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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.
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.
I was born with this Chiari, I had very bad symptoms when I was young, and now, they are truly outstanding! They use to only last 3 to 6 wks. Now I have had 2 symptoms for over 2 yrs. and a 3rd was has come about 7 to 8 months ago. I am 59 yrs. old, was born with this and just might have the surgery. I am on disability just over 4 yrs. and I can not take it any longer. I need to go back to work, soon!!
1 Comments
Hi and welcome to the Chiari forum.
Most with a Chiari DX were born with it as it is a congenital condition...some can have acquired Chiari but it is not truly Chiari since the skull is not malformed....it is usually low lying tonsils. The symptoms and treatments are the same.
Surgery is not a fix or cure, it is only a means to restore CSF flow...is yours obstructed? Do you have any other related conditions?
I had my surgery at 49 and am only back to work part time ...a year this past April...so, depending on what else you may have going on, recovery and being able to work again may take time. JMHO
Most with a Chiari DX were born with it as it is a congenital condition...some can have acquired Chiari but it is not truly Chiari since the skull is not malformed....it is usually low lying tonsils. The symptoms and treatments are the same.
Surgery is not a fix or cure, it is only a means to restore CSF flow...is yours obstructed? Do you have any other related conditions?
I had my surgery at 49 and am only back to work part time ...a year this past April...so, depending on what else you may have going on, recovery and being able to work again may take time. JMHO
I have Chiari as well and feel as though no one really understands someone in my family actually said what pain when I got so frustrated one day and said I am in so much pain all the time and no one gets it and she was like what pain? I was so hurt and so angry all at the same time because it was like they think I am faking it WELL GUESS WHAT I AM NOT. I am so happy I found this page. I feel as though my chiari is getting worse as well it STINKS!!! And I am unsure about having the surgery since I have a 4 year old and he has special needs. My neurosurgeon that I finally got in to see this past week told me that she wanted me to get MRI of my whole brain to rule out any other cause and she had me go see an optamologist as well to rule out optic nerve swelling which i do not have...I am just frustrated with the whole process of finding the right doctors who can help me...The neurosurgeon I saw said that I have LITERALLY tried everything to try and help the pain. My vision is blurry my headaches/ migraines are constant everyday. I am so glad I can post this and you guys understand
1 Comments
Hi and welcome to the Chiari forum.
Validation with this condition can make us to emotional because we bump heads with so many that just do not understand...and most of them are Drs!
So, we have to give our family and friends a little leadway since they are not medical professionals.....but w can educate them....ask them to join here too so they can learn how they can help you.
Have you had MRI's of the cervical spine, thoracic and lumbar spine? It is important to rule out disk issues, and related conditions like Syringomyelia.
Let me know if you need help finding a Dr....what area you are in or can travel to as not all areas have well informed and experienced Drs for Chiari and related conditions.
Validation with this condition can make us to emotional because we bump heads with so many that just do not understand...and most of them are Drs!
So, we have to give our family and friends a little leadway since they are not medical professionals.....but w can educate them....ask them to join here too so they can learn how they can help you.
Have you had MRI's of the cervical spine, thoracic and lumbar spine? It is important to rule out disk issues, and related conditions like Syringomyelia.
Let me know if you need help finding a Dr....what area you are in or can travel to as not all areas have well informed and experienced Drs for Chiari and related conditions.
COMMUNITY LEADER
Hi yourmom02 and welcome to the Chiari forum.
It is possible if the MRI is not set the exact same way they are getting different angles or slices and it may appear to grow or shrink when it is in fact the same size....
Picture it like an upside down pear...slice into 3rds....if you look at either outside slice they appear smaller in size....but if you look to the outside and next time an inside slice it appears to have grown...then the next time another outside slice it appears to have shrunk....
Make sure the Dr is a true Chiari specialist and is well experienced not only with Chiari but ALL related conditions.
Most pain meds will not touch this pain....and Topamax (topirmate) changes the way you perceive the pain over time......so if/when you stop taking it you will see just how you were benefiting from it.
What type of MRI will this one be? A CINE MRI?
And will it be the EMG nerve conduction testing?
2 Comments
Good Morning, I am new to this but can some one explain to me how my herniation has going from 4mm to 8mm in 7yrs. Will this get worse as i age? I have so many symptoms going on right now. I was tested for MS,Lupus, RA just to name a few. Every blood test under the sun. 3 spinal taps and every symptom leads back to the chairi malformation
Hi and welcome to the Chiari forum.
