Arnold-Chiari Malformation Support Group

Sarah,

I do not need decompression yet...

but want you to keep in mind that the people with Chiari on these message boards tend to be the people who continue to have a lifelong problem with their condition, and many of them do need more than one surgery.

The ones who have a surgery and do well, they move on with their lives and are not drawn to online support groups.

So, you will see a larger amount of people on these sites with these ongoing problems.

Many problems arise when a non-Chiari expert does the decompression surgery! The problem is, some neurosurgeons do only a couple of PFD's a year, and they do a "one size fits all" approach.

Ideally, you want to be seen by a full-time specialist who does many PFDs a year, and who customizes your surgery to fit YOUR situation.

People who go to the local NS for their PFD, often end up at specialist's office needing more surgeries b/c the first surgery was not done either agressively enough, or was overly-agressive.

Often, patients need to travel long distances to get the best care.

here4ya

Sarah -

The information here4ya is passing along to you is sound. After the research I've done, the procedure the NS I saw sounded barbaric & way over extensive for what my situation may be...his surgical approach to Chiari is exactly what here4ya calls, "one size fits all." Maybe since I wasn't a guaranteed surgical prospect, he wanted to 'scare' me with his description, or maybe he was telling me what he did as a hint to the $$$ this extensive surgery would cost. If I do need surgery, I will probably not have him to it.

And our support groups usually are visited by people experiencing symptoms in the present. However, some of our community & others like it have members still hanging in even after their surgeries to aid us newbies through the rough road we face. ***Jean

Thanks for your replies! My fiance has read a lot since I was diagnosed and keeps making it sound like I'm going to get surgery and everything will be perfect and he doesn't care how much money he has to spend. I told him it's not like that; I know he just wants me to feel better. I have read that there are specific Chiari specialists and I probably will need to travel b/c at the hospital I go to I don't think there are any.

Even getting minor surgeries scares me so this is very big! It is just so hard now because I have a 4 year old and sometimes I can barely play with her and she doesn't understand what is wrong with mommy so this has me feeling very depressed. I appreciate both of your responses and help :)

How hard this must be with a little one on your lap! I always feel so badly for the young moms (it sure seems more chiarians are female rather than male) and Dads...I am older so cannot offer much insight.

Perhaps a surgery would make a major improvement in your life, Sarah. Keep open to that too. You are so blessed to have a guy so in love with you and interested enough to invest time in research. His advocacy for you is a huge blessing!!

Where do you live? I keep thinking Dr. Dan Heffez in WI; Dr. Menezes in Iowa; Dr. Barth Green in Miami are really good choices for CM specialists.

just thinking
bless you, and howdies to "Jean" too!
smiles
here4ya

PS...

really do your homework as you consider various doctors.

Some neurosurgeons might lie to you about their Chiari experience. I saw a NS last summer and asked him if he did CM surgeries. He quickly said, full of his own self, "Oh yes, I do many! Dozens a year!"

I KNOW he was lying. He works in a small town (Bend, OR) and if he were out there doing many CM surgeries, I would have heard of him before.

So, just a "heads up" about what you might be told. If there is a way to check further when you are investigating a doc, that is what I'd do. In the situation of asking how many surgeries he does per year, I would not go that route of questioning with one of the bona fide experts.

Sarah, prayers for you, Mom! You do have your hands full! But, if you need surgery, it CAN be worked out on that functional level, esp if you have such a loving fiance.

Thanks to both of you for the encouragement! I am very lucky to have such a wonderful fiance. I got married very young the first time to a jerk and didn't wanna make that mistake again. Anyway, I am near Toledo, Oh and I'm very close the Michigan border. My step-mom is a nurse at Univ of Michigan and that's an excellent hospital so she is going to check and see about the NS's there.

I would have no problem going somewhere else. I will definetely do my homework. I don't know why there are doctors that lie about it, but that is so unethical! Luckily I have learned a lot about the medical field in the last few years, and my fiance works in the medical field so he can help me out!

Sarah

The postings below is the #1 message you need to get from your "research". You want the surgeon who does these daily. I'd say #2 you need to realize, and everyone around you realize you will have to protect yourself from now on. Avoid every activity that could aggrivate symptoms. If you need a list let us know.

Last I'll tell you that my daughter was an invalid for 3 years prior to proper decompression and is now in college. The proper surgery can give you your life back, and/or at least can halt any progression. You do have to be careful for the rest of your life regardless. That is really important.

Feel like you are going to be fine because you are doing all the right things from the beginning. Best to you, Mary

Thanks noneareleft. A list of things to avoid would actually be helpful because I tried to get in earlier with my neurologist and since they rotate to other places, I still can't get in until December and they haven't called me.

I went to the gym today and did some cardio (elliptical machine) and stretching, but other than that I'm not sure what is ok. I have done yoga in the past but there are some positions that can be straining on the neck as well. Luckily, I never really do any contact sports; I don't have the energy to do much! I am just wondering about being able to do any weight machines to not lose all muscle mass in my arms and legs. Thanks :)