Aa
recent diagnosis and freaking out
Hi all,
Son who is 14 just diagnosed after a "rule out" MRI due to persistent visual disturbances he has had for quite some time. Opthamologist gave a clean bill of health. So, 7mm--more normally shaped tonsills. The MR csf flow study showed a decrease in flow. Non RN patient care person said the decrease was "minimal" but that was not the wording given on the report--just said it was consistent with Chiari 1. So, she said if it was a big problem that they would have gotten a call from Radiology straight away and that it would have been an emergency. Don't know what to think. They are setting up a NeuroSurgery consult for us.
Symptoms are:
Ongoing Lethargy and fatigue
Migraine with and without Aura diagnosed in 5th grade. These attacks are intermittent and minimal lately and can involve slurred speech and numbness.
Persistent visual disturbances---make it hard to read...flashing lights, floaters, visual snow.
Mental Fog ongoing--hard to focus, word finding and memory issues.
Anxiety
Intolerance to bright lights and loud noises
Occasional hand tremor
Occasional ringing in the ears. Had persistent ear infections until age 2 and then tubes. Produces lots of wax.
Regular headaches.
Cardiac workup due to chest pains and benign arrythmias
Breathing issues with running
As a baby:
Myoclonic jerk---looks just like a seizure...EEG was normal.
Feeding issues, gagging
Never slept
Reflux
Poor muscle tone diagnosed in grade school.
IEP in grade school due to speech issues and inattention
8th grade bad grades his final quarter as Depression has finally set in! IEP now for inattention
I am afraid of surgery but equally afraid that that the surgeon will tell us that all these symptoms have nothing to do with " The Chiari".
Any perspective is welcome as we are searching desperately for answers! We have been to 8 different types of Doctors including Specialists----but not Chiari Specialists....finally the Pediatrician ordered an MRI
SOS
We are in the Chicago area
Son who is 14 just diagnosed after a "rule out" MRI due to persistent visual disturbances he has had for quite some time. Opthamologist gave a clean bill of health. So, 7mm--more normally shaped tonsills. The MR csf flow study showed a decrease in flow. Non RN patient care person said the decrease was "minimal" but that was not the wording given on the report--just said it was consistent with Chiari 1. So, she said if it was a big problem that they would have gotten a call from Radiology straight away and that it would have been an emergency. Don't know what to think. They are setting up a NeuroSurgery consult for us.
Symptoms are:
Ongoing Lethargy and fatigue
Migraine with and without Aura diagnosed in 5th grade. These attacks are intermittent and minimal lately and can involve slurred speech and numbness.
Persistent visual disturbances---make it hard to read...flashing lights, floaters, visual snow.
Mental Fog ongoing--hard to focus, word finding and memory issues.
Anxiety
Intolerance to bright lights and loud noises
Occasional hand tremor
Occasional ringing in the ears. Had persistent ear infections until age 2 and then tubes. Produces lots of wax.
Regular headaches.
Cardiac workup due to chest pains and benign arrythmias
Breathing issues with running
As a baby:
Myoclonic jerk---looks just like a seizure...EEG was normal.
Feeding issues, gagging
Never slept
Reflux
Poor muscle tone diagnosed in grade school.
IEP in grade school due to speech issues and inattention
8th grade bad grades his final quarter as Depression has finally set in! IEP now for inattention
I am afraid of surgery but equally afraid that that the surgeon will tell us that all these symptoms have nothing to do with " The Chiari".
Any perspective is welcome as we are searching desperately for answers! We have been to 8 different types of Doctors including Specialists----but not Chiari Specialists....finally the Pediatrician ordered an MRI
SOS
We are in the Chicago area
What did they do for you for the POTS???
My Doc never mentioned testing for that........
do you have fatigue and brain fog???
Thanks for the help,
Jonata
My Doc never mentioned testing for that........
do you have fatigue and brain fog???
Thanks for the help,
Jonata
COMMUNITY LEADER
Hi...I do not remember the pain...discomfort, yes...just like having my DD...I remember frustration and discomfort, not the pain....meds can help....and keeping on the right dosage and schedule is key to the meds being beneficial.
"selma"
"selma"
We are officially off Prozac---yippiee!!!
Drug Free!
The NS said that "The surgery is very painful" any idea what it compares to???? That scared me as a parent!
Drug Free!
The NS said that "The surgery is very painful" any idea what it compares to???? That scared me as a parent!
:-) Thank You my friend both for allowing the opportunity to help and for sharing. You have done my heart good.
Thanks for your post. I find it very helpful and will try to keep fears to myself as you suggest. That is great guidance and something no one else would tell me. You are right there is a lot of stress but then it can get better!
