New to ASAP

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New to ASAP

Postby Sinamyn » Thu May 19, 2011 10:15 pm

Hello. I found this website a couple weeks ago when my husband was looking for more info on Chiari's. After today's (horrid) visit with the NL, I decided to join the message board for support, and figure I should introduce myself.

I am Krystina, from Phoenix, AZ, 35 and diagnosed with CM1 in Oct 2009. The NL told me that CMs don't cause the problems I complained of, but if I wanted I could go see a specialist at Barrows (Dr. Rekate, who has since left Barrows, and I have since found out is a big deal in the Chiari world, yay for the procrastinating me). I bought what the NL sold, and didn't do anything. My symptoms weren't *that* bad (meaning I pretended to ignore them). About 9 months ago the symptoms got much, much worse. Today the NL told me the same thing - CMs don't cause this, and pretty much, without saying the exact word, told me I was a hypochondriac. Reading posts on this board, I realize just how wrong he is, and how I am NOT alone, nor is it "all in my head" (no pun intended :lol: )

I'm married, but it's rocky and of course I'm scared of what this might do to further stress our relationship, or what I'm going to do if the relationship fails. I also have 2 daughters, 6 and 12, and two step-sons, 11 and 13, who live with us. Many times I feel guilty because I'm so tired so often, and my kids have to fend for themselves, or I'm too tired to stay up and spend some alone - let alone intimate -time with my husband.

I'm glad I found this site and message board. I hope to learn a lot, and maybe even be able to contribute some info eventually, as well as support.
~Sinamyn~
Krystina
Wife, mom & stepmom
Lost in confusion, fear, and uncertainty.

"If we weren't all crazy, we would go insane." -Jimmy Buffett
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Re: New to ASAP

Postby pseudotumor » Fri May 20, 2011 12:02 am

Hi Krystina,
Though i'm new today too, welcome. I can relate to doctors not taking you seriously as well as having your family upset that you never feel well enough to stay up late or do anything that requires a lot of energy. I'm sure this site will be a great resource and source of support.
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Re: New to ASAP

Postby karenb » Fri May 20, 2011 6:41 am

Hi Krystina, and welcome!

I have SM (T6-T9). I was diagnosed in August, 2007, but had been limping and walking with a cane due to leg problems for 10 years prior to that.

I have not had good experiences at Barrows - they have a great Neurosurgeon who specializes in SM, but don't seem to have any Neurologists who even know what it is... sigh... Ultimately, I made eight trips to Barrow's trying to get some help (minor detail - I live 520 miles away from Phoenix). On my last visit, they didn't tell me that my doctor had left the practice until I was in the waiting room - I ended up seeing a Parkinson's specialist who thinks my symptoms are psychiatric! I'm not sure if things are much better in terms of Chiari 1 - it depends on whether they consider it to be a "movement disorder" (that's what they classified SM as - after my first appointment ended up being with a stroke specialist!!!).

One person on the board reported good experiences with another physician in the Phoenix area. You might want to post a request for a Phoenix area NL/NS on the "All About Chiari, Syringomyelia, and Related Disorders" group. First, though, you might also want to do some searches on previous posts.

Dr. Heiss at NIH mentioned a NL/NS at Mayo in Scottsdale that he thought was very good, so that might also be an option. I'd try the other doctor first, though. You're close enough that you might want to consult Dr. Batzdorf in California.

Relationships are vital in dealing with this condition. The board helps, since people here understand what you're going through. But it is vital that the people closest to you have a basic understanding of what's happening. A few sessions of family counseling might be really good for y'all right now - it would help the children a lot, and would also be very helpful for your husband (if he's open to it). This condition (or any chronic, debilitating illness) puts a lot of stress on family relationships, and it's important to address them now, before things really get out of hand.

Good luck in your quest!

Karen

P.S. If you find a good NL in Phoenix, let me know... if I come back that way, I'd be happy to treat you to lunch!
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Re: New to ASAP

Postby razzle » Fri May 20, 2011 10:07 am

Sinamyn sent you a private message
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: New to ASAP

Postby Sinamyn » Fri May 20, 2011 2:00 pm

Hi Karen. Thank you! Since Dr. Rekate left Barrows, I've been unsure about going there anyway. My husband wants me to go to the Mayo Clinic. He's also said that if necessary he'll pay the airfare to get me to the Chiari Institute. He's very supportive when it comes to me getting care, but I know it takes it's toll on him also. We're already in marriage counseling so that's a good thing. The kids are pretty good about stuff, just the youngest one who doesn't quite understand, although I give her lots of extra snuggles - at least that's something I CAN do! My oldest daughter just needed to be reassured that it won't kill me. Of course, I also had to reassure her that arthritis in my knees won't kill me!

