stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

there is a recently new description of chiari zero.....because they r finding that in some cases the amount of herniation does not mean there r 'nt ne symptoms.

when was ur last MRI?...I have seen that some on here had very little herniations and with an onset of symptoms had another MRI to find it grew!!

Good luck
Godspeed
"selma"

[lor124]

Selma Ive read alot about Chiari 0. I know I have had almost every one of the typical symptoms since I was a kid and they have recently gotten worse. My last MRI was 3 months ago and the results showed low lying cerebral tonsils but it didn't say how low. I was told less than 3mm. The neurosurgeon said she didn't want to do surgery on a "normal" brain so she sent me to a headache specialist to rule out migraines. They were able to lessen the pain with topomax 25mg but all the neuro stuff didn't go away/ She says it deffinately is Chiari and suggested I go back to the neurosurgeon to talk about whats next. I think after reading some of these notes I 'm going to make an apointment with Dr. Frim. My sis has been in convo with you ..Rosebud3 thanks for your support!!!

[selmaS]

did u have a cine MRI?...to check for a syrinx?....also did they check for tethered cord?
I too have had symptoms since I was a child.....the brain pain from straining,laughing.....even hanging upside down.....they just sent me to a phyc....wanted to medicate me for anxiety......my most recent flare up of  symptoms started in May '07 I fell....no reason....but I sprained my left ankle and tore the minescus(sp?) so that required two surgeries...since then my balance is off, I am stressed to the max, I have tremors in my hands and numbness in my extremidies.....

Dr Frimm is very good......he is with a pediatric hosp, but many of the chiari drs do take care of adults as well....u'll be in very good hands.
how is ur sister doing? did she have her appointment?
say HI to Steve for me.

Good luck
Godspeed
"selma"

[jyojlynn]

Hi!  I am new to this forum, but so glad to have found it!  I feel like I have finally found others who understand what it is to go through the constant headaches, the pain, the numbness in my hands and feet, etc.  Mine has been getting progressively worse over the past 18 months or so.  I now slur my words, have been loosing my memory and stumbling alot.  I have been having a terrible time getting a diagnosis.  I have had this going on for 30 years - daily headaches for 30 years - and all I get is that I must be stressing myself out.  I KNOW that there is something physically wrong with me, but I can't get a doctor to say it.  Then I heard about Chiari and I felt like it was a gift from God.  My first appt. with a NS is on Nov 24 and I pray he finds something - anything.  I just don't know what to do if he treats me like the Neurologist have treated me.  Anyway - sorry to go on.  It is just so great to read messages from other people like me and know I am not alone - thank you.

[selmaS]

U may get the same thing u got from the NL.....because not all NS r specialists for chiari....where do u live?.....there are many chiari specialist out there, but depending on where u live u may need to travel.....I traveled an hour to hear the same thing as I got locally so I am going to where I know the experts r!!....chiari being congential means u had this all ur life and for 30 yrs of it u have suffered......sometimes it can be normal life that can cause CM to suddenly start to worsen......Have u had a dx of chiari , or suspect it's chiari?....u need an MRI and then u need to know if u have a CSF blockage...CINE MRI will let the dr know if there is ne thing other than chiaari going on.

Keep us posted
Good luck
Godspeed
"selma"

[jyojlynn]

Hi Selma!  Thanks for all of the words of wisdom.  The NS I am going to actually does specialize in Chiari and he was recommended in a really weird way to me through my husbands therapists because his daughter has Chiari.  I have actually had a few MRI's but no one has ever looked for this.  The very first one I had the report said one small sentence that I had a Stage I Malformation, but that was never repeated again.  Since I didn't know what that mean, and my reg dr didn't know, we didn't think it meant anything.  That was 8 years ago and since then I have not even heard the word Chiari at all.  That is why I am praying this will be a positive diagonosis for me.  I just had another MRI with contrast on Tues, so hopefully it will show up this time.  By the way, I live in a small town in Wa state, so I will be driving almost 4 hours to see this dr.  I am just grateful for this site.  I feel like I have found a whole group of people who truly understand what it feels like everyday.  Thanks.