Chiari Online Support Group

3 month old


#1

My son is 3 months old and was recently diagnosed with Chiari 1. It is a
Impacting his breathing and eating (sucking and swallowing). He is scheduled to have surgery in two weeks, I’m wondering if anyone else has had, or heard of, a child this young being diagnosed and/or treated for Chiari and how it turned out. Thanks!


#2

My son was born with a chiari 1 but I didn’t know until I took his first MRI ( at age 5) to see why he has a hearing loss. That’s when we discovered it. Since he was born he couldn’t nurse/swallow, every time he latched on he started gagging and grasping for air… So I just bottle fed him upright. We never did surgery, and he is doing great. He is 9 years old, a bit overweight and has a body/head tilt. He is growing nicely. Feel free to ask…


#3

God Bless…and hope to God you got a 2nd opinion. Such a big decision.


#4

I myself at this time (our children don’t have it). However I do know a woman who has three kids (two with chiari) and herself. The two children did have the surgery. I think they were around 10-12 at the time of the surgery. But they’re of course happy and health adults. I know this doesn’t help since your baby’s so little. But to have you know they got through it, and they’re living life to the fullest. I hope this gives you some piece of mind. I also know as a mother myself I can’t tell you not to worry, you’ll do that anyway. I will tell you I’ll be sure to say several prayers for him, you, and your family. Please let us know how the little guy is doing during his recovery. :slight_smile: Again many many prayers to you and your family.


#5

I agree with both of these moms below. Please make sure you’re doing your research. Not sure where you live but one of the best pediatric neurosurgeons who’s double board-certified in the state of Florida is Dr. Eric Trumble out of Florida Hospital in Orlando, Florida. He is highly recommended in the Chiari world. In fact he sees my daughter and myself.

Again we don’t know the severity of your child’s Chiari. We can only recommend that you do enough research. Have they done a video MRI of the brain? This will determine whether or not there is a cerebral spinal fluid csf blockage in your child’s brain and is the Chiari one-sided or both? Does your baby have a syrinx / syringomyelia which is a pocket of spinal fluid in the spine?

Many of us have lived with Chiari and obviously it is a birth defect. I am 47 years old and I can think back now why I had certain symptoms growing up. As a 47-year-old it was a car accident where my Chiari became A-symptomatic, in other words, I now have symptoms like pressure, pain etc. I have refused surgery and I have improved my health by going holistic with my remedies and I have seen an improvement in the past year or so. I manage the pain and symptoms pretty well with all natural enzymes etc.

God Bless you and help you through this time with your baby. If your baby is doing well overall, please take your time before you make any drastic decisions because there could be complications and it is a very invasive surgery.


#6

Thank you all for your input so far. His Chiari is impacting his breathing and eating (had failure to thrive due to lack of intake and excessive vomiting- and he now has a feeding tube), so we do need to do something about it sooner than later. He does have syringomyelia (we saw one spot in his initial MRI and having a full spinal MRI done later this week).


#7

I wish you the best of luck. My 13 year old daughter had surgery three weeks ago. She is now suffering from meningitis as a complication of surgery. Please know the signs of this in your little guy. I will not lie, the surgery and recovery so far has been extremely brutal. But, many of the Chiari symptoms she was experiencing before surgery are gone. I pray your son has relief from his symptoms, and that you have the strength and support you need to get him through.


#8

My son was 16yrs when he had the surgery…it took 3 years to finally think about doing a MRI. He started getting headaches and eighth grade and then the headaches stopped and he started getting high anxiety and throwing up with any kind of stress. He missed over 30 days of school the last semester of eighth grade, but going to a private school, they really worked with him.
They diagnosed him with IBS with anxiety! This is after going to a psychiatrist, gastroenterologist, besides his pediatric doctor. He continued to play sports but finally in his junior year he had to give up sports and kept missing quite a bit of school so he ended up finishing two classes. Finally being bedridden after Thanksgiving they finally decided to do a MRI and bingo they found Chairi 1!! We belong to Kaiser in the San Jose and chiari specialist had just been found the last years! Thank goodness! The surgery went well, but took a couple months to recovery. He tried to go to school and take some classes, but finally he stopped. He continues to be nauseous something like seasickness. High altitudes affect him flying in Planes, he still suffers from anxiety but now he’s gone off all medication! He just got his GED last May at 19 Got his drivers license this summer t at 20. He’s on disability and he takes one day at a time… when he has good days he does a lot when he has bad days he rests!
Hopefully it’s better to have Chiari show up when they’re young! Ben’s showed up because it started growing into his adolescence years!
I’ll be praying for you all with a speedy recovery!


