Chiari Symptoms
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This may be a long post, I apologize. My symptoms started the first part of June with sharp stabbing pains in the back of my head. Sometimes they felt like the were shooting through my head. They lasted only a second. And sometimes I would get a posterior headache that would come and go, but not that severe. Didn't think too much of it. Told myself I would make an appointment with my Dr.
Fast forward to the first week of July. I decided to exercise on my elliptical. Exercised for about 15 minutes. When I was done, I felt awful. Nausea, confusion, tinnitus, rapid heartbeat. Almost went to the ER. Symptoms went away after about an hour or so. Woke up the next morning felt fine. Started feeling ill at work. Same symptoms but with little activity. Went to the ER, everything was fine from all the tests. Started to feel better.
I'm not sure which symptoms started next. I think a couple fingers in my left hand started feeling numb/tingly. And I had neck pain for about 3 days. My face/scalp felt like something was crawling under my skin. Made an appointment with my Dr. He ordered an x-ray.He thought I had a pinched nerve. X-ray showed mild degenerative changes in cervical spine that weren't there the year prior. Ok. Didn't explain other symptoms like the ringing in my ears that has persisted since I exercised. He thought I had multiple issues at the same time.
Next came some tingling/numbess in my left foot. At this point I was very worried that I had something like MS. Anxiety went throught the roof and probably made the symptoms even worse. So, convinced I had something really wrong with me, I had him order an MRI. MRI showed mild stenosis in cervical spine. Finally, I thought I had an answer. He referred me to a NS who took one look at the MRI and said you're fine, you don't need surgery for the stenosis. He said it was very mild and didn't even recommend physical therapy because my symptoms were so mild.
Fearing the worst, I made an appointment with another NS just in case I needed a 2nd opinion. He also said my stenosis was very mild and weren't causing my symptoms, at least in my foot. But, he didn't mention the Chiari malformation. I said, what's that? He explained it, and since I have read tons about it. He said since my symptoms were mild we should keep an eye on it.
So here is my question. My symptoms haven't really worsened. I have no weakness. I have had new symptoms pop up like pain in the bottom of my foot when standing, and eyelid twitching which is driving me nuts. Recently I'm getting shooting pains in my teeth. Tinnitus is always there in some degree. Will my symptoms get worse, stay the same? I know some activity aggravates some of my symptoms like nausea and tinnitus. I don't have the classic headaches like most people to, which is why the 2nd NS maybe wasn't 100% sure if the CM was causing all of my symptoms. I do get the headaches, but they're not severe and I rarely need to take anything for them.
Again, sorry for the long post. Just wondering if anyone else has had similar symptoms, even mild symptoms, and if they progressively got worse or stayed the same. Thanks.
0 likes, 7 replies
patrick56544
Posted
Linleel patrick56544
Posted
When did you get a diagnosis of Chiari? What level? Herniation?
I started out with
1- Blurry Vision. (March 2015) Which affects my QOL (Quality of Life). I couldn't see street signs. It made me very nervous to drive. Also started having memory problems.
2- Eye Doc diagnosed cataracts. I had one cataract surgery and they got worse. Then had a YAG surgery. Not much better. Had the other eye done also. Still had blurry vision.
3- Started having balance issues. Fell off my bike repeatedly and after 3 skinned knees, decided not to ride anymore. Affected my QOL because I ride around town alot.
4- Started having disorientation, dizziness in addition to balance, blurred vision, headaches. MY QOL: not able to drive, difficult getting around grocery store because of dizziness/disorientation.
5- Went to doctor in Oct. Felt terrible. Requested a brain MRI. She said "why? do you think you have a brain tumor?" I said, "I don't know, but things are NOT RIGHT!" Got the MRI- Doc called me next day and said "You have Chiari Malformation." (Nov. 2015) Got an appt to see a neurosurgeon fairly quickly (as my hubby works at the hospital and knows people).
6- I went from Blurry Vision to NOT being able to Drive and Not getting around very well.
So that gives you a bit of an idea- My symptoms happened fairly quickly. Eventually determined that this was because Cerebral Spinal Fluid was being blocked- So I've had Chiari forever, but it didn't get really noticeable until the fluid started being blocked. I'm 57.
A) Your symptoms may not get worse. Chiari is tricky. You may get more wacky symptoms like the shooting pains, etc. Depends on how squished the cerebellum is, whether the brain stem is being pushed against, whether there are some nerves that happen to be in the way of the cerebellum.
