How do you decide? Surgery or not.

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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How do you decide? Surgery or not.

Postby zebradee287 » Wed Apr 22, 2009 8:14 am

My son is 5 years old. He was dx in February with Chairi 1, 12-15 mm herniation, csf flow blocked. We recently had all the tests and saw many Doctors. We finally saw Dr. Scott At childrens hosptial in Boston. He says my son has the real deal chairi but nero exam is normal. He said he would operate if we want but its our decision. He said for us to go home and think about it. Ask ourselves if the headaches alone are bad enough to warrent surgery. If we decide not to he will recheck in one year to make sure he hasn't developed a syrinx.
My question is do most people wait?
Why wait for something worse to develope?
Will his chairi change with age?
The Dr. says that studies show if children 6 and under have decompression surgery they have a higher chance to repeat the surgery later on in life.
Im so confused. Im not sure whats best for my child.
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Re: How do you decide? Surgery or not.

Postby sydney'smom » Fri Jan 08, 2010 3:40 pm

I am bumping this to the front because we are in the same situation. My 9 yr old daughter saw Dr. Di at the Cleveland Clinic this week. He confirmed that she has Chiari 1 with 19mm. Her symptom are headaches and dizziness, though they are not as severe as many who post here. She has developed a slight case of Scoliosis, which is most likely caused from her CM and will be monitored. We are scheduled to return to the Cleveland Clinic in 3 months for a full back MRI and follow up with Dr. Di, but for now it is a wait and see decision. My dd is a active child who participates in many different sports including soccer. The look on her face as we were told her different restrictions was heart-breaking. Does anyone have any advise they can give us?

9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Re: How do you decide? Surgery or not.

Postby lttutrow » Fri Jan 08, 2010 7:23 pm

My best advice is to read, read, read as much as you can before you make a decision either about whether or not to have the surgery and with which surgeon, and then listen to your own instincts. It helped me to explore the conquerchiari, asap, chiariansunite, and chiari connection international sites/videos, but also to read as many families' stories or caringbridges as I could.

For my son, I wish we had had all of the information we needed a year earlier than we did. I took our first nsgs. opinion of "these are nothing, if it later becomes a something, call me back" and thought need for surgery!! I wish I would've known to insist on that full spine MRI/Cine flow study because Keegan really suffered a long year of increasing head pain and other symptoms as we instead tried to treat the "migraines". I did not listen to my instincts sooner when he began having trouble swallowing and numbness and tingling, I asked his NL if we should be looking for a second opinion instead of insisting that we seek a second opinion. Once his second opinion nsg. saw that syrinx and decreased csf flow, we knew for sure he needed surgery. The top portion of his syrinx had already collapsed just three weeks after his surgery when he was scanned, so in that regard, his surgery has been a success!!

It's such a hard choice. I think generally speaking, if a syrinx is present or csf flow is obstructed or symptoms are progressing they usually recommend surgery. Later when my daughter was diagnosed, and her cine flow was observed to be obstructed with increasing symptoms, we decided pretty quickly to have the surgery. She was 11, and we hoped surgery could reduce her symptoms and prevent damage to her spinal cord. The nsg. said once she got in there that the base of her skull was malformed in a way not seen on the MRI that was making the posterior fossa much tighter than we even thought by looking at the MRI.

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Re: How do you decide? Surgery or not.

Postby tnajk » Sat Jan 09, 2010 12:56 pm

Have you had more than one opinion? What are your son's symptoms.

I'm going to tell you my opinion. It may not be what you want to hear but I think it's important to hear it. Especially if your child's symptoms are minor and don't interfere with school or day to day living.

My son was diagnosed with Chiari at age 3 1/2. One Doctor said to operate, the other said he didn't need it. We were baffled. In the confusion we decided to just wait and watch how he does. 6 yrs went by and he seemed to be ok. Suddenly when he was 9 he developed more alarming symptoms. He would wake up in the morning and start vomiting. He developed double vision, memory issues, dizziness and finally choking. He would choke when eating or drinking or even just his own saliva. He was missing a ton of school. At that point, we decided to look at his Chiari again. Sure enough, he needed surgery.

He had the decompression surgery 3 months before his 10th birthday. Quite honestly, it's been downhill since. He actually did well for a month, then started falling down for no reason. Spinal taps show that he developed Pseudotumor Cerebri. (Basically too much CSF fluid in the brain.) I've learned that for some reason (they don't know why yet) some people develop it after Chiari Decompression. Medications didn't work to bring the pressure down and he ended up with a shunt. Shunts come with a whole new set of complaints and issues. They break and clog. Sometimes frequently!

