Okay, I Have Never Posted Any Thing, Dont Know If This Will Work But Here Goes. I Can Only Hope A Neurologist Reads It. My Son 19 Had Surgery 1 Year Ago For Chiari Malformation And Syringomyelia. It Looked Like The Surgery Went Great. But He Had Another Mri And His Brain Stem Has A Kink In It And It Did Not Have One Before The Surgery. The Surgeon Said It Is Not A Problem, But I Am Worried That It Is, Maybe He Did Not Want To Scare Me?? Does Any One Out There Know Anything About This Sort Of Occurrance After A Chiari Surgery?? I can be contacted via this forum. I Just Got This Sick Feeling That I Thought I Woulf Go On Line And See If Any One Had Any Answers. Instead Of The Stem Of His Brain Having A Smoothe Slope It Has A Kink Now. Thanks For Listening Patty!

Hi there Cowpatty, and welcome to NeuroTalk. I just thought I'd copy my welcome over to here incase it gets lost in the Social Forum.

Don't worry about your how you post, you're doing just fine! I'm pleased that your son's surgery went well, but as a mother, you have every right to be concerned.

I see Av8rgirl has already given you the link to the site, so hopefully you'll find some others who are more up to date on the topic than I am.

I hope you get the answers that you're looking for.

what link I dont see one??? I wouldnt worry its probably just some scar tissue .

hi razzle...these 2 posts were copied over from the welcome forum..that's were the link to this forum was.

Cowpatty,

As a mom, my thoughts are a mothers instinct can not be ignored. To ease your mind you have every right to seek a second opinion. All the best Chiari resource links have been posted by the super moderator under useful links or useful sites....sorry can't remember exactly. It is at the top of the post section.

Taking this route will bring peace of mind, which is priceless!
Blessings,
AzSyringoChiari

Like the AZ said, I'd want another opinion. And I'd want to follow up with more MRIs. Maybe in time that kink will straighten out.

I can't say - I'm not a dr - what is up with your son. But one thing I can say is right now it is as important what symptoms he has as what any scan or test shows. Please keep track of that. It can help his doc figure out what's going on.

Anything that happens within the brain, spine or nerves can produce symptoms. And for me, I worry more about how it affects me symptom wise than how scary it looks in the films.

Hope that helps.

Dear Patty, This is so Eerie.My son at age 19 had brain decompression surgery(removed skull bone)had good MRI 1 year later,next year MRI found kink in brain stem.I am leaving for Dr. appt in a few minutes.All we know so far is Nuer.M.D. told us he may have to have fusion surgery,but he also said it would be terrible.I hope this letter finds your son doing well.My prayers are with you.

Hi..I practice in neurology and specialize in headaches. My doctor (I am a PA) is a neuroimaging specialist. We see CM alot and things can change after decompression surgery in terms of the brainstem and cerebellum moving a bit. Remember that a piece of bone was removed and this changes the pressure in the area.

IF your son has no complaints right now (no headaches, no trouble walking or moving around) I wouldn't worry about the results of the MRI. You would be surprised at the things we see in imaging! If he is having symptoms then by all means ask for a second opinion.

Good luck
Mary Kay

on june 23rd 2009 my son was admitted to addenbrookes hospital cambridge uk for decompression surgery..on the 24th the operation took place and as far as we were concerned all went went...but the next day my son developed breathing probs and was rushed in to neuro critical care...where he was sedated and tubed....after 3 atempts of trying to get the tube out ..they performed a trachoeostomy..a few weeks along the line..he had a lumber puncture and the the pressure was high...before they got him to surgery he had a fit ..unbeknown at the time this had kinked his brain stem...a drain was inserted and a MRI revealed the drain was in the right place but it also revealed the kinked brain stem. and in time this was removed and we were given the news my son was NOT going to recover...But he did...slowly from no movement at all to slight flicker of his eyelashes but my son was alive...the kink in his brain stem has affected his breathing swallowing coughing and gagging reflexes..also he retains a high level of co2.....he has been in hospital for one year and one month so far and we are awaitng rehab...but are fighting for funding to get him there as he is such an unusual case there is no nursing staff to care for him...hence we are in HDU...our hope is to have him walking again and off the oxygen and with intensive rehab getiing him to a near normal life again.....
i'm interested to see if there are anymore adults with a kinked brain stem and also any doctors who could have any input in my sons case...also from anyone else who have had a chiari....
best wishes to all
amanda.


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Hello COWPATTY. I had Chiari decompression surgery in 2006. I had a kink in my brainstem as well. I had something called a Basilar Invagination. This is a rare condition but sometimes found along with a chiari malformation. It is when a bone called the Odontoid Process, the bone your head pivots on, or cervical vertebrae 2, is pointed in the wrong direction, causing the brainstem to kink. The pressure from the cerebellum pressing on the brain stem will cause a kink too. I hope this information helps, and it may be a worthy thing to ask your doctor. I hope all goes well for you.