general questions

[pocko]

I was just diagnosed with a Chiari 1 Malformation of 7mm, my Dr said it was mild and nothing to worry about. However over the past few years I noticed my hands and feet had lost sensation in feeling and temperature. I have high blood pressure that cant be controlled and headaches. I suffer from the occasional ringing in the ears and upper back pain. I have some other syptoms like poor balance and the numbness in my hands is worse and is tingling, a bit like its fallen asleep but hasnt.

Do these symptons sound like that of chiari malformation?

What is the largest descent anyone has heard of or have?

Does the chiari grow as you get older.

[dpulum]

My herniation was huge, over 21mm.  My sister and nephew also have CM, my sister's was actually the smallest of the three of us and her symptoms were the worst, so I don't know that the size of the herniation necessarily dictates severity of symptoms.  I was pretty debiliatated, but my sister ended up with permanent nerve damage in her feet from going so long without treatment. Doctors had treated my sister like she was crazy for years before finding her CM, which ended up causing her permanent impairment.

I agree with the others, it sounds like CM symptoms.  I hope you have luck finding a good doctor who will take it seriously and help you.  Hugs.

Tina

[jessbee82]

No kidding, there is nothing worse then knowing that something is wrong and having to try and convince others that you are not well, need to rest or whatever the case may be.  For me, the last 5 years has been nothing but 'this is an emotional problem' and of course...thats makes me cry! lol.  anyhow, the best doctor for anyone is themselves, your the one in the body and you know when something is wrong.
Thoughts are with you...

[pocko]

thankyou all for your response it has been encouraging, and I suppose like a lot of others its good to see some light at the end of the tunnel. For about 5 years now not knowing the cause and having people think your crazy cause the sypmtoms are weird its good to have something to blame for it all

thanks again

[Givenstrength]

I agree with everyone also.

Like Selma said the size/descent isn't really the factor... Mine is 16mm and although my symptoms along with the overcrowding and blockage is severe enough for surgery I have read that some with a lot less than my 16mm like even 5mm has some problems/symptoms worse than me

I pray everything will work out for you and that you can get into a specialist!

[dkdean]

Those all sound like CM symptoms....I ditto everyone--finding a Neurosurgeon who is a Chiari expert is the best move.  I am forever thankful that this group gave me that info and I followed it!!!!!!

[lu7997]

Hello  and yes they all sound very familiar to my self and most of the others I hav read about and talked to. And for the record I think docs generally think chiari is mild.  

Find a chiari speacialist if u don't have one. Save yourself running into the wall and jump right over it.    

I do hope u find what u need and u don't suffer too much longer

~Ångela~

[selmaS]

Hi and welcome to the chiari forum.

Chiari herniations can grow...not always with age, but can from the activities we participate in or falls...etc....

Ur symptoms do sound like chiari....and u should find a NS that is a true chiari specialist,We do have a thread here with names of drs u can research.

The size of herniation or descent is not the more important aspect of chiari...CSF blockage and overcrowding along with symptoms.

U will also want o know if u have related conditions like a syrinx, tethered cord etc.....a chiari dr will screen u for these.

"selma"