I appreciate that you read my question and thoughtfully answered it and telling me that you would have done it earlier really gives me some perspective.
And the school help too....
Thank you Thank you Thank you---you have helped us!
I appreciate that you read my question and thoughtfully answered it and telling me that you would have done it earlier really gives me some perspective.
And the school help too....
Thank you Thank you Thank you---you have helped us!
First- I'd look into getting a tutor or homeschooling. Depending on where you live there are Charter Schools in many states now that are state funded. Using the Charter school is more akin to public school than home schooling except that you have teachers assigned rather than the parent being the teacher. Either way love will guide you be your child's advocate as with surgery 2 weeks before school it would be pushing to expect cognition of what is what let along subject them to the ruder children and risk injury. JMO
You very well may have issues after the surgery. But when done right your symptoms are much less than pre-op. In fact in my case most symptoms completely went away at this point.
Is the damage permanent? That one I don't belive anyone can really answer. Some Docs will tell you he is cured after the surgery while others will want him to have regular NL visits to monitor. I look at this way, and of course I'm not a doctor, when you cut your finger deeply, have a serious infection that gets into the nerves, rupture a disc in your back, really any injury that confines or injures a nerve does it heal? There are some alternative treatments that can help with nerve injury but there is no difineative cure for an injured nerve. So are the nerves with a chiari patient injured or just confined? Most likely that depends on the severity of the compression and or the individuals physiology. JMO
I will say this though. Desite the problems I've had since surgery [not that many but enough] if the wheels of time could be turned back and the knowledge that I have now was with me... hands down I'd have pushed for this surgery long before things go so severe.
Either way, the only thing your 14yo should see is the attitude of "we are going to make this work" no matter what it takes. And you as a parent really need to open but keep the fears to yourself. I know that's very difficult but Chiari causes us at times to not be able to deal with stress and at times our stress becomes reality to us. Thus for the sake of your childs emotional well being please continue to throw your fears here on this forum but do your best to not let them see it. Let them have all the love and everything else positive to help them grow into a positive adult.
Keep in mind though please~ Everything that I've said here is just my opinion. Hopefully it helps somewhat. :-) Don't forget to take care of you mom!
Wolf
You very well may have issues after the surgery. But when done right your symptoms are much less than pre-op. In fact in my case most symptoms completely went away at this point.
Is the damage permanent? That one I don't belive anyone can really answer. Some Docs will tell you he is cured after the surgery while others will want him to have regular NL visits to monitor. I look at this way, and of course I'm not a doctor, when you cut your finger deeply, have a serious infection that gets into the nerves, rupture a disc in your back, really any injury that confines or injures a nerve does it heal? There are some alternative treatments that can help with nerve injury but there is no difineative cure for an injured nerve. So are the nerves with a chiari patient injured or just confined? Most likely that depends on the severity of the compression and or the individuals physiology. JMO
I will say this though. Desite the problems I've had since surgery [not that many but enough] if the wheels of time could be turned back and the knowledge that I have now was with me... hands down I'd have pushed for this surgery long before things go so severe.
Either way, the only thing your 14yo should see is the attitude of "we are going to make this work" no matter what it takes. And you as a parent really need to open but keep the fears to yourself. I know that's very difficult but Chiari causes us at times to not be able to deal with stress and at times our stress becomes reality to us. Thus for the sake of your childs emotional well being please continue to throw your fears here on this forum but do your best to not let them see it. Let them have all the love and everything else positive to help them grow into a positive adult.
Keep in mind though please~ Everything that I've said here is just my opinion. Hopefully it helps somewhat. :-) Don't forget to take care of you mom!
Wolf
Does the fact that there is no cure mean that the damage done is permanent and that surgery just helps stop the progression only????
Help me understand this confusing rare but benign progressive brain impairment!!!
Help me understand this confusing rare but benign progressive brain impairment!!!
Hi,
Surgery recommended
1. posterior fossa craniectomy
2. Cranial laminectomy
3. Dural decompression graft
the word is after surgery 2 weeks before going to school---thoughts/ i just feel like it could be a long time. And I am starting to get scared. Will I get more scared the longer we wait to do the surgery? The longer you wait, the less successful the outcome i have been told.
Thoughts?
Surgery recommended
1. posterior fossa craniectomy
2. Cranial laminectomy
3. Dural decompression graft
the word is after surgery 2 weeks before going to school---thoughts/ i just feel like it could be a long time. And I am starting to get scared. Will I get more scared the longer we wait to do the surgery? The longer you wait, the less successful the outcome i have been told.