#9

My son was also born with Chiari and Syrinx. He was finally diagnosed when he was 13mos old and had his first surgery at 14mos old. He had all the same symptoms and more. It would have killed him without the surgery. I wish it would have been diagnosed sooner, he suffered so long before the doctor would finally order an MRI for him. He had a second decompression surgery 8mos later. He had three lumbar drains, 2 meningitis infections (one of which almost killed him) and VP shunt in and out. and lots of physical therapy. I just put him back in physical therapy after a 2 year break. All of this within the first 3yrs of his life. All of this being said, he is a happy functioning little boy -now 6yrs old. I pray that your son has a fantastic outcome : ) Does your sons neurosurgeon specialize in Chiari? That is extremely important. He has a few side effects from the Chiari and surgery like random vomiting and a hyper gag reflex, his cognitive reactions are a bit slower, a little less neck and trunk mobility but doing really good. Keep positive even if things go left for a while like it did with us. We are REALLY glad we he had the surgeries. Please keep us posted.


#10

I am so sorry for your news. What I can tell you is this, just because the surgery is scheduled you can still call it off. It might be wise to go get a second and third opinion because your son is so young. It really is easy to catch an infection when changing the dressings after the surgery. Many people do, these infections do not go away easily.

I didn't get an infection, but I am an adult, and was able to lay my head still on the table while my husband had to take the bandages (that were sticking) around the diameter of my brain surgery.

Another point is, after the surgery, if he undergoes side affects, he won't be able to tell you. Also, after he gets out of the ICU and goes home that's it. Unless you are an ICU nurse that works with CHIARI patients, would you be able to tell if he was experiencing any side affects?

Also, I was sent home with a plethora of medications. Some to include morphine, I did not ask for that one. That gives you an idea of what the pain was like. I would like to think the doctor would not put an infant on morphine (I am not a doctor), but that would mean they would have to put him on something much weaker.

Here's the thing. If it was in fact life threatening, they would have had your son on the operating table already (just my opinion) I feel like I need to talk for your son because this surgery is so serious. Just some things to consider that's all.


#11

Sweet mama,

I agree with catlover72. If the surgery is not urgent and the baby is on a feeding tube then I would wait for the baby to be stronger and do more research. Also make sure this doctor doesn’t perform a few of these a year, you want a neurosurgeon that performs thousands a year and is a Chiari specialist. Be very careful some doctors may be neurosurgeons but they don’t specialize in the surgery.

On another note, I worked with medically fragile children in a nursing home & feeding tubes are not dangerous for them. In fact you need to be very cautious with the surgery because the baby is at high risk to getting meningitis which is very dangerous. I know you want your baby to be healthy and well soon. If it’s only a feeding problem, I would hold it off for some time. I’m not sure how bad the baby’s syringomyelia is which is something you definitely Want to monitor carefully.

I would suggest you contact Cathy at csfinfo.org. They are our Chiari network in the USA. They are amazing people and have helped us with research and have a list of preferred Chiari doctors.

God bless you and don’t be discouraged. Just get your answers. I’ve had four neurosurgeons in the last three years saying they wanted to do decompression surgery on me with no guarantees and I have declined. I am currently on all holistic products and I’m doing quite well. As far as your baby you definitely need to research carefully because one wrong move could mess up his future. God bless you!!!


