hello everyone, thank you all for being so welcoming and just being there to help others. my 6yr old daughter was diagnosed with chiari and a syrinx just a few months ago. she does complain of headaches often, however my husband and several of his family members do suffer from migraine headaches. she also complains often of back and leg pain. we went to see our neurosurgeon last week and he told us that her chiari & syrinx was small but there. he was split 50/50 on surgery and has left the decision up to us. my husband and I are split on our decision at this time. I am reluctant to do surgery especially when the doctor is telling us that things are "small". my husband who suffers from chronic headaches and also chronic back pain is looking at it from a different point of view. he does not want to see our little girl have pain like he has been going through. how do I know if her headaches are related to her chiari or just hereditary migraines. will her leg and back pain go away if we have surgery. and I know pain is what the person says it is, but how as a parent do you interpret pain in a child. we have been trying to be very cautious as to how we explain things to her and I am now keeping a pain log to keep track of her pain. but if you have a young child you know it can be hard to determine how much is "real" and how much is "sympathy". so any helpful tips would be greatly appreciated.
I guess I have questions more than anything. My daughter almost 3 now was diagnosed last year when we accidentally found out while doing a CT scan since she ran into the door. We've taken her to a neurosurgeon to say take the wait & see approach, new scans every 2 years to monitor. She's had bowel movement issues since birth,(miralax has been constant for over a year now) constantly complains of right leg pain. Is this something that I need to look into further as being part of this too? Peds dr said her leg might be juvenile arthritis. They said to give her ibuprofen & that should be enough. I know kids put up with a lot of pain before they complain so I don't want to be doing bad by her by not getting the proper medical attention. The dr really wanted to stay away from surgery unless necessary at this young age. Is there something else that I should be doing/looking at that I'm not?
Our dr told us too that yes surgery might have to happen down the road but he tries every other option first. I
This is our experience. Take what works for you and ignore the rest ;)
My sixteen year old DD was just diagnosed in April 2013 with CM1 and a syrinx. She also has blockage on both sides of the cerebral spinal fluid to her brain. She is scheduled to have surgery in a couple of weeks (which she may not get now do to insurance issues but that is a whole different rant).
What her neurosurgeon told us is that because DD has a syrinx he would rather not wait due to the symptoms that DD is having and it is affecting her quality of life and interferes with her ADL's. Also medication is not helping with the pain of her headaches and she went from perfectly normal to where she is now in under 6 months. He said that we could wait but both DD, her father and I do not want to wait. We would rather have the surgery done now before any permanent nerve damage is done.
The neurosurgeon told us that, in his patients, 80% see a drastic improvement in their symptoms but for 20% it makes no difference at all. He also said the surgery is NOT a cure but for some it helps with the symptoms. Unfortunately he wont know which category DD falls in until the surgery is done.
We got the print-off of what to do/not do while DD was in the hospital and it says that no food is allowed (by anyone) in DD's room until it is cleared by the doctor to prevent throwing up from the smells. We were told 24-48 hours in PICU but most only stay 24 hours and then 4-6 days on the regular floor. He said how quickly DD is released depends on how long it takes the nausea to go away. He was honest with DD (but again remember she is older) that the pain can be bad and that she needs to use her voice and tell them when it is. He said for two weeks after surgery she will mostly sleep and cannot return to school until after the first check-up and at least two weeks. We're home schoolers for us that part doesn't matter but gives others an idea of recovery. He said no PE for at least 6 weeks.
Second opinions should be sought by those who are unsure if they are receiving valid and correct information from their neurosurgeon. A good doctor/neurosurgeon would encourage second opinions.
