Hello to this wonderful and knowledgeable group of people. I was diagnosed with Chiari 1 in November after my a visit to my pcp with complaints of dizziness, nausea, loss of depth perception. He did a briefneurological exam where he noticed my eyes jerking. He ordered an Mri that came back with an impression of CM 1 malformation with both tonsils lying low but the right lying 8-9 mm below the basion opthilion? line. I have suffered for years with weird symptoms which I think my pcp thinks I am a hypochondriac. I explained it to him years ago as if something in my body went haywire. I have loss of balance, loss of depth perception, neck pain, headaches, numbness and tingling in hands and feet. I also can not tolerate some visual things like if a fire alarm strobe goes off ( at work for drills) or sunlight breaking rapidly through trees when driving or riding. All of the trying not to let people see I am having to hold onto things for a minute when I have been sitting or lying for a while bc my head starts spinning so bad I almost faint, is extremely exhausting. The two neurosurgeons and one neurologist I have seen seem to say they do not think this is Chiari related and I am now waiting on an appt with Emory in Atlanta. They are sending me back to work and I am scared bc alot of the bending, lifting looking up and down and standing and floor rocking make me unstable. Any suggestions? Does this sound familiar to anyone? Thanks for taking the time to read.
It is sad to say, but I think a lot of people with Chiari have a similar story. The best advice I got was to go to a Chiari specialist, so hopefully your upcoming appointment will be with a more informed doctor who can help.
I was diagnosed with Arnold Chiari late August. My story is also very similar to yours. I had the Mri with contrast that determined my herniation was 5 mm. I was having seizures with mine with many other crazy symptoms. Had surgery 3 weeks ago. Have you researched for doctors familiar with this?
I second going to a chiari specialist if you can. I did not, and now because I continue to have problems, the neurosurgeons have cut me loose and don't want to deal with me any more. You will have good times and you might have hard times, so you want and need someone who will hang in there and stick with you. Best of luck.
God bless,
Carol in Las Vegas
I was diagnosed in September and had surgery in November and my tonsils were 13mm below…..the symptoms that I was having were very similar. I had been having some double vision, ringing in my ears, numbness in my extremities. I would get dizziness if I tilted my head back and I did not really realized that I had been doing things differently until I was diagnosed and then I realized that my torticolliis (crooked neck) was protecting me and that I was not even tilting my head back when I washed my hair because it made me dizzy. If I looked down to text someone and then back up it made me crazy………I hope that you see someone good.
Jenn, I’m sorry you have Chiari but so glad you finally got a diagnosis. Not surprised either to hear that the NSs think your herniation is too small to cause symptoms- even thought it’s much larger than what even traditional docs consider a Chiari. Do your best to just forget what they said, your symptoms all sound very classic Chiari, and it actually has nothing to do with size. You need a Chiari specialized NS to get the right information, and especially if you decide to go with surgery. Here is our member recommended doctors list
http://www.chiarisupport.org/forum/attachment/download?id=5129359%3AUploadedFile%3A221343
Since you are newly diagnosed there are a few other things you should be aware of. Look into tethered cord, Elhers Danlos Syndrome/hypermobility, dysautonomia, and consider getting a sleep study (lots of chiarians have apnea), and get your vitamin D checked. Not all chiarians have this stuff but A LOT of them do.
As far as work…I would try to avoid bending over, bending your head down, and extending your head up- it can make symptoms worse! Glad you are here!
Jenn
Thanks Jenn, as a matter of fact I have severe sleep apnea and use a cpap and low vitamin d levels...You guys are great
jcdemar said:
Jenn, I'm sorry you have Chiari but so glad you finally got a diagnosis. Not surprised either to hear that the NSs think your herniation is too small to cause symptoms- even thought it's much larger than what even traditional docs consider a Chiari. Do your best to just forget what they said, your symptoms all sound very classic Chiari, and it actually has nothing to do with size. You need a Chiari specialized NS to get the right information, and especially if you decide to go with surgery. Here is our member recommended doctors list
http://www.chiarisupport.org/forum/attachment/download?id=5129359%3...
