New here and a bit scared - ns appt 12/10

Hi to all,
I just found this site today, for which I'm grateful.  My son is 15 and was diagnosed about 6 or so years ago, with Chiari 1.  The doctor at the time said it was "mild" and unless he had symptoms there was no need for treatment at that time.  I believe that was the neurologist. At any rate, he has been active in sports, including football for about the last 5 years. He has played at high school level freshman and sophmore years and just started wrestling about a month or so ago when football season ended. He started having some complaints about back and neck pain and more headaches, fatigue.  Initially it did not occur to me that it could be related....he'd never really shown any symptoms. I called the doctor (the new one I had just changed to and intended to have my son see) and remembered he had previously been diagnosed with this. The doctor ordered an MRI.

He left a message asking me to make an appointment for the results.....never a good sign. So today, my son and I went and got the results. His herniation ( I think that's the correct term) is NOW AT 17 MM! I think it was around a 3 or 5 before if I remember right. The dura is also being compressed, but fluid seems to be flowing okay. He referred us to a neurosurgeon which we will be seeing tomorrow. He also said that of course if that dr recommends surgery he would certainly understand if we wanted a second opinion.  

My mother died about 2 years ago following an aneurysm in her brain- in roughly the same area as the chiari - basilur apex. we both had an MRI following this as she had complications due to a congenital defect in her brain, neither of us have it. I'm scard on so many levels right now and have to hold it together in front of my son. His biggest concern is of course possible surgery, but also whether or not he will be able to play sports again.  They are so important to him and we will talk to the surgeon tomorrow about it.

If you have read this far and are still awake, I thank you! I just needed to express my worries to someone.
I have questions too -
1.  Does anyone know of specialist in my area - just south of Miwaukee, WI. I'm about an hour - hour and half from    
    Chicago and Madison, and about 45 minutes from Milwaukee. I know we have Children's Hospital in Milwaukee,  
    there are several others not too far, such as Lutheran General in Park Ridge IL, University of IL-Chicago, ped. neuro
   unit there as well. Anyone have any info on these??  
2. Does anyone have info or links on children or adults playing sports after chiari or decompression surgery??

Thanks to all in advance. It feels good to be able to at least voice this to someone!!  Sheri

[chadry]

I know how scared you are. My daughter has Chiair also. She was diagnosed a few years ago. She has played softball and the doctors i have taken her to said that softball was OK. The one doctor did say she can play sports as long as it does not bother her but he did say the only sport he does not recommend is wrestling. he said that was a good activity for chiari. She did not care about that though because she is not intp wrestling. When she was yoinger she did alot of karate and in fact was very good at it and earned her black belt. When I think back now and i know what she has I cringe. We actually have an appointment at the end of this month to probably talk about surgery. I have taken her to 2 Chiari specialist who said she would benefit from the surgery but that there was no rush to make the decision. I was not aware until a few days ago that this thing could grow as fast as it does and I am scared about that.
I will give you soemthing to think about though. One of my doctors that i was talking to about my daughter made this comment to me about the surgery. He asked if there was an emergency situation than my daughter would have to be treated at whatever hospital she went to. Would I rather have her get the surgery from a doctor that does not know what they are doing with this condition in a small hospital or would I rather have her get it done but someone who knows what they are doing and it is in a controlled setting and no emergency. Really made me and my husband think about that. It is a very good point.
I am not sure about the sports after surgery since we are not there yet but I am sure if everything gies well he will be back to some kind of normal life.
What does your son feel about his conditon. Does he talk about it with you or does he act like it does not bother him. Is he trying to be tough about it like my daughter. She is going to be 13 very soon and besides her dizzy spells, headaches and she does get fatigued she acts like there is nothing wrong with her. Although she has said she is pretty sure she wants to get the surgery done so she can try and have some kind of normal life.
Good luck and i would really like to hear how your son is doing.
Chadry

[sherimom]

Thanks for your quick and thoughtful response. My son is pretty up in the air at the moment. We just got this yesterday so neither of us has had much time to process this. We see the surgeon this morning at 1130.  At first my son talked about it a little, but then went to his room and went to bed very early.  He will probably be a "tough it out" kid. We talked a little about sports and I told him that if he is not able to play it would feel like a major loss to him, and it would hard, but that he has many talents and will find something else that he will enjoy.  It seemed to help at that time, but it was brief. I'm pretty sure they will say no wrestling and he has just started his season. I just feel so sad for him right now, it has just been such a big part of his life.

