I am struggling with deciding wether to go through with surgery or to wait.
My son is 13 and was diagnosed last year with Chiari. He has always struggled with being accident prone and migraines. He had the MRI last year and it showed
Chiari 1 malformation with suggestion of effacement of flow through the foramen magnum. No syrinx. the herniation is 17mm.
He is wanting surgery, but as mom, I am hesitant, I don't like the idea of someone cutting on my son's brain.
We have had 2 opinions and I liked the second one better. He suggest a surgery where he cuts open the back of the skull and basically zaps the tonsils and they shrink. Then he will clean up everything and sew him back up. Has anyone heard of that before?
Any thoughts would be greatly appreciated. We live in Texas so if anyone has a doctor they just LOVE in Texas I would love to know that too. :)
I am very sorry your son has CM1. Does both NS's think your son needs surgery & you just like the second procedure better? CM is hard. What works well for one person may not for another. I am going to send this out to the Group for some additional input from parents of Chiarians and others who may have had this surgery. Please know we are here for you & your family.
We have had Members recommend these pediatric NS & Facilities in Texas:
Dr. Laszlo Nagy TX: Lubbock Covenant's Children's Hospital Neurosurgeon :
My daughter was around 13 as well and was very similar to your son. No syrinx, mm was around 9 mm, the Chiari headaches were the only symptoms. For about a year after diagnosis, we didn't do anything but try to find prescriptions that would alleviate the pain. The pressure in her head kept getting worse until, about a year later, her head pain was 24/7. I don't think I ever knew about dealing with the tonsils - that might be a fairly new method. She had a decompression, craniectomy, C1 lamenectomy. Right after that, she was absolutely fine for five years but then all of a sudden, she started getting migraine headaches, which are under control now. Nobody seems to think they are Chiari-related and she is in college now so it could be stress-related and the migraine meds are helping. Most definitely NOTHING helped when she had the Chiari headaches. I do remember that she was having increasing difficulty in focusing on her studies - the pressure in her head was just too unbearable and the quality of her life was nil.
Im an adult mom with a chiari 5mm, diagnosed this yr. I cant imagine the pain with a 17mm. I would probably look up top Chiari surgeons online for pediatrics. My husband and I have also researched surgeries on YouTube. There’s a lot of educational surgeries and some Drs film and explain what types of chiari surgeries they’re doing. My neurosurgeon here in Florida suggested some doctors are conservative and others are more aggressive. I’ve heard of them removing the brain tonsils so there are no issues in the future however definitely do your research go online and look at films to better understand different procedures and ask around. I know in the Southeast US one of the top children’s Chiari surgeons is Dr. Trumble in Orlando, Florida. Then there’s some very good ones up in Wisconsin, Dr Heffez and Colorado, Dr Oro and Michigan there’s a top pediatric chiari female surgeon named Dr Holly Gilmer. I hope this helps. Please feel free to email me or anyone on our site for info. Dont be afraid just ask a lot of questions, ask how many of the decompression chiari surgeries the surgeon conducts per year. Very important. If a good dr is too far ask them for a recommendation in TX. Pick the best for your child and not necessarily the closest. Thats what I would do. Im in Florida. If I can help, feel free to email me. Dont stress, have faith! God bless you!
Wow, I am always so humbled to hear the Chiari stories from a parent's perspective. You must be so strong. I had my surgery on Thursday. It was a 10mm drop, so i had a posterior fossa decompression with an autologous duraplasty (where they use the tissue from my skull bone to make a patch to enlarge the area), laminectomy ( removal of the C1 bone - to make more room), but no tonsillectomy ( my second opinion NS suggested it, but my own surgeon did not. I think that surgeons have different opinions (as mine did), so keep digging up all information - maybe go back to the surgeon to ask just about tonsillectomy. All the best!
that was part of Ryan's surgery. they "shrank" his cerebellar tonsils so they wouldn't be as herniated, he only had an 8 mm herniation. I am not a parent so I can offer no advice on that except to say that if he is suffering with migraines, in my opinion, and some will probably disagree, you should support him if he wants to try the surgery. I also think you should pray with your son and let God direct you. I don't want to come across as a religious nut. If praying isn't your thing then that's okay too. Ryan and I were not praying people and were not even sure what we believed when he was diagnosed. Over the last year we have come to believe very strongly in the power of prayer and I think that God uses everything for a reason. If this doesn't apply that's okay. I hope i have not offended you. My thoughts are with you, I can't imagine how hard this is and will be for you.
