 5mm and greater is considered a firm Chiari diagnosis. I also researched that the symptoms don't correlate with the size of the hernitation. I've read about a Cine MRI and I don't know whether I had that or not, I think unlikely as they weren't looking for that, it was simply an accidental finding on the MRI.

I'm worried that ENT don't know enough about this condition and the symptoms and that ideally I should be seeing a neurologist who is a Chiari specialist. Has anyone got any advice or experiencing anything similar to me?

1 like, 8 replies

Report

8 Replies

  • Posted

    You need to go see neurologist immediately...not because it’s life threatening , but because you are experiencing symptoms and I don’t want you to suffer unnecessarily and let years go by before u decide it’s time to see a neurologist, I suggest u make an appointment today. 5mm is definitely a chiari...1mm is definitely a chiari...your cerebellar tonsils should not be even 1mm herniated. Go get it checked out by a neurologist and preferably one who is a chiari specialist and who has performed surgeries. 
    Report
  • Posted

    I too had been having the ringing in my ears, I told my MD, he said you are getting at the age that those things happen. I will back up a bit I’m disabled, I have had 4 neck surgeries and a failed back surgery.... so many many MRIs CT’s, etc. so I started having dizziness, blurred vision, tired, just going down hill quicker than I should be... lss., I made an appt with a new neurologist, mine left and he ordered me a brain mri, my result stated 4-5 mild tonsillar herniation chiari type 1 and partial empty sella syndrome. ( pituitary gland is flattened in the area it sits, fluid half full in the area) so I truly didn’t believe it because my last brain mri in 09 said no tonsillar herniation blah blah. So I went for my follow up, the dr didn’t tell me of the findings, I asked when he was done if he was going to tell me about the findings, he ? me on how I knew. I have been around the block, he said he wasn’t concerned. Well I am, I also am dealing with no thyroid, adrenal or pituitary function which is not great since it’s already flattened. My thyroid dr has contacted another endo with more experience, waiting for them to call me with an appt. it’s been over a month. Anyway, you have to take care of you, you have to fight for you!! My neurosurgeon and MD both have been asked by me if I had any signs of having Chiari because I have family with it and I have so many other medical issues,  I could fill this whole website. I can’t get an appt because the chiari specialist want a referral and my pain management dr saw my cd, he said I have it but won’t give me a referral and they want a drs referral from someone that is steadily treating me. Well I see him monthly. I haven’t seen my neurolosurgeon for over a yr cause I’m so messed up he can’t help me. So I have no clue how I’m going to get an appt?? I just got new glasses a yr ago this week I had to get a new script because my eyes are trying to cross I had to have prism put in them. My head buzzes all day, feels fuzzy, blurry, just like I’m in someone else’s body.... i have gotten so bad quick, I’m scared and I can’t get a damn doctor to pay attention to me let alone give me a referral so I can wait 6 mos for a appt. I’m losing my faith in the medical field quickly as I am sure you are as well. Where do you live, I have places to go but no one will let me make an appt with just my mri and my clearance from my ear and eye drs. 6 yrs ago I was vibrant, working 60-70 hrs a week, making great $$ now I’m happy to bathe and get dressed, it’s getting really scary.... Best wishes, please keep me posted if you get someplace and find someone that has a working brain and cares too..... best wishes....
    Report
    • Posted

      If you have a chiari it very well may be a significant problem regardless of how many millimeters it is herniated. Everyone is different. Someone may have a 10mm with little to no symptoms but then someone else may have a 3mm and have a ton of symptoms. Measuring the herniation and associating the length of herniation to  the degree of symptoms is not an exact science and is an older way of thinking about this condition. Plus, the measurements on the MRI are just a snap shot of where the tonsils are in one moment in time. They actually can fluctuate slightly. My first MRI said I had a 8.4 mm and then my CINE flow study results mentioned that I had an 11mm herniation. You need to be your own advocate and you need more opinions on what your chiari may be doing to you and how it could or should be treated if it’s determined that something needs to be done. I will keep u in my thoughts, hope you get answers - see neurologists and neurosurgeons.

      I am from Chicago and I went to Northwestern University and saw a chiari specialist neurosurgeon....he was very supportive and experienced. 

      This condition is not well understood and universally studied and known, there are doctors who don’t know much about it or have much experience with the symptoms and treatment options which is why I decided to go straight to a neurologist and neurosurgeon. For instance, my own brother is an ER doctor and has met patients with chiari and says he has identified a few patients with it but he admittedly told me he didn’t know much about it other than the obvious. I actually realized that I knew more about my own condition than my brother. He studied my condition over the course of a few weeks and consulted some of his neurologist friends so he did his homework on the condition and basically confirmed everything I learned about the condition and my decision to get the surgery. 

      All I’m saying is that there are different types of doctors, and they all have different degrees of experience and knowledge, u have to get to the ones that will understand your condition otherwise you run the risk of them sending u home without any hope or treatment options. They may even blow it off like it’s not a big deal, and that couldn’t be further from the truth.

