Chiari Malformation Community
Could Chiari be my problem?
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Could Chiari be my problem?

Hey, guys, I'm new to this so I'll try to be brief.  I did post on the MS site as well because I'm not sure what's going on.  Several years back I was having headaches and an MRI showed Chiari I.  I don't know the mm but they said it was mild and should cause no problems other than headaches.  In fact, I basically forgot I had it because they made such a little deal of it.  Fast forward to January 2010 and I began to shake all over when I moved.  It hit within a couple of days.  If I sat still I was fine.  About a week later I began to have muscle spasms all over and buzzing, vibrations and tingling.  The MRI still showed Chiari and at least one lesion so no diagnosis of MS 'at that time'.  In fact, all the horrible 'nasties' have basically been ruled out, thank God.  I take Propranolol 1X daily for the trembling, which works great, and Clonazopam(sp?) 3X daily for the buzzing, spasms, etc., which works well.  I would hate to be without it when it wears off though.  Anyway, my neuro doesn't think my problems are Chiari and I have another MRI scheduled in May, I think it's to look more along the MS line.  Should I ask for the CINE MRI (is that right?) and what is it?  Could this all be Chiari?  It's almost like the DRs just hope it will go away on its own time or something.  And, yes, I've been given the anxiety routine, not by the neuro, as well.  I don't know what to do  and I'm sitting here now with a headache radiating up the back of my neck and head on the right side that I've had for two days.  Help!  Thanks.
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992677_tn?1337358095
My personal advise would be go see a NS who is truly a Chiari Specialist first.

Some of the things you mention I have also suffered, but that is in no way a dx. You really need that Dr visit. Know going in that the mm herniation is NOT a dx or does it nessasarly dictate the degree or frequency of your symptoms if it is Chiari. Some of these Drs will claim otherwise of course. On another note, no amount of medicine will eliminate a true Chiari headache. The best cure I've found, for which my Dr agrees, is to find ways to keep your mind calm and focused if this is Chiari related.

Wolf
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1041839_tn?1278685446
Hi and welcome to the forum! You should definately get a CINE mri! What it does is show the csf (cerbral spinal fluid) flow, and whether or not there is a blockage caused by the chiari. The thing that concerns me is that your dr doesnt think your symptoms could be caused from chiari. You definately need a chiari specialist! Blessings ~ Shannon
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1179332_tn?1297482590
Hello and welcome!

I would definitely go the route of a Chiari specialist to find out how your Chiari is playing into this. A lot of drs dismiss the significance of Chiari but that is b/c they don't know enough about it. I am concerned that they have seen a lesion also, so it is good to go the MS path to hopefully rule that out as well. MS and Chiari symptoms are VERY similiar in fact, that is how my Chiari was found, I was undergoing tests for MS.

So after you have this MRI in May I would ask to have a NS look at it too. You definitely could have all these symptoms from just Chiari. I do seem to remember reading something when I was researching about how some people do show lesions with CM too. So I have kind of babbled my way through this..lol..but it summary, get both checked out!

Take care and good luck to you!
Carolyn
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Thanks for responses.  I don't have a dr appt until after the MRI so I will see what it shows and then discuss these things with her.  Cmoeller, you are thinking what I am...that I will get the MRI and then see an NS.  Does my neuro have to recommend me or is that something I can just go and do if she doesn't think it necessary?  Is that like going behind her back and would she drop me.  I mean, I will do what I need to do because I have to be responsible for me, but I don't want to get black-balled in the neuro community.  Although this has been going on for three months, I've only been seeing the neuro for a month so this is all new to me.  The previous MRI was through my GP in Jan.  From what I've read on here it seems to be a long time if ever for diagnosis.  Thanks all!
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1179332_tn?1297482590
I live in Canada so I am not sure if the referral procedures are the same.