Now, some of his Chiari symptoms are returning and we're not sure what's going on. We're told it could be scar tissue that has built up in the area of the decompression. If that's the case we will soon face a difficult decision. Do we let them go back in??

I'm so glad we waited and had those 6 good years. He was just a normal kid. He didn't have to worry about constant doctors appointments, MRI's, Xrays, Spinal Taps. Many, many people are walking around with Chiari and don't even know it. If your child's symptoms happen to be mild, there's no sense in stirring the pot. Trust me on this!!

Now on the flip side, if your child's symptoms are not mild you really need to weigh the pros and cons of the surgery and the potential side effects. Please get more than one opinion and see a Doctor that specializes in Chiari if your insurance allows. Good luck with your decision! It isn't an easy one.
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Re: How do you decide? Surgery or not.

Postby memom » Sat Jan 09, 2010 9:41 pm

Yet another opinion...

My daughter developed terrible headaches, double vision, drop episodes, ringing ears, weak legs, neck pain and a host of other symptoms BEFORE being diagnosed with CM and SM. She was having a terrible time in school - her grades dropped from A's to F's within a few short months. She was upset all the time because no one believed she was in so much pain. Finally, after a mis-diagnosis and several months of failed therapy, we found a NS who specialized in CM/Sm and had surgery. Looking back, she had many symptoms, but we did not know they were related.

Surgery took away the daily headaches and cleared up her vision, but her leg weakness has continued to point where she needs a wheel chair when she over does it (it does not take much!) She has noise and light sensitivity and cannot tolerate normal classroom noise and bright light. Because of this we have a tutor coming to the house to teach her. She participates in activities as best she can. She is smart, very high IQ and is making all A's despite the set backs. Recently she was suffering from depression which dr's wanted to put her on medication for. That is when we pulled her out of school, and limited activities to tolerance. She is doing so much better and with no medication. She still has symptoms, but we are able to string together many more days of peace and happiness this way.

Our NS told us "she will never fit into the normal mold". Do not try to make her conform to a schedule which does not accomodate her day to day symptoms. Find out what she likes and let her do it. He was soooo right. At this point in her little life, if we can find a way to make her days bright, then we do it.

My husband and I have had to adjust to a new normal life. This has been a journey in itself. But we know that we have to do the best we can, follow our gut instinct and learn everything we can about CM amd SM. My best advice is, research, research, research and LISTEN to your child - you are her only advocate!

Do we look back and wonder, should we have waited on surgery? no, we do not. Her case was progressing so fast, we felt that if we did not step in, she would be blind and unable to walk. Every case of CM/SM is different. Teach yourself as much as you can and enjoy everyday your daughter feels good! Good luck in your journey and let us know how things go.
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: How do you decide? Surgery or not.

Postby sydney'smom » Mon Jan 11, 2010 10:00 am

Thank you for all the replies. We have had 2 opinions, one from a ped neurosurgeon and one from Dr. Di at the Cleveland Clinic. They both said that the decision is up to us. Our daughters symptoms are mild. Daily headaches which we control with advil and dizziness which is control with alavert. She does have a mild case of sciolosis which Dr Di said is from the Chiari and will most likely get worse. Dr. Di is of the opinion that eventually surgeon will be needed, the peds neurosurgeon was not as sure. I tend to be more comfortable with Dr Di. because his experience with Chiari. For now we are taking the watch and see approach. She will start up with her sports again in the Spring and we are curious to see how she tolerates the increased activity.

Thanks again for your thoughts. We wil keep you posted. It is nice to have other parents to get opinions from. Without this message board I would be lost and I would not have been so insistent on a second opinion.

9 yr old daughter with 19mm CM and 1mm Syrinx.
See Dr. Di at Cleveland Clinic and am scheduling a 2nd opinion with Dr. Frim in Chicago.
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Joined: Thu Dec 03, 2009 3:37 pm

Re: How do you decide? Surgery or not.

Postby nature » Mon Jan 11, 2010 11:59 am


My daughter will be having decompression surgery next month. One thing I have noticed is that when she is inactive, like being off for Christmas break from school and sports, her symptoms get worse. Over break she had headaches, muscle aches and slept 5 to 6 hours in the daytime and stayed up all night. Last week after getting back to school she complained of being a little sore, but nothing like over the break. I think the excerise helps, for her anyway.

Good luck with everything!

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