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Hi

Postby Staci Massi » Mon Mar 24, 2008 5:28 pm

My name is Staci Massi (used to be Wietrecki). To those I haven't talked to in a very long time I am sorry that its been so long and for those who I don't know (and don't know me) I hope that we can get to know one another.

In 1989 I was diagnosed and had surgery for Syringomyelia with Chiari. I was 12. My surgery was successful and while I had things that still effected me afterwards (headaches and muscle ailments and unable to control my internal tempature) I no longer had spasms, pain or the loss of use of my arms or legs).

It was hard for me to belong to the group when so many people were in constant pain and I wasn't and I can only imagaine how much harder it was for people to know that my "problems" were nothing as compared to what you were going through.

So I went on with my life. I got married to wonderful man (Mark) and had 2 beautiful children (Anarese and Colton).

I had problems (horrible muscle aches and no internal tempature control and would dehdrate very easily) then I got pregnamt with my first child and I have to say it was the best thing. No problems what so ever (my preganicies had problems but not related to SM) and even after my daughter was born I was fine. I had no problems the year between pregancies and then no SM related problems with my son. Now my son is 2 1/2 years old and I am beginning to have some problems again.

My problems are still minor but I know they could be just the beginning. I got to thinking that the last couple of months I have thought about walking the 3day for breast cancer for my friend and an overnight cancer walk for my dad. But really why am I not going back to something that I really do hold close to my heart.

I used to have Dr's call and ask for my records or if I would go for tests or just ask questions and a couple of years after my surgery it stopped. I think about how if you have someone who has beaten something wouldn't you do everything you could to them (if willing and I am) to figure out why they were successful and the rest is not.

Not to mention that I don't, god forbid, want to find out that its come back and I have to have surgery again 19 years later or that my children have it and I could have been doing something to prevent it.

So since its been so long since I have had much contact with anyone that this should be my first step. I am going to go to my nerologist here in Tampa and see if he has any suggestions and how I can further help and I hope that together we can find a cure or at least some more answers.
Staci Massi
 
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Postby cash71 » Mon Mar 24, 2008 8:33 pm

Hi Staci,

Just wanted to welcome you. It's so great to hear how well you are doing and congratulations on your beautiful family! Thank-you for sharing you success story. It's always great to hear about people that have done so well.


It's nice to hear you are wanting to give back. I find this is the best way to forget your own struggles is to help someone else.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby bri23t » Mon Mar 24, 2008 9:04 pm

welcome to u...thank u for sharing ur story with us all...just wanted to welcome u and say that i am jealous of u being in tampa...i just moved from the pinellas/pasco area 2 weeks ago to up-up state NY (almost canada) and am really missing home and the weather...w/ my symptoms the cold is killing me!!>..anyway...hope that u have a good night:)...bri
dx CM and SM 09/05, failed PFD 10/05
VP shunt 11/05
removal of cerebral tonsils 1/07
SM (through entire spinal cord)
TCS and EDS dx at TCI 4/08
TCS surgery 4/08, pfd revision and VP shunt revision 5/08
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Postby georgiagal » Mon Mar 24, 2008 10:07 pm

Welcome, Staci & Glad you have found this great community. I will send you good thoughts and hopes that you don't need another surgery! Keep doing what you've been doing because it's working!

GG
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Postby Vagreeneys » Mon Mar 24, 2008 10:36 pm

Welcome Staci it is always good to hear a success story and hope all stays that way. It is wonderful that you want to help others you have a good heart and soul hope all does work out for you!!!!!

Heide
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
Rhuematoid Arthiritis
Neck Fusion C-3 to C-6
Tavlor cyst
Tethered cord
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Postby Sandy » Mon Mar 24, 2008 10:40 pm

Hi Stacey,

Welcome aboard. Please don't ever think that your problems or health is any less important than anyone elses. We're all in this together.

And thaks for sharing your story. Ifound out the no temp control, or open thermostat as dh calls it, is from the hypothalmus, if I'm remembering right. One degree too warm and I get sick. One degree too cold and I hurt terrible.

love,
sandy :D
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Postby SMLady » Tue Mar 25, 2008 8:25 am

Hi Stacey! Just wanted to say Welcome. I'll be in your neck of the woods in a couple months. My MIL lives on Siesta Key, so we go visit her every year, and this year we are flying in to Tampa so we can visit Busch Gardens.

Hope you are having a nice day!
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
----------------------------------------------
The Man who walks with God always gets to his destination.
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Postby Janice » Tue Mar 25, 2008 8:36 am

Hi Staci and Welcome back!,

I hope things remain pretty stable for you and that your appointment w/the NL goes well.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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welcome back

Postby Sara » Tue Mar 25, 2008 8:46 am

Welcome back, Staci! Let us know how your check up goes. Do you have regular MRI's?

Sara Patterson
Sara
Site Admin
 
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Postby rose » Tue Mar 25, 2008 1:22 pm

welcome
i hope that things work out for you
this is an amazing group of people
i hope you get the ansers that you need
ra
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