Hello, My 15 year old daughter has been diagnosed with a chiari 1 malformation @ 10mm. There is diminished CSF flow and they are recommending the decompression surgery for her. She suffers from daily headaches, dizziness and nausea. She misses lots of school and dance (she loves dance). She has suffered a concussion and a MRI was ordered because her concussion symptoms were not getting better, but instead worse with time. I am just concerned because the surgery has no guarantee and is also life alternating, but also the only treatment for a Chiari. Any thoughts or recommendations would be great. Currently her surgery is scheduled for November 27th. Thanks a lot.
Hi, I’m so sorry you are both going through this. I was 16 when I started getting symptoms. I would get several opinions from several Real Chiari specialists before getting surgery. It is a big deal and not every surgeon (just bc they say they can and have before) will do the surgery correctly. It is the only treatment at this time sadly but if done by a true specialist your daughter will have a better chance and a good prognosis. The reason they say it’s 50-50 is because majority of the surgeries are done by doctors who don’t know what they’re doing. If done by a true specialist the percentage of success is extremely higher. I know my first one was done by a doctor who claimed he knew what he was doing and could do it. Even said after it all went well. I declined really fast and could have died. I chose to go to a specialist that is extremely well-known in New York. Dr. Greenfield with Chiari care at Weill Cornell Medical. He saved my life!
I don’t tell you this to scare you but I wish someone would have told me before I had my first one. Remember you are her advocate, as a child, you fight for her life and hire and fire doctors as you see fit. Praying for you both!!! This isn’t easy but with the right doctor it sure can help and make it less scary.
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As a parent, I might consider pursuing concussion treatment before undergoing invasive surgery. You do not say when the concussion was. COncussion treatment is not just waiting and gradually doing more activities of daily life. It should include a lot of brain therapies, eye tracking and vision therapy, audio stuff, midline work, primitive reflexes, motor control for neck, shoulder, back, neurodynamics and more. Not everyone shows the same symptoms post-concussion. A really good assessment should pinpoint the areas of concern for your daughter. Good luck with her progress
We do have an excellent Chiari surgeon and I have actually been able to talk with 2 of his patient through a support group here in Ontario. They both had extremely successful surgeries. He is a pediatric neurosurgeon who does specialize in Chiari and is at McMaster Children’s hospital.
Thank you for all your advice and support.
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Her concussion was almost 3 years ago. We have had all types of concussion treatments. Including vision therapy and eye tracking done at the University of Waterloo binocular eye institute. Nothing seems to help with the headaches, neck pain and nausea. That is why they sent us for the MRI, to rule out other possibilities for her worsening state.
Thank you for all your suggestions, I probably should have included the time frame of her concussion and previous treatments. Just currently life seems to be passing in a blur.
Reading through your replies it sounds like you’ve done the right things, have a solid medical team, and are on the right track. Yes the surgery is invasive and the recovery is difficult. But the Chiari symptoms your daughter is having are interfering with her life already, and are likely to get worse in time without surgery. Her age will be an advantage in the recovery process. If your surgeon feels she’s reached maximum medical managent of her symptoms and wants to perform the surgery, trust in their professional opinion. Know that the first couple of weeks after will be hard, that complications sometimes happen, but the odds of success are highly in her favor. I put off my surgery for several years and even after a complicated recovery, I’m very glad I had it done and should have done it sooner. Good luck! She’ll probably be feeling much improved in 2018.
@tkbs_511 You are going to find a lot of “Pro Surgery” folks in the Chiari world. certainly what you have shared here would be reason enough for a Chiari Surgeon to do his thing, and it may well be thats what is necessary. I have been reading this for several days and just can’t go there. Your daughters concussion just doesn’t fit. Symptoms just wouldn’t take off because of herniated tonsils one day UNLESS there was something else going on or more evidence (ie syrinx) etc.
A concussion frequently results in neuroinflammation, which includes the invasion of neutrophils. These neutrophils often infiltrate the choroid plexus (CP), a site of the blood-cerebrospinal fluid (CSF) barrier (BCSFB), and accumulate in the CSF space near the injury resulting in reduced flow. Chiari surgery won’t help that.
When the choroid plexus is effected by trauma the CP produces CXC chemokines, such as cytokine-induced neutrophil chemoattractant (CINC)-1 or CXCL1, CINC-2alpha or CXCL3, and CINC-3 or CXCL2. which maintain inflammation and reduce CSF flow and the situation can continue for a LONG time. It can be treated. It can be as simple as Intravenous infusion of erythromycin (in this case as an antinflammatory to slow interleukin10) to far more complicated.
(Cerebrospinal fluid (CSF) is produced from arterial blood by the choroid plexuses of the lateral and fourth ventricles)
Now even though this is fairly recent information and is constantly changing as more study of the effects of concussion is done, your docs may have considered this, they may not have. I’d sure ask them and ask around. This is NOT something that would show up on an MRI.
What I know for sure is were it my child I’d want several opinions… (and not from Dr. Google)
TJ
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Thank you for this information. I will check with her concussion specialist and ask about this treatment. Ally did have a CINE MRI where it did show a significant blockage of the CSF flow and my understanding is this was due to the Chiari. We have had a second opinion, both from neurosurgeons. Our Chiari specialist says yes surgery after the CINE MRI and the other one says no surgery, but offers no other alternative. Everyone has an opinion and we have requested a referral to another peds neurosurgeon, but we are not sure that he will see us before the 27th of this month. Our daughter is pro surgery as she just wants to feel better. My husband and I are just really struggling with this decision and were hoping for some more insight from people who have had the surgery or decided not to have the surgery.
Recommending surgery based on a Cine MRI is HIGHLY suspect. There are numerous reasons why. But unless they did the study Vertically AND horizontally and compared the two flows, the cine is worthless. If they did both all a “positive” study indicates is that an actual flow study should be done. Now it may be different in Canada but the Cine Studies in the US were generally done by the “Chiari Centers” (most have shut down and/or docs “retired”) for the sole purpose of selling surgery and given the whole thing a bad smell.
I’ll give you some unsolicited parenting advice. MOST 15 year-olds can sound very convincing and very sure of themselves. But at the same time there are very few who think things through enough to understand what the real consequences of their decisions can be. Its not them or their parents, “their wiring just isn’t finished yet” 15 year olds with health problems are even tougher. Never met one YET who didn’t truly believe that there isn’t a solution for everything. So while you want her very involved and very informed all the way all the way along as she should be, I’d trust a mothers intuition over a teens almost every time. You are clearly a great parent, well informed and truly looking for the best for your daughter.Hang in there. BTW my colleague Seenie from also from mod support is bound to be along. She knows teen girls so ask away. She has been invaluable to me with mine (this is our second litter - grandaughters, both with severe health issues)
TJ
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Seenie here! I heard my name … I can always count on my colleague TJ.
It’s true about the teenage girls. I never had any of my own, but I did have everybody else’s. I was a home ec teacher for a lot of my career, and I also did a lot of counselling. At my advanced age, that adds up to a lot of girls!
Hang out here, tkbs, and hang in there.
That Old Seenie from ModSupport
Hi I have not logged in for a while and just saw your post. We are also in Ontario and my 14 year old has had a few chiari surgeries. Did you go ahead with surgery? If so how is she feeling?
We did go ahead with surgery. We only had it done on Wednesday. So far everything has gone as expected. She is at McMaster and recovering.
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Sounds like based on your comments that you made a very informed and thoughtful decision to proceed with surgery and I am sure the right decision for your daughter. I hope the recovery continues to go smoothly!