      Report
    • Posted

      Ohhhh I already know this DR. song and dance I have had 4 neck surgeries and One FAILED BACK surgery, now a thyroid that has been untreated for 4 yrs until I found a real dr this yr for that, and she’s sending me out to another dr because she can’t regulate it. So I know all about the dr dance my problem is I can’t get a dr of mine to write me a referral to get an appt with a Chiari neurosurgeon. I have a list of Chiari specialist but when I call they want a referral from a dr that has been treating me consistently, and he won’t write one, he wouldn’t give me a handicap app. I am numb from the top of my head to my toes. I live in chronic pain now for yrs. these drs blow me off because I’m complicated... well I didn’t do this on purpose. Ok , I have to get up 5 hrs before I need to be at an appt because I never know if I am going to be able to move. Ty very much. I need someone to tell me how to get a dr to listen to me long enough for a referral to a specialist for this new diagnosis of Chiari and empty sella syndrome..... ty again!!
      Report
    • Posted

      Wow, that’s crazy, I don’t really know what to say. I would think the MRI showing that you have a Chiari and that your experiencing symptoms would be all it would take to get a referal to see a neurologist. I don’t even know why a referal would be necessary because there is proof that you have a medical condition in the MRI. 

      Where do you live? Is the type of insurance you have preventing you from getting care?

      Maybe your original doctor has become callous and numb to you over the years because of all the other health issues you have had and he’s not taking the chiari seriously, and he’s probably viewing it in the old way in which 1mm to 5mm were not  considered a problem, which is BS....maybe you already did this, but arrange an appointment with him Where all you focus on is the symptoms of your chiari. You can look up my threads and messages on here or I can send you a list of all of my symptoms, but primarily headaches in the back of head and neck, dizziness, pressure build up in head, chronic fatigue. These are all classic symptoms of chiari...explain to him, or bring in printed articles, or email him a couple websites that explain chiari and indicate that any length of herniation especially 5mm is serious if symptoms are present. Also, assure him maybe that you as a patient understand that your chiari is completely separate from your other health issues. It’s an independent condition that is like 95% of the time a birth defect. Also, your symptoms are completely different than the symptoms of your other back problems. Chiari pain and symptoms are different than slipped discs bulging discs and sciatica (sp?), pinched nerves etc...you understand all this and the doctor needs to be able to understand all this.

      Is there a way you can go to a different doctor? I don’t understand why your referal has to be from a doctor you have been with for a long period of time. It only takes a second to diagnose it and prove you have a chiari based on an MRI and then it’s really just a matter of the patient stating that they have symptoms that I explained that should set the wheels in motion to get the referal...

      Report
    • Posted

      Yeah believe me, i have a page of symptoms, front and back that I have written down just by myself. Everyday I’m worse than the day before. My kids are grown, my poor husband works morning to night due to my disabilities, as I lost a huge income. I’m so depressed, I see a physchiatrist, so I hopefully won’t go all the way nuts but I’m scared and after all my other medical issues, no wants wants to hear it anymore than I want to say anything about it! I already have been all around the 3 states, I live in Delaware, back when my back went on me, like I said I had  a back surgery, 2 previous neck surgeries, then 3 weeks after my back I already had another neck surgery scheduled, and due to my jobs short term dis. I had to get it done then because my job only allows you out short term 1 time per 18 mos. well in 1 of the 2 surgeries that were 3 weeks apart someone paralyzed my vocal cord, so per ins, it usually heals by itself, well of course mine didn’t so 6 mos later I was having an implant put in my vocal cord. My insurance isn’t regulating any of my issues, it’s my pain dr that won’t write me a referral even though he saw my disc, said I have it, and I needed to make it my priority to see someone, but when I started calling these Chiari drs they all said they needed a dr referral, my ins doesn’t require it. The neurologist that did my brain mri, I have only seen him 2 times so what kind of referral is he going to give? He didn’t even tell me about the results, if I hadn’t went to pick up a copy, he would have never addressed it, he only did because I asked him and he blew it off. My neurosurgeon hasn’t seen me in over a yr because there is nothing he will due for me since the paralyzed vocal cord. I can’t even get the endocrinologist that my thyroid dr referred me to to call me back, I have been trying for 2 mos to get an appt with her. Either I need to back my pain dr in a corner, if he even comes to my next appt. or beg my thyroid dr to write it but she only knows what I have told her. My md kept asking me when I was going back to work after he knew I had been awarded my disability because I sold cars and he wanted a new Wrangler. It’s a joke. I can’t beg anyone to just see me. I have a box of MRIs and CT’s , and X-rays and some as recent as 2010 stating I had no signs of tonsillar herniation in my cerrebelum? Someone said it can be adult on set from impact or infection? Like I said my pain dr looked at it and said he sees it and the neurologist that read it said I have it, and I certainly have a lot of the signs.... but I’m going backwards. I would appreciate the true list if you have one if it’s not a problem. But I know if I keep going downhill as bad as I have just in the past 6 mos. I’m not going to be able to be riding 2-3 hrs to drs that know nothing about me, and then to find out they are clueless to Chiari as well. I just don’t have that same fight I had in 2011 when my back was jacked up.... my hope is I get lucky and stumble over a good dr sooner than later. Ty, it’s so nice to talk to someone that gets it.... I just hope 1 of these docs takes me serious and sees that I’m going down and I’m not popping back up. They all know me as a fighter, but the fight is getting less and less. Thank again!!!! 
      Report
    • Posted

      Where do you live? 

