Chiari Malformation Community
Bizarre Symptoms
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Bizarre Symptoms

Hello,

I'm new here.  Not really sure how it works but I'll give it a try.  I'm 28 years old and was diagnosed with Chiari Malformation 10 years ago.  I've always had head pain/pressure, stiff neck and shoulder muscles, slight weakness of the left side of my body, inability to swallow sometimes, intense dizziness........ I'm used to that but now I am having symptoms that are new and I have no idea if they are related to Chiari or not.  Something is wrong with the back of my head.  It feels like the back of my skull down to my lower back is both simultaneously burning and numb, I'm having what I think are tactile hallucinations like feeling that things are crawling on my skin, I will spontaneously vomit, my left eye spasms a lot, my hands and arms fall asleep for no reason and the latest is that I am getting what feels like miniature electric shocks in my hands.  Does anyone know if this is characteristic of Chiari?  It's becoming increasingly difficult for me to function as these new things afflict me.  I'm very concerned.  Any help or advice would be greatly appreciated.  Thank you in advance for taking the time to read this.

Jennifer
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620923_tn?1405964489
Hi Jennifer and welcome to the Chiari forum.

I am not sure how closely u r being monitored for ur chiari, but it is possible that u have developed other chiari related conditions or they were triggered by something....
Do u know if syringomyelia and tethered cord were ruled out?

When was ur last MRI and do u know if u have a CSF blockage?

And most important do u have a chiari specilaist??

I have heard of the issues u r talking about, but they r not typical symptoms. I must suggest u get to a chiari dr and get a check up.

Let us know if u need assistance in locating drs names to research.

"selma"
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Thank you for the prompt response, very much appreciated.  I'm monitored, but not very well (3 nuerosurgeons have told me to get the surgery but my personal nuerologist believes I'm suffering from psychological maladies unrelated to the Chiari - go fig).  I had a cat scan a year ago and an MRI like 2 or 3 years ago.  Everytime I have an MRI it just says (or shows rather) the same thing.  I've never (that I know of anyway) had CSF blockage and I don't even know what a tethered cord is.

No, I don't have a specialist due to insurance issues and not having any idea where to find one. Most doctors I go to barely know what it is, which is really frustrating.  The only place I know of is the Chiari Institute in Long Island, which is not so far away.  But I can't afford it and they don't accept insurance.  I am working on getting Medicaid (which they do accept) but I'm in NJ so I don't even know if that would work.  Do you know of any specialists in NJ?  I am in the Bergen County area.  Any help would be greatly appreciated.

Thank you again,
Jennifer
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620923_tn?1405964489
There is a big misunderstand with The Chiari Institute and insurance.The institute and the NL do work with insurance, it is the NS that do not.

There is a co-pay for the NL and I have heard from others that they will work with you.

I was just to TCI and I had to pay the NL co-pay and the fee for the NS.It was quite costly and I was informed b4 the visit. I had all my suspessions clsrified and a few more conditions dx.I feel  it was worth the cost as all the other drsd had no idea what was going on and I was dismissed more times than I can remember and I was given meds for anxiety......

Call TCI and see if they can work with u...what insurance do u have?? If it is in the Blue Cross Blue Sheild  criteria then most likely it will be accepted.

Does ur PCP understand what ur dx is?...will he/she rx MRI's for u?

Tethered cord is a related condition to chiari and it can cause the elongation of ur brainstem and many neuro issues...even bowel and bladder problems and gastric reflux issues.

We do have Health Pages with more detailed info...see the welcome message for a link or the ico to right of the screen.

"selma"
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555358_tn?1292535661
It sounds like your herniated cerebellum may be being squeezed in your skull. You need to have an MRI as soon as possible.
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ummmmm............. hmmmmmmmmmmmmm.............. actually I do have Horizon blue Cross Blue Shield, but when I called the institute they said they only accept "out of network" benefits, which I cannot afford to have under my ridiculous plan.  I don't have a primary out in Jersey (used to live in the Bronx and had one but he moved to Florida)  Nobody really understands what Chiari is.  My nuerologist is being unsupportive and is not returning my calls and I don't know why as I've been seeing him for 10 years.  I hate this.  Right now my skull is burning and numb and just about THE MOST annoying thing I've ever experienced.  I'd almost rather prefer pain (which I often have anyway).
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cerebellum being squeezed into the skull......... wow that sounds bad.  I guess I'm going to have to fnd another nuerologist or go the the frekin' ER which is like a $200 co-pay and might not even cover the cost of the stupid MRI.  Urgh.  Thank you for your opinion, but here's to hoping it's wrong :-)
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555358_tn?1292535661
I hope I'm wrong too.

Selma, any advice on finances?
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620923_tn?1405964489
Hi Shane...I just sent a PM on what I was told by TCI...I believe it gets misconstrewed and the way they explain it is very confusing...

