Chiari 1 malformation

[Cathie9696]

Is their such thing as mild chiari malformation.  my husbands MRI just came back and said he has right sided assymetrical chiari malformation 7mm below.  His Dr. does not seem to concern however his symptoms (constand ringing in right ear, weakness in limbs, shorterm memory loss, hands swelling, dizziness etc.) have all come about  withing the last two months but slowing coming togeather over the past two years and progressively getting worse.  Whata do I do.

[Rahe28]

Hi .I understand where you are coming from with the too much knowledge thing, however....not in the case of CHIARI. All TOO MANT DR'S  pretend and give you the idea that they are well informed on it, when in fact they are not. I tell you this from experience. I saw a NS who originally gave me the false idea that he was well informed, and I was so anxious to go with my DH and father to show them who I found...only to find out he really knew alot less than myself. Wow...and that was at my surgery consult. Everyone here told me to beware and to learn as much as possible because with chiari you have to be your own advocate, or your childs in this case. It really is sad the amount of Dr s (NS's) who will tell you that your child needs surgery just for the money of it. What I am trying to say is you can't learn too much with Chiari and it's related conditions and a specialist is so important and really makes a world of difference, especially with a child. You need to be educated so much because that is the only way you will know if the NS really knows his stuff.  Any NS can perform the surgery, but the level of knowledhe required to truely treat someone with it is extensive. In my case....my MRI did not show that my tonsils were actually wrapped around my brainstem, making my surgery even more risky than a normal PFD. Because I saw a specialist and didn't rush , thanks to the advice from people here....my NS was able to handle this complication....which was a huge one !!! Just make sure and learn as much as possible...and don't put off his symptoms as no big deal.I am sure you only have his best interest at heart, he is your son. So many of us learn much later in life that things we thought were normal like our head rushing pain from bending over was normal. Because we had never known any diffferent. When I found out I had chiari and started to do the research I couldn't believe that I had lived my whole life with symptoms and didn't know because you thinks it is normal as a child. Ask as many questions as you can, and make sure the NS spends time with you. A great NS, is one who will take their time ...even if the appt. runs 45 minutes to an hour. My first appt with my NS was at least 45 minutes and he event took the time to explain to my kids one by one in their own age range what was going on and what the surgery was and what it would do. Best wishes to you and your son, and please remember that in this case you MUST learn and have knowledge.

[buckeye4]

Thank you for your support. I'm now realizing what can be in store for us. Its so wierd because right now he seems just fine. Since the MRI and the Dr. put him on antibiotics for a sinus infect. he seems so much better. However a few here and there headaches but not like before. Its almost a false since that everything is fine and there is no problem. That's why its hard to wrap my head around this but i just don't want to caught off guard with what the dr. may say on Wednesday. i don't want to break down crying. depending on what he says sugery no surgery problem no problem I want to be prepared regardless. However, I am scared because what of what i am learning. I don't want to be one of those people that get on the internet and look things up to invite worry in to my life. You know the saying that to much education can be a henderance. talk to your dr first before you start worring. you know some people tell you not even to look stuff up because you will always get the worse case secnerios. then you will be worring for nothing. I just think learning everything is good but keep in mind that your dr will know whats best for your case.

[Rahe28]

Sorry to hear of your little man. I have a7 year old boy, and it would break my heart to know he was strugling with this. You have the best answers from Selma. as she is our mother hen that knows all ....I don;t mean that sarecastically either. I can't make you feel better excpet to say, we know how this goes and how hard it can be, but Selma is right, seeing achiari specialist is key,. My NS is a pediaatric NS that specializes in Chiari malformations so if you have it, whether adult or child...he will treat you. I am not sure where you are located but he is an amazing and understanding, and compassionate NS....and that is rare to find. Most of them are prettty cut and dry. Agfain, sorry for the reason you are here, but happy to welcome you and your little man to our community :)
Rahe

[selmaS]

  Keep in mind a good NS is not always the best choice, u want a NS that specializes in Chiari...not a NS that does a few chiari surgeries...it does make a huge difference.

Sorry, with Chiari it is life altering, and physical things life football, baseball and soccer may be too much for those with this condition, and best to find something else...surgery is not a fix or a cure, if the Dr says it is run the other way.

A syrinx once formed is there and may continue to grow and cause more disruptions, if left untreated for too long a syrinx can cause perm nerve damage.

Having the surgery should allow the syrinx to shrink....some may shrink faster then others, some may shrink only to return later.....

I understand ur concerns and what u want ur child to experience but, I am sure he has had pain while playing and thinks it is "normal".....

  I pray all goes well and u get the answers u need.

[buckeye4]

I was afraid that surgery could be a possiblity. we are seeing the chief of pediatric neuro surgey. I haven't looked up what the surgery details but I will.  We tried to keep an open mind about this but I had to get the MRI file to take with us and looked at the report. I do have some medical back ground and could tell with the wording that it may not be just an incidental finding. I just don't want to be caught off guard. One more question is the syrnx always present or does it come and go? he has always been my healthy little baseball player. I just want him to be able to return to what he loves with no complications.

Cristy

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little guy is having to deal with this.

With a syrinx, surgery is most likely an option to be offered as surgery is done to restore CSF flow and help avoid the formation of a syrinx, he has one, so surgery will help the progression of it.

  U want to make sure the Dr is a true chiari specialist....and will they do a full posterior fossa decompression with lamenectomy, and duraplasty.

Make sure they test him for sleep apnea, disk issues, tethered cord, ehlers-danlos....these r all important to know b4 surgery as it can affect how he  feels and heals post op.

We do have a list of questions in the Health Pages for the NS....http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

Keep in mind- these questions were all compiled by adults or teens from this site....but I am sure they can be used for ur DS as well......

Keep asking questions and do post an update about how ur visit goes on Weds.