It's also scary because of my mother, who died following surgery from an aneurysm. She had an artery that was split in an unusual way and they were unable to keep the blood flowing through there. She subsequently lost her ability to communicate and at then did not regain conciousness. (This was after several surgeries to try and save her) My son was very close to her and it was a hard blow for all of us. I reminded him that this is not the same thing at all.....but it's still scary.

Your doctor made an excellent point and one that I will definately remember through this process.
I will let you know what the surgeon says....it sounds like your daughter is very involved in the decisions that are being made, I think that is the best way to go and I plan to do the same.
Thank you again.   Sherimom

[selmaS]

I believe Dr Frim is in Chicago.....he is well known for chiari.....he specializes in pediatrics but also sees adults.If u google his name u will find more info. I reccommend u research ne dr u go to and make sure he/she is a chiari specialist and u/ur son  r comfortable with him/her.Going forward ask for copies of all MRI's and reports....it makes going to different drs easier.

If I remember correctly I did read a story about a young man 16, that was able to return to sports after surgery....ASAP web site or the TCI web site...both have patient stories on them.I will check to see if I can find it.It also depends on what is going on with ur son,if there is ne damage that could be perm.....unfortunately , most NL and NS even radiologist see chiari as mild and incidental....symptoms do not always indicate the need for surgery....but when symptoms do increase it is an indication that damage could be occurring.From my own experience, I feel that it is diff for kids to say if they have symptoms until they do get bad.This is because, since this is congential how r they to know what is or isn't a symptom?...it appears normal...they have always felt that way.....I myself have had the realization that wow that's a symptom of this?OMG!.....we need to educate our PC drs and our families what this is and learn we need to act b4 the symptoms get worse to prevent serious perm damage. There is no cure for chiari, just treatments......and with the right dr....good results.

I hope u continue to post here, it's a great place to learn from each other and for support!

Good luck
Godspeed
"selma"

[selmaS]

http://www.conquerchiari.org/subs%20only/volume%206/issue%206(1)/GNS%20Ryan%206(1).asp

this is the link to the young man that returned to sports after chiari surgery.

[Shane99]

I don't mean to be a nay-sayer, but I really couldn't imagine playing contact sports after this sort of surgery.

It's not uncommon for Chiari herniations to spontaniously start growing again and there's a strong suggestion that head trauma can "activate" Chiari.

I don't think I would take the risk - I've had the operation and have no intentions of ever having any kind of head trauma again if I can avoid it.

Chiari isn't generally considered a life-threatening condition, but it is a life-changing one.

[sherimom]

Thank you all for your responses. We saw the ns today and I was completely underwhelmed with him- no way would I go to him. But my PC doc also said, before we went to the appt, that it is certainly uderstandable if we want a second opinion and that he would do the same if this was his child ( I love my PC doc!)

So, the ns was thourough, but I just don't feel comfortable with him. Partly due to his number of such suregeries (only 50 over a number of years) they say Practice makes Perfect, and I'm a firm believer in that.

So, my dad contacted the neuro at "UIC who did my mom's surgery and who was wonderful - I felt that he did all that was possible and that she rec'd top notch care. He remembered my mom even though it was two years ago. He agreed to either see us for second opinion, send us to his partner who is pediatric ns, or find a referral for us in our state. Wow!

As for the sports, today was a very difficult day for both of us.  My son and I went to his school and talked to his coaches. He really has enjoyed this season, what he did participate in, and his coaches enjoyed having him there. They were awesome, but it was hard to turn in his gear today......the doc we saw said that people do return to sports and other activities - but we will discuss this with the surgeon we select and see what they say.  
Shayne99- I understand what you are saying too - and I will always worry, especially if the doc gives green light on it - the only reason I would even consider it is because it is such a huge part of his life. It is not worth risking everything, but I will have to see what his doc says. Right now, this is the only bright spot he sees, that he may be able to play sports again.  I just can't take that away from him at this time - I have to take a wait and see approach. I appreciate your input though.....it is helpful to have different view points on this.

