Sorry about disappearing

[maridane]

and don't really know how long I will be back for. But I just had to say a BIG HELLO to my buds, Kathy, Lizard, Roz, how are you all doing. Kathy I have been so worried about you and you have been in my prayers every day. I hope that you are seeing much improvement since surgery. Tonya and I are trying to get our appt. set for sometime in October. Not for Decompression but for the final diagnosis on TCS. Sure looks fairly certain. Anyway, let me know how you are...
Love Marilyn

Lizard, how is my Drew doing these days? I hope that the symptoms are staying minimal at best. Also, how are you doing? Updates please!

Roz, I am here, do hear from you once in awhile and of course as always you know I am horrible at trying to sit down to the computer to answer emails. Give me 5 minutes and I am either in so much pain I feel as though I will go crazy or I can't stay awake.. Anywho, give me a holler..

Been away all because I cannot get on here for long enough to read anything let alone try to reply. Got tired of aggravating the pain and or just falling out. Don't know if the chiari is causing me to fall out or if it is the diabetes. Either way I can't stay awake long. Hope you accept my appologies.
All My Love, Marilyn

[LIZARD]

Lizard, how is my Drew doing these days? I hope that the symptoms are staying minimal at best. Also, how are you doing? Updates please!

Hello, my dear!! :D How ya been??!!

Drew is as incorrigible as ever! He was 13 on Monday, and every day, I see improvement. :)

As far as the ACM...hubby and I had a talk about that last night. We have decided to go back to my nsg to just open up dialogue about the surgery and what it might--and might not--do for him. I have run across so many parents now whose kids are dx'ed with both autism and ACM (and have my own forum now!! :D http://health.groups.yahoo.com/group/autism-chiari/), and they are confirming what I have thought for a long time--that his main issues are likely either very little autism or not at all, that the ACM is the bigger issue. The communication probs, the sensory...those are the things that improve so much in the kids who have the surg, and they are by far his weakest--much more so than other areas of development, which are near-normal and getting closer all the time.

The other big thing--especially this time of year--is his complete inability to sweat. :( :eek: Ill be honest...it scares the $h!t outta me! I will be calling my nsg to sit down and discuss it all--the good, the great, the bad, the ugly, and the unknown--re what the surg can possibly do for him. I keep hearing about how much-improved some of the kids are, and that his issues are apparently ACM-related, as these are the things that improve the most after decompression. Okay...so it isn't (as far as anyone knows) pushing against the brainstem...but what about other parts of the brain that control these things?? How much interference would it take for problems to arise?? What are the risks? (I understand there are some, believe me!) What else do we need to know? What if the surg could mean the difference between him being semi-independent at 40 and still needing to be monitored on occasion and being completely on his own at 25??!! Even if the difference isn't that dramatic, I'll bet there will be some. I just want to talk about all of it, weigh the pros and cons, and then decide what to do. Any thoughts about it all are very welcome and appreciated! :)


(((((((((((((((((((((((((HUGS))))))))))))))))))))) )))),

LIZARD :)

[Rozia]

Hi Marilyn glad to hear from you . I was home in Feb for my moms death and funeral , I should have called you . but dont have a last name . email me if you like or leave it on the PM . Take care . Roz

[maridane]

I totally understand how you feel and the NEED TO KNOW. I have thought for a few years now that there was some kind of connection between the autism and chiari, in those children who suffer from both that is. How could there not be?

I don't know that it much matters as to the size of the herniation in relation to autism symptoms as much as it is maybe in the actual malformation of the skull and placement of the brain; brainstem compression or involvement just seems to me is one of those unknown areas. We know that the brainstem controls this and that and we know that we have all these other problems when the herniation is severe and there is compression but what about how the malformation itself affects the brainstem. I know I seem to be rambling here and I am having more difficulty these days trying to tie all my thoughts together into a sentence that makes sense instead of jumping around everywhere. Sorry about that.

I think that what you are doing and the path you are taking is right on. As a parent of a child with chiari and autism you have to explore every nook and cranny. I think that is is wonderful that you have this website you are doing to bring together parents of children who are suffering from this abomination and you have to do all you can for the sake and sanity of your child. I say question away.

I love TCI but have they really done much research into looking into any kind of correlation between autism and chiari? I know they really are the best in the business but it certainly doesn't hurt to reach out to others either and to question their expertese.

Just seems to me that if someone is high functioning autistic and also has another neurological medical condition that could be helped with the effect of surgery then one must look at a surgical option out there for possible resolution to autistic behaviour. Ok, did that make any sense at all?

Well Lizard, I am done. I have typed all that I can type for today. Will have to try to get back on tomorrow to answer Roz's post. God Bless you and yours, you are in my prayers and may God guide you, your husband and Drew down a path that leads to answers and hope.
Love Marilyn

[LIZARD]

I love TCI but have they really done much research into looking into any kind of correlation between autism and chiari? I know they really are the best in the business but it certainly doesn't hurt to reach out to others either and to question their expertese.

Just seems to me that if someone is high functioning autistic and also has another neurological medical condition that could be helped with the effect of surgery then one must look at a surgical option out there for possible resolution to autistic behaviour. Ok, did that make any sense at all?


Thanks, Darlin'! :)

This is exactly what I'm trying to get across to anyone who'll listen. I know TCI has treated kids who also have a dx of autism, but how much have they actually explored why they have both and how they're connected?? If there's no relationship, why are so many of the kids getting much better with the autism-related issues after surgery?? Am I the only one asking this question??!! :rolleyes: :( UGH...:( Anywho...I'm calling Dr. R (my nsg) tomorrow, so we'll see what transpires once we see him.

((((((((((((((((((HUGS)))))))))))))))))))),

LIZARD :)

[maridane]

Keep me posted Lizard, I just know that there has to be an answer out there somewhere and as a parent I would not stop until I found it. I don't blame you one bit, and no, you are not the only one out there asking this question. I have often thought that there had to be some connection there but there just isn't enough research into this area. Heck there isn't enough research outside of TCI that is, into Chiari in the first place. Please update as soon as you hear anything. I am all ears.
Love Marilyn

[maridane]

P.S. I just know that there is hope out there for Drew.. I just know there is!