ONLY the NS are out of network and the NL u pay the co-pay as if u went to one at home......for the eval u pay the NS fee...for the surgery I was told they wilaccept ur ins plan's out of network as long as the % was not too small, other wise u may get a bill...BUT TCI bills ur insurance comp.

I do know of one woman that was billed and told her ins comp she had to go out of network bcuz there wasn't a dr in network to treat her and she got the whole thing covered...push and u just might get it all paid.
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2021368_tn?1335472627
Hi everyone,

I'm new here and I've often read through the postings for advice. Here's my story....

The middle of August this year, the left side of my face swelled up and I was in excrutiating, unbearable pain.  I thought I had a bad tooth (though I had been to the dentist not that long before), but I couldn't pinpoint which one it was because all the teeth on the left side hurt.  I finally went to the emergency room. They checked all my teeth and my ears and couldn't find any infection.  They diagnosed me with trigeminal neuralgia and 2 shots of morphine later, sent me home with a referral to a neurologist.  My neurologist put me on Tegretol and Lyrica and set me up with a CT scan and MRI.  The CT scan showed no tooth problems or TMJ, however the MRI showed a 5 mm Chiari Malformation.  So my journey with Chiari began...

I was sent to U of Michigan to meet a neurosurgeon.  He ordered another MRI to look more closely for brain cancer.  At my follow up appointment, he just walked in to tell me there was nothing he could do for me except send me to a pain clinic and remarked how swollen my face was and walked out.  I was referred to another neurosurgeon by a friend, he said the same....

I was getting severly depressed, no one could help me.  By this time, I was getting electric shocks going through the back of my head (neurologist says this is occipital neuralgia)  my neck and upper back are always in pain and the only way I can describe it is that it feels 'weak'. I have trouble swallowing, I see 'stars' and have the constant whoosing in my ears.  I have electric shock going down my spine and my arms and hands feel weak.  

Finally, my ex-husband referred me to his back doctor, I had no idea he was a neurosurgeon.  At my appointment, he spent 45 minutes with me!  Did not rush me out like the other two I had seen.  He went over my MRI's and told me all my problems were caused by Chiari.  I have never been so releaved!  He ordered another MRI, this time on my spine.  I will have that on Monday and see him Tuesday.  For the first time since this began, I feel like I'm getting somewhere.

My question for anyone is, I had injured my shoulder at work in June. As a result of that, the workman's comp doctor put me in a sling until I could see my orthopedic dr.  I had to wear the sling only at work, 5 days 40 hours a week.  I would call workman's comp daily for approval to go to the dr and was always denied.  This was when I started getting migraines and my neck and back started hurting as a result of the strap going around my neck. I wore this for 8 weeks until my face swelled up and I was taken off of work. I am 32 years old and I've read that if you have Chiari that's when the syptoms (symptoms) usually begin.  Does anyone know if wearing this sling for so long could have brought on the symptoms suddenly?  I've asked the doctor's but none of them are sure.  

Thank you all for listening, it feels good to know there are others out there :)
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

It is very possible that what ever caused ur injury, triggered ur chiari to be symptomatic, and the sling did not help at all.

It was pulling down on ur neck, an area that is touchy as a result of having chiari....

WC will not cover it, since Chiari is considered to be congenital.....it is a diff uphill battle and none have won so far.

     "selma"
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2021368_tn?1335472627
Thank you Selma

What upset me about the whole situation is I would call WC daily and beg them to send me back to the WC doctor that put me in the sling.  I would be in tears telling them how badly my back, neck and migraines were as a result. They always refused.  

Thank you again,
Angie
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620923_tn?1405964489

  No worries Angie...do u have a Chiari specialist to get some direction from?

     "selma"
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2021368_tn?1335472627
Hi Selma,

I had MRI #3 yesterday and saw my neurosurgeon today.  I will be having the decompression surgery on Feb. 27th.  I'm happy and nervous at the same time.  The left side of my face is swollen again and the pain is unbearable.  Any tips for before and after surgery?  He said I will go to the ICU for a couple days and I'm going to be really sore for about a month.

Thanks again,
Angie
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620923_tn?1405964489

  Hi Angie, congrats on getting ur surgery scheduled....we do have a Heath Page on Hospital tips...things to take along, and things to do to prepare..etc....
  And there is a page for things to do once u r home...activities to avoid.

DO u know if u r going to have a dura plasty?..if so, what type of patch?

  Get a list of questions for ur NS and give them to whom ever is going to be at the hospital with u, so they can do the asking.....

    Keep in mind, we r all different and there is no way to be completely prepared.....

     If u need nething let me know...scroll to the bottom of this page to locate the link to the Heath Pages.

