My daughter is 12 yrs old and has chiari 1 malformation 14mm and syrinx from her c4-c7 measuring 1cm at her c6. She is scheduled to have decompression surgery as soon as she loses 8 more lbs but recently her symptoms have taken a turn for the worse. She now has aphasia (difficulty finding words and forming her sentences correctly) , and short term memory loss. She is having difficulty remember the lessons that she does with her homebound school teacher and is scared that she will not test well because she can not remember what she has learned so far. I have discussed this with her neurosurgeon and he says that these symptoms are not chiari related…that frustrates me because everything I have read, and seminars that I have watched says that it is related. Any insight or suggestions on this would be greatly appreciated. I am so confused and upset that I can not help my daughter and I have no answers for her or myself.
Hi Stephanie
I have read your posts regarding your difficulties with your daughter. Very sad as a parent to experience. With this new turn of symptoms, it adds on another layer of concern. Yes, you are correct that Chiari can manifest in cognitive processes.
Unfortunately, it is not within your sphere of influence to convince the neurosurgeon, nor is it necessary. He has quasi agreed to perform your daughter’s surgery, and that is all that he can contribute to your daughter’s well-being. Of course, it would be nice to have him hold a hand and commiserate.
I think that what you are ultimately asking is what can you do to help your daughter, now and after the surgery. There is much that you can do by tapping into the appropriate resources.
I experience cognitive process dysfunction - before and after surgery. I spoke with and was assessed by a neuro-psychologist post surgery. I am not wholly convinced of his knowledge base, but he did say that Chiari folk have a leaning towards difficulty with DIVIDED ATTENTION not with short or long term memory. He could be wrong. What this means is that if your daughter is working on learning/retaining something for school and is interrupted with anything, what she was working on is lost as her brain had not finished committing whatever it was to memory. Functionally, I find that having divided attention difficulties is very similar to having memory issues yet can be approached in a different manner.
To address divided attention, interruptions and competing stimuli need to minimalized. This included music, TV, verbally or other wise interrupting, physical environment competing elements like a window, busy decor. A simple environment is best, ear plugs help, streamlining homework tasks so she is not thinking about what comes next. All this can be applied throughout her day to maximize the cognitive function that she does have for the day. Chiari brains get tired. This is for the now.
After surgery, I also highly recommend that your daughter undergo brain function rehabilitation through a specialized department that deals with concussions, traumatic brain injuries, brain surgeries, and brain cancer. The Chiari brain falls into this category of having an altered brain. She will need a referral. Find out now where to go in your area and how to get in there. You have a grace period right now before her surgery to set this up for after the surgery.
Do not focus on the Chiari aspect when asking as medical people get hung up because they do not know about Chiari. You might lead with Chiari as this is what your daughter has but move to asking “Where do kids who fall off their bike and breaks their skulls go to get their brains better?”. “Where do concussed foot ball players go?”. “If my kid had brain cancer and a surgery, where would she go to improve her skills”.
At the very least, I would suggest forming a relationship with a neuro-psychologist. Other parents on this site have had their kids cognitively assessed so as to diagnose deficits and set up learning supports in the school. I do put the rehabilitation first for a reason, though.
See, there is lots for you to do. Who knew? Good luck with finding the resources that your daughter needs. Be careful with the emotion levels and your tone when dealing with medical professionals. They do not like distraught mothers nor parents telling them what to do. If they do not help, chances are that they actually do not know what resources are available. Do not be curt, but ask them politely that if they think of anything that would be appropriate to contact you. Leave it at that and move on.
Thank you very much for replying. Everything that you said was VERY helpful and makes alot of sense. I have always kinda been on my own and thought I could handle every situation by myself…but this is on a whole new level. I really appreciate everyone that is in this support group. Nobody that i talk with daily seems to understand chiari and everything that goes with it so that leaves me feeling alone and frustrated. I feel a little better now that I was able to vent and have someone respond that understands exactly how I feel and what I am going through…so thank you again.
Glad to be of help. Hopefully you are able to make strides is accomplishing what your daughter needs for a successful recovery from her surgery
I have to say I am so sorry you are dealing with all that and feeling helpless. Your daughters neurosurgeon is not a specialist on this condition if he is making remarks like that and I would honestly not let him touch my daughter. It’s ok to not hire him. It’s ok to get second, third and fourth opinions. What you are finding in your research is absolutely correct. If you are able to get her to one of the known therapists you will see a massive difference in care and knowledge.
My first surgeon was someone that told me so many of my symptoms could not be caused by chiari and I was worse off after the surgery he did. He ignored many of my issues. But that’s also my experience.
A specialist will look at everything to make the right surgical approach decision.
Good luck! I know none of this is easy.
Watch this. This helped me. This is also my dr.
https://csfinfo.org/videos/physician-lecture-videos/csf-lectures-archive/thehill2018-greenfield/