Hello all...new member, but I am relieved to find a group that can relate and share information about Chiari. As I said in my profile, my son's Chiari was discovered by a CT scan which was ordered by his otolarangologist (forgive the spelling!) due to extensive sinus surgeries and debilitating headache. An MRI was then ordered which confirmed the Chiari (see attached pic). We proceeded to see a neurologist today who specifically told us a Chiari I is nothing, doesn't ever require surgey, will never get worse, and has nothing to do with my son's headaches, numbness in his legs, the feeling of a shock in his right hand, muscle weakness during the headaches, and trouble with coordination. The doctor went on to prescribe neurontin (gabapentin) because Cody's symptoms sound like neuropathy. I am unsure about what I should do at this point...any thoughts or advice would be greatly appreciated.
The NS was wrong in saying that Chiari I is nothing and doesn't ever require surgery. I have it and have had decompression surgery. I was told my skull was eggshell thin and was good they got in when they did. It can get worse. I still have symptoms even after having decompression surgery. I'm glad I did have the surgery though because previous to it, I was waking up daily with head pain so bad I was throwing up. I missed so much school from it. The daily headpain to the point of vomitting has stopped since then. I have numbness and tingling as well as head and neck pain still. I have coordination, balance, speech problems, muscle weakness and more. My symptoms are not as bad as they were pre surgery. Though I have noticed more symtoms since then. I don't know whether they just hadn't shown up at that time or what. I was only 15 when I was diagnosed in 2003 and had the surgery 3 months later. I would suggest getting a second opinion from another NS. Especially if what you hear from this NS doesn't put you at ease or give you any answers.
There are tons of discussions on here. There are some with suggestions on questions to ask the NS and info on the different types of chiari and treatment. I have heard of neurontin. I believe there is someone on this site who is on it as well though I can't think of who. I am on topamax to help my regular migraines/headaches. Other than the side effects of numbness/tingling (which when I first started taking it, really heightened my regular numb/tingling) it has helped a lot. I was started on a 50mg with that and the side effects were too much. They cut it in half and had me take 25mg in the am and 25mg at night which helped. Now I'm back to 50mg at once.
My son is 13. He has struggled with different health problems throughout his life, that is why the NS’s opinion today concerned me. A doctor once dismissed the symptoms of a blood disease which landed my son in the ICU of Children’s Hospital in Cincinnati. It is so frustrating when seemingly minor health problems have led to surgeries for him…I was hoping the NS would be informative instead of dismissive. Actually, I was also hoping Cody’s symptoms could be explained…his school was calling me toward the end of the school year because they were concerned his symptoms were signs of a problem at home! That is kind of like a slap in the face when I have been by his side through so much.
Oh wow! I'm so sorry to hear that!! Yeah I would definitely recommend looking into a second opinion. Have you tried researching Chiari NS in your area? conquerchiari.org has a list of NS in different states.
Hello how are you? Im sorry that your son is experiencing all this at a young age. I suggest you get a second opinion because that Dr. Is really just sweep your son symptoms under the rug. I take that same meds as your son. Before surgery I had numbness tingling and sharp pains. Now I still have numbnes and tingling but my feeling is coming back and the gapentin. Is working better than it was I take 300mg 3 times a day. Im praying that your son get some type of relief so he can enjoy his upcoming teenage life to the fullest.
Here we go again with mis-informed neurologists!!!! The doctor that said your son's sx's were not Chiari related and that surgery is never required...was that a NL(neurologist)??? I personally, have not gotten ANY useful info about Chiari from a NL..Have you taken your son to a NS.(Neurosurgeon?)
In my journey ..to find a correct diagnosis...I too had NL's say basically the same thing your sons' dr. is saying..I am a lot older than your son....but his symptoms appear to me as Chiari related..though, of course, I am certainly not a doctor...
It just upsets me when these NL's tell Chiari pts that Chiari is NOTHING.....
Being a parent myself, I can only imagine your own pain and stress. Be sure to be taking care of yourself too during this stressful time...it is easier said than done, I know..but if you aren't well....be kind to yourself.
Let me first start by saying chiari isn't "nothing to worry about". I think most of us if not all of us have had a neurologist say that to us. I personally have been told that very same thing. It's crazy how intelligent, educated drs. could be this ignorant to this very serious neurological disorder. It's so frustrating for us to be diagnosed with this and then to be told "it's nothing". Meanwhile, I have these terrible symptoms and they treat me for headaches. Basically putting a bandaid on my problems and not one bit interested in solving it. When in fact, they know in their heart of hearts that your problems are being caused by the Chiari. I need to know why this disorder is time and time again swept under the rug as an incidental finding and not treated more seriously. It baffles me!! This is precisely why it is so important to see a neurosurgeon who specializes in CHIARI. I have had 3 opinions and they vary in opinion slightly but all come to the same conclusion, SURGERY! Unofortunately for me, that's the only treatment. My latest NS really validated me and didn't make me feel like I was making a moutain out of a mole hill. I really am sick, I really hurt and he knew it. My MRI's don't lie. He said he didn't even need to meet me in person and he knew how serious it was. I have a Chiari 1 9mm no syrinx.
I've been told you can go your whole life with Chiari and not ever know it. I'm sure that's true for some. For me, I fell down the stairs last year and it triggered everything. I've always known they're was something up with my headaches and pain in the back of my head for years, but drs. never paid any attention to it. If they didn't, I didn't. I just thought it was stress. Lo and behold, it was Chiari. An answer finally to all my pain. Now that I've gone on and on, I do hope this helps.
Keep us aprised on Cody and get that 2nd opinion with a neurosurgeon that specializes in Chiari. Good luck!
Thanks for sharing your story. While it is frustrating to learn other doctors have had the same attitude toward others, it does help me to know that my experience with a “mole hill” labeling doctor is not uncommon. I was afraid my attention to my son’s symptoms was being an overprotective mother! Thanks again!
Christine said:
Welcome Jouryney04!! Bless your son Cody!!
Let me first start by saying chiari isn't "nothing to worry about". I think most of us if not all of us have had a neurologist say that to us. I personally have been told that very same thing. It's crazy how intelligent, educated drs. could be this ignorant to this very serious neurological disorder. It's so frustrating for us to be diagnosed with this and then to be told "it's nothing". Meanwhile, I have these terrible symptoms and they treat me for headaches. Basically putting a bandaid on my problems and not one bit interested in solving it. When in fact, they know in their heart of hearts that your problems are being caused by the Chiari. I need to know why this disorder is time and time again swept under the rug as an incidental finding and not treated more seriously. It baffles me!! This is precisely why it is so important to see a neurosurgeon who specializes in CHIARI. I have had 3 opinions and they vary in opinion slightly but all come to the same conclusion, SURGERY! Unofortunately for me, that's the only treatment. My latest NS really validated me and didn't make me feel like I was making a moutain out of a mole hill. I really am sick, I really hurt and he knew it. My MRI's don't lie. He said he didn't even need to meet me in person and he knew how serious it was. I have a Chiari 1 9mm no syrinx.
I've been told you can go your whole life with Chiari and not ever know it. I'm sure that's true for some. For me, I fell down the stairs last year and it triggered everything. I've always known they're was something up with my headaches and pain in the back of my head for years, but drs. never paid any attention to it. If they didn't, I didn't. I just thought it was stress. Lo and behold, it was Chiari. An answer finally to all my pain. Now that I've gone on and on, I do hope this helps.
Keep us aprised on Cody and get that 2nd opinion with a neurosurgeon that specializes in Chiari. Good luck!