In my case I was referred to an NL before the Chiari was found b/c I couldn't walk properly anymore. I got the run around from him and wasn't getting any answers (he didn't see or tell me about the Chiari). Luckily, my hubby had met a NS through his business at the same time (talk about fate) and had mentioned my symptoms to him and b/c of the headaches he thought he could help. So he told me to go to my GP and get referred to him, which is what I did. So I did go behind the back of my NL and it was the best thing I did!! One thing I realized is if they are not getting you help and you have given them ample opportunity then you have every right to go around them. I would have never got a dx and would probably be labelled as "crazy" right now. So, I would go to your GP, tell him/her that your previous MRI's have shown Chiari (or the new one whichever) and that you have done research and know that this is in the surgical field and that you want to get an opinion from a NS. There shouldn't be any problem with that..even my DR who was not very helpful, had no problem referring me on (probably to get me out of her hair!!)
Good luck..you can get dx and fairly quickly but you HAVE to be your own advocate and don't worry about who's toes you step on!
Let us know how it goest!
Carolyn
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Avatar_f_tn
Hi There,
I think someone said this, but whatever you do, make sure that the new Doc is a True Chiari specialist. Our son was dx'd, then un-dx'd because his mm did not fit the 5mm rule, which if you are having symptoms does not matter.  A true Chiari specialist will certainly take your symptoms into account no matter what size your herniation is, then decide what is the best course of action to take.  I think all will agree that stress can so exacerbate your symptoms so try to relax, and don't worry about upsetting a doctor if you are not comfortable as you have to take care of you. We found a true Chiari specialist right away and had him review his records, after the first NS said his herniation was only 4mm, and upon review the new NS agreed he has Chiari and is seeing him in a few weeks. Best of luck and many prayers, Barb:)
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620923_tn?1413427272
HI and welcome to the chiari forum.

I know this can be a very frustrating time when u have symptoms and no dx....and the dr's have a dx, but feel it is insignificant.Not all NL and NS are well trained on chiari and were given outdated info during med school which is usually brushed over.....

AS Wolf and the other's have mentioned u need to get to a true chiari specialist...please see our list as a reference and research all drs u consider.

As for the one lesion u do have...I was told bad headaches can cause these lesions to form, if u had demylation occurring then I would be concerned.

Now, it is possible to have both chiari and MS...and chiari headaches and migraines.....so, do find a dr with more experience with chiari to learn more about ur condition.

I am happy to have u as part of our little family here, so sorry the reason u had to seek us out.

I pray u find the right dr for u.

"selma"
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Avatar_f_tn
This morning i was told after having an MRI and a CS that I have chiari 1 malformation with the right extemding 8 mm extending below the level of the foraman magnum.
I am 71 yrs. young, and have had several things wrong and/or happen to me over the years.  I have a fusion of the three lumbar discs with a rod done 25 years ago.  I saw a specialist who wanted to open my whole spine and fuse all of the vertabrae together, and there is scolosis at the top.  I declined this surgery, because i felt it was too severe at my age, and the recovery would have been long and painful.I
I have to say in all my years I have never heard of this chiari until today, so anything anyone wants to share with me would be helpful.
I don't suffer from headaches, my blood pressure is high and i am on meds again.  My blood tests dropped a lot a few months ago, and I was on iron pills for that long, they are showing okay now.  I will start bp pills tomorrow.

I, too live in Canada.  We are lucky we can see specialists without charge.  My md is booking me to see a specialist.  What would that prove?
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620923_tn?1413427272

  Hi, as I stated in reply to ur other query about seeing a Chiari NS, is u need to have further testing to see just how ur chiari is affecting u...if u have a CSF obstruction, if u have a syrinx, which can form in the cervical, thoracic and lumbar spine. Once a syrinx forms it can grow and cause nerve impingement, that left untreated can cause perm nerve damage.

SO it will prove or show how it is affecting ur overall health.
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Avatar_f_tn
Hi All
I am new here and am in need of some information and/or suggestions.

I have had back trouble for years. Had a fusion down in lower back in the 1990's.  Then also had neck fusion done in the 1990s.  I have been having trouble with severe back leg pain.  I have seen several drs.  I know I have a Chiari and had it for years.  This last year the back of my head hurts most of the time to the point of feeling numb sometimes.  It even affects the outer cartlidge of my ears.  I had an mri done earlier this of the brain and cervical region.  I am waiting to hear from them.  I had a back stimulator removed a couple weeks ago because it did not work anymore.  My left leg foot is the hurting most of the time.  I have spells with the right one.  My face feels numb also.  I am waking up in the middle of the night with bad headaches in the back of my head.  Any suggestions from anyone would be welcome.
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

May I ask when was ur last MRI?...And what areas were done? Brain, w/wo contrast, cervical , thoracic and lumbar spine?

And were ALL related and non related conditions ruled out? Lymes, Lupus, and MS for non related, and Syringomyelia, disk issues, tethered cord, sleep apnea, ICP, POTS, CCI, Ehlers-Danlos......

And lastly did u ever have a CINE MRI? this is also known as a flow study and done to see if u have an obstruction to CSF flow.

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