     "selma"
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2021368_tn?1335472627
I had my Chiari decompression surgery on Feb 27th. My dr said he has never seen a skull like mine and it's too bad that he's not a 'teaching' dr because others would've had a lot to learn from seeing what he saw. Not only did I have the Chiari, but the base of my skull was so curved up that it was cutting into my nerves. He had to shave the base back and also removed a piece of my skull.  He did not remove any vertebrae, he said they we so loose that if he would've removed any, he would've had to fuse my neck then. He said I may still have to have the neck fusion, time will tell.  He is also publishing my case!  I spent 4 days in the hospital, which was probably the worst part of the whole experience. The neurosurgeon nurse acted like I shouldn't be in pain.  I asked her if she ever had her skull cracked open and luckily my dr put her in her place. I still have some pain, my dr said it's the occipital nerve, it hurts when I brush my hair on the right side. He said it's just still irritated from the surgery because he had to move things around to place the patch. I thank God everyday that I found my doctor. I went to 2 other neurosurgeons and almost considered having my trigeminal nerve severed before I found him. One neurosurgeon was at the University of Michigan, a teaching hospital, so they missed out. The other neurosurgeon said I didn't have Chiari, that everyone has different shaped skulls. My advice to anyone going through this is don't give up! I almost did, I told my mom that I was done with tests and doctors if this last neurosurgeon did nothing. Lucky for me, he took one look at my films from the 3 ct scans I had and said, you have Chiari, let's take care of this. I have no more pain in my face. Just healing and looking forward to getting back to my old self :)
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620923_tn?1405964489

  So glad to get an update on ur surgery and recovery...it is so validating to get a Dr that not only knows what chiari is, but agrees this is the issue.

I had 2 NS's tell me pretty much the same as what u were told...one said I did not have it, the other said I did, but it was beyond him....lucky for me, I had one more NS to see and it was the one that did my surgery.

I have to say, it sounds like u may have Ehlers-danlos with the neck being so loose and that is y so many need a fusion...I was told I will need it....

  SO glad things r going well for u...just remember to take things slow....don't rush to do day to day household chores as it can cause a set back.

  Do keep us posted with updates : )

  PS- look at our list of  Drs to see if the NS that did ur surgery is on it.....we r always looking for more names of Drs that do know chiari.
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2021368_tn?1335472627
I will have to ask him about the Ehlers-danlos, I didn't know that!  My dr's name is Dr. Arturo Paz, I don't think he's on the list. He's located in Livonia, Michigan. I'm taking it easy still, I just recently started driving short distances again, because my neck is still sore I'm not comfortable turning my head. I was trying to post a pic, but I can't figure it out. I've seen most incisions are a straight line, but mine looks like a backwards 7. Thanks for everything Selma :)

Angie
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620923_tn?1405964489

  Do be careful driving as it is the way u have to hold ur arms that can affect ur neck too...so take it slow.

And let me know what u find out....

If u don't mind adding ur Drs info to the Drs list thread with his address and contact info that would be great : )
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707040_tn?1337319979
My son is the one with the chiari. My experience so far has been that neurologists have a different focus/point of view than neurosurgeons. The surgeons tend to be more proactice and seem to have a better understanding.  A neurosurgeon who is very experienced with chiari is even better.
Good luck
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2021368_tn?1335472627
Hi Selma,

I have a question regarding a post I saw on here about CSF leaking out of the ears.  About 2 weeks before my surgery when my symptoms were the worst, I started having clear fluid leak out of my right ear. I grew up with ear infections (even though this particular one doesn't hurt) so I just figured it would go away. I even took some antibiotics I had and it did't do anything. I mentioned it to my dr's office nurse but she told me he doesn't deal with ears so I should see my family dr. I didn't want to push my surgery back so I didn't. After my Chiari surgery, it stopped for about 2 weeks but it came back and now it's non-stop. No pain with it, just a nuisance more than anything and I figured I would see my family dr when I was feeling better from the surgery. Should I be concerned? I'm not sure if I should call my neurosurgeon or an ENT specialist. Also, about the Ehlers-Danlos. I did some research on it after your post and couldn't believe the symptoms that I have that match it. I have a long health history, particulary with joint problems and muscle tears. I've had 2 knee surgeries, one because knee cap was off track and before all this Chiari, I had 2 surgeries on my shoulder. I also have issues with tons of scar tissue in my abdomen. Is that something I would also talk to my neurosurgeon about or do I look for a specialist?

Thanks for all your help,
Angie
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620923_tn?1405964489

  Well I posted a long reply and it all disappeared...ugh....

so, I apologize as this will be short and to the point....ur Chiari specialist should have looked for EDS b4 surgery as it can affect how u feel and heal post op, since u have not been dx'd...see ur PCP and ask about finding a rheumatoid Dr in ur area that may specialize in EDS....

For the fluid that is draining, it may be a very small leak that is not affecting u, so do try the paper towel tip to see if u get the halo.....
And advise ur PCP Dr about the fluid and ask about a ENT referral.

  
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