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928066 tn?1244516740

chiary symptoms...

one of the the many symptoms that I have from this awful disease is that I can't even laugh ...I know it sounds weird but its true..if I laugh hard I feel like my head its gonna blow or something... and that headache makes me throw up and I feel dizzy...is this com.?...am only 25 and this is just taking over my life...I love sports..I'm a soccer player (but I had 2 quit cuz of this...I can't do what I love 2 do...like snowbording and all the fun stuff my friends do....I wanna do the surgery but that is not 100% that I'm gonna b ok after...:( is there something else that can help me reduce my back pain and neck? like massage or something?
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Avatar universal
my daughter had chiari surgery almost 3 years ago and her main problem was headaches.  She had the problem with laughing, nausea, dizziness, and almost blacking out especially when she was playing sports. That all happened in seventh grade and at the end of the year in May she stayed home from school. We scheduled the surgery when we found out the problem, because it will never go away. We didnt want to prolong her agony.  Do it now while you are young. My daughter was 13 when she had hers and her life changed drastically. This is such a horrible time to endure this being a middle schooler.  She is a sophmore now and every time she tries to be in a sport on a consistent basis she has to stop.  When they cut through the neck muscles it created new problems.  We were never advised to go to physical therapy and I wish we would of went sooner.  Her physiatrist said that she may have tore muscle in her neck because when you cut through muscle you destroy muscle but also shorten  it too.  Physical therapy softens and stretches the muscles longer so you have a wider range of motion in neck.  After surgery they encourage you to turn your head to prevent scar tissue.  Now this is not exactly what you feel like doing after this surgery but its a must. My daughter was not diligent enough and being 13 raises some problems.  They easily get a feeling of hopelessness in their teens. You are 25 and you have the high school thing out of the way.  My daughter is really well rounded,pretty and had everything going for her.  She was top of he class last year and in advanced math her freshman year. She was riding hunter/jumper A circuit and had to quit because her neck hurt, she got dizzy and therefore couldnt be on a horse.  She tried crosscountry and made it on the varsity this year without running consistently for 3 years and had to quit. Soccer was a fravorite but if she cant do cc she probably cant endure soccer.  She needs to strengthen those neck muscles more thru pt and its  a life long commitment doing your excercises.  She wants to get into a good college so she is trying to build a good application and it depresses her.  Your not going thru that stage in your life. Good time to pursue this and get it over with.  Everyone thinks they should be still and let it heal properly but they want you to move that neck to prevent scar tissue. No somersaults or cart wheels obviously. Just be diligent and sensible and you will be able to enjoy the things you like to do later after surgery.  Be patient!  You know that song by the rolling stones (not that they are my favorite) You cant always get what you want but if you try sometimes you get what you need.
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Avatar universal
Hi mik11,
Wow you were not kidding when you said he had a very long hard surgery. I am so happy to hear that he is doing all that great stuff again. In a year too. A mustang Huh. Yeah he has good taste. I would love to have one of those myself. Are you going to get one for him? Do you find yourself spoiling him a little bit? I know I do with my daughter. I tend to give her a bit more than the other kids. Well she is the youngest of 8 and most of them are already grown and on their way. She is the baby and now I can actually afford to give a little more without having to split it so many ways. The other kids laugh and say we are probably going to buy her a car too. They spoil her too though.
I am so happy to have been able to talk with you about Dr. Campbell. By you sharing your story with me and your son's surgery I feel much better about trusting the Dr. He told me the few times we visited him not to worry so much about the Chiari and let her do the things she wants to do. Except for tumbling and wrestling. Which she does not want to do anyway, but the point is he said she will know if she can do it or not. If she gets a headache than she will have to stop that activity. Like I said before he said it was large but not impressive or crowding things. I have a constant inner battle about whether or not I should get her the surgery but in the same time there could be complications that she does not have now. Do you know what I mean. That is why your son's story has helped put me at ease a bit. I am sure that if Dr. Campbell felt she needed the surgery he would have done it by now.
Thank you again mik 11. I hope to talk with you more and hear about all the wonderful things your son is getting into.
Chadry
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Avatar universal
Thanks Peachy the little one is now 5'10 turning 16 on monday and getting his license. Oh and he wants a Mustang ( Sheesh ) Take care and thank you
Mik
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906843 tn?1245208894
I am so very happy and proud for your guys ! How awesome what an amazing story. We need more like this to give us all hope. Tell your little guy to keep up the good work ! Warm thoughts coming your way and keep us updated.
Helpful - 0
Avatar universal
Hi Chadry
We last seen Dr Campbell in october and diagnosis was great.So we dont have to see him again till this october.My son is doing GREAT.His symptoms included difficulty sneezing walking,balance issues,headaches, swallowing even some slurring,and now they  are  all Gone!. He had his surgery last july and you would never know he even had it.Playing basketball everyday running around,no headaches just fine.He had a 17mm chiari along with a 18mm basiliar invagination.What a diffrence a year makes, last year at this time we didnt know where to turn or what to do. Doctors Campbell and Wharf performed the 7 hr surgery.Dr Wharf did the Chiari and Campbell  did the hardware 4screws 2 rods a plate and fusion! (yea I know what your thinking) but this wasn't a typical chiari.I believe Dr Wharf is taking a position with Bostons Childrens medical center. He will be missed at AI Dupont. I know we will miss him.I am so greatful to have had them Docs.I hope Campbell never leaves.
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759386 tn?1324562124
My herination is one cm as well and it hurt to laugh and I have to lay down or I am afraid that I would pass out, the muscles in the back of my neck seem to hurt more and more everyday, I was in an auto accident the last weekend of april by a car going apprx 45 and only stopped after she hit me in the rear.  We were waiting to turn into our sub divison and then wham...

