My daughter was diagnosed with a Chiari 1 Malformation when she was 6 and had the decompression surgery. Her tonsils extended 7 mm below. Her symptoms went away however they came back and she was diagnosed with cerebellular slump. She had a 2nd surgery adding a titanium bridge underneath her cerebellum because there was not enough bone there. She had the surgery on Oct 1 and she is back in school full time and seems like a new child. However, about 5 weeks ago, I woke up in pain and felt weak everywhere...I have extremely bad vertigo. I went to my ENT and he thought it was my eighth nerve in my middle ear that had a virus. After many medications and weeks later, there was still no relief and I have numbness in my fingertips, and have extreme head pain. I had an MRI and it showed 10-11 mm extension and that it appears to be compressing the cervical cord slightly. I just never believed that I would have a Chiari...after what I saw my daughter go through. I gave the images to my daughter's neurosurgeon and will be meeting with him early this week. Any thoughts from anyone on how bad or how good the diagnosis should be? The hospital that did the MRI, they're radiologists did suggest that I needed another MRI to rule out a syrinx. My daughter did not have one. I know that I will need the CINE MRI next...it is just strange, they were looking for tumors or signs of a stroke and they found this. I think that I am still in shock
If your symptoms are severe, then it is severe; if your symptoms are mild, then it is mild.
I don't believe that herniation is an indicator of severity of symptoms or seriousness. Chiari is serious condition...maybe not life-threatening. It is sometimes more serious than others, but it is not something that you want to ignore. You will need to find a doctor that specializes in Chiari.
Hi Daisy, Youngwife is right, the herniation is one aspect that the NS will look at in addition to ur symptoms.....and if the is a CSF blockage, that's the most important one....also if u have a blockage it can lead to paralasis and it caould mean perm damage....there is no cure for chiari, only treatments to help lessen the symptoms.
I hope u continue to post here, it's a great place to vent and get much needed support!!
A 10 or 11mm herniation is pretty large. The size of the herniation isn't the only symptom that the neurosurgeon or neurologist will consider, but it is a very important one.
At around 8mm the tonsils can go into the spine and can start blocking the flow of spinal fluid (syringomyelia). At 11mm I would be surprised if you DON'T have a syrinx. Plus you mention you are having numbness in your fingers - sign of a blockage.
Chiari Malformations are congenital and there is evidence saying it's also congenital (such as you and your daughter). It tends to show up in around 14% of people in the same family. If you have other children or siblings, you might consider having them checked also.
Try not to worry too much. You are doing what you can right now. Try not to do to much straining -heavy lifting, etc. Keep a notebook of any symptoms you have - and any questions you have. Take it with you to your Doctor and write down his answers so you can come look them up online.
Are you happy with you daughter's Neurosurgeon? Is he a pediatrics surgeon or adult?
My herniation is 9.4 mm and I don't have a syrinx, but I was told without the surgery it was only a matter of time before I got one. My herniation is pretty fat so there is significant blockage but I was told I could have the surgery, if I wanted to. Meaning if my symptoms are so bad that I don't want to live with them the way they are then I should have the surgery, which I am going to. I was told if I had a syrinx then the surgery would be a must...
Monitor your symptoms, mine have come on pretty quick. Just last week I didn't have really any neck pain, now I do. When I drive and turn my head around it aches. Before I could sing, now my neck will hurt in the back and the front and my jaw will get really tired...
I have a 10mm herniation. After 2yrs of...tests finally someone gave me this diagnosis but my doctor claims that all my sysmptoms cannot be explained with just chiari malformation. I have blurred vision,numbness and tingling to my extremeties (fingertips & feet) the worse headaches, dizziness and also suffer from sleep apnea. it seems i fit the profile perfectly. I'm glad i logged on to this forum because at least I know of you all who have the same symptoms and I learned something new.My doctor states that type 1 is not a serious condition and that it doenst cause symptoms...BUT I know that it does.
The reason they can not use chiari to explain all ur symptoms is because u r not being seen by a chiari expert!!...U need to find one...ASAP's web site or TCI in NY are two really good places for info along with the health pages here on med help.Plus we have some really well informed members here!!!
U can find NS in TX that r familiaar with chiari, but I am not sure there r specialists there.