#12



Jozy said: Hi Jozy, I can't help but really interested to read your post, may I share how do you managing your symptom with holistic without surgery..as i tried really hard but my pain is just impossible - i can't bear it..so if you could let me know about it..I would be really appreciate... I am on the waiting list for surgery because I can't put after 2 years, and with seveeral accupunture several supplements 9quit dear as wel0 its seems they help a little but, sneezingf, coughing, laughing, bending down, its just impossible..and also walking becoming increasingly imbalance for me..please please let me know how do you managing it with holistic >>>>THANK YOU

Sweet mama,

I agree with catlover72. If the surgery is not urgent and the baby is on a feeding tube then I would wait for the baby to be stronger and do more research. Also make sure this doctor doesn't perform a few of these a year, you want a neurosurgeon that performs thousands a year and is a Chiari specialist. Be very careful some doctors may be neurosurgeons but they don't specialize in the surgery.

On another note, I worked with medically fragile children in a nursing home & feeding tubes are not dangerous for them. In fact you need to be very cautious with the surgery because the baby is at high risk to getting meningitis which is very dangerous. I know you want your baby to be healthy and well soon. If it's only a feeding problem, I would hold it off for some time. I'm not sure how bad the baby's syringomyelia is which is something you definitely Want to monitor carefully.

I would suggest you contact Cathy at csfinfo.org. They are our Chiari network in the USA. They are amazing people and have helped us with research and have a list of preferred Chiari doctors.

God bless you and don't be discouraged. Just get your answers. I've had four neurosurgeons in the last three years saying they wanted to do decompression surgery on me with no guarantees and I have declined. I am currently on all holistic products and I'm doing quite well. As far as your baby you definitely need to research carefully because one wrong move could mess up his future. God bless you!!!

#13



Deanann Gilbert said:

hI dEANAN,

i UNDERSTAND FROM YOUR POST THAT YOUR SON ALREADY HAD DECOMPRESSION, EVENTHOUGH HE IS NOT ON MEDICATION, YOU STATED HE IS ON DISABILITY AND HE STILL SUFFERING , AM I RIGHT TO SAY THAT THE SURGERY DID NOT HELP OR HELP A LITTLE?

My son was 16yrs when he had the surgery...it took 3 years to finally think about doing a MRI. He started getting headaches and eighth grade and then the headaches stopped and he started getting high anxiety and throwing up with any kind of stress. He missed over 30 days of school the last semester of eighth grade, but going to a private school, they really worked with him.
They diagnosed him with IBS with anxiety! This is after going to a psychiatrist, gastroenterologist, besides his pediatric doctor. He continued to play sports but finally in his junior year he had to give up sports and kept missing quite a bit of school so he ended up finishing two classes. Finally being bedridden after Thanksgiving they finally decided to do a MRI and bingo they found Chairi 1!! We belong to Kaiser in the San Jose and chiari specialist had just been found the last years! Thank goodness! The surgery went well, but took a couple months to recovery. He tried to go to school and take some classes, but finally he stopped. He continues to be nauseous something like seasickness. High altitudes affect him flying in Planes, he still suffers from anxiety but now he's gone off all medication! He just got his GED last May at 19 Got his drivers license this summer t at 20. He's on disability and he takes one day at a time.. when he has good days he does a lot when he has bad days he rests!
Hopefully it's better to have Chiari show up when they're young! Ben's showed up because it started growing into his adolescence years!
I'll be praying for you all with a speedy recovery!

#14

cUTLOVER, i THINK YOUR POST REALLY USEFUL TO BE READ BY OTHERS, ANYWAY, DID YOU GLAD YOU HAVE DONE THE OPERATION?, HOW DO YOU FEEL NOW, ARE YOU STILL ON MEDICATION, HAVE YOU GOT YOUR LIFE BACK /, DO YOU WORK BEFORE THE OPERATION, ARE YOU WROKING NOW..HOW DO YOU FEEL COMPARE BEFORE AND AFTER SURGERY..i KNOW EVERY ONE DIFFERENT..AND I ASK SO MANY QUESTIONS,,IS JUST BECAUSE I AM ON THE WAITING LIST OF DECOMPRESSION IN 4 MONTHS TIME..SO AT LEAST I KNOW WHAT TO EXPECT I AM ADULT WHO ALWAYS LIVE IN A HECTIC LIFE AND SUDDENLY MY LIFE JUST STOPPED BECAUSE OF MY CONDITION...I CAN'T EVEN WALK PROPERLY NOW COZ OF THIS CHIARI THANKS FOR YOUR IN PUT

catlover72 said:

I am so sorry for your news. What I can tell you is this, just because the surgery is scheduled you can still call it off. It might be wise to go get a second and third opinion because your son is so young. It really is easy to catch an infection when changing the dressings after the surgery. Many people do, these infections do not go away easily.