It is very possible your herniation didn't grow, but the way the MRI was done changed and can make it appear to have grown.....then again, it may have...the only way to know for sure is to make sure you are seen by a true Chiari specialist. Chiari never seems to come alone and we can have several related conditions starting with Hashimoto's Thyroiditis....sleep apnea, POTS, Ehlers-Danlos, ICP, CCI, basilar invagnation......and that is just a start.
May I ask what type of MRI's have you had...Brain, cervical spine Thoracic and lumbar spine? How about a CINE MRI?
May I ask do you have other DX'd?
It is very possible your herniation didn't grow, but the way the MRI was done changed and can make it appear to have grown.....then again, it may have...the only way to know for sure is to make sure you are seen by a true Chiari specialist. Chiari never seems to come alone and we can have several related conditions starting with Hashimoto's Thyroiditis....sleep apnea, POTS, Ehlers-Danlos, ICP, CCI, basilar invagnation......and that is just a start.
May I ask what type of MRI's have you had...Brain, cervical spine Thoracic and lumbar spine? How about a CINE MRI?
May I ask do you have other DX'd?
COMMUNITY LEADER
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?
1 Comments
hi i have chiari and at first I had a 3-5mm herniation that went from 11mm in April and went down to 3 in May. The doctor had said he had never seen anything like that before I believe in miracles and anything can happen. I pray about my condition but now I have more issues I have symptoms of a syrinx I hurt in my shoulder on the left side. Across my back it is numb it started out like a burning sensation and sometimes still does. But it hurts for me to raise my left arm all the way. It feels better for me not to move my arm and to hold it close to my body. I have numbness and tingling in my face and loss of sensation in my left side. At night it feels like crawling sensations under my skin very hard for me to go to sleep. I take topirmate 25 mg twice a day, it helps me with headaches but not the pain. I just take tylenol I have an appt coming up soon for mri and nerve test.
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?
2 Comments
Hi I am 29 years old and I have been diagnosed with cherry malformation type 1 and my doctors didn't know I had it until it starts perience and severe migraines from the back of my neck rotating behind my ears and up around my forehead and they would last for about a month nothing takes the migraines away from what I have understood about it I've had migraines for about 7-8 months and I can't move my neck I also because of the Cherry malformation I also have severe sprained spine problems yes nothing helps but I'm hoping with seeing my new neurosurgeon and my neurologist that I will get this surgery done in the surgery is the best bet Plus Ms and Cherry malformation can be mixed up sometimes because they both experience the same amount of pain and we are in this going on with your body just letting everybody know cuz I haven't been the same since I've been diagnosed and having severe migraines for about 7-8 months every single month and it feels like somebody's ripping your brain out or stabbing your brain so I know how it feels hope this help somebody God bless and have a nice day.
Welcome to the Chiari forum.
Thanks for adding so very kind and thoughtful words to our forum.
It is very important to find the right Dr, one that is well informed on Chiari and ALL related conditions and should be very well experienced with them both too.
Not only should you be confident with the Dr but comfortable as well.
There are many Drs that do not believe Chiari can cause symptoms and some that will do the surgery and not believe other conditions need to be factored in first.....so be careful where you go.
Last Surgery is not a cure or a fix.....some can get worse post op so do research Drs thouroughly.
Thanks for adding so very kind and thoughtful words to our forum.
It is very important to find the right Dr, one that is well informed on Chiari and ALL related conditions and should be very well experienced with them both too.
Not only should you be confident with the Dr but comfortable as well.
There are many Drs that do not believe Chiari can cause symptoms and some that will do the surgery and not believe other conditions need to be factored in first.....so be careful where you go.
Last Surgery is not a cure or a fix.....some can get worse post op so do research Drs thouroughly.
COMMUNITY LEADER
I posted to the same post on a different thread....please see my reply there, but also not Lori and I agree NO Chiropractors....
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!
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!
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.
COMMUNITY LEADER
I forgot to give u the link to the Health Pages...here it is-
http://www.medhelp.org/health_pages/list?cid=186
1 Comments
It didn't work
COMMUNITY LEADER
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.
3 Comments
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.
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
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.
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.
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
COMMUNITY LEADER
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?
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.
I am scared and I don't know what to do.
COMMUNITY LEADER
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.
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?
1 Comments
me, I have not worked since 2006
COMMUNITY LEADER
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.
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.
COMMUNITY LEADER
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?
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.
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.
COMMUNITY LEADER
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?
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.
Keep the faith. God speed on your journey.
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.
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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