Tuesday, November 25, 2008

An Appointment and Baby's Coming Home!

First of all, the really good news. My laptop is ready to come home. Apparently she made it through the transplant surgery and is as good as new (so the Geniuses say). Tomorrow hubby will be off to the land of expensive real estate, fur coats, and designer clothing (Bethesda) to pick her up. Hopefully this is the end of her ailments, and she will live to a ripe old age at my side...er...front...lap?


Second, I finally got an appointment* at the Chiari Institute in Great Neck, NY, for January 25-26. Now is when I start sweating bullets about the cost; you see, not only will I have to pay for transportation up (Amtrak, in my case) and hotel, but I will also have to shell out ~$500 that day. Most of that will not be reimbursed by my insurance. Then the tests (done on day one) will be ~$1000 or more. Yikes! Not to mention, if they want to operate on my brain... There are out-of-pocket caps on my insurance, thankfully, but this will still hurt in more ways than one.

There is much to be thankful about this Thanksgiving. I plan to post a list of those things on Thursday, but just for starters? My laptop will be home tomorrow, and I'm going to get my head examined by the very best doctors in the country for my condition. For those of you who thought I needed to have my head examined, you'll be glad to hear it.

And now? Back to your regularly scheduled program....Peace - D

*For those who haven't been following my blog for very long, I have a congenital condition in my skull known as Chiari Malformation Type I in which the bony area at the base of my skull is malformed and causes crowding of the lower brain structures. The number one symptom I have is pain -- really bad pain. I also sometimes lose feeling in the left half of my body, have balance problems (particularly bad in cold weather), and have central sleep apnea, in which I simply stop breathing many times every night (up to 18 times an hour). To top it off, they think I also have a concurrent condition - tethered cord syndrome - in which the bottom of my spinal cord is abnormally attached to my spinal column (whereas it should be free floating). That is a whole 'nother surgery. All of this is going to be examined and evaluated when I go to NYC. One of the things for which I'm most grateful this year is the group of local people I've met who have this condition, many of whom have already gone through brain surgery. If I have to do the same, they will be instrumental in kicking my butt and getting me to go through with it.

21 comments:

Lavinia said...

Oh River poet! What a condition. I don't like the look of that medical diagram. But then, I don't like the look of any medical diagrams. I can see why pain would be present. Whatever is there, as you say is crowding and causing pressure, pressure=pain?

You'll undoubtedly feel some trepidation starting off your new year facing the unknown....I'm glad you've found a group of people who have been there/done that/going through it now.

Here's hoping you get through it with spirit and optimism and blessed relief from the pain will be the outcome....

RiverPoet said...

Lavinia - Thanks, my friend. I am optimistic, no matter what happens. Life is good. And yes, pressure=pain. Plus, pressure on nerves? Not pretty.

Peace - D

Marty said...

I will keep you in my prayers.

Ruth D~ said...

Didn't know all that . . . and would never have guessed from your upbeat, perky nature. I wish you well, will keep you in my prayers . . . and will wait to hear the good news after you return home.

Send a bio pic . . . don't forget when baby comes home. :>)

® ♫ The Brit ♪ ® said...

Hi River Poet,
As I am fairly "new" here I also didn't know about your condition... I hope it all goes well! But the costs! My God, I guess Michael Moore's docu "Sicko" was right about the health services there!
I wish you all the very best! x

And as for your baby.... I'm so pleased for you! I bet you can't wait to have her in your arms again! I hope all her new internal organs work wonderfully and that her body and immune system accept them without any problems!
Big Hug and a virtual cup of coffee for you dear friend! x

the walking man said...

I detest ins companies almost as much as I hate paying them for contracted services they always find a way to make the policy holder pay for a significant portion of the medical services provided.

BUT...It is good news you have your appointment in Great Neck, RP. I pray they are able to make your head as well as the techies (fingers crossed) made your laptop.

Ever onward and upward.

Jay said...

How funny that the specialists for Chiari are in Great Neck! It couldn't be more apposite unless it were called 'Base of Skull'! ROFL!

I imagine you are full of trepidation for many reasons, but I'm glad that you have this opportunity to be seen by the best, with some prospect of an op to give you relief. I wish you the best of luck - I hope it all goes well!