I didn't get an infection, but I am an adult, and was able to lay my head still on the table while my husband had to take the bandages (that were sticking) around the diameter of my brain surgery.

Another point is, after the surgery, if he undergoes side affects, he won't be able to tell you. Also, after he gets out of the ICU and goes home that's it. Unless you are an ICU nurse that works with CHIARI patients, would you be able to tell if he was experiencing any side affects?

Also, I was sent home with a plethora of medications. Some to include morphine, I did not ask for that one. That gives you an idea of what the pain was like. I would like to think the doctor would not put an infant on morphine (I am not a doctor), but that would mean they would have to put him on something much weaker.

Here's the thing. If it was in fact life threatening, they would have had your son on the operating table already (just my opinion) I feel like I need to talk for your son because this surgery is so serious. Just some things to consider that's all.


#15

I will email you my telephone number and email. Feel free to contact me next week as I am traveling. : )


#16

So I haven’t been on this site for a while, but your post actually showed up in my email inbox and reading it, reminded me so much of what we have been through with our son. Our son had the decompression surgery at 20 months old. He is doing great! His symptoms included central apnea and some eating issues. Additionally, he was having seizures(this is actually how the chiari was discovered…although all the doctors say it is unrelated…but post surgery he has never had another grand mal…only occasional staring or petit mal…so I believe it is part of his picture). Our world was turned upside down in an instant, however the care we received at Childrens National Medical Center with Dr. Robert Keating made such a difference…he was amazing. He was able to create enough room by removing the vertebrae and ONLY the top layer of the Dura (sp?). This is much longer and more tedious way to do the surgery for the surgeon but has a better outcome because there is less chance of infection or leakage requiring a shunt. All said Shane was in the hospital for 5-6 days post surgery and the first two were in ICU. He was up and walking again with support by the 5th day. Dr. Keating told me that children recover from this surgery so much better than adults. Shane was not on any real big pain mess when he came home and although he received PT he was fundamentally up and hard to control since he was a toddler within a month. Today Shane is almost 5 and is doing great. He has no restrictions and we see Dr. Keating 1-2 times a year for an MRI. Shane currently has one area that they are watching closely but Dr. Keating is not concerned yet. As he grows there will always be the chance that he will need additional surgery, but we will cross that bridge if it comes…for now he is happy and healthy and Dr. Keating is his hero! I’m happy to talk to you more if you want.


#17

Hi,

I am sorry to hear about your son. I myself have Chiari and may be having surgery this year. It is a big step, especially for children. Please get another opinion.

Edited by Moderators.


#18

Sadly, Ive heard both sides of this story. People regretting surgery because there are no guarantees and others saying it helped but still living with “other” or “new” side effects. I recently had one lady beg us all not to have the surgery especially not with an inexperienced surgeon. They left her young sister like a vegetable. She would now have preferred to have monitored her pain vs loosing her sister this way. People, we need to sensitive, but we also have to be real… This is not a pinky surgery. This is invasive, in the brain, the spine then theres other risks and related issues. My girlfriend had the surgery and they accidentally hit her occipital nerve. She now lives with a new pain. For those that are managing pain, we can get trough via holistic and living a healthier lifestyle.

For those who are severe, I can understand why surgery is necessary. Just do your homework, find best doctors and ask for copies of reports, mri films and ask questions!

To my chiari family… God bless you all!


#19

As Dobrien mentioned, children tend to recover better than adults. Not sure where mommy of 3 mo old lives, but contact the csfinfo.org Foundation!


