ARNOLD CHIARI SYNDROME

Hi all you fellow AC'ians.  I have Type or Stage 1 Arnold Chiari Syndrome, discovered by accident from an Brain MRI scan for something else.  When they told me of this incidental finding at first I was excited because finally I knew where my pain was coming from.  My GP tried to tell me it was the muscles in my neck and to do more exercise.  What a git!  I went to a Neurologist and he confirmed the AC and told me he could not do anything yet and said that I was already doing the avoidance things.  Lately instead of being pleased that I finally knew as a middle aged woman what the pain I have had for 20 years was, now the pain is worse and more often and its frightening.  

I wanted to know if anyone else gets a chemical taste in their mouth?  Its like a dry mouth but lots of saliva and the taste of really strong medication like antibiotics or Diazepam, that sort of thing.  I wondered if it had anything to do with the AC.  

I get tinnitus also, have had it for two years or so.  Did not realise until reading this community that other AC's get tinnitus also.

Lauren

[selmaS]

  Hi and welcome to the Chiari forum.

  Getting the dx for chiari can be quite elusive....and finding the rights Drs even more so.....

As for the metallic taste that can be a CSF leak that u r tasting....do let ur Drs know about that. And if u have a leak if could be y u have chiari.

The term Arnold Chiari is not used for Chiari type 1 so it is just Chiari malformation....it is an older term now used for Chiari type II.

May I ask what they were looking for when u had ur MRI?...It seems many of us have had our chiari found by "accident".

  Do make sure u r tested for related issues/conditions as well.

Syringomyelia, PTC, ehlers-danlos, tethered cord,disk issues,sleep apnea.....

And make sure the NS u go to is a true chiari specialist.

[Goldie3784]

Hi Selma  I had a lump growing in my cheek, turned out to be a pleomorphic adenoma and this had to be excised.  I work in the ENT Department so I asked the doctor to write and tell my GP to refer me to a neurologist but I believe I need to go to a neurosurgeon, not an ologist.  

I will read up about csf leaks.

I asked my ENT doctor if he would look at the scans again to see if they are missing anything, it might be that the AC is not the cause of my skull pain.  Want to be sure.  

Lauren x

[selmaS]

  Well a NL is next as they will do more testing, u do need to have one that is experienced with chiari tho, and will know what tests to do.

U need them to rule out a syrinx, they can be found in the cervical spine, thoracic and lumbar spine, and in doing the lumbar and cervical they can rule out tethered cord....and by doing the complete spine they can look at all the disks to be sure u do not have a disk issue...

They do testing for lymes, lupus, MS....just to make sure there is nothing else going on as they all have similar symptoms.

  U also want to be checked for sleep apnea, and ehlers-danlos, and PTC...as it can affect u if u should go for surgery in how u feel and heal.

[Rahe28]

I have had that metallic taste inmy mouth for like 2 weeks now, and I didnt now how to describe to my DH except for...really dry, and really nasty, it is even still there after I brush my teeth! It is so yucky !!

[Laurrr]

Hi guys. I'm relatively new to the whole chiari concept as my doctors seem to have no idea about it....any way, Ten days ago I got this mild taste of metal in my mouth, I thought it was a bug going round so ignored it by brushing my teeth 4-5 times a day and drinking extra water (I drink 4l or so a day already). It wasn't until 2 or 3 days ago when the taste started to affect my eating that I saw a doctor. The taste worsened to the point that it tastes like poison. Every time I tried to eat I'd almost vomit and my belly would pain (along with the already mentioned strengthening metal taste). The doctor said it was just stress and sent me on my way. Reading all these comments seem as though its pretty standard for us chiari people to experience this horrid taste but many of you mention it may be from meds, I'm not on any meds as all my doctors seem to think I'm making up my pain. Should I be worried about this taste? Or is ot just a matter of researching the CSF leak? Thanks, L.

[selmaS]

  Hi and welcome to the Chiari forum.

  There are many reasons you could be having the metallic taste. It could be a simple as a byproduct of smoking tobacco, the fillings in your mouth (especially if they are new), medication such as antibiotics or it may just be that you are in a particularly high pollution area. However, it could the result of a more serious, underlying medical condition such as a heart murmur, pregnancy, tumor or seizure. If you are experiencing a metallic taste in your mouth for long periods of time, it would be best to see a doctor to rule out anything serious.For those with Chiari it could also be a CSF leak,  symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth .

Since ur Drs are not well versed with Chiari u will want to locate one that is a true Chiari specialist.....we do have a list on here for u to use as a tool only to research as it is NOT a referral....and not ALL Drs on the list may be true Chiari specialists.

If u need help locating info or have more questions, just ask : )

[Laurrr]

Thank you. I will look into it.