I know this is a really hard decision to make as a Mom. I strongly agree with Jozy about educating yourself as much as possible about different techniques and, most importantly, what kind of success rates are associated with those techniques. I am 3 years out from surgery. I had a significant herniation, reduced CFS flow, and a large and growing syrinx. Oddly enough, I NEVER had any headaches but was diagnosed because of neuro symptoms related to the syrinx. This is not the norm but also not uncommon. My point is that I would definitely do something if your son’s flow is impeded because otherwise he will eventually develop a syrinx which can be quite serious. My surgeon at Duke has a very strong track record of success with decompression, C1 removal, and duroplasty. He did not think it appropriate to do anything with the tonsils, in my case at least. You really need to address the constriction issue carefully and completely the first time around so that you don’t have to go back for another surgery down the road. If you look at the long-term outcome studies, those surgeries that include duraplasty have a better long term success rate, in general, that those that don’t. In addition, because your son is not done growing, that future growth needs to be factored in as well.
Just as a point of clarification, decompression, etc. is NOT BRAIN surgery. The brain itself stays completely the same and is not cut in any way. If he has a duraplasty, it is the dura ( the outer sheath around the brain) that is opened, NOT the brain. This is a very common misconception that a good NS will quickly dispel. So, while there are surgical risks as with any surgery, it is not in any way comparable to actually having brain surgery. This should be comforting to you!!!
The recovery from surgery can take a while so I would try to do whatever has the highest chance of LONG term success so that he doesn’t have to go through it more than once.
I think the suggestion to get yet another opinion from a chiari specialist in children is a very
good idea. Two other names for you to consider are Dr. Gerry Grant and Dr. Fuchs at Duke, a top notch neuro program which is also the home of extensive research into the genetics of Chiari.both of these doctors specialize in Chiari and mainly see children.
I will keep you and your son in my prayers. It sounds like you are a great Mom so hang in there and take the time to study up some more before you make a decision.
I forgot to mention that my daughter did not have duraplasty. Instead, the dura was scored. I seem to remember that having a duraplasty has the potential of causing problems and the pediatric neurosurgeon strongly felt that it was not needed in my daughter's case. I think he had done studies on the pros and cons. It was endoscopic surgery - not sure if all surgeons are - but when it is endoscopic, recovery is quicker.. As everyone is saying, you will need to do your due diligence.
Hmmm..I had always considered it brain surgery but I see your point, it's not. Thanks for pointing that out, Kate!!
I really like Dr. Jimenez in San Antonio, TX. I am scheduled to have decompression on Nov. 4.
I know as a parent it is difficult to authorize surgery on your "baby." I have a 10 year old who had a brain tumor removed 5 years ago and an 18 year who had complete shoulder reconstruction this past February. You have to go with your instincts and do your homework.
I will send out some good vibes and well wishes for you and your family.
Kirby, all I can do is share my experience and point of view. I understand your son wanting the surgery. When I found out that I had Chiari I couldn’t find a surgeon fast enough. I was ready to travel anywhere to have it done. Yes, the surgery has risks (as do all surgeries)and not all decompressions end with an improvement of symptoms (although statistically most of them do). I had my tonsils shrunk - and I guess I wouldn’t know otherwise, but I don’t miss them! My memory and motor skills have improved since surgery. To me, finding the best surgeon is the most important decision. Has this surgeon performed enough surgeries to be considered a specialist? Does this surgeon have a high rate of complications post op? I get that you want to protect your son from anything that could cause him pain, but I think he’s old enough to know he’s had enough. If he wants the surgery I say put your energy into finding the right surgeon. Best if luck to you and your son!
I live in Texas, the doctor that helped me so much was Dr. Rob Parrish, he is with Methodist Hospital in the Medical Center in Houston, he works with Chiari patients and has a lot of experience. My primary doctor used to be an anesthesiologist and worked with many doctors, when I began having issues with numbness, pain, etc. she said he was wonderful and wanted me to see him, we thought it was a bad disk or pinched nerve. My symptoms progressed rapidly over time, but he immediately knew this was my problem.
I had surgery less than 6 weeks ago and feel like I have my life back. I would recommend him in a heartbeat.
I was afraid at first, but the more I learned and from others feedback, I felt comfortable knowing if I wanted to get better, this was the step, that took a lot of fear away!
I am so thankful to have found this forum to help me in finding any information that might help me in this.
Yes, we are a praying family. We have been praying for wisdom in this decision and comfort for Espen until we find the best option for him.
I really do thank you for all your thoughts on my question.
Has anyone heard of the type of surgery where they cauterize the tonsils and they shrink. I can't find anything on what it is called. I would like to educate myself on that surgery. So I can prepare Espen for what he can expect after surgery also.
My tonsils were cauterized during my decompression. My surgeon, Dan Heffez, said he does all of his decompression that way to keep the foramen magnum free from crowding.