newly diagnosed....advice? TIA

[devin0887]

My husband has recently been diagnosed with chiari malformation. he has been referred to a neurosurgeon. I'm not sure what to expect and we are both shaken. He already has numbness in his arms and legs, sleep apnea, difficultly feeling temperature etc. all has happened in the last nine months. What should I expect? Thanks

[devin0887]

Thanks! Yeah thats how he describes it.. I will keep this all in mind. Thanks again.

[selmaS]

  No worries, that is y we r here : )

Well, I would try to calm ur child instead of ur DH....try to get him onto a diff  activity so their behavior changes and I am sure ur DH will calm down...the problem with this, and I am speaking for myself, that when I would get  upset, I knew it was not reasonable to be upset over what ever it was, but could not control how I reacted at times, I am not giving card Blanche to act however, just saying how it felt at times, and I was aware when I was wrong, it is just scary as u have no idea what is taking over u.....he needs to sort it out and will find a way to control this better....I have developed more patience now then I ever thought possible.

[devin0887]

That sounds like him...What is the best way to deal with that. I try to stay calm and not get upset...because he already is..we have a two year old and that seems to upset him a lot (when he is acting out, even if it is something that normally won't bother him) You are all very helpful....sorry I have a lot of questions..just trying to figure it out.

[selmaS]

  Yes, unfortunately it is...many of us have memory issue, word recall, and yes anger issues can accompany ne condition where u deal with chronic pain....add that to the fact the brain stem gets compressed and it will affect mood as well, many of us find we get overly emotional too....

[devin0887]

Thanks for all the advice. We taking it day to day. He was referred by his neurologist, to the neurosurgeon. Not sure his name but I will definitely be making sure he knows what he's doing. Also my husband is active duty Air Force.
One more question: TIA
I have noticed him having memory problems and temper issues. Is that common?

[selmaS]

  Hi and welcome to the Chiari forum.

Well there is not much more I can add to what has been said by the above 2 posters, they covered it all pretty well.

Know u r not alone, we r here to offer support and info when we can : )

Use the Health Pages here for tips and info on ?'s for the NS and lists of Drs names for u to research.

  Feel free to ask questions

[Momscrap2]

Irislitta is correct.  Please find a neurologist and neurosurgeon who specializes in Chiari.  The convenience if having a local doctor is vastly overshadowed by frustration with doctors that don't understand your husbands condition.  As far as what to expect, with the right medical team you can expect many medical tests to determine not only the extent of the Chiari but also to determine if there are other conditions present that might impact his condition.  Surgery will usually only be recommended when a person has disease progression.  Many times lifestyle modifications can help deal with symptoms and surgery won't be needed.  Please keep in mind that surgery is not a cure for the condition. It may help stop progression of symptoms and alleviate others all together but also may leave you with other symptoms that can be uncomfortable.  Also attitude is so important.  Staying positive, finding the right doctors and paying attention to your body to determine those things that tend to aggravate symptoms will go a long way to help with this condition.  I am post decompression for Chiari 1 with components of chiari 2, Ehlers Danlos, retro flexed odontoid, craniocervical fusion with later removal of that fusion, multiple disc herniations and other significant spinal conditions yet work full time, have 3 kids, hubby, dogs that I groom and walk at leadt an hr for exercise every day.  This condition can be scary and everyone is different but I cannot stress enough the importance of attitude, great doctors and paying attention to symptoms.  Also, for me I know that prayer has played the biggest role in my recovery.  God bless you and good luck.

[irislita]

Getting this diagnose is a shock...but try to calm down.u r taking a right step getting professional help.now what every body will advice u,get a true specialist even if u have to travel.along with chiari one can have related issues.a true specialiat will check the whole spine for a syrinx,the csf (liquid around the brain) flow at least.the hernia if the brain can cause compression of nerves,spinal cord and brain stem...plus obstruct the csf flow.not all patients are surgical candidates.there is help out there...but to not have a chiari runaround that so many had to go thru...go and get a true specialist.i am telling u this as i didnt do it and now after a year get my answers.welcome here...and know this forum is a great source...and u r not alone