So, he goes back tomorrow am for more MRI's, this time of the spine, to rule out additional problems related to this.

I also saw something about the Chiari Institute in Milwaukee WI - I'll post another thread on this, but am wondering if anyone has any experience with them or knows if it is afiliated with the C"I in NY.

Thanks for all of your help - I do feel somewhat releived aboutt this after finding this forum. Thanks a.. !!!

[selmaS]

HI...just so u r not alone ....I've been to 2 NS so far...and am going to TCI in NY next...most NS may be familiar with chiari, but as u said u don't want someone who has only done a couple surgeries over a long period of time when u can have some one that does it all the time!!!

oh r they looking for a syrinx, and tethered cord?

I have heard of the CI in WI...not sure there is a connection wiwth NY tho.
don't forget, Dr Frim is in chicago and is a chiari specialist!!

let us know how the MRI's go!

Godspeed
"selma"

[chadry]

I am so glad you posted back. I was wondering all day how things went.
I understand completely how you feel about your son and sports. I want to keep my daughter in a buuble to keep her safe, but we have to let them have some kind of life within reason. I would not let my daughter slide when she played softball. She was a good player and many times she was called out at home when she would have been safe if she would have slid in. Her coaches were great about it. Finally one day I said to them can you teach her to slide so that she will be able to get out of the way because I do not want her down on the ground and have something happen to her neck. They worked with her teaching her to slide and pop back up again. She felt so much better knowing that she could slide if she had too.
I feel so bad for your son having to turn in his gear yesterday.
The second doctor we seen was the chief of neurosurgery at a top children's hospital in Phila. I know he knows his stuff but when we left he had us in such a state of panic. I did not feel very comfortable with him although one time I did have a question with something with my daughter's eyes and his office called me back within about 10 minutes and I talked to him. I was impressed with that.
This last doctor we went to see is another top neuroosurgeon very familiar with Chiari and we felt so much more comfortable with him. We actually told him about the other doctor we had seen and he told us that he has worked with him and that he is an excellent docotr if we decide to go with him. he did explain that many people get scared after they talk to him because he always says what could happen and things like that but that if we decided to have do the surgery that our daughter was in good hands with him. So we have 2 doctors now that we can make a choice from. I am glad you are looking for a second opinion though. Get a third if you have to. Our ped. said he would find as many as we needed to help us make our decision. ASAP has a forum for parents that maybe you could post where you live and get some feedback from them about doctors near by that they have used. That is how i found this new guy we are seeing. My ped checked him out for us and told us he was a good choice to see.
I am getting nervous myself about our next appoinment on the 30th. We have to discuss some tests results we had done when she had her vestibular testing done. From what they were explaining to me on the phone about her resluts because they send you a copy, everything physically was fine so it looks like it is from her Chiari. I liked that about this hospital. She is in a study so they sent me the results but before I got them they called to explain what was on the test results so I would understand them when they came.
We have to discuss what we can do about her dizzy/vertigo spells when we go. She stayed home from school yesterday because she was feeling dizzy.
You and your son will be in my thoughts and prayers. Try not to get to panicky. I know easier said than done. I get the same way. I am so afraid of making the decision for surgery but I have read so many success stories with children who have had the surgery. Children's bodies are an amazing thing.
If you want you can send me an email and we can discuss our children more in depth.
Take care and let us know how things are going.
Chadry

[redkim]

I am having surgery soon, end of January, and the doctor I am seeing is actually a pediatric NS.  He was my 2nd NS and I really like him which is great.

I agree about not wanting to be in a bubble.  I figure skate, recreationally, and I can't imagine giving it up.  I am hoping that since my symptoms are not so far progressed as some others on here by the time they had surgery that my recovery will go well and I can return to doing the things I love.

