I am curious as to how many of you are still symptomatic even after decompression surgery and what do they attribute it too? My 15 yr old son, Ben, has been symptomatic since is surgery eight yrs ago. How do you know if the symptoms are due to pressure or not? He is in an incredible amount of pain almost 24/7 and we’ve noticed that it’s only getting worse. What are his options? How do they tell for CERTAINTY that it’s not pressure? Are lp taps safe after decompression surgery? please help!
Chrissy,
There is nothing worse than watching your child be in pain! I am so sorry that he is so miserable. Are you still in contact with is Neurosurgeon? Also has he had any scans done recently to try and pinpoint where or what is causing pain? I'm not really super informed about syrinxes. I do love the site conquerchiari.org as it covers a lot of different subjects including a case study done about tracking syrinx improvement. I would recommend checking the website as there is a lot there about syrinxes. I wish I could be of more help, I'm hopeful as the day goes on you will get some answers from people that have had the surgery. I do have a friend that had the surgery and it was very successful. Sometime after the surgery he was rear ended which caused his syrinx to burst. Did you son get any relief after the surgery or has it been constant pain since? I would recommend getting a MRI done and also maybe a CINE MRI as well if you haven't already, like I said before to see if they can tell what is going on. Again, I wish I could be more helpful. My heart reaches out to you because I am a Mother as well and it is heartbreaking when are children are in pain and we are helpless to give them relief. Please keep me updated on how he's doing and how YOU are doing as well. If there is anything I can do let me know. Take care of yourself and I hope your son finds relief soon!
Sarah
Thank you so much. He’s been symptomatic ever since surgery with only a little improvement with a couple of his symptoms. Things got even worse when he hit puberty and have been going down hill even faster since Christmas. They did an MRI last week and we see a new neurosurgeon tomorrow. His original NS was little help after he did the surgery, he just considered him ‘fixed’ and that his continuing problems couldn’t be related to the chiari. He soon left the children’s hospital for another job and the other NS’s didn’t seem to want to mess with Ben. We eventually ended up taking him to my NS ( I have IH) but since he’d already been decompressed she wasn’t sure what she could do for him. Which led us to a reg neuro at another children’s hospital who was vey nice but was treating him for migraines. She tried literally every medicine she could come up with with no success. They either didn’t work for his pain or he couldn’t be on them long enough to find out if they would work b/c they caused emotional issues. She really tried, finally consulting another NS and Dr. Of pharmacology. They came up with a last resort medication plan that was also unsuccessful. So for the last year and a half we’ve been on our own. I just wish I knew for sure that it wasn’t pressure. His headaches seem just like high pressure headaches and I know the damage that can do! Now with all of his physical symptoms and pain, he seems to be having cognitive problems too. He’s really stressed and we’re really worried.
Sarah Pugmire Baron said:
Chrissy,
There is nothing worse than watching your child be in pain! I am so sorry that he is so miserable. Are you still in contact with is Neurosurgeon? Also has he had any scans done recently to try and pinpoint where or what is causing pain? I’m not really super informed about syrinxes. I do love the site conquerchiari.org as it covers a lot of different subjects including a case study done about tracking syrinx improvement. I would recommend checking the website as there is a lot there about syrinxes. I wish I could be of more help, I’m hopeful as the day goes on you will get some answers from people that have had the surgery. I do have a friend that had the surgery and it was very successful. Sometime after the surgery he was rear ended which caused his syrinx to burst. Did you son get any relief after the surgery or has it been constant pain since? I would recommend getting a MRI done and also maybe a CINE MRI as well if you haven’t already, like I said before to see if they can tell what is going on. Again, I wish I could be more helpful. My heart reaches out to you because I am a Mother as well and it is heartbreaking when are children are in pain and we are helpless to give them relief. Please keep me updated on how he’s doing and how YOU are doing as well. If there is anything I can do let me know. Take care of yourself and I hope your son finds relief soon!
Sarah
Chrissy,
You guys have really been put through the ringer! I don't know how you would tell whether it is pressure headaches? I have also been treated for migraines, which I know isn't the main problem. I have constant pressure on the back of my neck. Mostly on the right side and it feels like my right eye is going to pop right out. I also am having huge issues with my ears, I can feel my blood pressure through them, or at least that is what it feels like. It sounds like it's time to find a new Doctor. There are many listed here that have been recommended by people with Chiari. I would look for a Neurosurgeon who specializes in Chiari and also treats children. Have you tried pain blockers? I'm trying to build up my dosage to try to block the pain signals from the brain. So far I haven't seen much improvement. I know it is possible because I'm on one for pelvic pain and for three months it blocked my migraines. Now we're increasing the dosage every week in hope that it will work like the last pill did. Did your son find any relief with any of the pills? I know with some the side effects are almost worse then the pain itself. Right now I'm working with my PCP and my Pain Doctor. My Neurologist ran out of ideas over a year ago, has given poor advice, and refuses to diagnose me with Chiari so I stopped going. Also, there are many here that had to travel to find a Doctor that specializes in Chiari. Although it is not ideal you may want to look into that possibility. I wish I could be more helpful, I'm struggling with a massive migraine and not sure if should go get checked out. Hang in there and please keep me updated. Don't forget to take care of yourself as well.
