My husband and I are agonizing over the proper procedure for our 6 year old son who has extreme dizzy spells from his Chiari 1. We are very interested in the minimally invasive decompression that does not cut through the dura, but recognize that traditional decompression can sometimes be more effective-- but also much harder to recover from.
Are there any parents out there who have made the decision for one or the other regarding their child? Can you tell us why? Were you happy with your decision?
ANY information- positive or negative- is welcome....
Thank you in advance for taking the time to share your story with us.
Check out the resources link. The top one from Conquer Chiari seems informative. On the treatment link (I had to get there from the Conquer Chiari page, not directly from the resources list), there is a second set of links comparing treatment options. Comparison of Surgical Techniques. This suggests to me that surgeons see better results if they open the dura.
I can't offer any expertise, but I can point you to the link!
Good luck with your decision. Hopefully someone with direct experience can chime in here.
My daughter has been going through this for 18+ months. Surgery looks to be happening before 2012 ends. She is now 13 and idk if it makes decision making any harder or easier. She's too young to make all the calls, too old for us to decide everything. I have struggled and struggled over doing "the right thing" for her all this time. It's so darn hard trying to decide IF she should have surgery let alone which and how and where and imagining what will happen after. Woke up one day and just felt more comfortable with knowing I am truly doing the best I can possibly do. Since her life has become consumed by symptoms, Chiari has now taken the choice away from us now as I see it. Surgery is inevitable and I know now I can only do so much. As much as I want to make her better, I can only make very informed decisions. AND as much as I don't like it, the rest is a leap of faith...I guess no more so than deciding to bring a child into our family and the world. Maybe that was the bigger leap of faith?
May not be helpful but it's my story (or lack of one). Thinking of you and your little one. It's so, so hard.
These can be very agonizing decisions because you realize that though you make the decision, they live with the consequences. When I first began researching surgery for my daughter (then 4 yrs old), my first instinct was NOT to open the dura. Common sense is the more invasive, the more risk and complication. However, once I began reading scholarly articles from various medical and research journals, my opinion changed. Nearly all studies pointed to better long-term outcomes when the dura is opened. A fairly significant percent of patients in the studies required a second surgery when the dura wasn't opened. Based on my research and the advice of several NS (we consulted 3), we decided to allow a procedure that opened the dura. Of note too is a study that individuals that were decompressed before the age of 8 are 3 times more likely to have a positive outcome.
The recovery from surgery was not nearly as bad as I thought it would be. My daughter only complained of pain the first two days. She was in the hospital for 5 days, mainly due to vomiting. She has had absolutely no further complications. It has been nearly 2 yrs since the surgery and her recovery and outcome have been impressive. Her recent MRI from last month showed minimal crowding of the structures and nearly complete resolution of all of her syrinx, which ran almost the entire length of her spine.
I would encourage you to go on www.scholar.google.com You can search by chiari malformation, chiari decompression, or anything else you can think of. You can also filter the results to show only the most current articles/studies. Learning about the types of procedures, their complication rates, and outcomes will help you come to a decision you are comfortable with.
I am so sorry you are going through this. Our daughter had an extensive syrinx so we really had no choice but to do the intradural decompression. The neurosurgeon did tell us that there is some thought that the less invasive surgery might be effective, but that he was just that week reoperating on a child who underwent the less invasive surgery, still had the syrinx and symptoms, and now needed another, more invasive, surgery. Although our daughter's recovery course has not been smooth at all during the 2 months post-surgery, we are happy that the most recent imaging showed the syrinx to be much smaller, which is why the operation occurred in the first place. Good luck to you and your precious son.
THANK ALL OF YOU! Your responses have been infinitely helpful to us. It is so good to know that there are people who will take the time to help. I am adding a new post in a minute, because we met with the head of Duke Pediatric Neurosurgery, Dr. Herbert Fuchs, yesterday.... and now there are more questions.... :-(
First and foremost, make sure the doctor is fully competent in Chiari. Very few are. If you don't get the answers keep on searching for the right doctor. Search the net for Chiari Specialist Neurologists. I had the surgery on Feb. 6, and feel better than I have in years. I went out of state for the best Neurosurgeon, if not the best in the nation, Dr. Heffez with the Chiari Clinic of Milwaukee, Wisconsin. I finally able to sit and read books again. I had daily headaches preventing me for two and a half years. The surgery and recovery was a piece of cake. I also had spinal surgery at the same time, now that gave me more trouble than the decompression surgery.
What else did he do with the decompression? I had surgery March 12 with Dr. H. He did a laminoplasty with it and it is nothing but misery so far. My job requires me to do alot of heavy lifting, it's like torture. Like you the decompression was a piece of cake. I love Dr. Heffez, but I want to return the laminoplasty.
Deborah said:
First and foremost, make sure the doctor is fully competent in Chiari. Very few are. If you don't get the answers keep on searching for the right doctor. Search the net for Chiari Specialist Neurologists. I had the surgery on Feb. 6, and feel better than I have in years. I went out of state for the best Neurosurgeon, if not the best in the nation, Dr. Heffez with the Chiari Clinic of Milwaukee, Wisconsin. I finally able to sit and read books again. I had daily headaches preventing me for two and a half years. The surgery and recovery was a piece of cake. I also had spinal surgery at the same time, now that gave me more trouble than the decompression surgery.
You should not be lifting heavy objects. Healing is still occurring even though you feel better. I had the whole thing done, and had spinal surgery at the same time. My sister had the surgery over ten years ago and is still having dificulty, everyone is different. i am sure if you talked to Dr. Heffez, he would say no to heavy lifting for some time longer than this. Please be careful, this is your life you are dealing with.
Thanks Deborah. I see him next week for a follow-up. I currently am applying for a new position with less lifting. I'm a nurse. I work with coma and brain injured people who are very dependent. It is hard for me to change jobs. I've worked there for 27 years. I will miss it.
Deborah said:
You should not be lifting heavy objects. Healing is still occurring even though you feel better. I had the whole thing done, and had spinal surgery at the same time. My sister had the surgery over ten years ago and is still having dificulty, everyone is different. i am sure if you talked to Dr. Heffez, he would say no to heavy lifting for some time longer than this. Please be careful, this is your life you are dealing with.