Second son withCM1 Surgery or Not

[Lipper5]

My son started with bad headaches out of the blue about 6 months ago. Finally after many months back and forth with the Dr they did an MRI and found Chiari's. We met with my first sons Neurosurgeon and they said to wait about 5 weeks to see what has happened. They thought maybe it would go away. He gets a headache at least once a week to the point of tears. He has always had choking/gaging issues. He did have his tonsils and adnoids out and that was all good for a bit. But recently is getting worse. Cant even get an egg down. So my question is do you think just headaches is a reason to do the decompression surgery?


Krista

[lttutrow]

I just wanted to tell you that I too have two children who have been diagnosed. There is a post not so long ago where there was discussion about whether to go ahead with surgery or not you might find helpful.

[lcolangelo]

Choking is sometimes what they actually call a "red flag" symptom of chiari--meaning that surgery is needed. Sometimes theere can be pressure on the part of the brain that controls swallowing from the chiari--- in cases like that surgery is necessary because children can aspirate-- this was the case with both of my children that have chiari-- hope this helps-- I'll be praying for your son!

Lisa

[Lipper5]

Thank you both for your quick reply.
Lisa I have a question...how bad was the choking/gagging? He has gagging not choking. I have mentioned to the Dr about this but he kind of listened and then didnt say much about it. In fact didnt say anything about it. I told him he has always had delays in fine motor skills but he said that could or could not be related. The other thing he experiences is foot pain that cant be explained. He was seen by an ortho that said maybe he needs more exercise. He gets it mainly at night and sometimes it hurts so bad he cries and cant walk. I have not mentioned this to the Dr because I dont know if it would be related or not. We go next week for both children because the youngest one 3 1/2 is starting to have some really bad bladder issues so we may do surgery to try and drain the syrinx.

[lttutrow]

Just wanted to jump in about the foot pain. My son also had foot/leg pain, and we finally took him to a Podiatrist. He was diagnosed with flat feet, and orthotics were ordered. Not only were his feet flat, but his lower legs were leaning in because of it. She said at our last visit that he has responded more quickly to the orthotics than any other kid she's seen, yay!! In a little less than a year, his legs are straight and his foot pain has improved. Of course, he can't wear the orthotics while playing sports because they have a high lip around the edges, and so he does continue having foot pain during sports, but otherwise it's helped. On a related note, from his flat feet we found he is hypermobile in other joints as is my daughter, and that hypermobility is related to a suspected connective tissue disorder that we've not had labeled yet.

[lcolangelo]

Krista,
With my daughter-- they originally thought she had bad reflux and actually did a fundoplication-- she was continually getting aspiration pneumonias. It wasn't until after they did the fundo that they realized that she had a chiari malformation. Her problems with swallowing now are that food gets "stuck" when she is swallowing-- it's very painful until the food goes down-- sometimes up to 15 minutes. I would definelity revisit that issue with your neruosurgeon. My daughter also gets leg and arm pain from her chiari-- so your sons foot pain is definitlly worth mentioning. There are so many symptoms that can go along with it! Who do you see for a neurosurgeon? We're from Buffalo but travel to Iowa to see Dr. Menezes-- he is one of the best in the country-- my son is actually having surgery in 2 weeks there. Hope this helps a bit-- anything else I can do let me know!!
Lisa

[Lipper5]

SO we went to meet with the NS today for both boys. Logan the 7 year old with just Chiaris is being placed on a headache medicine to see if it helps. He said if his swallowing/gagging of food gets worse or the headaches increase to call. But that he will see him back in 3 months. Doesnt want to jump the gun on surgery just yet.
Aiden is having Shunt surgery next month and I try not to think about this until the time comes. I am scared but know that this Dr knows what he is doing. He has been patient with this Syrinx and now with the bladder/bowel issues he feels that now is better than later. He said he sees the red flag and we could wait 3-6 months to a year and he is most certain it will continue to get worse and not be able to fix it.
Lisa, I read your sons story and it is similar to Logan. But my ped thought I was crazy at first having to return because my son was getting these headaches out of the blue. He said that sometimes kids say they have headaches when they dont. I saw my sons face and knew he was in pain! If I didnt keep pushing the issue I dont think we would be anywhere today. He came home saying a needle felt like it was sticking in his head for a week and the school nurse looked and found nothing and my husband and I found nothing but I was so concerned because of the headaches and now this so I took him to the Dr again 3 days later and he said nothing is there probably just nothing. I decided to mention Chiaris and he said call my NS team in Hershey and ask them. And if they thought it was something he would order a cat scan. So FINALLY he did something. We are mothers that know our children and know when there is something!

Krista

[lcolangelo]

Krista,
Amen to that! When I first mentioned the increasing headaches after surgery--the PA said-- oh that's probobly just his way of getting attention-- I tried to take that patiently-- but when the headaches increased-- many a day-- and were preceded by coughing, crying, yelling, etc. I knew it was something. Luckily I have a wonderful pediatrician-- who really listens-- she spoke to the neurosuregeon and they ordered an MRI. Sometimes I feel like a hypocondriac for my kids-- but I think sometimes mothers just know when somethings not right! I'll keep you in my prayers next month--
Lisa