asymptomatic chiari 1.... what to do?

[palmtrees5]

Our 17 year old son was recently diagnosed with a chiari 1 malformation. (A week ago I had never heard of this!)  He fell in gym class... needed stitches under his eyebrow... and a ct scan was done to check for facial fractures...  The good news was no fractures (just a slight concussion), but, that's how they found the chiari.  His tonsils measure 10mm on one side and 13mm on the other.  He has a very very small syrinx at the c6-7....  He has never ever had one symptom. Nothing.  He is a very good athlete. Plays high school hockey and baseball.  We saw one neurosurgeon already.  He thinks the surgery should be done, but he's in no hurry.  He thinks it would be fine to wait until school is out in June.  (Along with monitoring him, of course.  He wants to do another MRI in 3 months.) The Dr. also "thinks" it would be ok for our son to continue to play hockey.  We are hoping to see another neurosurgeon in the next week or two.  We are so overwhelmed.....  If he hadn't fallen, we would know none of this....  Are we blessed to know?  I'm confused!  Has anyone else with NO symptoms had surgery?  Thanks in advance for any information you can help us with!!

[eques33]

Hello, saw your post from last fall, how did everything work out? How is your son doing? We have a similiar situation with our son, found by accident, his is 9/11. Were told ok to do hockey and baseball (he's a catcher and goalie in hockey) . Did your son have surgery? Haven't seen the neurosurgeon in Cincinnati yet, but he won't do a full mri of spine because he doesn't have symptoms!  A bit frustrated and just trying to gather as much info as I can, thanks

[patdeb]

Still trying to get the hang of posting, never been involved in anything like this. I posted a letter to you under my forum topic, I hope you see it.

Thanks,

Pat and Deb

[patdeb]

Your letter sounds as if it was written by us! Our 13 year old son had a seizure 2 weeks ago, and we had ct scan and mri done as a precaution, and they told us he has chiari malformation (7mm). He has no symptoms at all, and he also is a very good athlete in football and baseball. We are meeting with a neurologist after Thanksgiving to go over our options, but we are just so stunned we don't know what to expect or do. From these forums I hope to get the name of a chiari specialist in the ny area, and we'll go from there I guess. Our thoughts and prayers are with you!

[Shane99]

Thank you. I had never heard of Chiari until last April (I had the operation the same month I was dignosed), Since then I've been trying to research it as best I can. Fortunately, I have a sister that's a nurse and I was a Biology Major, so I have a little bit of a heads up on some of the biology and terminology.

My doctor is Dr. Carl Hampf in Nashville Tennessee.

Have you checked with Allegheny General Hospital? I think they have a Chiari Specialist. Be nice if he could save you a long trip. :)

[imjsgirl]

Shane,
I have been reading some posts hoping to get some help, and you seem to know your stuff.  Can I ask you, who is your doc and where are you from - because my biggest problem is finding a doc that takes me seriously.  They keep telling me I am A-symptomatic even though it was my symptoms that made me go into my dr's office begging for an MRI.

Also, I wonder if my insurance is the reason docs don't bother helping me.  I have medical assistance, so I don't think the doc recieves his or her full fee when my insurance pays them, so I don't think they want to help me.

My symptoms are getting so bad I don't even feel safe driving anymore, I have no energy to take care of my family, I am always in pain, I have numbness, memory loss, I can't focus, in general I feel like I am getting dumber, my arms and legs get weaker everyday, I just don't know what to do.  And the worst part is, I have seen a specialist.  Dr. Bejjani, he pretty much shook my hand and showed me the door at the same time.  I spoke to his nurse more than I spoke to him.  He didn't even care about the list of symptoms I had - he just looked at my MRI, asked me how bad my headaches were and told me we would "watch" it.

But I am afraid that if it is let go too long I will develop more problems, what do I do?  Who do I see?  I feel so hopeless and alone.

Please help.

[rozia]

you need to take him to Dr. Frim in Chicago . He is a top Chiari specialist .

[Shane99]

I do have some current health problems, like mild paralysis, balance issues, and some leg/hip/lower-back problems, but they aren't from the surgery. They are from discovering this so late.

I understand what you mean about discovering something so serious all of the sudden. I first heard the word's "Chiari" and "Syrinx" the same day I was told that I needed the surgery. Three weeks later I was under the knife.

I have a large neck (22 inches - that's the back of my head as my avatar/picture beside my name) and had a pretty rough physical therapy, but as long as I keep doing the exersizes than I don't have any problems with range of motion.

[palmtrees5]

Thanks for your post!  Today we got approved from our insurance company to see another NS at Northwestern (downtown Chicago).  I've heard good things about Dr. Hunt Batjer.  I'm waiting for a phone call from his office to set up an appointment.  It's so confusing when my son has no symptoms!!  I know I've said this before, but 8 days ago I had never even heard of Chiari Malformation......  He will be devestated if he has to give up hockey....  He plays baseball too, his REAL passion!  I really hate this!     Shane, did you have any lasting side effects from the surgery?  Did you loose range of motion in your neck?    I like the idea of carrying a notebook with me..... I've already started writing down questions.......