#20

TO ALL WHO ARE READING THIS

Just remember every one has different condition - what one experience might have different experience than others, we are not health care professional, but just bear in mind chiari malformations is not a DISEASE unoike hyprtension, or cardio vascular disease or diabetes type 2 or even COPD or Menigitis, Chiari just like Knee replacement is A STrUCTURE/MECHANICAL issue, it is very rare can get better by taking any supplements or doing natural - let me tell you about my experience, so that people who are reading this can make their own choice before they make a wrong decision. There are so many companies out there who are trying to market their product and trying to victimised vry vulnerable peoples , we have to be very vry careful..because if we are in a very painful situation we would like to do anything mostly if it is our love one..sometimes we can't think clearly..the reason why I wrote this..because I have been going through this. I used to work as AN EXECUTIVE/INTER GRATED HEALTHCARE SPECIALIST for a very reputable PHARMACEUTICAL COMPANY GLOBALLY, I used to see lots of my clients at the hospital, from neurologist, to Oncologist, Dermatologist to Cardiologist, Diabetologist. As A sales, it is our role to be professional and ethical, it is very unjustified when sometime the health care/sales rep being branded as to try to sale their drugs rather then thinking about their patient, they have to be Ethical..MOSTLY IN THE UK.., they have to be abide by NICE & ABPI guide line or they can be struck/terminated/sack. the guide line would be: when patient come to see the health care professional the advise would be:

1. To change their life stylfe (eating healthy - exercise - stop/reduce smoking//alcohol etc)

if that does not work

2. taking medicine - temporary only

3. Pain management (Physio, Hydro, Acupuncture, etc)

4. Last result would ; operation

SO THE BASIC FOUR HAVE TO BE APPLIED FIRST, DEPENDING ON THE SEVERITY AND INDIVIDUALITY

iF WE ALL EATING HEALTHY - DRINKING PLENTY OF FLUIDS (2 LTRS WATERS PER DAY ) WE NEED NOT DOCTORS NOR SUPPLEMENTS......

but with knee replacement, chiari, its completely different because it is defect (structure) it cannot be repaired by supplements or drug, as I have been going through it - I have different kind of anti depression medications - opiod, from oral, to gel, to patches, non of them work, (dont forget I used to sale this drugs) but because the pain is unbearable I just try everything...everything.because I DON'T WANT TO GO TO THAT ROUTE OF SURGERY..even though my neurologist had advice me there is no cure!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!, I just wont listen to them.., I keep carry on walking, stretching, I am so desperate..i spent lots of money buying lots of supplements to a very reputable supplements company from around the world cost hundreds...) slowly-slowly i reduce my drugs intake..because the drugs I took giving me side effect (remember ---the drug is only help you for a temporary period only..the longer the use of the drugs will give you side effect..PLEASE READ THE LEAFLETS OF THE DRUG ON THE PACKAGE THAT COME WITH IT). and I don't take anything now a part of magnesium oil, epsom salt, grape extract and omega 3. The pain still there but not as much..when I cough, sneezing, laughing, bend own, wooow, its killing..me... I eat healthy food, I walk 10 -15 MINUTES PER DAY.. i realized that SURGERY IS THE ONLY way for me..to make whole again..I am fed up with my condition, and I would like to have my life back, i HAVE TO GIVE UP MY EXECUTIVE ROLE TWO YEARS AGO BECAUSE OF THIS CONDITION..that is me..what I am trying to say is..please don't be vulnerable..if you think that surgery is the only..make sure you have 2 - 3 opinion before you decide to choose mostly for your love one, make sure you have NS who is specialize to do this role..ask the question such as; how many he/she has done, what is the success rate etc..how confident/she/he//etc..at the end of the day this is your health/life. MY NS told the aim of the decompression is to relief the pressure of CFS, curing the headache that is what I want, as i just can't cope with it. I hope the tingling all over my arms and imbalance on my legs can also disappear.


Jozy said:

As Dobrien mentioned, children tend to recover better than adults. Not sure where mommy of 3 mo old lives, but contact the csfinfo.org Foundation!