Friday, August 22, 2008

Falling Behind

It's been a crazy couple of weeks, but you could probably tell that from the sparsity of my posts following my Beach series. This time of year, work really picks up for the mad rush toward the end of summer user conference, and then it drops back into a manageable groove again. During this time, it's hard for me to keep up with normal activities, much less responding to all comments. I've tried to keep up, really I have, but I've fallen far short. Believe me when I say that I've read and appreciated each word you've written. There have been a couple of major diversions this week. Read on...

We had the birthday party for The Boy on Wednesday, and he enjoyed a sampler of all of the current microbrews at our favorite local place. He settled on the seasonal stout and thoroughly relished that. He also ran out at 12:01 (yes, one minute into his 21st birthday) to buy Yuengling :-) Silly!

After going out to a bar with his friend Travis to play pool and sample several different kinds of drinks, he sobered up and got home in the wee hours. He then got up at 8:30 to go with me to Johns Hopkins for my long-awaited appointment at the neurosurgeon. I knew that I wouldn't be in any shape to drive myself both ways (because it begins to hurt within 20 minutes of getting behind the wheel), so he graciously offered to go with me and drive the return trip.

I would love to tell you that the NS gave me some kind of news, any kind of news, but he didn't. He just told me that he doesn't believe anything more than headaches are caused by the Chiari malformation (obviously disagreeing with the other 99% of the doctors who treat the condition) and that unless my next CINE MRI shows reduced cerebrospinal fluid flow, he would not do the surgery.

I've decided that either way, I'm going to get a second opinion from another doctor with more knowledge of the widespread effects of CM and with a better bedside manner. Anyone who might be plundering in my brain must charm me first. Seriously. I have to feel extremely comfortable with someone who could help or harm me.

My son, who went into the exam room with me, was also unimpressed by the doctor. He is a very good surgeon, so I hear, but he really, shall we say, pissed me off with his cavalier attitude toward my condition. Trust me. I don't want to feel this way. I have many, many things I want to do in my life that are being exceedingly impaired by the pain and limited stamina I find myself with.

Between those two days and work....I've been remiss in getting around to everyone. I'm very sorry for that, but I will do better after next week (user conference week).

I'll post as I can, but I've also taken on a side project that will take another 20 hours of my time (approximately) a week. Whee!

Peace - D


Akelamalu said...

Good to hear your boy enjoyed his birthday :)

I think you are wise to get a second opinion. Do you know the difference between God and Doctors? God doesn't think he's a doctor! ;)

SandyCarlson said...

I hope another NS will bring you insight AND compassion. You deserve both.

God bless! It's always good to see your blog.

jay said...

I would most definitely get a second opinion on that. I don't know a great deal about Chiari malformation, but as I understand it, it can cause a wide range of symptoms and disabilities. Headaches might be a part of it, but it goes way beyond that. Some people with fibromyalgia have been rediagnosed with CM and had the surgery and been cured.

Good luck! And hugs.

Jo said...

Omigoodness! Yes, definitely get a second opinion. And find a doctor you feel comfortable with. Believe me, when you put yourself in their hands, you need to be able to trust them in every way. A friend of mine told me about a doctor at Vanderbilt named Jeanette Norden. She teaches about the brain. Perhaps if you contact her, she may know of doctors who specialize in Chiari malformation.

Keep us posted!

Happy Birthday to your son. :-)

MamaGeek said...

Well I wish you the VERY VERY best. I can't agree more that getting a second opinion is the right thing to do. And a bedside manner truly is half the treatment by a doctor.

Good luck my friend.

Employee No. 3699 said...

I agree, I would definitely get another opinion. Glad your son enjoyed his birthday.

Take care~

Mental P Mama said...

What a fun birthday! You definitely need another opinion. Or two.

david mcmahon said...

Sounds like a great birthday. Good luck with the side project!

RiverPoet said...

To all - I'm filling out the paperwork to try to get an appointment at The Chiari Institute in Great Neck, NY. It takes months to get in, but it will be worth it.

Akela - I love it! Perfect!

Sandy - Always good to see you, too.

Jay - Thank you, I've heard that, too!

Josie - Thanks! I will definitely keep that as hip pocket info, in case the one in NY doesn't work out.

Mamageek - I appreciate that. Yes, we have to feel comfortable with our doctors. If we don't, I don't think healing is optimal.

E. 3699 - Thanks, he had a great birthday!

Mental P Mama - Thanks for popping over! Yeah, another opinion or two or three indeed!

David - Thanks! The project should be starting up within a week or so.

Peace - D

Lavinia said...

Yes, get that second opinion. I am glad you are taking a very informed and knowledgable approach to your health care options. All the best to you...I know there is much you want to do and I hope you are able to find the solution so that you can do it all....