chiari found, but dizzy prominent symptom

Question

My son is now 19 but has had vertigo episodes since he was 2. They came about 4 times a year and lasted for a week each time. Puberty caused these to get worse with headache, numbness, and nystagmus. All drs said it was migraine associated vertigo. He (finally) had an mri this summer and was found to have mild chiari formation. The neurologist and neurosurgeons here do not believe this is the cause of the symptoms and are sticking wuth the vestibular migraine diagnosis. Can a person have mostly dizzy symptoms with chiari? He gets headaches but usually in front not in neck.

selmaS · Answer

Do research on the Dr you choose to stick with to be sure they are a true Chiari specialist...that is well informed and experienced not only with Chiari but ALL related conditions.

dozzy379 · Answer

Thanks Selma. It is such a difficult decision. It seems he is blocked more near the spine/hindbrain than near the skull, so I was initially questioning the surgery because it seems like it would only open up the csf flow near the skull. I now realize the cerebellum would move to open up both sides. We have not gone back to see the surgeon to ask all the other questions or to have him checked. In fact we only saw him for like 5 minutes! But, he at least ordered the mri's. I wasn't impressed with him. We may go talk with another surgeon now that we have all the mri's.

selmaS · Answer

Yes, unless  there  is  a medical  urgency  we ALL  make  the  decision,...

  Not sure  what  you  mean "  his  Chiari  seems  more  interior then exterior"

 So, you  son  has  had  a MRI of  the brain w/wo contrast,a  CINE  MRI  and  MRI's  of  the  cervical, thoracic and  lumbar  spine.....

  How  about  ruling  out  EDS,POTs, ICP, sleep apnea?

 The  more  you  know  the  easier  the  decision  is  to  make  to have  surgery or wait  and  monitor.

dozzy379 · Answer

Obstruction. The NS says that surgery may or may not help and that it is up to us. Anyone else have to make a decision like this? I feel had for my son, beause we have a dx, but should we do the surgery? His chiari seems more interior than exterior, so how will decompression help? I welcome a conversation!

dozzy379 · Answer

We went to Mayfield Clinic and had 4 series of mri's. No syrinx, no tethered cord, and only mild csf u

selmaS · Answer

Many of us do have issues with gagging and a loss of the gag reflex.....I had to have swallow studies done as I was having issues as well and I do believe it is Chiari related since I no longer have the issues post op....

 Hang in there and report everything to the Dr.

dozzy379 · Answer

My son has been having gagging episodes the last couple weeks. He gags and dry heaves.  He eats just fine. No swallowing issues.chiari related? He denies feeling anxious. We do not see the chiari dt for another 4 weeks....

selmaS · Answer

Keep us posted <3

dozzy379 · Answer

I didn't see him on the list, but we will see how it goes.

selmaS · Answer

The best statement if anyone went to this Dr is to look for his name on our list, if it is there he was well liked, if not, it could indicate noone on this site has been to him yet....

dozzy379 · Answer

My son has an appointment at the Mayfield Clinic on October 14 with Dr. Kuntz. Anyone have opinions of this dr? We are glad to have an appointment which will hopefully lead to some answers.

dozzy379 · Answer

Thank you for your comments. Everyone here has been way more helpful than the nurses, PCP's and neurologists we have seen over the years. I am looking over the list of specialists now. I will let you know how we make out.

dozzy379 · Answer

May I ask if you had episodes of vertigo or was it pretty chronic? My son has defined episodes that follow a pretty standard pattern of 4-5 days of vertigo with GI distress, nausea, nystagmus, weakness. By day 4 he is feeling better and by day 5 mostly tired. Then he is fine. You would never know how he was a few days ago. It is weird. Diamox does seem to cut down the number of episodes but not the duration. We have tried many many different migraine meds but nothing has helped except the diamox.

dozzy379 · Answer

Thank you for your wise advice. I am looking at the list now. I will let you know how we make out.

selmaS · Answer

Sounds like a plan....once you confirm it is Chiari  more testing to see if there are related conditions and a CSF obstruction...these are important ...do not fall for the we have a DX so lets do surgery b4 they know more as to what else may be going on...some of these related conditions can affect how we feel and heal should we have surgery....so, get all the info you can b4 you consider surgery.

 Just know you are not alone <3

Mel5056 · Answer

Be cautious mom....those non chiari experts will try to rule out that chiari quickly.  Your son can get bounced around with no relief when in fact it really can b chiari.  Heard similar stories way too often.  Start with a chiari specialist who really knows if he has cm.  good luck really hoping all goes well

dozzy379 · Answer

Thank you both for your quick responses. I think we will pursue this further to, at the very least, rule CM out of the equation.

selmaS · Answer

Hi and welcome to the Chiari forum.

  I have to say thank you to rod44 for getting to you in my  absence...lol...

 But my question to you is what do they mean by mild?  I really dislike the terms they use as they do not consider symptoms he is dealing with or the pain....so mild may sound like nothing much when in fact it can be  a severe issue....

 I feel we can have HA's in front of the head not just the back as I had both...and sometimes it depended on what I was doing as to which type I might have,....

 Have him keep a journal and log things such as his activity for the day, type of pain, location of pain etc....this will help the Drs once he gets to the right ones....

 And that leads me to research Drs and find a true Chiari specialist as there is more testing to be done....most Drs have not been trained or educated on Chiari in depth while in medschool....so, do look for one that is well informed and experienced. We do have a list to help you with a starting point but the list is not a referral nor endorsement for those listed on it, it is only meant as a tool to help you start your research.

  Be advised not everyone will locate a Dr close to home so you may need to travel to get to one...,many of us do.

 And one important thing, get copies of ALL testing and the reports, this will make getting a 2nd or 3rd opinion easier and faster.

rod44 · Answer

I was diagnosed with mild or borderline Chiari and my main symptom was Vertigo. In fact I was treted for about two years for Ménière's disease and it was when they did an MRI they found CM.
I also have Nystagmus
Has your son had a full spinal MRI, I also have a Syrinx in my spinal cord despite the borderline CM. You need to have Doctors who are experienced in treating CM. Not all doctors understand Chiari. A person with Nystagmus should have a Videonystagmography (VNG) to identify what type of Nystagmus, CM is associated with a downbeat Nystagmus. It also will show a link between CM, Nystagmus and the vertigo.