Second Meeting of the Tennessee Chiari Support Group

[Shane99]

Lovemygirls and I, and our spouses, met for lunch today in Nashville.

She is doing great. She's getting around very nicely and her scar is barely noticable. Dr Hampf said she is doing better than anyone he's seen.

[sissy114]

Hey, Anytime that you and your wife can get by will be fine. Lovemygirls children are going to Nashville with their church group and she and her sister might drive together
and come to the hospital the morning of my surgery, maybe if it works out you & wife
can come by that morning also. I will be happy to meet you whenever it works out the
best for you. I will be sending you ph #'s soon. Hope you are feeling well. I am ready to
do this and hopefully start feeling better. I really appreciate you!!

sissy

[Shane99]

Hey guys, I know I'm the one that sorta started this, but I'm not going to be able to meet on the 19th. :(

My wife's office is having their Christmas party that day and it's one of those companies that, unofficially, requires everyone to attend.

I hope some of the rest of you can still get together, and I hope that I can meet the rest of you at some point.

Sissy, is it okay if my wife and I come to see you after surgery? You'll probably be going home around Friday or Saturday (Jan 2nd or 3rd). Maybe we could come by on New Years Day or Eve?

[sissy114]

Hi,
I'm glad you have decided to join us, you will find it very helpful. Are you having symtoms
and if so, what kind are you having? I started having problems around '93 but was dx
wrong. My arms and neck hurt when i would overdo, learned to live with it but last year
thing got worse and i hurt most of the time and really bad when i tried to sleep at night.
I'm sure you read that i will have surgery on the 30th of this month. Where around Nashville are you? I live in Dayton but thanks to shane i found Dr. Hampf. Have you seen
a specialist? Please keep us updated.
sissy

[selmaS]

Hi...I am sure Shane or Lovemygirls will pop on and talk with u...may I ask y u weren't active here b4?....also do u know ur herniation, or if u have a CSF blockage?

Symptoms?...since u were dx in '93...I can only imagine u r not experienceing severe symptoms.

U r also lucky to know u have a chiari specialist near u......

I hope u continue to be active in posting here!

Godspeed
"selma"

[Nat1957]

This is my first time reaching out. When I was first diagnosis in 93 no one not even the NS knew much about CM.
Would like very much to hear from you and others in and around Nashville..  

[sissy114]

12n sounds great to me as long as they get me in on time and out by then. Are they usually good about that? I hope everyone can make it.
sissy

[Shane99]

Still tentative, but how's around 12n on the 19th sound to everyone that could make it?

Sissy, Lovemygirls, Jptdad, anyone else? Rozia mentioned someone - Tonya? And someone on these boards mentioned to me that her sister lived in Nashville, sorry I forget the name - I blame the Chiar :). Any chance you could make the trip for lunch (you could claim it was a Christmas visit :)

  

[Shane99]

What time is your appointment on the 19th? Maybe we could meet for lunch before or after, depending? If nothing else, My wife and I hopefully can see you at the hospital a day or two after your surgery - you're gonna be in the hospital on New Years Eve/Day, maybe we can see you on one or both of those days.

Jptdad, are you busy on the 19th? Maybe we could all meet?

Lovemygirls, any chance of you making the long trip up on the 19th? I know that it's far and all, but maybe you could trick someone into driving by claiming that it's a Holiday shopping trip? :)

All this is tentative, I'm not sure what my schedule will be like then either. But it might be a chance for some of us to meet.

[Lovemygirls2]

You are going to do great!  I am excited that you will soon have relief from all your pain!  I am here for you- whatever you need!  I want so bad to meet you on the 5th of January but that would mean your stay in hospital will be pretty long- so I don't want to be selfish!  :)  We WILL meet!  Soon I hope!  Any questions- throw them my way!
Definately in my prayers!!!!

[selmaS]

I want to wish u luck...and know u r in good hands...Shane and Lovemygirls swear by him!!

keep us posted!
we'll keep u in our thoughts and prayers!

"selma"

[sissy114]

I go for my pre- op appt. on 19th of Dec. and my surgery will be on the 30th in Nashville.
I am still scared but I know that Dr. Hampf is a great NS so I will be in good hands. I am
so thankful to Shane for telling me about him, and for everyone who has supported me through this. I hope I can bounce back as fast as Lovemygirls, but age is aganist me there. Please keep in your thoughts and prayers.
sissy

[sissy114]

Hi Shane, Lovemygirls and everyone!! I talked to Dr. Hampf's secretary today and I am
to have surgery Dec.30th. They said someone would call soon to schedule my pre-opp
appt. and surgery. I really feel blessed to have you guys. I would not ever known about
Dr. Hampf if not for you Shane. You and Lovemygirls have been so great and I hope that if I am still in Nashville on the 5th, I will get to meet you both. Lovemygirls has done remarkable and you both have made this decision easier because of the faith you both
have in Dr. Hampf. Again, I feel so blessed. Thank you!!
sissy

[selmaS]

I'll dig thru my e-mails and copy and paste it to u both!!


"selma"

[Lovemygirls2]

Oh yeah- Shane mentioned it- but my appointment went wonderful!  He said the MRI was perfect and I was healing wonderfully!  He said I was a record setter!  Guess that's good for a neurosurgeon to say!  He said even in the hospital I was a record setter- he said most his patients stay 6-7 days.  I was out after 4 and he told me yesterday I could have gone home in 3 days but he thought my parents would hunt him down if he sent me home 3 days after brain surgery!  Haha- he's right!  :)  But he said the chances of me having to have any other surgery related to Chiari are only 5-8% chance.  Those are low percentages!!!  My lump of swelling was mostly gone-  I am still having some headaches but he said those are healing pains- very normal!  OH- and to report....the pains from have a BM.....were gone after 4 weeks post op- haven't been back!!!!  Hope all this good news helps to encourage you guys!  Thanks for being such a great family!!!

Selma- I would like to see that email from ASAP about our support group- if you'll send it to me Shane or I one will look into it!

Love yall

[Lovemygirls2]

It is wonderful to be able to meet with other Chiarians!!  Even my husband and Shane's wife understand what each other are going through!  My husband left our lunch meeting and said that was so neat to meet others going through the same things as us!  So true!!!  I would love for anyone to meet with us!  My next time I will be in Nashville for an appointment is January 5- everyone in the Nashville area- check your calenders!  It's a Monday!  I can't say it enough- it's really nice!  Shane99 and I have really become good friends through our struggles with Chiari!  Pretty cool to have a whole new world of friendships!

[selmaS]

ASAP is willing to help get groups started where there aren't ne......I believe I have an e-mail ....if u r interested in the info let me know.

"selma"

[Shane99]

I'm not sure what it would take to make something like this "official". So far, we've just tried to meet when she's in town (she lives about 2 hours from Nashville).

jptdad, you're welcome to meet with us also. I have no idea when her next visit would be though. Another couple of people on these boards have mentioned living in the general vicinity (say, around 100 miles) or willing to make the trip.

I'd love for us all to meet. I agree that it helps meeting people with similar problems. Just to be around peopel and be able to swap stories about what no one else can understand is priceless.

So, if you are in the area, and would like to meet, let us know.

[jptdad]

Is this support group of Dr Hampf patients only?

jptdad

[selmaS]

That's wonderful news...r u going to make ur group "offical" ??

I think it's great that u r close enuff to keep tabs on each other and offer support in reality instead of a virtual support....not that it's not important, but it is so good to get real hugs now and then.
Thanks Shane for giving Lovemygirls that added support we here on medhelp can not!

"selma"