Chiari Online Support Group

3 month old


#21

RK - I don't know if you are on facebook but there is a pediatric group that is a great source of support and knowledge. Conquer Pediatric Chiari. You'll find many mom's that have gone through what your going through and many with infants. It's a closed group but I can invite you. Just send me a message. We've been through 2 surgeries with my daughter at age 5 and 7 and upcoming one with my son who is three. I can't say what it is like with a smaller one but it was god send for my daughter (even thought the last one was a bit rough). Kids are really amazing and seem to have a quicker recover the smaller they are.


#22

I'll take that invite also chmom if you wouldn't mind!


#23

Sent you a message.

Toni said:

I'll take that invite also chmom if you wouldn't mind!


#24

Sorry to hear of the issues.

I just returned from an international conference, where this was a big topic of discussion.

Many have mentioned getting several opinions, which is always a good idea if possible. With a young child(generally, anyone under 16yo), it is routinely recommended to see a pediatric neurosurgeon. There is a list of MDs with interest in Chiari on this web site.

The way neurosurgeons train, we are all trained in adult neurosurgery and then, if we desire, do a fellowship(for instance, in pediatric neurosurgery).

The list of board certified pediatric neurosurgeons can be found at www.abpns.org(all are double-boarded, in adult and pediatric neurosurgery).

In almost all Chiari cases, the decision to proceed with surgery is based on symptoms....except in the case of brain stem compression, particularly in children. This is a huge red flag for pediatric neurosurgeons. while I have never had a patient with Chiari die in my practice, there are several case reports of death while asleep(central sleep apnea, in which the brain simply does not send the regular stimulus to breathe).

Look at the list on this web site, at www.abpns.org, and speak with your pediatrician about who they use locally.

It is certainly worthwhile also talking about what surgery the surgeon plans and follow-up needed. Several years ago, Boston Children's presented their re-operation rate(50% in children under 5 years of age). The issue with the younger children is that we can't make as large a decompression and the body's natural tendency is to close a hole that wasn't there is the first place. In my practice, I was able to get a little tighter number. About 80% of children under 2yo needed a second operation in the future. All that means now is to make sure you continue whatever follow-up your neurosurgeon recommends.

God bless.


#25

Hello b2wc,
I was just reading through here and it looks like you posted this to me and for some reason I never responded. There was a period of time when I was not on for a while. Anyways, I am incredibly sorry…I really try to answer everyone. Well, to answer your question, I am not working now and won’t be able to. I always wondered why I had a hard time keeping jobs and had really frustrated my husband for several years.
To some degree, the amount of headaches have lessened. That part is good. It is an oppressive lifestyle to be a slave to daily head pain. However, I still do get them, just less frequently. Since decompression, my motor skills do not seem as sharp. I am no sure how that comes into play but I know it’s there, also balance issues.

For me, I really had to get decompression because of my syringomyelia. One of my syrinxes goes from T7-about L1. Although they say it’s “small” I guess it’s only 2mm wide. Just love how they trivialize everything. They only thing I take is Robaxin (heavy duty muscle relaxer, I believe non addictive). There are several times throughout the day where there is a pinching feeling in the back of my neck, that is putting it mildly. With that too almost usually comes a headache. However, if I take a muscle relaxer, go drink a few bottles of water and just go relax for awhile and lay down, it usually will subside. I also take fiber pills. What does this have to do with my brain? I noticed things aren’t always working like they should, then I start putting on pounds. Also, I take quite a bit of Tylenol, Excederin and Ibuprofin, but I figure better that than the harsh stuff. Hope this helps, and again, so sorry for the really late response :bouquet: