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Chiari 1

Hi!  New to this forum.  First timer!  I was diagnosed with Chiari 1 9mm back in Sept. 2010.  I've been suffering from unusual pain in the back of the head for 10+ years.  Headaches are the norm for me.  When I started to really complain, an MRI of the brain was done.  It showed Chiari.  I've seen a specialist  and he suggests surgery.  I have no syrinx, which is good.  My biggest question is the risk?  He says 90-95% success.  That should make me feel good, right?  The surgery itself is very serious I know and I'm so uneasy about.  However, my quality of life isn't great.  I also have a small brain aneurysm, occipital neuralgia, as well as a frozen shoulder that has a cyst and tear in it, Bells Palsy and recovering from a poss. TIA.  The Bells/TIA just happened in Feb. 2011.  Not sure if the pain in my neck is from my shoulder, the Chiairi or both.  Have a full plate and been on temp disability from work since Nov. 2010.  I'm only 43 and feel horrible.  I went from working out 5 days/wk to all this!!  Unnerving and scary to say the least.  Need insight from someone.  Thank you.  
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620923 tn?1452915648
COMMUNITY LEADER


Hi...just wanted to correct u- u said chiari is rare...I do not believe that, there r way too many of us., it is well informed Drs that is rare !!! lol......


  "selma"
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Avatar universal
Thank you all for your comments.  I so appreciate it!!!  :) I've been living a very lonely world here til now.  The CSF flow was never mentioned or the potential for cerebral ptosis, thanks for that important tid bit!!  I was told the risk of possible "chemically induced meningitis", but that was it.  I don't have a syrinx or tethered cord.  I was told that the dr I went to is indeed a chiari specialist.  However, my gut is talking to me lately, which lead me to this site.  I have to go with my instincts on this one and look for a 2nd and 3rd opinion.  I liked the dr and felt he knew he's stuff, but very quick to say I needed surgery.  You're right about neurologists, they don't even want to acknowlege it.  Famous one liner I keep hearing is "You could have gone your whole life with Chiari and not known you had it".  That's I'm sure true for some.  However, I have the symptomology big time and my MRI certainly speaks for itself.  In my case with my shoulder too, they want to say my neck pain, stiffness and headaches are possibly coming from that in addition to the Chiari.  I'm frustrated!! Chiari is rare and complex for sure and I wish there was a more help out there for us.  The search for answers is grueling and unsettling.  This forum is a great start and gives me new hope.  Thank you all and I'll keep you all posted.  
XO trebmal2 (Christine)
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am sorry to say the % of success ur Dr gave to me indicates that he/she is not a true chiari specialist.And Like Pam said, u want a true chiari specialist...surgery is not a cure a fix a way to be 95% better...it just does not work like that....yes, u can feel better and we all want that. but u can also get worse...u can develop as Pam also stated cerebral ptosis also known as brain slump if the NS is not as experienced and takes out too much bone, or u can develop intra cranial hypertension, or epilepsy, seizures,.....U want to slow progression and the formation of a syrinx.....u want to restore CSF flow if u have a obstruction.....but u also want the benefits to out weight the risks, and there r risks with this surgery.

If ur Dr did not discuss the CSF flow with u, tethered cord, syringomyelia, sleep apnea, Ehlers-Danlos, then u deff want another opinion.
JMHO
"selma"
Helpful - 0
1435895 tn?1304291241
Hello and welcome!  You and I were diagnosed about the same time.  It has been a long journey from then to now.  I will be having surgery as soon as I jump thru a few more hoops for the medical board here.  Like Niki said the best thing you can do is find a Chiari specialist, there is a list here in the forum that other members have used and liked.  I see you are in New York and there is a Chiari Institute in Great Neck.   I think if you decide to have surgery the risk is too great to not have a true specialist do the surgery.  If too much bone is taken out then you can develop a condition called brain slump or ptosis.  If not enough then if could be more surgery for inadequate decompression.  As well as the specialists are going to be aware of possible complications and know what to do if they arise.  

The goal of surgery is to stop progression and hopefully relieve some of the symptoms.  There are no guarantees.  I am not sure what your doctor is basing his success rate on?  I would ask him this question.  Is it partial resolution of symptoms?  Have you had additional tests done to rule out a CSF blockage?  A syrinx?  Tethered Cord?  These are associated conditions that you should know about.  The size of the herniation is not important it is absolutely important if there is blockage or crowding that compresses the brain stem.  

It is normal to be afraid of surgery.  I am definitely a little (a lot) unnerved about it to.  I read in an earlier post from one of the members they were told by Dr Bolognese that if they didnt have the surgery they had a 0% chance of getting better, 65% of staying the same, and 35% chance of getting worse.  I dont know about you but I feel I have to get better if possible at least it is hope and without it I have none.  

Again, welcome!  I hope this at least helps.

Pam
Helpful - 0
1372734 tn?1309950237
Hi and welcome to our great friendly and informative little community.

We have some excellent advocates here that are just fantastic and offer a whole heap of information, Im learning fast and have been a member since August 2010.

If you dont have one yet get a good recommended chiari neurosurgeon.  If you dont you will pushed and pulled in all directions, general neurologists just dont get chiari and dont tend to listen.

I will leave all the technical lingo to some of our other members like selma,stormy,pamk5, just to mention a few! sorry girls if I missed any of you out!!!!  you no I love to hear from you all.

niki x x
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