Since you are newly diagnosed there are a few other things you should be aware of. Look into tethered cord, Elhers Danlos Syndrome/hypermobility, dysautonomia, and consider getting a sleep study (lots of chiarians have apnea), and get your vitamin D checked. Not all chiarians have this stuff but A LOT of them do.
As far as work...I would try to avoid bending over, bending your head down, and extending your head up- it can make symptoms worse! Glad you are here!
Jenn
Thanks to all of you that have replied...May you all be blessed in your journeys as well. I don't feel so alone
Hi there! Your story sounds so much like mine! My PCP diagnosed me with a CM1 and referred me to two NS, one at Duke and one here in the Charlotte area. Both turned me away. Then I was seen by a neurologist who also did not think my symptoms were chiari related. Then I was referred to an ENT because of the ringing in my ears. He looked at me like I had 5 heads. I finally couldn’t take it anymore and decided to send all my scans to a Chiari Specialist in NY. I finally had someone who understood me and what I was experiencing. Don’t give up! Keep advocating for yourself! But I agree with the last response, look for a Chiari Specialist. I am now 8 months post op from my decompression and am so much better. I’ve had draw backs but it was so worth traveling to find the right help!
My pcp basically just said find who you want to go to and I will refer you. I found a neurologist at Emory that did his training at Vanderbilt and his fellowship at Beth Israel Hosp in Maryland. He lists cm as one of his areas of clinical interest but I am scared he will think I am crazy too.
Readyforrelief said:
Hi there! Your story sounds so much like mine! My PCP diagnosed me with a CM1 and referred me to two NS, one at Duke and one here in the Charlotte area. Both turned me away. Then I was seen by a neurologist who also did not think my symptoms were chiari related. Then I was referred to an ENT because of the ringing in my ears. He looked at me like I had 5 heads. I finally couldn't take it anymore and decided to send all my scans to a Chiari Specialist in NY. I finally had someone who understood me and what I was experiencing. Don't give up! Keep advocating for yourself! But I agree with the last response, look for a Chiari Specialist. I am now 8 months post op from my decompression and am so much better. I've had draw backs but it was so worth traveling to find the right help!
Is he a Neurologist or Neurosurgeon? If you go to this guy and he looks at you like you are crazy, just know that you aren’t and keep looking. I believe someone sent a link to a list of NS’s that specialize in Chiari. Take a look at that list and see if there is someone on there near you. You aren’t crazy and feel free to send me or anybody else on here a message if you need some encouragement. We have all been through what you are going through.
Jenn said:
My pcp basically just said find who you want to go to and I will refer you. I found a neurologist at Emory that did his training at Vanderbilt and his fellowship at Beth Israel Hosp in Maryland. He lists cm as one of his areas of clinical interest but I am scared he will think I am crazy too.
Readyforrelief said:Hi there! Your story sounds so much like mine! My PCP diagnosed me with a CM1 and referred me to two NS, one at Duke and one here in the Charlotte area. Both turned me away. Then I was seen by a neurologist who also did not think my symptoms were chiari related. Then I was referred to an ENT because of the ringing in my ears. He looked at me like I had 5 heads. I finally couldn’t take it anymore and decided to send all my scans to a Chiari Specialist in NY. I finally had someone who understood me and what I was experiencing. Don’t give up! Keep advocating for yourself! But I agree with the last response, look for a Chiari Specialist. I am now 8 months post op from my decompression and am so much better. I’ve had draw backs but it was so worth traveling to find the right help!