Thoughts?
Jonata,
Recovery from a chiari decompression surgery could take years- it all depends.
Every case is different, it depends on what they do, how much they do, and other circumstances like, recovery, infection, etc.
Recovery from a chiari decompression surgery could take years- it all depends.
Every case is different, it depends on what they do, how much they do, and other circumstances like, recovery, infection, etc.
OK for a 14 year old they told me a 2 week recovery---does that sound right??? I have heard up to 3 months on this website!!!!??
Hi Jonata,
Dr. Frim did not say whether or not he would outgrow this, but from reading all of the posts on this website, and from the research I have done,I don't believe this is a condition you can outgrow. I made the appointment with Dr. Frim before we pulled him from public school, or shortly after. His symptoms were much worse when he was in school due to the stress, so when we went to see Dr. Frim our son's symptoms had been much less severe. Dr. Frim said that he would not do the surgery at this time because our boys symptoms were much better, and he said to keep doing what we were doing or he could send him back to school with meds. I am not a big fan of medication so we are going to continue to homeschool for now. He did not rule it out in the future, and told us to come back if our boys symptoms got worse. This is indeed a very frustrating condition because not a lot of docs know about it or all of the symptoms that it can cause. My family doc said she could not believe he had Chiari because his headaches were more on one side, and not the typical textbook Chiari headache. She also never heard of Chiari causing insomnia, so it is sad when you have to prove your case to your own doc.
So many here have been through the same things that we have experienced, and offer much encouragement and kind words. I truely believe I would not have gotten through the DX process if it were not for all of the kind people on this site.
My son had full spine MRI, CINE MRI, MRI of brain, and CT.
I hope you have luck with Dr. Frim, and will be here to listen if you need me.
Blessings, Barb :)
Dr. Frim did not say whether or not he would outgrow this, but from reading all of the posts on this website, and from the research I have done,I don't believe this is a condition you can outgrow. I made the appointment with Dr. Frim before we pulled him from public school, or shortly after. His symptoms were much worse when he was in school due to the stress, so when we went to see Dr. Frim our son's symptoms had been much less severe. Dr. Frim said that he would not do the surgery at this time because our boys symptoms were much better, and he said to keep doing what we were doing or he could send him back to school with meds. I am not a big fan of medication so we are going to continue to homeschool for now. He did not rule it out in the future, and told us to come back if our boys symptoms got worse. This is indeed a very frustrating condition because not a lot of docs know about it or all of the symptoms that it can cause. My family doc said she could not believe he had Chiari because his headaches were more on one side, and not the typical textbook Chiari headache. She also never heard of Chiari causing insomnia, so it is sad when you have to prove your case to your own doc.
So many here have been through the same things that we have experienced, and offer much encouragement and kind words. I truely believe I would not have gotten through the DX process if it were not for all of the kind people on this site.
My son had full spine MRI, CINE MRI, MRI of brain, and CT.
I hope you have luck with Dr. Frim, and will be here to listen if you need me.
Blessings, Barb :)
Hi Barb,
Thanks for sharing. I think the Neurosurgeons have to walk a fine line between doing too much surgery and then not enough. Chiari seems to be tough that way. I guess it stresses a parent to think about the cost of yearly MRI's for the rest of our kids lives---expensive to say the least and the suffering---quality of life issues as you talked about. Did Dr. Frim think that surgery would not help your son's symptoms at this point or was he just putting it off???? Sometimes I wonder if it would be different if it was THEIR child not sleeping and not able to go to school. I am very sympathetic to your situation. It is good to get the tips on Frim since I am considering talking with him. I would send our info however I have not gotten full spine MRI and that is also what he wants to see. I guess stress does have an impact on just about every physiological problem...it is frustrating this Chiari!
Did Frim say your son could outgrow it when he is done growing?? Which tests did you have run??
Thanks for your perspective
Thanks for sharing. I think the Neurosurgeons have to walk a fine line between doing too much surgery and then not enough. Chiari seems to be tough that way. I guess it stresses a parent to think about the cost of yearly MRI's for the rest of our kids lives---expensive to say the least and the suffering---quality of life issues as you talked about. Did Dr. Frim think that surgery would not help your son's symptoms at this point or was he just putting it off???? Sometimes I wonder if it would be different if it was THEIR child not sleeping and not able to go to school. I am very sympathetic to your situation. It is good to get the tips on Frim since I am considering talking with him. I would send our info however I have not gotten full spine MRI and that is also what he wants to see. I guess stress does have an impact on just about every physiological problem...it is frustrating this Chiari!
Did Frim say your son could outgrow it when he is done growing?? Which tests did you have run??