B) If your symptoms get worse, you can get further MRI's and other tests. Or you can go directly to a NS or neurologist.
C) If you go to a neurologist, they will likely prescribe drugs for pain, neuralgia, etc. They won't stop whatever is causing the pain. They will just treat the pain.
D) Surgery is one solution if symptoms are pretty bad. It's a matter of how much your life sucks. So you have to decide how badly this disorder is complicating your QOL.
E) I didn't have most of the "Classic Symptoms" that most Chiarians have. However, the symptoms that doctors claim are "Classic" don't encompass the broad spectrum of Chiari Symptoms. I never had the really bad headaches or the nystagmus. My headaches did not get worse when I bent my head or sneezed or coughed. My Neurologist sent me on a ton of tests: MRI of Cervical Spine; MRI of Thoracis Spine; CT of blood vessels in skull; Balance test, Tilt Table Test (checks blood pressure and heart); lumbar Puncture to test for MS; and an opthalmolgic/neurology test. These found NOTHING. Finally got sent for a Cine MRI (April 2015) which basically videotapes the brain so it shows whether there is CSF flow in the brain. I got surgery a month later due to complete blockage of CSF.
patrick56544 Linleel
Posted
I was told about it about a month ago, but symptoms started about 5 months ago. My herniation is 4mm. My symptoms are very mild headaches, tinnitus, numbness in feet and hands (comes and goes), eyelid twitching, pain in feet when standing(not sure if it's related), shooting pain in teeth( new symptom not sure if it's related)
So, my symptoms are mild and have not really affected my QOL except for anxiety. Aside from some new symptoms, I haven't really gotten any worse. Hopefully it stays this way. I know my current symptoms probably won't go away entirely. I have days where I have nausea if I do too much.
How have you been after surgery?
Linleel patrick56544
Posted
Pretty good for 2 months and then started getting some symptoms back. Dizziness, headache, Zombie Head (like your head is full of cotton and you feel like a zombie), coordination- Got an appt. next month to see a new NS. My last one was going to send me to frigging PT. As IF!!! What is PT going to do for me??? He then referred me to this other doctor because he didn't do much Chiari.
Basically with Chiari, most doctors have no idea what it is, what to do about it, have performed maybe one surgery a year~ so you have to research it yourself and then you can inform your doctor what is wrong with you because I've had them tell me it's all in my head. Which, as a matter of fact, It IS ALL IN MY HEAD!!!
I've been driving since soon after surgery and my vision went back to 20/20. I still need readers. But my daughter thinks I drive like a maniac (So does she) and I may be having some depth perception issues (which it just now took me a full minute to remember what the term was).
So if you have only 4 cm herniation is that on both sides or one side? I had original diagnosis of 7 cm. Then on another test it was 4-5 cm. Then on the Cine MRI it was 4cm on the left and 8 cm on the right. Tricky right?
Doctors don't actually mention that there are TWO tonsils.
Get your GP to prescribe scopolomine patches for the nausea. Or you can get dissolvable nausea meds. I usually don't get alot of nausea unless I'm moving alot. You can also get Nortryptilin for neuralgia, Naproxin Sodium 500 mg for pain or something with Codeine if the pain gets too bad. I rarely take the codeine as it makes me itch and have a hangover.
patrick56544 Linleel
Posted
The MRI report just stated the tonsils extended as much as 4mm and was of uncertain clinical significance. The NS didn't mention anything about 2 tonsils so maybe they were both the same. I know I don't need surgery since my symptoms are mild, but hopefully they won't get any worse. Time will tell I guess. I do take naproxin sodium if the pain is annoying.
I lifted a desk the other and my ears started ringing louder and had nausea. So I'm learning what aggravates my symptoms. And I'm moving next month so that will be interesting lifting heavy furniture.
The NS did recommend PT so I went to 3 sessions. Since I wasn't in any pain they didn't feel I needed it. They gave me exercises at home which I haven't been doing. I need to do it because I do have degenerative disc disease, although it is very mild at this point. I guess the only other symptom I forgot to mention was neck pain. Had about 3 flare ups that lasted a few days. Been good for a while though. Anyway, thanks for the info. I might make an apppointment with an actual Chiari Dr in Pittsburgh just to find out more.
Linleel patrick56544
Posted
Avoid any doctors in New york. There are apparently some sketchy one there, which I can't recall their names, but they have been in trouble for recommending too much surgery.
Good Luck!!
patrick56544 Linleel
Posted
I'll stay with the Dr.'s in Pittsburgh. Thanks.!