[Shane99]

I understand where you're coming from.

I was in a car wreck about 6 years ago and damaged my shoulder and hand. I have had some issues with arthritis and pains in my shoulder pretty much ever since. But this past Autumn, I started having dizziness/balance issues and bad headaches along with a lot more problems with my shoulder and hand.

So, it's kind of hard for me to say when I first started having symptoms. I could have just attributed Chiari/Syringomyelia symptoms with my wreck issues. But I really started realizing something was really wrong, I suppose last Autumn. But mostly that was headaches and leg problems. I went to my PCP several times, but she said I had high blood pressure. Then around last January, I had a really bad dizzy attack that lasted for a few hours. At that point I knew something was seriously wrong beyond mildly high blood pressure or wreck related issues.

It still wasn't until the end of March that I was sent to a neurologist. He performed some nerve induction tests and sent me for a brain/lower-back MRI. He called me on April 1st and told me to come in right away. I did and he told me that I had Chiari and needed surgery very soon. That's the first time I ever hard the word Chiari or knew that there was anything wrong with my brain at all.

I had the surgery last April also.

A far as side effects and things like that; I'm not a doctor, but I couldn't imagine taking the risk of playing contact sports after this surgery. Yes, the herniation can continue to grow. The operation helps relieve the symptoms and gives the Chiari a place to expand other than into the sponal column. It may not neccesarily growm, but he'll need to have regular MRI's to make sure. As I said earlier, there is no cure for this and it's always possible that it can start growing at anytime. Although we are born with this, blows to the head can aggrivate it. My doctor said it's possible that my car wreck may have kick-started mine into high gear. That's why I suggest not playing contact sports.

I suggest you get a notebook and write down all your concerns and qustions. Take it with you so you don't have to rely on memory while talking to him and can get all the answers you need. Write down his answers and ask him to spell any words you aren't familiar with, because Doctors like using big fancy words :).

You and he should understand that Chiari isn't generally considered a life-threatening condition, but it is a life-altering one. This is congenital and there is no cure. But as long as he takes care of himself and stays aware of his situation, he can live a nice comfortable happy life. However, depending on how his body handles everything, there may be limits to what he can safely do. Everyone's body behaves somewhat differently, but all us Chiarians have similar symptoms.

[palmtrees5]

Thanks to all of you for the information!  Can you tell me when you first developed symptoms and how did they find out you had a chiari?  We are waiting for our insurance company to approve seeing another dr. for a second oppinion....  I keeping thinking of so many questions... If he has the surgery, can the tonsils continue to grow?  then what?  Will the surgery cause him any bad side effects?  Can he play hockey after the surgery?If there are any questions that I should ask the NS would you let me know as well.....  Talk about turning your life around and upside down in less than a week!!!

[Shane99]

I'm in agreement with selmaS and jyojlynn - you need to take him to a Chiari specialist. Most neurosurgeons simply aren't that knowledgable about this.

I don't mean to scare you, and I'm not a health care professional, but it's important to be aware of the situation;

A 13mm herniation is very large (as is 10). The herniations are generally what cause the Syrinx. Most Chiari specialists start talking surgery around 8mm. The main problem, and the reason we are suggesting you do this is, time can be a big factor; Lovemygirls,a woman on these forums, herniation grew from 5mm to 10mm in less than 3 months! If your sons is already that large or larger, June could be dangerous. My herniation was caught at 20mm and I was operated on at my Doctors first opening (in about 3 weeks from discovery) and I still had some possibly permanant complications.

I did have some symptoms, but not for a really long period of time. Last Autumn I started having headaches and some dizziness; by April I had to have surgery. So, it can happen fast. Not always, some people know about it for years - or even decades, but at 17 years old with that large of a herniation, better safe than sorry.

One way or another, I definitely wouldn't keep playing sports.

Something else you need to be aware of; Chiari is not curable. The surgery can help tremendously with symptoms, but it's not a cure. He can get worse and he'll need periodic MRI's from know on to make sure the herniation is expanding again. At least every 2 or 3 years.

[jyojlynn]

Hi and welcome to the site!  I believe this was a blessing in disguise.  Your son's herniation is pretty large, like Selma said, but I am not a medical expert by any means.  At least they have found it!  He could have gone for years without symptoms and then developed a whole list of things that just don't seem to fit together and have to wade from dr. to dr trying to get a diagnosis.  In that way he is very lucky!  I wish your family all the best, and I believe you should get a second opinion as well.  Good luck -

Joy

[selmaS]

I don't know if ur NS is an expert in chiari....but u really need a specialist....I can not imagine saying he can contiune with such a contact sport as hockey!
ur son's herniation is quite large. and he had  a syrinx....
I hope others jump in here and offer their opinion, but I really feel u need to look into a diff dr.

where do u live?....have u checked sites like the chiari institute and ASAP d  o t  o  r  g
u will find morw info there as well as in the health pages to the right of the screen in this forum...scroll down.

please keep us updated after ur next dr appt.

Good luck
Godspeed
"selma"