Chiari Malformation Community
Can it get worse???
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Can it get worse???

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.
28 Comments Post a Comment
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

Can Chiari progress and u get worse...yes...but, it can progress very slowly or very rapidly, we r all diff, and keep in mind the symptoms can also cycle and come after we r active, so what u do on a daily basis can affect how u feel.

Finding the right Dr is Key., we do have a list of the members Drs so u have a place to start in researching them...the list is not meant as a referral.

U need more testing and ruling out MS is something we all have to do as the symptoms r very similar.....

We do have a list of ?'s for the NS in the Health Pages, just scroll to the bottom of this page for the hyper link to the Health pages and look for the page titled ?'s for the NS, also look for the list of Drs, and activities to avoid with Chiari and Syringomyelia.

U will see a diff btwn a NS and a Chiari specialist the diff is huge !!
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1663373_tn?1333639589
I have to second what Selma says about the chiari specialist as I didnt have my decompression surgery done by a chiari specialist and it is a big regret.  He did the surgery great but the after care was horrific I had my fusion surgery from Dr Oro and the difference was huge! My symptoms came and went but when it started getting unbearable and I couldnt function any longer I chose to have the surgery and words can not say how much it helped! Good luck as you go on your chiari path but please if you can try to see a specialist.
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Avatar_f_tn
Thank you for your responses.....I finally got a phone call today for an appointment.  They can't see me until July 20th but I feel great that I can finally get in front of someone.  I did find out that this surgeon, who doesn't necessarily specialize in decompression surgery, has done a significant amount of them and has had good results.  So, that helps with my thoughts.

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620923_tn?1405964489

  I know that is helpful, but u will want someone that is also looking at all related issues as well...be sure u r thoroughly checked for related conditions as it can affect how u feel and heal. Also consider a 2nd opinion.....

Good luck and keep us posted...
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1306714_tn?1327260680
Reading your post brought back so many memories back to me, because  as most of us here we have went through the same journey as you and it scary and we don't know which way to go.  This forum was the answer to my prayers because it lead me in the right direction of getting answers and surgery.  It's been 2 yrs for me and I have to say once with Chairi alway's have Chairi, but I don't regret the surgeries at all.  I'm way better off than I was two yrs ago.  Just keep being persistant and start a list of things that come to mind so you will have the questions answered that you need.  This helped me a lot.  I also had a medical partner in with me at all appt because I tended to no hear most of what the NS was saying.  Having a folder started with all reports MRI etc also helped and still does.  Wish you the best and I'm happy to hear you have an appt.  Your heading in the right direction.

Linda :)
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Avatar_f_tn
Hi everyone...I have had the worst pain in my head and neck all day.  I am ashamed to say I have had three vicaden already.  I feel weird to complain to you but to know you have been through this truly helps.  I am so sick of hurting.  I would do just about anything to feel like my old self.

Linda..my biggest supporter, my husband, will be with me at the Ns in hopes that he retains the information....my memory isn't too good nowadays.  What do I expect once I get there?  
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Avatar_f_tn
Hi, I am so glad I found this website. I was diagnosed with chiairi 12 years ago. I chose not to have the surgery because there was nothing emergent about it. Just the headaches and the horrible pressure in my head. Especially when it is going to rain.   Does anyone have problems with their hearing.  I notice when I have a headache it is kinda of difficult to hear things.   I look forward to all inputs.   Thank you.
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Avatar_f_tn
Hi, yes hearing has been an issue with me. A few years ago I noticed a muffled hearing in my rt ear. Felt like a cold in my ear, pressure but it never got better and wouldn't go away. I got ringing in my ear 24/7.  I went for hearing tests and saw a ENT.  80% hearing loss. I went for my first mri in Jan 2013,  first done w/o contrast, then done with contrast.  Results show an aneurysm, and Chiari malformation. I saw the NS  Feb 2013, he ordered a cervical spine MRI,
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5118767_tn?1363864744
I have the hearing problem also.  If its cold its worse and i have noticed that if im laying down it will be worse to.  
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Avatar_n_tn
I, like you, went from mildly symptomatic for years to really sick in a year. I can remember telling my husband a few days pre op that if they couldn't make it better I couldn't live like that. I am now 3+ months post op and doing well. As linnielou232 said, once Chiari, always Chiari, is true for me. I am so much better post op but there are still symptoms. I am hoping mine will continue to improve the further away from surgery I am. I do have a hearing loss that is permanent. 40% in my left ear. Of the things I could have lost, I'm  OK with it.
Keep the faith. God speed on your journey.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

Yes hearing issues and the weather r 2 that continue to bother me even post op....I do have other related conditions that affect how I still feel, but I was so glad I had my surgery.