Hi Jen Sweetheart if you read my story it’s kind of similar. I went to so many doctors about 18 of them in the last year trying to figure out what was wrong and I have Chiari one only on the right side though. You’re not going crazy and it is Chiari symptoms what you are having so be careful with the doctors they’re not very knowledgeable on Chiari. I went to Cleveland clinic and University of Miami to see some top neuros and they didnt understand Chiari. I finally found a neurosurgeon in my city in Florida and he held my hand and said “what you have is Chiari and nothing else all your symptoms are from your Chiari and you are not crazy.” I can’t tell you what a breath of fresh air that made me feel like someone finally understood and believed me. Be careful with drs, they’re only human and don’t always know everything. You need to start eating healthy, see a good nutritionist. Find foods that help with inflammation and detoxing for your body. Like certain vegetables and stay away from starches, sugars and certain things that are not helping you with inflammation. Do epson salt baths. I sleep with icey pack and I take advil. No others meds. I have good and bad days. Most of our pain is basically because the tonsil is sitting on our spine. Educate yourself as much as you can. This network has been great. You’re not alone. You may need some lifestyle changes but they will help. Are you near Greenville? I travel there often.
God bless and feel free to email me.
Do you mind telling me who you ended up seeing? Because my sister was referred to Duke and so that makes me a little nervous? She has already had two decompression surgeries and her symptoms keep getting worse. The first sugery was at mayo and the second was at the university of Missouri. She now lives in Virginia and we are trying to get her help quick.
That comment was for readyforrelief.
Jenn- as a sister to someone who has Chiari my advice is to stay on the doctors because there are so many people/doctors who have no clue what this is or how to help. My sister was diagnosed 12 years ago and it’s been a rough road and still is but keep a positive attitude and don’t give up
I had decompression surgery 10/22. I had all of your symptoms plus additional ones. It’s important that you get to a neurosurgeon that is familiar with chiari’s and understands the symptoms. I had a successful surgery and a good experience overall. I think most of it is owed to my amazing surgeon. Good Luck to you!
Like others have said above, you absolutely need to see a neurosurgeon that specializes in Chiari. Other wise your just wasting your time unfortunately.
I didn't see anyone at Duke, I believe that was in Readyforrelief reply. She went to Duke. If I can help in any way please let me know. I am going to Emory but now am second guessing that decision.
Abby's Sister said:
Do you mind telling me who you ended up seeing? Because my sister was referred to Duke and so that makes me a little nervous? She has already had two decompression surgeries and her symptoms keep getting worse. The first sugery was at mayo and the second was at the university of Missouri. She now lives in Virginia and we are trying to get her help quick.
It sounds like chiari if you have just reasently been diagnosed make very sure you get to a specialist in the chiari field.You need to do your own research and make sure you try to understand as much as you can before you go to your appointment.If you go to a mainstream medical community you’ll probably not get the help you need.There’s a really great specialist in Hendersonville,N.C.Hendersoville is located about 5hrs.away from Atlanta near Asheville,N.C. this specialist is the best and a pioneer in this field.Friend me if you would be interested in more information.I was almost a chiari 0 but had lived a very symptomatic 27+ yrs.I had begged for help, reg.dr.s can’t diagnose this illness my suffering was because of a lack of knowledge in this field not just the MDs but the Neuros.are not much better.I went Wake Forest a reaching hospital for a second opinion they were no better at diagnosing than all the others.I had surgery with no other NS agreeing it was the right thing to do but I knew for a long time I had chiari because I did my homework,my life is so much improved.
I'm so glad someone finally found what was causing the trouble. It sounds super familiar to me. I have pretty much exactly the symptoms that you listed in your post. I've been sick for eighteen years and was diagnosed last month. My most recent PCP didn't believe me at all and actively sabotaged my insurance process to get to Wisconsin Chiari Institute.
My tonsils are not very low at all, barely plugging up the foramen magnum. But, Dr. Heffez thinks that is combining with neck instability, and maybe tethered cord, to create a mess.
I hope they will give you more clarity as they continue to look at your case. I don't know what kind of work you do and I'm sure you've already done a lot but are there ways you can adapt your work environment? If you do sit much, I find having an office chair with arms and a high back that supports my head is very helpful.
Bending, looking up, etc. is the worst. I also wear a stiff neck brace when I have to move around. But, I am not currently working and I know that's not always practical at work.
I really hope you find some relief. I hope that for all of us. Keep at it!