I am not sure about the constipation if it is related to the chiari or not. my daughter has the chiari but my 4 yr old son has suffered from severe constipation since about 3 months. we tried prune juice in the bottle and switched to mirilax after meeting with a pediatric gastroenterologist. he was on that for a couple of years and I wanted to try to wean him off of that because I did not want him to have to take mirilax daily for the rest of his life. I know give him a probiotic chewable tablet every day (I use pedia-lax probiotic yums) if not on sale they can cost up to $20 for a month supply. I know there are other good probiotics out there but since this one has worked soo well for him, I am afraid to try something knew. as far at the leg pain goes, my daughter complains of leg pain often as well. our neurologist said she has very tight leg muscles and in fact this is what prompted her to do the MRI and then came the diagnosis of the chiari malformation with the syrinx. we go back to talk with our neurologist in a few weeks and I want to talk about physical therapy options to help with her leg pain. the tight muscles (called spastic mucles) is related to the syrinx. my daughter does still walk on her tip-toes, has to concentrate a little more when doing stairs and seems to have coordination issues especially in dance class. now when she was 3 years old, I would have never picked up on any of this being abnormal. most girls that age do walk on their tip toes (but 6 yr olds should not) kids are also growing all the time, so I also ask myself, how much of this is related to her diagnosis and how much related to her just growing. but the biggest thing for me is that she walks just fine and to just observe her as a non-medical professional, she appears normal and walks normal to me. she does do physical therapy thru her school and they have given her stretches to do on a daily basis. maybe talk with your doctor about any stretches that they would recommend trying at home. as I do more research I am really leaning more towards just continue to monitor her condition and treat her pain with other options before we do surgery. it has been a difficult decision but make a list of all of your questions and meet with your doctor. I have over 2 pages of questions that I am taking with me to my next appointment :) hope this helps you some. nicky
Spicerack3 said:
I guess I have questions more than anything. My daughter almost 3 now was diagnosed last year when we accidentally found out while doing a CT scan since she ran into the door. We've taken her to a neurosurgeon to say take the wait & see approach, new scans every 2 years to monitor. She's had bowel movement issues since birth,(miralax has been constant for over a year now) constantly complains of right leg pain. Is this something that I need to look into further as being part of this too? Peds dr said her leg might be juvenile arthritis. They said to give her ibuprofen & that should be enough. I know kids put up with a lot of pain before they complain so I don't want to be doing bad by her by not getting the proper medical attention. The dr really wanted to stay away from surgery unless necessary at this young age. Is there something else that I should be doing/looking at that I'm not?
Our dr told us too that yes surgery might have to happen down the road but he tries every other option first. I
if you don't mind me asking, what kind of symptoms was DD having. that is scary to think that she declined that quickly over a short time. since she is 16, looking back, can you relate any symptoms to this from when she was younger. when my daughter was a baby, she had delayed milestones, like sitting and walking and she had colic. we had assumed the colic was related to the formula (so we tried several kinds) and at the time, we were not that worried about the milestones because she did reach them, it just took her longer. looking back, I know now this could have been directly related to her diagnosis. best wishes to you and to DD and thank you for sharing. nicky
OhMy said:
This is our experience. Take what works for you and ignore the rest ;)
My sixteen year old DD was just diagnosed in April 2013 with CM1 and a syrinx. She also has blockage on both sides of the cerebral spinal fluid to her brain. She is scheduled to have surgery in a couple of weeks (which she may not get now do to insurance issues but that is a whole different rant).
What her neurosurgeon told us is that because DD has a syrinx he would rather not wait due to the symptoms that DD is having and it is affecting her quality of life and interferes with her ADL's. Also medication is not helping with the pain of her headaches and she went from perfectly normal to where she is now in under 6 months. He said that we could wait but both DD, her father and I do not want to wait. We would rather have the surgery done now before any permanent nerve damage is done.
The neurosurgeon told us that, in his patients, 80% see a drastic improvement in their symptoms but for 20% it makes no difference at all. He also said the surgery is NOT a cure but for some it helps with the symptoms. Unfortunately he wont know which category DD falls in until the surgery is done.
We got the print-off of what to do/not do while DD was in the hospital and it says that no food is allowed (by anyone) in DD's room until it is cleared by the doctor to prevent throwing up from the smells. We were told 24-48 hours in PICU but most only stay 24 hours and then 4-6 days on the regular floor. He said how quickly DD is released depends on how long it takes the nausea to go away. He was honest with DD (but again remember she is older) that the pain can be bad and that she needs to use her voice and tell them when it is. He said for two weeks after surgery she will mostly sleep and cannot return to school until after the first check-up and at least two weeks. We're home schoolers for us that part doesn't matter but gives others an idea of recovery. He said no PE for at least 6 weeks.
Second opinions should be sought by those who are unsure if they are receiving valid and correct information from their neurosurgeon. A good doctor/neurosurgeon would encourage second opinions.
DD had a 'normal' childhood and met all of her milestones at the adjusted age if not sooner. She is a twin who was born at 30 weeks.
DD had a severe headache for a month that got progressively worse. She ended up in the Ped's office with her eyes covered, nausea and throwing up. She was sent for an MRI and that is when it was discovered. Her symptoms over the last six months were/are:
Severe headache. Had headaches on and off for years but never needed migraine medication until January 2013
Nausea (takes a daily anti-nausea pill). Did not have before January 2013
Tingling in her hands and feet. Did not have before January 2013
Clumsy. (tripping a lot) she did a little bit but not as bad as it is now.