      What kind of insurance do you have? I have a PPO policy with blue cross blue shield of Illinois and I’m a high school teacher in the Chicago suburbs. I was seen by a orthopedic surgeon like 2 months ago (I was able to get in to see him within a week of calling the office) because my neck was killing me and he ordered the mri of my neck and base of skull. I got my MRI within a week of that appointment. I met back with the ortho surgeon March 13th and he identified the Chiari and recommended that I see a neorologist. I made an appointment with a neurosurgeon at Northwestern March 14th. He listened to my story and recommended surgery to me. I made an appointment to have my surgery May 8th, which is the day I. Had it done.

      I didn’t run into any road blocks in my treatment, so my heart goes out to you. I want to go to the doctors with you and scream at them to listen! Do you live in a city where there are several hospitals and doctors to choose from. In Chicago, it seems like doctors are literally everywhere. I could have gone to northwestern, Loyola, Christ hospital, Rush hospital...

      Report
    • Posted

      I live in Delaware, right smack dab in the middle of a state that takes maybe 1 hr and 45 min from the top to bottom, and I have a Hemi so sometimes less, lol. I have blue cross blue shield of ill. through my husband’s job. There are maybe 1 Chiari rated dr in Delaware, 1 in Maryland that’s an 1 hr ride. Both the dr in Del and Md are both a good hr for me. Yes if I wanna drive 2-4 hrs I have huge hospitals, however I have been to all of them with my back and honestly I was treated like a crazy woman with mental issues. I had a dr make me cry so bad at Johns Hopkins and he told me he could fix my back neck and my nerve damage, it took me 6 mos to get an appt, ordered me all these test, my dad had died unexpectedly the day before, I go he tells me get these test after you take care of your father and get me the results ASAP. I did it I spent my last $50 to get them there to him. He gave me his assistants ph # and after 10 days me calling daily, I finally call the Human Resources office, the dr left the week after I was there, they had no record of my test and was I sure that I came there and not the university of Maryland????? Really wth? I then went to an ortho there, mos later, cause it’s the best hospital in the us, my a//, it is. Anyway he yawned, couldn’t open my disc, said he was going to another computer and I had to potty, I walked by his office he was looking out the window, came back yawning I left, and I swore I would never go there again. This dr in Maryland that’s an hr away and has awesome reviews is partnered with university of Maryland so I know he’s no joke. I begged the lady on the phone, I said I have a disc, read by a neurologist, that I can’t get an appt with. Already tried. I have been cleared by the ENT , nothing going on there and like I said earlier I did just have to get new glasses because my eyes were trying to cross they did several tests on me had me come back after weeks of meds and I had to get prisms put in my glasses so they won’t cross. He said it was from the pressure in my head.???? I dunno I did take him my mri and all my blood work my thyroid dr ran on me. It was over $7000 worth of bloodwork. He investigated my test results and realized what was going on. My eyes still are having a time getting used to this prism, and they tire quickly. I’m scared, I can’t beg anymore than I already have. I see my pain dr, if he comes to our  office in my town, he travels the state, so a lot of times I see his PA. He did see my cd, pointed to my Chiari? Said I need to get my butt in a dr. I didn’t think I would have all this trouble getting in, so I asked his PA for a referral she said no. Next Thursday, my 52 bday I have a pain dr appt and I am going to beg for a referral I do not want to go to a dr that I have not dissected. I really want to see this one dr in Maryland that’s affiliated with U of Md cause I know I have a back up with them if he doesn’t feel comfy with my case. I’m very complicated, I have had a lot of screw ups and I am paying with no quality of life because of  all of them. My head is ringing right now so loud I’m gonna go nuts. Phewww. If I can’t get into this guy, I’m gonna put my tail in between my legs and call my neurosurgeon that did not fix my back, apologized though and then never owned my paralyzed vocal cord, he has told me 2 times I don’t have Chiari?? But this cd says I do..... and I would hope he cares enough that he can get me in to someone. I dunno who unless it would be the one in the office with him??? I have no clue. As you can tell I have not had the greatest luck, I don’t know why no one believes me or takes me serious. I don’t think that neurosurgeons are going to do 4 neck surgeries and 1 back surgery if I truly didn’t need them. Right now I know I sound like a crazy person but I’m just getting worse daily and I’m scared. The quality of life already sucked before this chiari diagnosis, it’s just making it 98% worse.  Ty for caring you have no clue how no one wants to associate theirselves with me, it’s a lonely place to be when no one understands. Ok I’m going to go lay in my tanning bed to loosen up my knots in my shoulder blades. Ty again, ty!!!!
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up