Thank you so much Guy, still hoping we don't have to have surgery but it is so nice to have this info before I go in. I am glad you have had success and I am taking in all these names so I can do further research just in case. Wishing good health to you.
Guy who makes stuff/likes cake said:
Anyone near Nashville: I've benefitted a lot from medical qigong treatment by a fellow named J Michael Wood 615-498-1599. I hope it's ok to give names and phone #'s here. I realize it sounds pretty hoaky but it really helped me. Many years after decompression surgery in '93. John Barnes myofascial release was also quite helpful. But everyone responds differently to meds and treatment. God bless you all.
My 13 year old gave up lacrosse after we discovered the chiari. However, he just finished third at a 5k yesterday--running against high school and adult runners. When God closes one door, he opens another.
That is awesome Populist Mom, good to hear these stories. I am having a situation where my son is wanting to play his baseball game today, his dad is saying no, not until we see the neurosurgeon. He has already missed two games and we don't go until April 7th. Since he is virtually symptom free I thought he could play in the outfield, where he, in my opinion, where he would see less action. I just hate to see it affect his life this much when he is not even showing any symptoms that are notable (slight headache that comes and goes very quickly). I think I will try and see if I can call the neurosurgeon's office today and explain the situation and just get their opinion. I know they can't tell me for sure since they have not seen him, but an opinion would be nice. I would like to hear from others, whether or not their children are still competing in sports; baseball, soccer, the lesser of the contact sports (I know there are risks in every sport) If anyone can let me know I would so appreciate it. Thanks for the response Populist Mom.
Grifmom, I donât have Chiari, am just a helping hand here, so do not feel qualified to answer detailed medical questions questions about it. However, I have seen my share of neurosurgeons for genetic degenerative disease that targets the spine. I have problems from the top of the spinal cord, that begins mid skull to the tip of the tail bone. What I will say is that surgery does not always make you better, and that you should get to every Chiari aware neuro for an opinion as you possibly can.
Knowledge is power, learn all you can so that you know what questions to ask, and how to understand the answers.
I wish you the very best possible outcome for your son.
I suggest you wait to see what exactly the test results say. If surgery is the answer question the doctors credentials in Chiari surgery. Do your own research. If your not happy with your doctor you can fire hjm and one much for qualified for the job. It took me two years. I found Dr. Heffez, He has his own clinic and specializes in Chiari surgeries, he is fantastic. Look up his website at Wisconsin Chiari Center, Milwaukee, WI. He does a little presentation on the site and there is a lot of info there. people come from all over the country to to go there, as I did. Let me know through E=mail if you want any more info or support.
I would let him play baseball. The Columbia University website has an article on the importance of play. You want him to stay fit and happy. (I'm also letting Joe play rec. soccer in addition to the running.) I would say no to football and rugby. Good luck!
Grifmom said:
That is awesome Populist Mom, good to hear these stories. I am having a situation where my son is wanting to play his baseball game today, his dad is saying no, not until we see the neurosurgeon. He has already missed two games and we don't go until April 7th. Since he is virtually symptom free I thought he could play in the outfield, where he, in my opinion, where he would see less action. I just hate to see it affect his life this much when he is not even showing any symptoms that are notable (slight headache that comes and goes very quickly). I think I will try and see if I can call the neurosurgeon's office today and explain the situation and just get their opinion. I know they can't tell me for sure since they have not seen him, but an opinion would be nice. I would like to hear from others, whether or not their children are still competing in sports; baseball, soccer, the lesser of the contact sports (I know there are risks in every sport) If anyone can let me know I would so appreciate it. Thanks for the response Populist Mom.
Or ask the neurologist. I can't imagine why he couldn't play, but be safe and ask. You're right though' play right field and late in the batting order. Not trying to stick my nose in but if your son tends to be a bit somatic, missing those games will tend to reinforce it. Speaking as a dad, I'll warn you right now your husband may be more trouble to deal with for a while than your son. Dads don't process this stuff real well until they have a plan. So you have two little boys right now. Be careful with your son. You never know whether you have six year old or a twenty year old emotionally. if you appeal to the wrong one all hell will break lose. (of course as my wife after 30 years of middle school will tell you that's the appeal of that age.)
