I just read on another site where some one said, if you have children they WILL have chiari. Like it is no matter what, they will have it.
Of course my youngest son had it and had his surgery at 13 months old because it was preventing him from walking. He also had other medical issues that he was born with.
My oldest son has a genetic disorder that is not hereditary, it is extremely rare, and lucky that he is even here. He has had a CT Scan done which they did when my youngest was found to have the Chiari. He does have an arachnoid cyst that he sees the neurosurgeon for every year for a follow up to see how he is doing and gets a CT Scan done every year to make sure the cyst hasn't changed. I can't remember for the life of him if he had an MRI done or not. So now with all his other medical issues he has going on I am paranoid on if he has it too.
The guilt I have felt since finding out I have this has been overwhelming. My son is now 8 and has asked me so many times mommy why did you do this to me now i can't play football because of this stupid thing in my head as he says. I try to explain to him that we had to do it or he wouldn't even be walking. They already had a reverse walker ordered for him before we found out.
I do not want him to know mommy has the samething. And I do not want my ex husband to know either.. I guess it is more of a mindset thinking "so you are the cause of our childrens medical issues, its mommy's fault" Literally to the point of I have already thought about well what if I need surgery.. how will I "hide" that, not just from them but from everyone. lol I don't want a pity party. My best friend does my hair and already said she would figure out my hair and extensions even if I need surgery. I know it sounds so stupid and maybe even selfish, but I guess I feel like I would be protecting myself from more guilt and all the questions that people would then ask (from those that know all my kids medical issues) ya know the.. wow would you have had kids if you would have known, will you have more kids now.. etc. And even after my oldest was born I got those questions and it was a simple, I wouldnt trade him for anything and would do it all over again in a heartbeat. My boys are my pride and job and although it has been a rough road, I would do it again. (not saying I want more kids lol)
And then I sit here and think of all the times I have told my son to ignore the things the other kids say, and they aren't making fun of you they are curious.. and yet here i am being paranoid over the samethings. crazy how that works.
Any way, guess I am just feeling a little depressed and guilt ridden.
According to the Neurosurgeon I have been seeing, there is only about a 10% chance that it is hereditary. I too wonder if my kids will suffer due to my genes but realize if it is indeed hereditary than more than likely we obtained it the same way. Many of us have family members we wish we were not related to; but I now realize you can't help what family you are born into. The kids may not understand it now; but later in life they will.
I found out my 10 year old son had chiari 2 years ago. He has no symptoms so far. They were doing an MRI for something else. This was just after he was diagnosed with Type 1 Diabetes.
I was just diagnosed with chiari last month and am having symptoms, although the neurologist would have me believe it is just a migraine.
I have my suspicions about my mother having chiari since no one can figure out what is wrong with her and she has never been the same since her near fatal head injury several years ago.
But genetic or not, it is not our fault. We didn't choose this. And this is not the way life was intended to be. My son has gone through some really angry and depressed periods with the diabetes. I have been in tears with him over it. It is really hard sometimes. Hopefully in time your son will see that you have only done what is best for him. You both are in my prayers.
It is funny you say you have suspicions about your mother. My mother went through so much before her death, many symptoms similar to mine. Doctor's wrote her off, as they were beginning to do me. The only regret I have is not doing an autopsy to find out what was wrong with her.
Heidy said:
I found out my 10 year old son had chiari 2 years ago. He has no symptoms so far. They were doing an MRI for something else. This was just after he was diagnosed with Type 1 Diabetes.
I was just diagnosed with chiari last month and am having symptoms, although the neurologist would have me believe it is just a migraine.
I have my suspicions about my mother having chiari since no one can figure out what is wrong with her and she has never been the same since her near fatal head injury several years ago.
But genetic or not, it is not our fault. We didn't choose this. And this is not the way life was intended to be. My son has gone through some really angry and depressed periods with the diabetes. I have been in tears with him over it. It is really hard sometimes. Hopefully in time your son will see that you have only done what is best for him. You both are in my prayers.
I understand your fears and your feelings of guilt.
But I think it's really important for you to immediately stop your son when he places blame on you and correct him that this isn't your fault, it's not anyone's fault. It wasn't your parents fault and it wasn't their parents fault. It was completely out of your control. Your accepting blame for it isn't productive and could be destructive in the long run.
Bottom line, he wouldn't be here without your genes. I do understand, it is depressing and it does make you feel guilty. But at the end of the day, you have to remind yourself that this is something you had no control over.
I totally understand your fears and worry. Even though I knew better medically & logically. I still was terrified until my daughter had to have treatment for a Thoracic Kyphosis & I was told she definitely didn't have CM.
My CM situation is so incredibly extreme it would have killed me if I thought she would have to go through and live like I do.
I am a Member of many sites. Please message me and tell me which site you read this on. I know all the Administrators and will let them know that is totally incorrect. Chiari does run in some families, but and that is a big but.....it has not been proven to be heredity. They are doing research right now, however there has not been a specific genetic marker found.
I know in my head that it is not my fault and was out of my control for their medical issues. The genetics doctor at Riley told us that with my oldest we had a better chance of winning the lottery twice then having a child with his genetic makeup, and him actually being born. (not miscarrying) We were very fortunate to live in Indy and have all the doctors right at our finger tips for my boys, otherwise I am not sure they would be even be here or at least not doing as well as they both are.
I know my youngest is only 8 and might say hurtful things without meaning it, as that is what children do. And some day he will understand that we did what was best for him.
