I was diagnosed with Chiari less than one month ago, thanks to a wonderful doctor who ordered a CT and MRI within days of my complaints, but she admitted that she had never heard of Chiari Type 1 and has referred me to a neurosurgeon.
My main symptom is headaches, which I have read is the most common symptom. I've had the coughing headaches for as long as I can remember, at least since my 30's. But the headaches I've had the last 4 months are different. They are almost always at night, while I'm sleeping. The really bad ones wake me up in the middle of the night; the moderate ones make me feel like I have a hangover headache when I wake up.
I haven't heard anyone mention the night headaches. Has this happened to anyone else?
Also, I'm wondering if "trouble swallowing" can include food getting stuck in your throat?
I've had my esophagus dilated twice in two years; my GI doctor saw no reason why food would be getting stuck, but he has dilated it for me anyway. Now I'm thinking this may be related to Chiari?
My first appt with a neurosurgeon is Monday, Feb. 9th so maybe I'll get answers then, but I really want to hear if someone else might have experienced this.
I would appreciate any comments. I'm already so thankful to have found this support group. <3
The headaches at night could have to do with spinal fluid becoming more blocked when you lie down. Try elevating your head if possible. Some people find sleeping in a recliner where they are somewhat upright is necessary.
The food getting stuck is most likely related to chiari as well. Make sure you share all your symptoms with your neurosurgeon. It’s amazing the array of symptoms that relate to this condition!
Hello, so glad to hear from you! I too had problems with swallowing. A chiari friend that I have here in my hometown has just acquired the same issue and is going to have a procedure done next week to try and help with it. Being older and newly diagnosed is frightening, but what I can tell you is you will feel so much better hopefully very soon. I had been treated for sinus and allergy problems for years and now they have all disappeared. Please keep in touch and let me know how things go! Take care! Jane
Thank you to everyone for your help! A few weeks ago, the diagnosis of Chiari was a bit frightening and I was in a sort of denial. But now I feel relieved to know that there's a reason for the symptoms I've experienced and thought were completely unrelated to each other. I've gone from thinking I would never, ever consider surgery to actually worrying that my doctor won't think I'm a candidate for surgery. But no matter what, I know a lot more now than I did three weeks ago, and that has made a huge difference in how I feel. Thank you!
Thanks for the advice, Anglyn. I will definitely have a list of questions for the NS!
And I will try sleeping with my head elevated as well.
Anglyn said:
The headaches at night could have to do with spinal fluid becoming more blocked when you lie down. Try elevating your head if possible. Some people find sleeping in a recliner where they are somewhat upright is necessary.
The food getting stuck is most likely related to chiari as well. Make sure you share all your symptoms with your neurosurgeon. It's amazing the array of symptoms that relate to this condition!
All I've had so far is a regular MRI of my head, which showed a 17mm herniation and no syrinx in the area he could see, but I'm hoping that my NS will order other tests. I watched a webinar he did online and he seems very knowledgeable. Thats why I'm traveling 4 hours to see him! Apparently this is one of his specialties, but I do have an appt scheduled with a doctor in my city in March.
I'm going to look into all the things you suggested.
Thanks so much!
Rebecca said:
Keep in mind, you may want to see a few different specialist to determine if you are a candidate for surgery. I'm at work so I am just kind of skimming through these posts as fast as possible so forgive me if I'm a repeat answer. But...
Has your doctor ordered a CINE MRI (csf flow)?
Have you had a full spine.. cervical, thorasic, lumbar MRI. You need one. Look of Chiari and Syringomyelia - I'm sure I spelled that wrong.
Headaches could also be from sleep apnea, or some kind of instability at the cervical junction while you sleep.
Check out Elhers Danlos and Chiair.
Check out CSFinfo.org for more info and videos as well.
Many - MANY - physicians, neurologists, and most local neurosurgeons are using old criteria for diagnosing Chiari. You really need to see someone who sees and treats multiple patients for this often. If you don't, its really a waste of time and money.
Good luck! Glad you are here so we can help you out. I am pretty new at this too and the great people here have helped me a lot!
I don't have the headaches every day, but when I do they are definitely Chiari headaches! They start in the back and radiate all over. The descriptions I've read on this site and others sound just like what I've had. Thankfully the really bad ones have happened only in the middle of the night, and go away after a few hours of getting up and moving around, and esp drinking coffee. Caffeine helps them better than ibuprofen or Tylenol. These headaches started about 5 months ago.
Other than the headaches and the food getting stuck in my throat every now and then, I don't think I'm having any other symptoms. But I don't know... I'm having mysterious joint pain and lower back ache the last two months. Maybe related? But how do you really know?
Thanks for the reply! I appreciate it so much.
Nykki said:
Hi Rami,
If you open up the "Understanding Chiari link in a new tab, a couple of pages down, there is a page that lists the symptoms that the majority of us deal with an difficulty swalling is definitely on there.
The headaches you get at night, are the at the back of your head where your neck begins, if so, those are called occipital headaches and they too are classic signs of chiari malformations.
Welcome to Chiari Family!!!!!
We understand you, we get it!!! and we live it!!!!
My appointment Monday was with Dr Dong Kim's PA, Audra. I was prepared to discuss my headaches, my esophagus issue, dizziness, and other less important issues and whether or not all was related to Chiari. It turns out I didn't get all those questions answered because she was very concerned about my MRI. She said she sees 2 or 3 new Chiari patients a week, and my MRI was the worst she's seen in a few months.
The 17mm herniation that I read about on my MRI was not a mistake, like I had convinced myself. It's really 17mm....And she is very surprised that I don't have any neurological symptoms. I passed those tests easily. She's worried about what a bad fall or car accident could do to me. She said I am at risk of serious injury or even paralysis should something like that happen. She is suggesting that surgery is very necessary, no matter what my symptoms, but that since headaches are my main problem, they should improve. Surgery could be as soon as April, but I must see Dr. Kim first.
So I have an appt with Dr. Kim on Tues, Feb 17th,
I am anxious to meet him and have started a list of questions for him. I have a lot of confidence in him and the hospital.
Please let me know if there is anything any of you feel is important to ask him!!!
This is what I know about the surgery he performs: he always opens the dura, and he removes the cerebellar tonsils.
I know from reading about Chiari surgery that not all doctors do this. What are your thoughts about this?
I would appreciate any comments.
Also, I would love to hear from those of you who are over 50 years old who had the surgery.
From everything I have read the removal of the tonsils causes no deficits or complications. It’s common when the herniation is that severe. As for the dura I have heard too many stories about people needing subsequent surgery because their ns didn’t open it and thus they weren’t adequately decompressed. I had mine opened and had no complications from it! Good luck and keep us posted!