I WANT TO THANK EVERYONE WHO HAS TAKEN THEIR TIME TO COMMENT. I find this very helpful. And someone mentioned it would be hard on my husband probably than myself, and they are absolutely correct. My husband does not even want to talk about it as he becomes so emotional, he is not in denial at all, he knows what is going on and wants to address it but he just can't seem to talk about it without crying. Thus, I am glad I joined this group because I have much support here. People have to deal with things the way they need to and I don't hold that against my husband at all, I feel for him as it is his son (although mine too) and I know there is a special bond between dad's and their sons, just as there is with mom's and their sons, and so on.
My daughter was diagnosed 3 years ago . Everyone freaked out our Reg GPâs , us , the neurologists until we saw a certain neurosurgeon who slowed everyone down . The first set of Drs pulled my very active 15 year old daughter at the time out of all her sports and her rep lacrosse she loved ( she was their only goalie) she missed a month of the short season until the neurosurgeon calmed everyone down and allowed her to go back to sports. ( be careful if you let a team know that your child has a incurable condition no one knows nothing about all of a sudden even water boy or being on the bench for the game becomes a liability for the league from personal experience) my daughters first love is rep hockey and she has not missed a game since being diagnosed ! She is a goalie and not to say she doesnât have her pains and aches, headaches and everything else that goes along with chiari but I will tell you right now those aches and pains will always be there , along with the headaches, she pops her joints out carrying her school bag so if this is what makes her happy in life Iâm not about to take it away. She knows her limits and when she needs to pull back and she readjusts the rest of her life so she can accommodate the sports but this is what keeps her happy in a life that maybe isnât so happy for a teenager with chiari. If I took the sports away from her Iâm not so sure where her head would be in all this after being diagnosed , but that is just my family . My son and I also have chiari he is 20 and played sports throughout his teenage years where he obviously had chiari too but we didnât know at the time he was just diagnosed 2 months ago . He is 14mm , so talk to your Drs but get more than one opinion.
Brookeâs Mom - my 13-year-old daughter just tried out for cheerleading and I think the reason they didnât take her was the liability issue. We told them about it prior to tryouts and now I wish I hadnât. Has your daughter or son had the surgery?
Brooke's mom - I never considered that, about the liability issue and them not letting him play. We are just playing baseball right now but we can hold off until we see the neurosurgeon on the 7th. My son is not in any pain at all, and only has a slight headache. I am not sure what to do about football, he loves it so much. I am happy that your daughter has chosen to do what she loves doing, I hate to keep that from my son as well. We have not had surgery and not even went to see our neurosurgeon yet (we go on the 7th of April). I am very hesitant about surgery, I have heard both pros and cons. I want to stay away from surgery if at all possible and will definitely get a second or third opinion if need be, but hopefully we will meet with a neurosurgeon who suggests the same...wait. My son has played football since he was eight or nine years old without any issues, I guess time will tell. My son is at 14 mm as well. No syrnix (not sure if that is spelled correctly)
GRiffmom - I am waiting on my daughterâs surgery as well since the neurosurgeon said we could. She does have a Syrians so she will probably eventually have to have surgery. But weâre waiting until it really affects her life on a daily basis and the surgeon said that was fine.
I think I could live with that as well. I found out a day after my son was diagnosed that my brother, in his early 50's, also has it but he has been in pain for the last three years and nobody could find anything wrong with him. He has been put on medication after medication and sent from doctor to doctor, so hopefully they finally have the right diagnosis and can help him as well. My cousin was diagnosed in 2008 after a car wreck, which I had no idea she had it, and now my uncle possibly has it as well. I think I do too but I have never been tested. I just never knew it affected so many people.
How are Nero surgeon at Vanderbilt is actually on a medical research team that involves 30 hospitals in the US in the treatment and diagnosis up Chiari. He said itâs not really that rare. Itâs just now coming out more because people are getting more MRIs than they used to and discovering it.