May I ask, do u go for a MRI every so often to see if there have been ne changes?..CSF obstruction, formation of a syrinx?
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Avatar_f_tn
Thanks for your comment. I do have hearing loss due to so many ear infections as a child but this hearing loss goes up and down.I think it's my allergies or fluid built up in my ears only to notice there isn't any fluid or my allergies are not acting up. It get's embarressing when I can't hear people and I have to explain why I could here them yesterday but not today.
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Avatar_f_tn
Hi, Yes I used to see a neurologist and they did MRI every two years of so. I haven't had any changes. I have daily headaches and pressure in my neck and pain and my legs and feet. My hands go numb and I go through phases of being dizzy and off balance.  These are the days it's hard to stay focused and my memory is horrible.  They have given me meds in the past and it's usually something narcotic and makes me sleep. I don't want to sleep my life away. I want to be a mother to my 3 beautiful girls and not sleep through their lives.  So I do not take anything but I know I suffe from some depression because of the daily pain.  I was told that my tonsils decend 13 mm into my spinal cord. It that really bad or about average.
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620923_tn?1405964489

  The thing is did they ever do a CINE MRI to see if u have a CSF obstruction or test u to see if u have ehlers-danlos?

Too many Drs only look at the length of the herniation and not the width or if it is creating an obstruction to flow....

Do u have copies of the MRI's and the reports?
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Avatar_f_tn
I don't think they have done the CINE MRI.  The neurologist that is my dr but I haven't seen in about  a year and half seems like he is not real familiar with it. He just wants to watch to see if it gets worse than it is. My symptoms get bad and then get better then bad then get better. and of course always get's worse under stress. So they are always quick to give me some type of medicine. I do have copies of the MRI repots. The last one just says no obstruction . What is ehlers-danlos? Never heard of it.  Thanks for all your help.
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620923_tn?1405964489

  But by worse what does he mean...longer? that does not always mean worse...

we have had several members with very long herniations and not many symptoms, but the members with the shorter herniation had more severe symptoms....the reason is the CSF flow was obstructed....a small herniation if wide works like a cork, a long thin one is just that long and thin and the CSF can still flow....

Ehlers-Danlos is a connective tissue disorder many with it have hyper mobility in their joints, much like being double jointed..we bruise easy, slow to heal...there r several types of EDS and u may not have all the symptoms...but it is important to know if u have this B4 u consider surgery as it can affect how u feel and heal post op.
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Avatar_f_tn
I think he means my symptoms.  He wanted me to take Neurotin and zanaflex which I do take that. It is for my neck. He said the pressure of the chiari causes my neck muscles to be tight. Which can cause the headaches. :Has anyone ever done physical therapy? They think I will benefit from it once I get through the initial "pain" of it.  I am thinking about going to a hospital or clinic that specializes in this. I have gone to a neurosurgeon and he says he is not sure if the surgery would help me. So I am not sure what to do.   When I go back to the dr I will ask about an CINE MRI.   Do you know if anyone who has problems with keeping jobs because of the symptoms of Chiari?  
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620923_tn?1405964489

  The biggest problem with PT is finding a PT tech that is aware of Chiari and what not to do to cause further issues....several have been to PT but it is generally done to see how u fair so the Dr can rule more things out. But I am not aware of it helping if the symptoms r Chiari related.

Chiari is deff  the cause of many lost jobs.
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Avatar_f_tn
I am diagnosed with the chiari malformation. And lately I have been experiencing other issues that make me wonder if it is getting worse.

I am scared and I don't know what to do.  
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620923_tn?1405964489

  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?
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Avatar_m_tn
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
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620923_tn?1405964489

  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.
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620923_tn?1405964489

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

http://www.medhelp.org/health_pages/list?cid=186
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Avatar_f_tn
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.  
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1069888_tn?1398470712
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!
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620923_tn?1405964489

  I posted to the same post on a different thread....please see my reply there, but also not Lori and I agree NO Chiropractors....
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Avatar_m_tn
My daughter has Ehlers-Danlos and was just diagnosed with having Chairi I malformation.  The reason she received a brain MRI scan was because she has had this horrible headaches which they are saying is a migraine.  They are telling me the Ehlers-Danlos and Chiari are not related to the headache.  I need help?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I have both as well and EDS can cause HA's as well as the Chiari....what u will need to do next is get a CINE MRI to see if she has ne obstruction to her CSF flow, and a MRI of her complete spine...to rule out a syrinx.

We do have a list of Drs for ur use in researching Drs...the list is not a referral nor an endorsement just a starting place for u in ur research on Drs.
http://www.medhelp.org/health_pages/list?cid=186
May I ask what other symptoms she has?
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