I can feel everything that your daughter is going through..  

The docs said that it was not causing enough problems for surgery this spring and I have been getting acupuinture once every 3three weeks.  IT was really helping till the accident and is a nice relief - but short lived...

I have another mro scheduled next tuesday to see what the accident did for the malfromation.  All i know it that the back of my neck hurts more everyday and the left side of my neck as well, it is starting to go down into the left shoulder.and nto my wrist and to the ends of my fingers...
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Avatar universal
How is everything going on your end? have you been back done to see Dr. Campbell yourselves? How is your son doing now? Is he going to need anymore surgery or did the surgery he had fix most of the problems?
Chadry
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Avatar universal
Hi mik 11,
We have seen Dr. Campbell a few times. He really does not want to do any surgery on her yet. She has a long herniation. It is 1 cm but it is very thin. He said it is not very impressive. That it was large but not impressive. He would do the surgery if we really wanted him to do it but she has done alot of different testing and everything has come back normal. He said if her symptoms were from her condition that something usually comes back abnormal. She is taking a very mild blood pressure medication at night to see if that helps. He believes she is getting a form of migraine so she seen another good doctor who agrees with him and he is the that gave her the medication. I even asked that doctor if he thought the herniation was on the large size but he said the same as Dr. Campbell. He said he has seen much worse. It is long but it is not crowding anything.She seems to be doing slightly better but I guess  I will always think that it is still the herniation that makes her not feel good. There are a few things that she gets that  Dr. Campbell says is from the Chiari but it is not bad enough to get the surgery at this time. He does not just want to do the surgery for surgery sake. he wants to know that if he does the surgery she will get some relief from symptoms. So surgery is still a possibility in the future. It is kind of an everyday wait and see how she feels thing. She had a horrible day yesterday. I always feel bad on those days and I get nervous myself when she does not feel well. I truly feel that the herniation is what is causing this kind of migraine along with her other Chiari symptoms. I have seen the reports she has had done though and the testing she had done for her dizziness did come back in the normal range and she had so many things done that day.As a parent I was very relieved that everything came back normal but we still do not have any concrete answers which I am sure so many people can relate too. If it said that this is wrong or that is wrong than we would know what we had to fix. Do you understand what I mean?
Thank you very much for taking the time to ask about her. I really appreciate it.
Take care.
Chadry
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Avatar universal
Hi Chadry
I remember you saying that Dr Campbell at Dupont was your daughters doctor. Did you see him what was his diagnosis ? did she have the surgery? and how is she doing.
Mik11
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Avatar universal
That is one thing that my daughter complains about also. She can be fine and then she will start messing around with her other siblings and when she starts laughing real hard she gets a very bad headache.