Tried to reply the other day, but had computer problems. My 9 year old son was diagnosed with a 22mm herniation after having sharp pains on top of his head (they were two short to really be called "headaches"), at first during exercise, then when going from lying down to sitting up. This was over a year ago. We were in the same situation as you were, with a recommendation for immediate surgery. At the time, it was overwhelming, trying to process the diagnosis AND make a decision about surgery, so I did a lot of research, got 4 "second" opinions and held off doing anything for about 5 months. It was a follow-up visit to a neurosurgeon, who I researched and came to trust, that brought us to the decision to have surgery. At that point, my son seemed to be having more frequent episodes. I felt that the younger he was, the better outcome he would have He had the surgery last February and has been symptom free. I am going to schedule a 1 year follow up for May. This was an EXTREMELY difficult decision to make, as the research tells you this condition is very patient specific and you cannot necessarily predict the path it will take. My best advice is to do your research and find a neurosurgeon you REALLY trust. BTW my son was fantastic pre and post op and. unbelievably. was back in school 2 weeks after surgery!
Thanks so much Tama, and you are right, I keep trying to prepare myself for the doctor telling us he wants to do surgery but I just can't go there right now. I told my husband that we definitely would get other opinions, as I will not jump into anything. I have read so many different things, good and bad, about having the surgery or not. I am just afraid that it might be worse after the surgery instead of better. Thanks so much for the input and SO GLAD you son is doing wonderful!!! Please keep in touch and let me know how he is doing at his one year check up, curious to know what the doctor says. I am thinking it will be great news!!!!!
Hello! My daughter was 13 when she had her surgery. She had a pretty large syrinx and had severe headaches in the morning. So she had the crainiectomy and the back of C1 removed. The syrinx grows due to the brain corking up the flow of spinal fluid. Like your son, she was very athletic (power tumbler and competitive all star cheerleader, so she was very strong. She was told she would need to stay home the first 8 weeks of school (surgery was in July) because she would not be able to support her head to read books, write, etc. Well Tori loves school and her friends. She talked me into letting her go to school the first day of class for half the day, and the next day she was back full time. THe doctor could not believe it. The surgery was successful and she is 20 now. I would always get a second opinion (we live in OK and I took her to the Mayo Clinic for a second opinion.) They said that the best doctor was in OKC! They knew him personally. I hope that your son experiences an easier recovery period due to his strength, like Tori.
Well if anyone's child must be told to give up a sport (like my daughter) then pray for another window to be opened. We were devastated when Tori had to give up tumbling. She was in the gym 5 days a week. And she lost all of her "cheer friends" who didn't choose to stay with her. She went into theatre and got all new, wonderful friends and it was in this new hobby that she found that theatre was the love of her life.
Grifmom said:
Oh wow, that is awesome. I have always been worried about him playing, as we all know what can happen in football, or any sport for that matter, but I don't want my son to have to quit doing the things he really loves. Thanks for that, I cried for two days and my husband is still beside himself we were so worried about the health of our son, but I do feel a little better and just anxious to get in to see the neurosurgeon. All I want is for him to have the best quality of life possible. THANK YOU
I would add something to that. I have had 4 kids have to retire from sports they loved two aged out as pros (One NFL and the other Tennis) and two because of health One boy was avery high level (Olympics Development taeam) soccer player and the other blew out his ACL a second time The soccer player was because of a kidney transplant. I thought the medical center we were at was crazy when the brought in a sport psychologist to break the news. It was the best thing that ever happened. This guy was able to use sports to illustrate life and dealing with chronic illness/injury The sum of the discussion was really simple EVERYBODY plays their last game some time and has many changes in life. He went on to get across its not just sports but friends, relationships, hobbies, deaths etc. Some change were bigger than others and how but a very few decisions chart our entire life in terms of Happiness. he named 4 - Faith, academics, career, and marriage all of which were more important than sports. Screw up one of the four, and its almost impossible to go back........... That of course is an over simplification but if you have access to a guy like that use him. I'd like to think I couls be a Sabrina777 type parent. But I have always needed "back-up"
sabrina777 said:
Well if anyone's child must be told to give up a sport (like my daughter) then pray for another window to be opened. We were devastated when Tori had to give up tumbling. She was in the gym 5 days a week. And she lost all of her "cheer friends" who didn't choose to stay with her. She went into theatre and got all new, wonderful friends and it was in this new hobby that she found that theatre was the love of her life.
Grifmom said:
Oh wow, that is awesome. I have always been worried about him playing, as we all know what can happen in football, or any sport for that matter, but I don't want my son to have to quit doing the things he really loves. Thanks for that, I cried for two days and my husband is still beside himself we were so worried about the health of our son, but I do feel a little better and just anxious to get in to see the neurosurgeon. All I want is for him to have the best quality of life possible. THANK YOU