13 mm chiari 1 malformation

[mace07]

My son is 4 year's old and has been recently diagnosed with a 13 mm chiari malformation type 1.  He has been conplaining of headaches for the past year, which I noticed have increased in frequency.  The pediatric neurologist has referred us to a neurosurgeon.  I have mentioned the drenching night sweats he has as well as the speech delay he has always had and she feels this is not linked.  I, on the other hand feel it is.  I am getting very worried about this and was wondering if anyone else who has this has night sweats and speech problems?  Do you think there is a possibility that they will do surgery?  The headaches are strange, he complains of head pain but then he goes back to playing a few minutes later.  He has only had an MRI done of the brain, it showed that he did not have synrix.  I am not noticing that it is affecting his motor skills yet, but I do notice he falls alot, but this could be from being a very active 4 yr old boy.  Any insight on this situation ?

[samsam5mom]

Please keep me updated. I think about u and your son and I hope so much u have a good support system to help u both through everything. I will be thinking about u and your results.

[samsam5mom]

Be prepared everything could go really fast from here on out! It did for us. Once they did mri's they found syrinxs which was part of why they wanted surgery so soon after. It has been 7 weeks today since he had his surgery. For awhile everything was great...then 2 weeks ago he had his first headache then another....since he has had good days and bad days. Like before!!! I guess I thought this would make them stop. I dont know what to think. Talked with his nurse and she made it seem like nothing to be concerned about so we just go day to day hoping for the best. Have follow up mri's scheduled for april 9th.

[mace07]

neurosurgeon has report from radiologist. says she has to speak to radiologist and will speak to me after. Kinda concerned

[mace07]

Hi, We went to children's Hospital in New Orleans and really like it there.  We had his MRI last Fri 2/13/15.  They slipped him in so his MRI was not until 4 pm, it was not fun fasting a 4yr old for that long.  However I'm glad we did it.  I'm awaiting results now from the Dr. they have them but would not release them, said she would contact me when she finished hospital rounds.  I sure hope she calls today. How is your son doing?

[samsam5mom]

How did the dr appt go? Just thinking about u hoping u the best

[mace07]

Thank you for your concern.  We saw a neurosurgeon yesterday, he said he needs an MRI of the spine, which I figured.  He will not know until he gets those results if surgery is the route he recommends at this time.  However, we go to Children's in New Orleans on Feb 3.  I have a feeling we will be in good hands there, I had made the appt ahead of time with them because I knew I would want second opinion regardless.  They will probably do scan there and take over his care.  I do notice the headaches are much more frequent and a few other things that may be realted.  Very anxious to go to that appointment as well as get the scan done.  I'm glad to hear your child is doing well. I will update as soon as I know more. Thanks again ;)

[samsam5mom]

I was talking to my husband and he told me to tell u once they decide to do surgery everything goes really fast. I hope everything is going well for u and your son! Sams surgery was almost 4 weeks ago and he is getting better everyday. Again I do not regret it! He has another mri 3 months after surgery so I will definitely let u know what they say. If syrinxs got smaller? I hope to god they did! Good luck please keep me updated I think about u and your son a lot!

[samsam5mom]

The Neuro we see is dr bodensteiner. The ped ns is dr wetjen. They have both been great so far....it wasmy sons ENT that referred us too. Dr wetjen is very informed on chiari has written papers. I couldn't afford to travel any farther then that but I do believe in them 100%! My son wants to be in wrestling more then anything but as a mom I am scared! Im glad I didnt let him this year! Maybe next year??? They said he won't have any restrictions but I dont know if I can believe that yet.... it was a major surgery!! I agree with u.....keep pushing dont let them blow u off. There are tons of good drs but alot who are not! I would recommend his drs... I had a couple issues but nothing bad. They did their job AND listened to me!

[mace07]

If anyone has any recommendations of pediatric neurologist and neurosurgeons please let me know, I would greatly appreciate it.

[mace07]

What pediatric neurosurgeon do you recommend? I saw that yall went to the Mayo Clinic.  Any suggestions.  Dr. have got to start listening to a mother's intution more, ot everything is textbook

[mace07]

Thanks so much.  His ped neurologist didn't think she would find anything on the MRI, wayto over confident. She said it was just migraines and to put him on amitryptiline, but being a nurse and knowing about the medication, I wasn't comfortable with it.  So, I didn't give him any med other than tylenol.  I do realize that if they don't remove it we will have to come up with something to control the headaches.  i'm sure I won't be comfortable using any of the medications at his age. Once I find the neurosurgeon, I will have them refer me to a ped neuro.  I'm just not satisfied with mine.  If it wouldn't have been for his ENT, I'm not sure the scan would have even gotten performed.  He is not showing any real motor skill problems as I can tell, other than some clumsiness.  He plays basketball and he is looking foward to playing football like his big brother next season.  They start playing at age 5 here.  I'm not sure if he will be able to, it will break his heart.  I know that seems like a minor thing but its all stuff you think about when you realize what could happen.  I'm just hoping that we fall in good hands of care. Have you ever heard of the Chiari Institue? I think its located in New York.