I hope the same goes for both of your children.  Good luck!

[sherimom]

Thanks again for all the help and thoughts!!
It's been a frantic week, between doctor appointments, family calls, and trying to work too! But we've made it so far and I have wonderful family, friends, and co workers.

We saw the first neuro again today, just for the results of MRI spinals - thank heavens his spine is clear all the way - no signs of any syrinx etc...

So, I talked to my doctor and mentioned the Chiari Institute in Milwaukee, which is linked with Columbia St. Mary's Hospital.  He told me that they would be calling me and they called about 15 minutes after he did. We have an appointment for an evaluation on 12/17.  They are NOT linked with institute in NY.  

But the good news is that the neurosurgeon-Dr. Dan Heffez- has been doing Chiari for about 15 year and was in Chicago at the Neurology Inst of Chicago and I believe at St. Joseph's. When I googled his name, there was quite a bit there and he seems to be well known in the field. If anyone has had any experience with him, I'd love to hear about it, good or bad. They also are in network for my insurance and I was told (and think I saw on the website for NY that they do not take managed care - maybe on a cash basis??)
The eval iCI Milwaukee is supposed to take 2-3 hours, I will update as soon as I can afterwards.

My son cannot do gym either now - I laughed at him the beginning of gym class this quarter because he really wanted to take dodge ball with his friends.This is before the Chiari came up.  So he did and enjoyed it, but was told today he really shouldn't be playing any sports at all right now. He said to the surgeon - I could fall in the hallway at school, am I going to be in a bubble until this is done?? (I may need to invest in bubblewrap soon or he will be pulling his hair out soon)

Redkim- I totally undertand! It is making my 15 year old son crazy after giving up his sports for now. His Chiari is at 17 mm right now though - just started having symptoms, but still could be real problem. I'll check on wednesday and see what that doc says. How big is the Chiair you have?  And you are still skating now? My sons symptoms aren't severe but I think just because it's 17 that they are concerned. When is your surgery??

Chadry - I will send you an email - have to figure out how to do it on here first :-)

Thanks to everyone again - you have all made me feel so welcome here.
Sherimom

[chadry]

Hi,
Glad to see that you posted us back to let us know how things are going.
I sent you a message. I do not do it too often myself so i think i did it right. I think you just check your inbox.
Take care of yourself and your son.
Things are moving very fasy for you and that is good. Usually it takes awhile to get into different docotrs. I am glad they are putting a rush on it. It is so hard not knowing what is going on and just having to wait to get some answers.
Chadry

[selmaS]

Glad to hear ur appoint was a productive one....and it's good to know about the insurance with the Chiari Inst in Milwaukee....NY doesn't "take" insurance, but they do work with u and ur insurance...that's y I am doing all my testing here at home so my insurance covers it. And they put u in a Hops that works with ur insurance also...it's just the consult...that takes a bit of fanagleing (sp?)......

Well I guess u have a funny gift for ur son this holiday!!  Bubblewrap!! lol....

take care and do keep us posted!!

Godspeed
"selma"

[johnnyboysmom]

Just came across this and wondering how your son is?

My son had the decompression surgery 9 months ago and has gradually gone back to wrestling.  All very traumatic and difficult but in hindsight,  it has changed our lives in a great way.
It is impossible to understand this if you haven't walked in those shoes.

Good Luck to you!

[tma0704]

My son was dx with a 13mm during football hell week. He went down with heat stroke and dehydration. It was really very bad. This was overshadowed by the Chiari Malformation Dx.  

He has been asymptomatic for 15 years. ( He is 15) He has played football, basketball, snowboarding, baseball and been banged up pretty bad over the years.  

Our NS just released our son back to a "normal life!" That is INCLUDING sports.

I am hoping the best outcome for your son as well.  Please keep in touch, I would love to know how he is doing..... : )

[rozia]

therer is a chiari clinic nowin wiasconsin . chweck it out heard good things

http://www.medicalmoment.org/_content/treatment/jan09/1404024.asp

also Dr. Menenez in Iowa city Iowa is top children chiari dr. and NS