I am definitely going to do a search on here to see about a Phoenix doc, and of course if I find a good one, I'll let you know!
~Sinamyn~
Krystina
Wife, mom & stepmom
Lost in confusion, fear, and uncertainty.

"If we weren't all crazy, we would go insane." -Jimmy Buffett
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Re: New to ASAP

Postby karenb » Fri May 20, 2011 10:56 pm

Krystina,

Probably not a bad move. I think it's wonderful that you're thinking about the Chiari Institute.

BTW, have you thought about attending the national conference this summer? It will be in Colorado, and will include patients and researchers from across the nation. I went in 2008, and found it very helpful and encouraging. You may also get some good leads about physicians, since a lot of the best of the best will be there...

Best wishes, and keep me posted.

Karen
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Re: New to ASAP

Postby pseudotumor » Sat May 21, 2011 12:21 am

Karen, is there a link to this conference in Colorado? That's where I am so I just jumped at the mention of it. :)
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Re: New to ASAP

Postby Sinamyn » Sat May 21, 2011 1:10 am

There's a link on the ASAP homepage. I just checked it out. I'm going to discuss it with my husband. I think I can drive there easily enough and that falls during his days off, so I wouldn't have to worry about my youngest daughter (the only one who would be home during that time - the rest are off with their "other parent" for summer break). Does anyone know if this can be included in the medical expenses tax write offs? That would be nice :)
~Sinamyn~
Krystina
Wife, mom & stepmom
Lost in confusion, fear, and uncertainty.

"If we weren't all crazy, we would go insane." -Jimmy Buffett
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Re: New to ASAP

Postby karenb » Sat May 21, 2011 11:39 am

The link for the national conference is http://www.asap.org/index.php/get-involved/conference/. That page has links for the agenda, registration, etc.

Karen
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Re: New to ASAP

Postby pseudotumor » Sat May 21, 2011 1:50 pm

I looked at this, does anyone know if you can attend without purchasing the hotel room, or if there's additional fees to attend? I live in the area so that seems rather pointlessly expensive, but i'd really like to go.
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Re: New to ASAP

Postby pseudotumor » Sat May 21, 2011 2:43 pm

Nevermind that ^ I figured it out, i'm just slow at figuring out this website. :lol:
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Re: New to ASAP

Postby karenb » Sat May 21, 2011 11:38 pm

Julie,

The website is note really clear on this, but you should be able to attend as a local participant, but this is definitely not clear in the registration, information. [FYI, the hotel reservation is totally independent of the conference reservation.]

Depending on your situation, you could attend the conference by yourself, but attend the final banquet with a "significant other" by purchasing a ticket. Alternately, you could have a "significant other" attend the entire conference with you, or even go as a family (since there are child-friendly activities).

The key thing is that they really try to keep the conference affordable - There aren't many medical conferences that only charge $160!

I'm still wrestling with myself about whether to try to attend the conference (it's a 650 some-odd mile drive) or attend a Spanish Colonial Arts Society event (in Santa Fe, NM - only 290 miles away) that conflicts with it.

Best wishes in your decision - as with all things, make the decision that makes the most sense for you as you are right now. (FYI, I attended the conference in 2008, and found it to be a great learning experience.)

Karen
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Re: New to ASAP

Postby Sinamyn » Sun May 22, 2011 1:30 am

Julie - It's looking like I may actually be able to attend the conference. My husband was all for it and really thinks I should; now I just need to figure out how to come up with the money. LOL I'm thinking a mass sale on all my "romance enhancement" inventory (I was attempting to do in-home party sales, but had to stop in March). I'm enthusiastic about it, so I know I can find a way!

Karen - whichever activity you decide to attend, I know it will be the one you most want. And if you end up at the conference, I look forward to meeting you :)
~Sinamyn~
Krystina
Wife, mom & stepmom
Lost in confusion, fear, and uncertainty.

"If we weren't all crazy, we would go insane." -Jimmy Buffett
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Re: New to ASAP

Postby razzle » Sun May 22, 2011 3:40 am

Sinamyn have to thought about seeing dr. Oro in Colorado.R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New to ASAP

Postby karenb » Sun May 22, 2011 6:21 pm

Krystina,

Dang! I keep getting these centers mixed up... When you mentioned that you were in Arizona, I thought Dr. Oro would be a next logical step.

karenb wrote:Probably not a bad move. I think it's wonderful that you're thinking about the Chiari Institute.


Dr. Oro practices at the Chiari Care Center in Aurora, Colorado (http://www.chiaricare.com/). For some reason, I keep getting my centers mixed up! (Then again, from the internet search I did to find the website, it appears that it's a common mistake... so at least I'm in good company, I guess...)

Good luck!

Karen
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