Can it get worse???

[goladene]

After years of head aches and passing out spells I was diagnosed with Chiari 1 in March of this year.  When I got the news, I didn't know how to respond.  I was greatful to have the answer but afraid at the same time that they actually found something.  I have read so many of the forums here and I have to say THANK YOU for letting me know that I am not alone.  I have felt like nobody understands, that I am an inconvenience to my family, that I did this on purpose, etc.  But reading everything you all have had to say makes me feel like I belong and not losing my mind. My husband and kids are great but the rest of my family are clueless and are fighting me every step of the way on the surgery saying it isn't necessary.  I feel like they just aren't taking it seriously.

I am currently trying to get into a Neurosurgeon, which by the way is like an act of God. I started with the neurologist but after he diagnosed me he tried to tell me that although I met all of the symptoms of Chiari that it was possible that I could have MS.  So he bounced me from medication to medication but no relief.  I felt that was a total waste as he wasn't listening to me.....why won't they listen??  It is so frustrating, But my question to everyone is, is it possible for my symptoms to get worse?  My headaches have intensified to the point where my hair closest to my scalp hurts to touch.  My arm and leg are getting weaker, the headaches are daily now with no relief, my concentration has become worse and I am exhausted all of the time.  Has this happened to anyone else?  Will it continue to get worse?  

And lastly, for those of you who have had the surgery or are visiting a neurosurgeon.....what do I expect once I get in to see him?  What questions should I ask?  Please tell me that once at that level he will listen to me.

Your advice is so appreciated.

[laratterman]

You REALLY should not have any neck adjustments!  I can tell you from experience, that though sometimes they may feel good at the moment, they can do more harm than good.  If your Chiro knows you have Chiari, then they should be AT MOST using an actuator on you!!!  BE CAREFUL!!!  Please read up on Chiari and Chiropractic!!!  

The last Chiro I had only did a very mild form of traction on my neck (she was a very gentle woman, so only using her hands while she sat above my head with me laying down) and only used an actuator on the rest of me, eliminating all the twisting.  (Which can also be a problem in the rest of your spine if you happen to have tethered cord and don't know about it!)  It admittedly took a few weeks longer to receive the same time of sometimes instant results as before, but it did eventually help some and made the frequency of my symptoms diminish.  

Blessings!

[muxman1]

I found out about 7 years ago that Chiari type 1.  My symptoms have been mild: lack of balance (meaning if I start to fall, I fall and can't catch myself), ringing in my ears, headache, and shaking in my hands.  I found, at first, that if I was in alignment (seeing my Chiropractor), I didn't have the headaches and the shaking wasn't as bad.  I never connected the hearing loss in my right ear to Chiari.  Anyway, about 3 1/2 weeks ago I started having a headache that won't go away, have chronic fatigue, and was having problems focusing.  I am a student, so this is a problem.  Last night my upper left arm started hurting and then continued to migrate all the way to my finger tips.  At midnight I had a sudden and sharp pain behind my right eye, but it wasn't my eye that last about 10 minutes and then when back to the regular headache.  My ears have been hurting too, but I have no congestion and the doctor looked at them and they are not infected.  I saw the Chiropractor today, which helped the pain in my arm, but my head is still aching.  Is all this related and could all this really come on this quickly?  Will an MRI show progression of Chiari?  I never really studied this because it didn't seem such an issue when I found I had it.  Any help you could give me would be appreciated.  

[selmaS]

  I forgot to give u the link to the Health Pages...here it is-

http://www.medhelp.org/health_pages/list?cid=186

[Mikellconklin]

It didn't work

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DD has been DX'd with Chiari along with seizure activity.....it seems some do develop seizures or epilepsy along with this condition. Some will be relieved of the seizures with the decompression surgery , some do not.

We are all diff in how Chiari can and may affect us....the issue is too many Drs do not think it will have an effect...and do not look further ...but there are related conditions and issues that should be ruled out.

Just bcuz u do not think ur DD has symptoms does not mean she is not having them...those born with this condition adjust to symptoms and do not realize it is a symptom or something to complain about until they flare and feel worse.....

Not knowing what area u r from I will suggest u look at the list of Drs in the Health Pages and use it to research Drs with experience with Chiari, this list is NOT a referral nor an endorsement...but a means to help u get started in researching a Dr. See a few and compare them to decide which one is best for ur DD.

Educate urself on Chiari and related conditions so u will be able to recognize the right Dr.

We will help u here the best we can so u know what testing to ask for and what the Drs should be ruling out.....

Yes, some can live with a cerebral herniation their whole life and it not affect their quality of life , while others are in pain and can not find out y.....

Chiari symptoms cycle, so they can get dismissed as  overdoing it or the flu...and a number of other reasons, but no one considers it is part of a larger pic until they get the initial DX.

[Mikellconklin]

Hey my name is Vicky and from my experience they won't even tell you if you're in the gray area I just found out today that I was in the gray area in 2013 I have been complaining about everything every symptom it seems like they say I have I don't understand why no dr. Neurologist pain doctor regular doctor no one has said anything to me hopefully on Wednesday I see my neurologist and I'm going to talk to him and tell him what the Imaging Dr told me when I called today what was my results in 2013 and he told me I was in the gray area when I found out about this I have been suffering for years for like 10 years and it it's ridiculous I'm sorry I missed her cry but it makes me so mad it's like no one cares but if you can help me I would be greatly appreciated.

[Mikellconklin]

The more you tell me the scarier I get I have so many of these symptoms I don't understand why nobody has noticed it just makes me more and more upset oh and my last post I was speaking into this thing and I tried to correct it but I posted it before I read it so sorry it kind of looks crazy and I do appreciate this site the more information I get the better off I know I will be so I can get informed information about this and what I need to do and who to see who to contact this is so awesome and I'm so glad this is free and thank you

[selmaS]

Hi and welcome to the Chiari forum.
This is an older thread and the member you are addressing may no longer be an active member, you may want to create a new post so active members reply.

[J1979]

hello all I am glad I found this web page. My wife and I just found out that are 4 yr little girl has stage 1 chiari malformation  only reason we found it is because she had a seizure , so we went to the the Doc to found out what the MRI said. Well not only one punch to the face we had two!!. She has a rare form of epileptisy called ( periventricular heterotopia ). From the outside I would of never even thought , she is a active and healthy little girl. We see the NOS on the 31 oct. I dont know what to think I wish I can just take her place. The good thing is she doesn't have any problems "yet" other then her seizure. So what I am getting at can you live with this your hole life and not have any problems or will it eventually catch up? PLEASE HELP

[selmaS]

  Hi and welcome to the Chiari forum.

This can be a scary journey, but know u r not alone....

Chiari symptoms can cycle and flare so it is possible that the stress of ur DX has cause xtra stress so u are in a flare.

Do not rush to surgery to "fix" urself...education as to what all is going on and how ur Chiari is affecting ur overall health is important so u can also know what u found the right Dr for u and when surgery may be the right option for u too.

May I ask what symptoms u have now, what are new ....??

What testing u have had to date?