My ex and I do not get along at all to say the least, so I would rather not tell him anything at all about this. It was a messy divorce but it was a long time coming. I basically took care of the boys myself and all the appointments, including the fact I went to 2 of the 11 surgeries alone because work was more important and my parents live 3 hours away and couldn't make those either. It was a long few years, but worth it.
I am really hoping my appointment Friday goes better and I get some much needed answers. My anxiety has been out o control for over a week and I have not slept more then a few hours at a time and I am just miserable.
I cant thank you all enough for taking the time to reply and hearing from people that don't "know" me is actually more comforting then from my parents or friends because ya know they *have* to say those things to make me feel better. You guys don't really *have* too. Does that make sense? lol
So thank you all, i really appreciate it and so glad i found this community
Sorry to hear of all the issues. there is no direct genetic connection with chiari malformations. About 3-5% of the general population is walking around with some cerebellar tonsillar ectopia. Having a first degree relative(child, parent, sibling) roughly doubles the chance of having cerebellar tonsillar ectopia. Remember most patients with cerebellar tonsillar ectopia are asymptomatic.
I have 7 kids of my own. I completely understand your sense of guilt. But it is really mis-placed. From what you are saying, you didn't know you had a Chiari when you were pregnant(and I can't imagine you would have changed anything if you did).
Think about the logical extension of your statements. Are you saying your son shouldn't have kids because he has a Chiari? Are you saying it's your fault your son has a chiari?
I know hearing someone else say it doesn't help, but chiaris are multi-factorial. Most of your kids won't have it. Some will. That's true for most of our body parts(some less important things like height, some more important things like disease risk).
I would also address whom to tell.
My experience with medical issues like this is that hiding it NEVER helps. You will probably need some assistance post-operatively. It is fair that your first degree relatives know. If they have difficulty with head-aches, etc, they should have a much lower threshold to obtain an MRI. Your ex is irrelevant in this discussion. He's no blood relative to you. He may have a chiari as well. Unless he's had an MRI, there's no way to tell.
Finally, you may want to re-explore limitiations on your son. If he is now asymptomatic, many neurosurgeons would allow him to play football, soccer, etc. That is somewhere that the art of medicine is needed. There is no science in limiting activity in Chiari patients(and even less in decompressed Chiari patients).
Dr. Trumble thank you very much for replying. I know you are right when it comes to feeling guilt over my son having it. And you are right, regardless I would have had him any way :) I guess we all have our good and bad days the ups and downs of guilt and depression in general. Right now only my husband and parents know but once I see the doctor tomorrow then we will let our immediate families know.
I also wouldn't expect or tell my son not to have children because of his chiari. But when they are both old enough to understand there will have to be a discussion on having kids regardless. My youngest was also born with Pierre Robin which from what I have been told is a higher chance of passing it down. Although he did not have the Sticklers Syndrome that can go along with PRS.
My oldest son has a rare genetic disorder 45xo,46xy and he currently only has one testicle which is very small, and as of right now it is not causing any other issues but he is monitored every 6 months for scans to check for testicular cancer, and his urologist has said come puberty (11 or 12) it will most likely need to be removed. Right now it is small (smaller then it should be) and softer then it should be. He probably will not go through puberty on his own even if it is not removed and will need testosterone injections in the next year or two. So he will not be able to have children at all. That is a discussion we have not had with him yet. he is 10 but he is delayed and wouldn't understand. He sees a counselor weekly and we are waiting for the right time and the right age to explain it all to him.
I did plan to ask my sons neurosurgeon if he is able to play other sports like football and karate. He has had no issues since his surgery 7 years ago, hopefully she will give approval for him. I know it would make his day. Of course the same neurosurgeon sees my other son for his cyst and also says no contact sports for him either. Even though nothing has changed with his cyst in 7 years. But I do plan to ask her at their appointment in June.
Thank you for your insight and kind words, I really appreciate it.
Dr. Trumble said:
Sorry to hear of all the issues. there is no direct genetic connection with chiari malformations. About 3-5% of the general population is walking around with some cerebellar tonsillar ectopia. Having a first degree relative(child, parent, sibling) roughly doubles the chance of having cerebellar tonsillar ectopia. Remember most patients with cerebellar tonsillar ectopia are asymptomatic.
I have 7 kids of my own. I completely understand your sense of guilt. But it is really mis-placed. From what you are saying, you didn't know you had a Chiari when you were pregnant(and I can't imagine you would have changed anything if you did).
Think about the logical extension of your statements. Are you saying your son shouldn't have kids because he has a Chiari? Are you saying it's your fault your son has a chiari?
I know hearing someone else say it doesn't help, but chiaris are multi-factorial. Most of your kids won't have it. Some will. That's true for most of our body parts(some less important things like height, some more important things like disease risk).
I would also address whom to tell.
My experience with medical issues like this is that hiding it NEVER helps. You will probably need some assistance post-operatively. It is fair that your first degree relatives know. If they have difficulty with head-aches, etc, they should have a much lower threshold to obtain an MRI. Your ex is irrelevant in this discussion. He's no blood relative to you. He may have a chiari as well. Unless he's had an MRI, there's no way to tell.
Finally, you may want to re-explore limitiations on your son. If he is now asymptomatic, many neurosurgeons would allow him to play football, soccer, etc. That is somewhere that the art of medicine is needed. There is no science in limiting activity in Chiari patients(and even less in decompressed Chiari patients).