[samsam5mom]

I forgot to tell u he had first mri done in end of august where they told me everything was normal. When mayo dr looked at it in end of Sept he said herniation was 8 mms when they did second one two months later it was up to 10.2 mms. Things change fast!!! Find that one dr who is willing to listen! Wishing u the best and remember if I can do anything just ask!

[samsam5mom]

Research and find a chiari dr....they didnt listen to me right away either but keep pushing. They made sam try 2 medicines. The last one with the side effects was amtriptyline and everything I read said kids shouldn't be on it but I had jumped throuh every other hoop so I did that one too until he got crazy side effects. At that point I called the dr and asked can we please do the mri sooner this is not helping. When they did the cine mri and other lower mri things went so scary fast! But like I told u now after the fact I am so glad we did it. The 5 days in the hospital was terrible....it took him 2-3 days until he stopped looking at us like we were enemy's. The ns said it was an easy surgury.....not so!! It was very painful. And to watch your child go through it is horrible. But it has almost been 3 weeks and he is my happy littlw boy again and thats all I want! Some days I think wow he is speaking so much better some days I can't understand anything. From what I can tell children bounce back so much easier from the surgery. As hard as this is as a mom I just really wonder what its like for them....please let me know if anything I can do to help u!!!

[mace07]

I just saw your reply, thanks.  I'm thinking of going to Texas Children's with him.  I think they are experienced with Chiari.  It would have made sense to me for the Ped neurologist to order the additional MRI and have the results for when we go see the pediatric neurosurgeon. It's such a long drawn out process.  Exspecially with him showing some symptoms, you would think they would check this out pretty quickily.  

[mace07]

Thanks for the reply.  Yes, I'm stating to get more and more worried.  I'm a nurse and familiar with medications and I really do not want to put him on anything strong for management of headsches, side effects are scary and not to mention long term side effects from some of the suggested medications.  They have only done a scan of the brain.  Shouldn't they do a scan of the spinal as well?  I'm wondering if we will be facing neurosurgery or not.  I am from Louisiana and we are to see a ped neurosx in Baton rouge, then another for a second opinion with children's in New Orleans.  I'm even strongly considering getting a third opinion from Texas Children', I hear they are very experienced with Chiari there.

[samsam5mom]

I have a 5 yr old little boy who also complained of headaches always in the back of his head. Sometimes they would make him stop what he was doing and lay down sometime a few mins later he was playing. I knew deep down something was wrong I pushed for over a year...they made me do everything from c.t. scans to allergy testing all was normal. They sent us to the u of m and did mri said it wad normal just put him on medicine once a day for headaches. Finally I had one dr who I went to crying telling them something is wrong with my baby and no one can tell me what it is. He referred me to mayo clinic in rochester mn where we saw a neurologist very nice very informative. He told us sam does have chiari and couldn't believe they didnt find out sooner. He put him on a new medication. He then sent us to pain clinic where he wanted sam to get a shot in his neck that dr said no it was too painful for little guy. So tryed medicine for couple more weeks then started to get weird side effects. They said they were going to do cine flow and another mri 3 months after original appt but I pushed up to 2 months. Went and did it took 4 hours met with dr later that day told us he needed to have surgery sooner then later. His flow was very restricted and he had 2 big syrinxs and lower a chain of smaller ones. He wanted us to meet neurosurgeon that week we couldn't until following week and not even 2 weeks latrr they were doing surgery. His decompression was december 29th.  So far he is doing good. It was the scariest thing I have ever been through but after the fact I think it was the best thing I could of ever done. Keep pushing u know your child and u know best of something is off. I forgot sam also has been delayed in speech. I had him evaluated at 3 yrs old and he has been in speech twice a week since. I too believe they go together but the drs tell me they dont know.......and my son is also clumsy I too debated if its just normal kid stuff but they all go together if u ask me......BUT I AM NOT A DR!!!!! If I can help at all let me know. Like I said I know how scary it can be.

[selmaS]

  Hi and welcome to the Chiari forum.

  Night sweats and delays in any area can be related to Chiari.....and a brain MRI will not rule out a syrinx as they can form anywhere in the spine so a cervical, thoracic and lumbar spine MRI are needed as well as a CINE MRI to see if he has a CSF obstruction.

Keep in mind many with Chiari may have other related conditions which can also have symptoms similar to those listed for Chiari....

Not until you know if she has a CSF obstruction will you know if surgery is an option....not everyone with Chiari is a surgical candidate since surgery is done to restore CSF flow, so if there is no obstruction surgery will not help.

As my Chiari progressed with more CSF flow obstruction I was falling more as well...mind you I was in my late 40's at the time....

You will want to educate yourself on ALL the related conditions and research Drs to find a true Chiari specialist .....not all NS's are the best suited for this condition so check them out , see a few and go with whom you feel is best for your child.....