Recent Discovered...

[Knibby]

Hi everyone,

After taking part in a study within my university which involved an MRI scan I was subsequently told that I had a Chiari 1 malformation. After searching on the internet I found a lot of conflicting information. I don't think I've had any symptoms I had quite a severe headache a few weeks ago but this has since went away and I feel it was more to do with a cold I had. I have suffered from migraines in the past which have occurred alongside numbness of the hand is this a possible symptom?

I'm just unsure of what to do...I've made an appointment at the hospital but I'm unsure what that will involve. And with me not currently having any (apparent) symptoms is this likely to change? I'm just quite confused at the moment and would appreciate anyone who is able to answer my questions.

Thanks,
Knibby

[selmaS]

  Hi and welcome to the Chiari forum.

In addition to the wonderful info the other members have offer I wanted to  add...that Chiari symptoms can cycle and flare, so when u r sick with a cold, u could indeed have a flare, and apparent symptoms can subside so that u do not notice them...but, that does not always mean u r in the clear...as it was stated, if u r not affected by it u will not want to have surgery, but it can be that u just do not consider certain sensations symptoms bcuz u have had them, ur whole life....

We adapt to how we feel and consider it "normal" when in fact it is not....

SO do  have more testing to see how ur chiari is affecting ur overall health...ie- do u have a syrinx, which can cause u to either have pain, or numb u to pain....check for related conditions like tethered cord, ICP, POTS, ehlers-danlos, and most important to see if u have a CSF obstruction...this more then symptoms or how u feel affected will direct how to proceed....

U will want a true Chiari specialist so educate urself on what to expect so u will know one...and see a few compare them and the info u receive so u can compare and know which Dr is right for u,

The tingling u mention is one I had on and off for yrs including Head aches and loss of balance, then it was my depth perception...so symptoms can all of a sudden worsen...u may have a trigger like stress or an injury from a  fall or MVA, or u may cough or sneeze hard and that may do it...or u may not see a change ....we r all so different...but even if u do not feel like it is affecting u, at least go and get more testing and look at the CSF flow.

[Knibby]

Thank you for the information. Well I've already been referred to the hospital and should receive an appointment within the next 10 days. Not really sure what that appointment will consist of considering I haven't had many symptoms (although now I think back on it I can remember instances which may be attributed to this but I'm not sure if this is just me applying things which may not be related to the Chiari). But I'm gathering from what I've read that it may be cognitive and motor tests. Hopefully not another MRI I've developed quite a fear of them since taking part in the study which found the Chiari, I found it very claustrophobic but if it has to be done it has to be done.

Just like to say thanks to both of you for the replies. I'll be sure to let you know how it goes.

Thank you,
Knibby

[RheaAnn]

I'm not sure if the doctor will want you tested for other things, but the surgery is for people who have symptoms that majorly affect them, or have other issues with Chiari.  If there is obstruction in the CSF flow, that causes an issue, or if you develop a syrinx.  Tethered cord is another issue.  The way they check for these things is by a complete spinal MRI (syrinx and tethered cord) and a CINE MRI for flow.  My NS could tell I had an obstruction without having a CINE done.  Most people have symptoms when they have these things going on, too, but NOT everyone does have symptoms!  

Just information!  You and your doctor can decide if you want the testing.  If everything checks out ok, you may feel better about not having any treatment.  Or you can keep this info if circumstances should change and you develop symptoms.

Wish you the best!

[Knibby]

Thank you very much for taking the time to answer my somewhat confusing questions with so much detail. The information you've provided is very useful. I guess I'm just going to have to wait and see what happens. Like you said, at least I know I have this and I'm familiar with what to look out for. The hospital in my area does have some specialists in Chiari or so the website says so hopefully I'll be able to be referred to them if any severe issues arise.

Thank you very much again,
Knibby.

[zygy2]

Hello!  Hopefully you will find a good Dr.  that will really be able to answer all your questions!  From everything I have heard and read through my personal experience with this, we can have it and not have issues and in that case you want to avoid this surgery!  It sounds like there are plenty of people out there with this that don't even know it.  I had bad headaches all my life but not any "weird" stuff until I had a concussion and then  things kept getting worse so I started looking for help and that was when I  found my Chiari 1.  Without that accident I probably would have never known.  I would avoid roller coasters and such things if I were you, I never understood why they made me feel so badly but I  always remember having problems with them.  I can say that my headaches have improved greatly but I had quite an adventure with my Chiari surgeries, things did not go well for me and it ended up three years and 9 surgeries so I really feel like if you don't need to do this for serious issues than I would not do it!  Good to know though so that if you have a head injury they will know that this is already an issue!  Head injury can cause further herniation and that can cause many different issues.  Just reading on this site you will see lots of different complaints so it can get very confusing.  Chiari does not have enough "information" out there yet and I am really not sure they know exactly what it does.  There are lots of things that chiari patients seem to have in common and yet your NS or NL will never mention these things!  The NS and NS's out there will say they do this all the time but you really want someone that knows something about Chiari!  The true specialists are harder to find.  As for if things will change for you, I think you just will not know.  I am sure that is hard to hear.  After my concussion I started to get "chiari cough headaches" which are strange head pains that last 5-10 seconds but I described them as someone dropping a car on my head!  Over time they happened all time and then I had to find help, not everyone gets these pains, everyone in here seems to have such different stories.  I went on a roller coaster because I knew something was wrong and couldn't seem to find understanding help, after that roller coaster I knew something was really wrong!  I had severe head pain for days and could barely walk when I got off the ride the pains were so bad.  Then I knew I needed to find answers.  My best advice :) Avoid head trauma :) Probably easier said than done but that is the best you can do :)  Good luck finding answers and if you have any special questions, feel free to ask.  I jump on here from time to time to see what is happening. Really sorry you have to deal with the stress of knowing your head has this!   -Zygy