Light headed when raising her hands over her head (like washing her hair. She has to sit down half-way through) started in May 2013
Neck pain. Started in April 2013
Upper back pain. Just started within the last couple of weeks.
nicky said:
if you don't mind me asking, what kind of symptoms was DD having. that is scary to think that she declined that quickly over a short time. since she is 16, looking back, can you relate any symptoms to this from when she was younger. when my daughter was a baby, she had delayed milestones, like sitting and walking and she had colic. we had assumed the colic was related to the formula (so we tried several kinds) and at the time, we were not that worried about the milestones because she did reach them, it just took her longer. looking back, I know now this could have been directly related to her diagnosis. best wishes to you and to DD and thank you for sharing. nicky
OhMy said:This is our experience. Take what works for you and ignore the rest ;)
My sixteen year old DD was just diagnosed in April 2013 with CM1 and a syrinx. She also has blockage on both sides of the cerebral spinal fluid to her brain. She is scheduled to have surgery in a couple of weeks (which she may not get now do to insurance issues but that is a whole different rant).
What her neurosurgeon told us is that because DD has a syrinx he would rather not wait due to the symptoms that DD is having and it is affecting her quality of life and interferes with her ADL's. Also medication is not helping with the pain of her headaches and she went from perfectly normal to where she is now in under 6 months. He said that we could wait but both DD, her father and I do not want to wait. We would rather have the surgery done now before any permanent nerve damage is done.
The neurosurgeon told us that, in his patients, 80% see a drastic improvement in their symptoms but for 20% it makes no difference at all. He also said the surgery is NOT a cure but for some it helps with the symptoms. Unfortunately he wont know which category DD falls in until the surgery is done.
We got the print-off of what to do/not do while DD was in the hospital and it says that no food is allowed (by anyone) in DD's room until it is cleared by the doctor to prevent throwing up from the smells. We were told 24-48 hours in PICU but most only stay 24 hours and then 4-6 days on the regular floor. He said how quickly DD is released depends on how long it takes the nausea to go away. He was honest with DD (but again remember she is older) that the pain can be bad and that she needs to use her voice and tell them when it is. He said for two weeks after surgery she will mostly sleep and cannot return to school until after the first check-up and at least two weeks. We're home schoolers for us that part doesn't matter but gives others an idea of recovery. He said no PE for at least 6 weeks.
Second opinions should be sought by those who are unsure if they are receiving valid and correct information from their neurosurgeon. A good doctor/neurosurgeon would encourage second opinions.
Nicky, I can empathize with your situation. My five yr. old granddaughter was diagnosed with Chiari and a tiny syrinx last August. She also complained of headaches off and on but they never really interfered with her playing or activity level, so we ignored them. My son in law's family also have a history of severe migraines. The MRI was ordered by her GI doctor because she threw up in the middle of the night { but only 3 times} and she would immediately be fine. The NS suspected it was due to an increase in her csf pressure. We were totally blindsided by her diagnosis. She was a healthy, happy, active and athletic child. Her NS said she needed surgery as soon as possible to prevent any problems because of the syrinx. It is a gut wrenching decision to let your precious baby have brain surgery. Only you and your husband can make that decision. In our situation it was a difficult thing to go through, but much harder for us than for our little Maura. She did do great and her 6 month MRI showed amazing results. Her cerebellum looked completely normal with no tonsillar descent and her syrinx had become a mere spot. To this day, we do not know whether to believe her or not when she has complaints. She never really seems bothered and continues to laugh and play. In our case, surgery was the right decision. Children are resilient and recover so quickly, and I hated to think of her having problems for the rest of her life. Her Ns sees no reason why she will not lead a completely normal and healthy life with no problems from this condition. Children have far better results than adults. Without surgery the syrinx would have continued to get worse and permanent damage could have taken place. God bless you in your journey and God bless your precious daughter.
Find out if she has tethered cord! My niece had 2 decomps, one at 2 years old and another @ 4 years old and she didn’t get better. She is scheduled for the tethered cord surgery in Sept. and her doc @ Duke says this should fix her for good… leg pain was her symptom leading to the MRI that found the tethered cord. I wish you the best.
Hi Nicky,
I am going through the exact same thing right now, although at age 32. The doctors have also left it up to me and said for my symptoms, surgery is a realistic option. Having said that, I wish I had found out when I was little and had the surgery then. I think really, it is about a quality of life. Why live in constant pain and fear of the oncoming pain? That's just my opinion being diagnosed 3 weeks ago.