Try not to worry about the money too much. Your brain is far more important than any number of dollars. ;)

Jay said...

Oh, and I meant to say how happy I am for you that your baby is fixed!!

Maggie May said...

Glad the baby is fixed and that it will grow up & have many years left!!!!

Sorry to hear about all the expense that will be incurred having these tests for your condition, Chiari.
We do grumble over here about The National Health Service..... but we take so much for granted. Mind you, we might not have the tests for the condition over here. Not sure about that.
Probably have to wait for years.

Moannie said...

I am amazed all over again. When I first read about your condition on your blog I googled it, so I had some idea of what you were going through. I had not heard of it until an episode of Extreme Makeover Home edition, when they did over a hose for a woman and her three daughters, all of whom were Chiari sufferers.
I agree with Maggie May, and cannot understand why America resists what they call Social Medicine, as if it is the downward slide to Communism. NO-ONE IN A CIVILIZED SOCIETY SHOULD BE IN PAIN OR DIE BECAUSE THEY CANNOT PAY FOR TREATMENT.

Please know that I am sending you my thoughts-I cannot pray, that does not mean I don't believe in the power of love and goodness.

lace1070 said...

So glad you got an appt with TCI ~ you will be in good hands there ~ just breathe ~ I am geaded down for my decompression there on 12/3 ~ let the healing begin! Have a happy thanksgiving ~ hugs ~ Lace

Mental P Mama said...

I did not know about this condition. I hope they can help you, though, and I cannot believe your insurance will not pay for it. I wish you a wonderful Thanksgiving!

Hilary said...

I'm glad you were able to get an appointment. I hope that all will work out wonderfully for you. Your upbeat nature certainly works for you. You're an inspiration. I'll keep thinking best thoughts for you.

Have a wonderful Thanksgiving. Enjoy your family, your meal and your laptop! ;)

Cloudia said...

Intention is a cause
and lots of good wishes and intentions surround you from all of us - your friends!
We love your words and your heart!
Aloha from Waikiki, Dear-

Leslie: said...

Well, first off I'm glad your baby is coming home soon - it's always a worry, isn't it? lol

Second, I can empathise with your pain. Yours is in the neck region while mine is in the lower spine. I'm scheduled for back surgery on Jan. 13, when the surgeon will ream out my spinal column and get rid of all the bone spurs in there (called stenosis). Then he'll remove 2 more discs (one was removed over 20 years ago). Then he will realign my lower spine and drill 3 pins in place and hold them with pins. I will have to wear a brace for 3 months when in upright position or sitting, but hopefully it will relieve the pain and weakness in my back and legs.

The reason for the brace is so that the bones will fuse to the pins so I guess you sort of think of it as being a cast on a broken bone. But I should be pain free once the incision is healed, even if I am wearing the brace.

I can hardly wait for next summer as I'd love to try to play a bit of tennis again. And hike again. And ride a bike again. And walk again without worrying I won't make it home.

So I do empathise with you and your condition...I do hope that no matter the cost, they'll be able to help you.

And I sure hope Obama gets medical insurance available to everyone in your country.

Gentle hugs to you! :D

Lavinia said...

Popped over to say Happy Thanksgiving, River Poet!

Coal Miner's Granddaughter said...

I'm so very glad you're getting your baby home tomorrow! And I'm also so very, very thankful that you have an appointment for your Chiari. I know it will be expensive, but I think it will be worth it if you can be helped. I'm thinking of you, darlin'!

Maggie May said...

I did email you.......
Had a few problems though.
Mine is :-
grannie.may@gmail.com

Crystal Jigsaw said...

Blimey! Thank you for the update on your condition. I'm sorry to hear that you are in pain and hope something can be done about it for you.

CJ xx

SandyCarlson said...

I am glad your baby comes home and I am glad you will be getting the treatment you need. I will keep you in my thoughts and prayers for safety and success up North.

Happy Thanksgiving, friend.

Not Afraid to Use It said...

I am so glad you have your appointment set. That is a huge step! How is it to have your laptop back? Are you feeling the love?