I think back now to when she was a baby and you know how they tell  you to let then cry for a few  minutes when you put then to bed well I could never do that with her unless I wanted to clean up a real mess. First of all let me tell you she is the youngest of 8 so she never really cried too much without someone picking her up but, when she got to be over a year old I tried to put her to bed without someone being there with her. It was quite funny because most of the family was sitting outside the bedroom door and we all wanted to go in and pick her up but we were trying the crying thing for a few minutes. It was so hard for us to hear her cry, next thing you know she puked everywhere. I mean everywhere. She was so upset for a long time after that. I tried it one more night and within a few short minutes the puke was everywhere again. that was the last time I did that.Of course if I had known about her condition at the time I would have never done that. But how are you to know these things. She is still that way to this day. She can not cry or laugh too hard without getting a headache or sickness to her stomach.
She also did not play softball this year. I thought she enjoyed it but she said she didn't want to play this year. I am still not sure if it is because of her condition or just that she is 13 and being a teenager.The heat does bother her alot though. So that may have something to do with it. She always liked sports. She is actually a black belt in karate and when I think back now to what she was doing in karate before we knew about her condition I cringe. If she was not at the studio every night she was upset. I think she is realizing that there are certain things she just does not want to do anymore because it will make her not feel sick.It makes me want to cry sometimes because I worry about her so much. I know this sounds weird but sometimes I wish that we just don't know about what is causing the real problems and  that we could go back to being ignorant of the condition but you can't so you just have to make all the life altering changes. iT ***** sometimes.
Take care and keep your laughs down to a chuckle. In chiari people laughter is really not the best medicine.
Chadry
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555358 tn?1292532061
See how I'm being nice and not telling Selma any jokes? :)
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800724 tn?1254440318
hi selma...i wanted to know how your surgery went??
How u feelin?
what was it like and have some of ure symptoms been better yet or is it too soon to tell?

thankss
--Elle~~
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620923 tn?1452915648
COMMUNITY LEADER
I had my surgery with TCI in NY.......I only heard of a Dr Won with Kaiser, but am  not able to recommend him....if u can travel try to get to Dr Oro in CO.......

Thank u .....as I said I am feeling some changes already....I hope some stay, and I get the ability to laugh without puking....lol...  : )
Helpful - 0
928066 tn?1244516740
thank you Selma :) so I'm not the only one :D...yeah I quit doing sports...only walking 4 me for now I guess..I really hope you feel better after the surgery and I hope u'r gonna b pain free and enjoy life... where did u had the surgery? Do you know any specialist is this  in California? thanks
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi Lydia.....my thing I am know to say is....

don't make me laugh it hurts and I'll puke.......

U r not alone....I just had the surgery so it is too soon to tell if I can laugh normally now....if fact my DD asked me that today when she called....I said I haven't had a good laufg to tell....she said no worries she'll be home next week.....she always makes me laugh.

What u must accept is there is no cure and by continuing on with ur sports u can cause further issues including permanat damage.

I can tell u I feel different already and my surgery was on May 28th......I am sure once I am healed from the surgery end of it I will be able to tell more of my symptoms that have gone, but I know I will always have chiari and I know I can get ne or all of the symptoms back....from a fall...MVA ect.....there r no 100% ......but if ur compression is bad u could be worse if u wait too long.

Please see a chiari specialist and let them help u make theses decesions.

"selma"
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