Most with chiari find they need to travel to get to a specialist.
Chiari 1 can go yrs with out symptoms....were u checked for CSF blockage?Did they check for a syrinx?
Chiari 0 has no herniation and can cause just as much as a large herniation.
Yes, THey did an MRI of my neck as well and it shows that at the C5/C6 level there is a left parecentral annular tear with disc extrusion. There is also left-sided neural foraminal narrowing at this level. There is no syrnix. HOwever, I do not know if the spinal fluid is blocked because my NS did not do the CINE MRI.
I feel so bad for you because your symptoms progressed to leave you paralyzed in your hand and leg. That is just horrible.
I am pleased with my daughter's NS...is there a website that I could see if he is considered a "Chairi Specialist"? Take care, Daisy
Can any of you tell me? The headaches you have, do they feel like they are in the back of your head from near your neck up, but within your skull? OMG. Does that make sense to anyone? I'm curious because I also have headaches on most days. Sometimes severe enough for me to go to the ER.
And what kind of neck pain? 4 different instances this year have caused me not to be able to lift my neck from my right shoulder. Each time it lasts longer and takes longer to heal. I have been told that symptom is purely muskuloskeletal and is not related to my Chiari at all. However, I don't believe them. Only because I do not do anything to cause this pain. It's like I wake up and it's there. I doubt I all of the sudden forgot how to sleep in 37 years.
I would say, check and see if ur dr is a chiari specialist. If not, he may not be well informed on it's symptoms. Also, my neck tends to get stiff and sore...diff to turn head, range of motion is limited.like I am wearing a neck brace when I am not.Pain radiates across my shoulders and down my spine.
U may want to start a new thread, since ur questions differ from this one.U will also have a better chance of more replies.
yeah. I'm lost. I know before I posted yesterday I saw some things about the headaches. Today I had trouble finding my posts. Oh well. I'll just read about everyone else's problems. Makes mine not seem so bad.
I went to my neorologist...took 40mins to get there...spent $25 and he pretty much said..."chiari1 generally doesnt cause symptoms...and i think you are confusing them with anxiety." "you need to see the neurosurgeon..he should know more about this" mind you i've almos every symptom listed...down to the numbness in extremeties and blurred vision...I don't know what to tell them anymore. Any suggestions?
The problem is that there arent any here in town or in TX ..I think. I don't know if The neurosurgeon will be able to help me...and I don't even if I'll be able to see one soon..due to the medical plan changes. *sighs*
oh and another thing...the doctor went as far as telling me that most of the people in this forum are probably the ones with bad experiences. in other words "the few" people w/symptoms and then he mentioned something about "what are doctors here for? If we were no use we would be googling everything" =-\
I don't know what to tell u, but just talk to Shane99......he went undx'd and then his grew and had alot of symptoms and was basically rush into surgery and now has some perm damage!!
Drs that feel that way , IMHO r not chiari specialists....and even some chiari specialist may put surgery off, but, and I say BUT.....they would continue to monitor the chiari on a regular basis.
U have to follow ur gut...u know ur body...how do u feel?
I did a little work around the house yesterday, and today feel like I was hit by a Mack truck......I am fine if I sit and do nothing.....is that the quality of life these drs want forthemselves or their family members?.....surgery sooner rather than like Shanes can possibly give us a better chance to enjoy life and living without as much pain and the poss of perm damage.
These drs....get me angry.
I know I need to see a specialist but the problem is I don't have a way to travel or much less the money to do so. =-( I know it's imperative that I find someone to help but it's so hard here in TX. And plus I'm a single mother and it's not easy!
I have a chairimalformation at times I cnt move my whole body as its like lifting heavy weights and the tonsils at my cerebellum are 17mm I have to go bk to my ns in 3months I was wondering I I would be able to get the operation and if you could give me some advice ty
By the time mine was discovered I was in the mid-20 mm herniation. My symptoms and blockage were severe and needed surgical intervention 5 days after diagnosis. By sheer luck both the neurologist I saw and the neurosurgeon were both Chiari specialists, so it was easy for me to put full faith in their plan of action. Now 14 years later I am looking at the possibility of another surgery and will be driven over 1000 miles to the same surgeon if that is the Case. Find a great Chiari specialist that you trust and the process will be so much easier. Best of luck
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