Thanks for your perspective
Hi Jonata,
I too have a 14 year old boy who was dx'd this past year with Chiari. He has been having symptoms for sometime now. He was having terrible headaches, mostly in one side of his head,neck and shoulder pain, and terrible insomnia. Finally our family doc ordered a CT and then an MRI and it showed that he had Chiari. We then took him to a peds neurosurg, and he did another MRI. The neurosurg said based on the 2nd MRI he did not have Chiari. We were so frustrated, and did not know what to do next, as he had been having all of these symptoms. I had been on this site and had posted about my son, and I received great advice.
It was then that I sought out a true Chiari specialist, and found Dr. Frim in Chicago.
We traveled from the Detroit area to see him. Dr. Frim confirmed that our son does infact have Chiari, but did not feel that he needs surgery at this time.
Before we went to see Dr. Frim we had pulled our son out of public school and started homeschooling him because he was not able to function on only a few hours of sleep. This way he was able to get the rest he needed and it cut down on his stress level as well. Within a couple of weeks, his symptoms got alot better.
Dr. Frim said that we could send him back to school, and that he could medicate him for the headaches, or continue what we were doing. He said that stress definitely can make his symptoms worse. We decided to continue what we are doing.
It does not mean he will never need surgery, but we are happy to put it off for as long as we can.
I have confidence in Dr. Frim's advice, and we are so happy that we made the trip.
One thing I do want to mention is that he is a bit hard to talk with. Not that he isn't good, just a bit of a nutty professor type, and very intelligent.
Good luck and many prayers for you and your son.
Barb:)
I too have a 14 year old boy who was dx'd this past year with Chiari. He has been having symptoms for sometime now. He was having terrible headaches, mostly in one side of his head,neck and shoulder pain, and terrible insomnia. Finally our family doc ordered a CT and then an MRI and it showed that he had Chiari. We then took him to a peds neurosurg, and he did another MRI. The neurosurg said based on the 2nd MRI he did not have Chiari. We were so frustrated, and did not know what to do next, as he had been having all of these symptoms. I had been on this site and had posted about my son, and I received great advice.
It was then that I sought out a true Chiari specialist, and found Dr. Frim in Chicago.
We traveled from the Detroit area to see him. Dr. Frim confirmed that our son does infact have Chiari, but did not feel that he needs surgery at this time.
Before we went to see Dr. Frim we had pulled our son out of public school and started homeschooling him because he was not able to function on only a few hours of sleep. This way he was able to get the rest he needed and it cut down on his stress level as well. Within a couple of weeks, his symptoms got alot better.
Dr. Frim said that we could send him back to school, and that he could medicate him for the headaches, or continue what we were doing. He said that stress definitely can make his symptoms worse. We decided to continue what we are doing.
It does not mean he will never need surgery, but we are happy to put it off for as long as we can.
I have confidence in Dr. Frim's advice, and we are so happy that we made the trip.
One thing I do want to mention is that he is a bit hard to talk with. Not that he isn't good, just a bit of a nutty professor type, and very intelligent.
Good luck and many prayers for you and your son.
Barb:)
My doctor was a doctor named Dr. Gerald Grant- he is wonderful! If you could somehow travel to NC, I would totally recommend him. The Duke Medical Center is just as good as Johns Hopkins. It covers Anthem- if that's the insurance you have. AND it doesn't take as long to get an appointment.
I had a CSF flow, it was irregular when I was laying down, and when I leaned back, but it was normal when I was normal. I had an MRI of my head- because they were just checking for something structurally wrong; but it was there.
An article on POTS syndrome (it's a mayo article):
http://podcasts.mayoclinic.org/2008/04/23/postural-orthostatic-tachycardia-syndrome-pots/
I had a CSF flow, it was irregular when I was laying down, and when I leaned back, but it was normal when I was normal. I had an MRI of my head- because they were just checking for something structurally wrong; but it was there.
An article on POTS syndrome (it's a mayo article):
http://podcasts.mayoclinic.org/2008/04/23/postural-orthostatic-tachycardia-syndrome-pots/
Perhaps it's a matter of who dx the problem. But the way it was explained to us you can have unimpaired [normal], partially impaired or impaired flow. Another Dr explained it as communicating, partially communicating or non-communicating. The partially communicating simply means that you do have flow but the return flow is impaired and can cause problems not quite as severe as an impaired flow but non the less it can cause very similar symptoms.
In my case the Dr looked more at the degree of compression as the stem itself was being compressed due to multiple problems so perhaps this dx is different?? I don't know but understood it to be the same.