Sarah
Sarah Pugmire Baron said:
Chrissy,
There is nothing worse than watching your child be in pain! I am so sorry that he is so miserable. Are you still in contact with is Neurosurgeon? Also has he had any scans done recently to try and pinpoint where or what is causing pain? I'm not really super informed about syrinxes. I do love the site conquerchiari.org as it covers a lot of different subjects including a case study done about tracking syrinx improvement. I would recommend checking the website as there is a lot there about syrinxes. I wish I could be of more help, I'm hopeful as the day goes on you will get some answers from people that have had the surgery. I do have a friend that had the surgery and it was very successful. Sometime after the surgery he was rear ended which caused his syrinx to burst. Did you son get any relief after the surgery or has it been constant pain since? I would recommend getting a MRI done and also maybe a CINE MRI as well if you haven't already, like I said before to see if they can tell what is going on. Again, I wish I could be more helpful. My heart reaches out to you because I am a Mother as well and it is heartbreaking when are children are in pain and we are helpless to give them relief. Please keep me updated on how he's doing and how YOU are doing as well. If there is anything I can do let me know. Take care of yourself and I hope your son finds relief soon!
Sarah
None of the meds have worked thus far. He is never without a headache, loud ringing in his ears, visual disturbances, he feels dizzy and weak most of the time and has numbness and weird sensations in his arms. His headaches are worsened with coughing, sneezing, bending over. He’s started having problems breathing since August. The PCP checked his lungs and said they are perfectly clear and is unsure why he’s having so much difficulty breathing. Aside from all of the emotional and mental issues he’s having increased problems with focus, memory, and comprehension. He is an incredibly gifted kid who loved to read, had A’s & B’s and set records for state test scores. Classes that he had 100% in last semester he now is failing. He says he can’t understand anything they’re talking about or anything he reads anymore! We’re seeing a NS tomorrow who came recommended to us from some other chiarians who have had good results with him. I’m just hoping he will listen and be concerned. If he’s not, I guess we will just have to hit the road again to find someone who will listen! I promised Ben one really bleak night two weeks ago that we wouldn’t stop until we found someone who could make the pain better and I’m going to keep that promise!
Chrissy said:
Thank you so much. He’s been symptomatic ever since surgery with only a little improvement with a couple of his symptoms. Things got even worse when he hit puberty and have been going down hill even faster since Christmas. They did an MRI last week and we see a new neurosurgeon tomorrow. His original NS was little help after he did the surgery, he just considered him ‘fixed’ and that his continuing problems couldn’t be related to the chiari. He soon left the children’s hospital for another job and the other NS’s didn’t seem to want to mess with Ben. We eventually ended up taking him to my NS ( I have IH) but since he’d already been decompressed she wasn’t sure what she could do for him. Which led us to a reg neuro at another children’s hospital who was vey nice but was treating him for migraines. She tried literally every medicine she could come up with with no success. They either didn’t work for his pain or he couldn’t be on them long enough to find out if they would work b/c they caused emotional issues. She really tried, finally consulting another NS and Dr. Of pharmacology. They came up with a last resort medication plan that was also unsuccessful. So for the last year and a half we’ve been on our own. I just wish I knew for sure that it wasn’t pressure. His headaches seem just like high pressure headaches and I know the damage that can do! Now with all of his physical symptoms and pain, he seems to be having cognitive problems too. He’s really stressed and we’re really worried.
Sarah Pugmire Baron said:Chrissy,
There is nothing worse than watching your child be in pain! I am so sorry that he is so miserable. Are you still in contact with is Neurosurgeon? Also has he had any scans done recently to try and pinpoint where or what is causing pain? I’m not really super informed about syrinxes. I do love the site conquerchiari.org as it covers a lot of different subjects including a case study done about tracking syrinx improvement. I would recommend checking the website as there is a lot there about syrinxes. I wish I could be of more help, I’m hopeful as the day goes on you will get some answers from people that have had the surgery. I do have a friend that had the surgery and it was very successful. Sometime after the surgery he was rear ended which caused his syrinx to burst. Did you son get any relief after the surgery or has it been constant pain since? I would recommend getting a MRI done and also maybe a CINE MRI as well if you haven’t already, like I said before to see if they can tell what is going on. Again, I wish I could be more helpful. My heart reaches out to you because I am a Mother as well and it is heartbreaking when are children are in pain and we are helpless to give them relief. Please keep me updated on how he’s doing and how YOU are doing as well. If there is anything I can do let me know. Take care of yourself and I hope your son finds relief soon!
Sarah
He hasn’t had the cine MRI in years. The last NS didn’t want to mess with it but I’m hoping this one will. He has constant ringing in the ears, nausea, dizziness upon standing, exercise intolerance ( that’s usually when he has the drop attacks) visual disturbances (loses peripheral vision or things look all wiggly), trouble breathing and swallowing, numbness and weird sensations in his arms, and extreme fatigue. As well as cognitive issues which are new.
Beeba said:
If he has had a recent CINE MRI you may need to wait to see a ns with good chiari experience. If you are concerned about pressure I would see a neuro ophthalmologist (yeah who knew the names could get any longer!!) if there is sustained high pressure it will show in the optic nerve. A tap done on someone with chiari is safe but precautions are usually taken. Done under guided ultrasound. Does he have any symptoms other than the headache. Like dizziness upon standing or any exercise intolerance, heart racing, stomach issues? Just trying to help brainstorm. Any hyper mobility? I feel so bad for you parents. Makes it hard to stay objective.
Chrissy,
Ben is so lucky to have you as a Mom! I know it is frustrating to have more questions then answers. It may take time but you will find someone that you and Ben will be comfortable with. We’re here to support you any way we can. I know it’s so difficult and disheartening but if you persevere you will get through this. There are some great Doctors out there, the hard part is finding them. Hang in there. Also, I know Ben is miserable so staring at a computer screen is probably not his favorite thing but there a lot of teenagers on this site. It might be nice for him to connect with kids his age going through the same thing. It’s nice to chat with other people so be knows he’s not alone. And of course plenty of parents to support you as well. Let us know his things are going.
Sarah