Wolf
In my case the Dr looked more at the degree of compression as the stem itself was being compressed due to multiple problems so perhaps this dx is different?? I don't know but understood it to be the same.
Wolf
COMMUNITY LEADER
Hi..sorry I didn't get back to ur question b4 this...but u asked about CSF flow-"How much of an issue does the flow have to be to be considered for surgery? "
Well I think it needs to be impaired ...it can flow and only sometimes block...they also look at symptoms as well and if benefits of surgery out weigh the risks.
"selma"
Well I think it needs to be impaired ...it can flow and only sometimes block...they also look at symptoms as well and if benefits of surgery out weigh the risks.
"selma"
Thanks to all of you that have sent me emails. It has been very helpful and I wish I could help others-----I am hoping to someday.
In the meantime I wish everyone
ALL BEST!
Jonata
In the meantime I wish everyone
ALL BEST!
Jonata
Wow! Thanks for all the info. Glad to hear things have gone so well for you!
Who did your surgery???
I am going to check into a Dr. Frim in Chicago and a Doc in WI named Iskandar
I will check into POTS---never heard of it!
Thanks again as your info is so helpful!
All best
Who did your surgery???
I am going to check into a Dr. Frim in Chicago and a Doc in WI named Iskandar
I will check into POTS---never heard of it!
Thanks again as your info is so helpful!
All best
Jonata-
I am 14, and I had the surgery in February. I am glad I did!!!
I had a 9mm chiari and my symptoms were severe debilitating headaches, blackouts, and sleep issues. I had also had sinus problems since I was a little kid. (I had had the sinus surgery for the headaches, but it turned out to not work, so we went back to the neurologist). I have also been diagnosed with POTS syndrome (your son might have that- it's a common thing to accompany a teenager with a chiari) Has your son had a tilt table test?
My neurologist told us "there was nothing we could do about it and to look into other things." Well, we went down to the Duke medical center in Durham, North Carolina and consulted a neurosurgeon specializing in chiaris. He said there was no reason to not have the surgery.
So I had the surgery (a decompression, removal of a ligament, and to shave down some bone), and while I am still having headaches, they are slowing getting better. The neurosurgeon says that though it is uncommon to have headaches this long, he has seen it before.
I recommend to not only consult a neurosurgeon, but to opt for the surgery.
Also, if your son is still having troubles in school once school starts this fall, I recommend getting a "homebound instructor." I don't know if the Chicago schools offer this, but it is great for kids who can't attend school because of illness. This program is when a teacher comes to your house and teaches your child two hours every day. It's like homeschooling, but you don't have to teach or pay for it.
Also also, physical therapy and swimming has helped me immensely- it might help your son too!
Good luck!
Love,
Emily
I am 14, and I had the surgery in February. I am glad I did!!!
I had a 9mm chiari and my symptoms were severe debilitating headaches, blackouts, and sleep issues. I had also had sinus problems since I was a little kid. (I had had the sinus surgery for the headaches, but it turned out to not work, so we went back to the neurologist). I have also been diagnosed with POTS syndrome (your son might have that- it's a common thing to accompany a teenager with a chiari) Has your son had a tilt table test?
My neurologist told us "there was nothing we could do about it and to look into other things." Well, we went down to the Duke medical center in Durham, North Carolina and consulted a neurosurgeon specializing in chiaris. He said there was no reason to not have the surgery.
So I had the surgery (a decompression, removal of a ligament, and to shave down some bone), and while I am still having headaches, they are slowing getting better. The neurosurgeon says that though it is uncommon to have headaches this long, he has seen it before.
I recommend to not only consult a neurosurgeon, but to opt for the surgery.
Also, if your son is still having troubles in school once school starts this fall, I recommend getting a "homebound instructor." I don't know if the Chicago schools offer this, but it is great for kids who can't attend school because of illness. This program is when a teacher comes to your house and teaches your child two hours every day. It's like homeschooling, but you don't have to teach or pay for it.
Also also, physical therapy and swimming has helped me immensely- it might help your son too!
Good luck!
Love,
Emily
Thanks for your post
It scares me that with Prozac you cannot remember anything!!!! It would be great for our son not to take anything but then I worry about depression setting in again. Maybe it will not. None of the meds really seem to help him...ie anti anxiety anti depressant OR ADD. Life has really been a struggle for him. We have an appt on the 30th of August
It scares me that with Prozac you cannot remember anything!!!! It would be great for our son not to take anything but then I worry about depression setting in again. Maybe it will not. None of the meds really seem to help him...ie anti anxiety anti depressant OR ADD. Life has really been a struggle for him. We have an appt on the 30th of August
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