ONE OF THE LUCKY ONES

A place to celebrate everything wonderful!

Moderator: pmaxwell

ONE OF THE LUCKY ONES

Postby wendi » Mon Oct 20, 2008 10:27 am

This is how I feel. I am very lucky. I have cm, but the only surgery I have needed is tethered cord. I was also lucky enough to get to TCI. I live in PA and am only 2 1/2 hours away from the TCI and the wonderful drs there.

This time last year, I never had good days, only days that were not as bad as others. I had daily pain in my neck and back. HA's, vomiting, dizzyness, veritgo, ringing in my ears, trouble swallowing, shooting pains down my legs, burning pains on the bottoms of feet, numbness and tingling on all my extremeties and yes, the dreaded incontintence. :oops:

The only surgery Dr B felt I needed was TCS. I had some complications while in the hospital, but only ended up 1 extra day and now 9 months later I am much better. It was a treatment, not a cure, but today I have good days. I never pee my pants anymore. I still have neck and back pain, HA's and trouble swallowing. These are less frequent now. I can function better and remember things better. Now that my brainstem is not being pulled down.

I could be re-tethered or my herniation could grow and my symptoms could come back. Hey, I could be hit by a bus tomorrow too. We don't know what the future holds, but I do know that today, I feel pretty good. I will take that. Compared to many people here. I do feel like one of the lucky ones.

There is hope and there is treatment!

Take care,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: ONE OF THE LUCKY ONES

Postby Janice » Mon Oct 20, 2008 11:10 am

AMEN!!!

Thank you for posting Wendi. There are so many people out there who needs to hear this.

You are so right, anything can happen so you can't sit around waiting for the "what's next" with CM or SM, or anything for that matter. All we can do is deal with what's happening today. When we lay our heads at night, we have to remember that tomorrow is another day to be thankful for. It is what it is (as GG says) and you can't wait for things to happen that might never come about or worry about the "what if's" that might never happen. Live for today and remember that tomorrow is a blessing for all of us.

I'm so happy that you were able to get surgery so that you are now allowed good days. I'm more thankful that you stick around with us and still provide words of wisdom, encouragement, support and love for all of us.

Thank you for being you.

Take care, (((((hugs)))))
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
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Re: ONE OF THE LUCKY ONES

Postby *Hope* » Mon Oct 20, 2008 1:02 pm

YAY Wendi! I'm so happy for you and your improvement! I hope it just keeps getting better too. You are one of the funniest people I've met on here and you almost made me pee a little when we chatted one day...haha. You rock!

Watch out for the bus, dear! :wink:
CM1
*Hope*
 
Posts: 447
Joined: Sun Mar 30, 2008 8:50 am

Re: ONE OF THE LUCKY ONES

Postby wendi » Mon Oct 20, 2008 2:12 pm

Oh, you guys, go on. Yes, I mean go on and on. :lol: :lol: I love you both!

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: ONE OF THE LUCKY ONES

Postby megsmom » Tue Oct 21, 2008 3:13 pm

I actually needed to read something like that today. I had my surgery three months ago, and while I haven't had relief of symptoms, they didn't get worse and I don't have many new ones. I have so much anxiety about what might still happen to me. Will I get new symptoms, like seizures? Will I have to have the surgery again? I worry constantly about getting worse, to the point of being consumed by it sometimes. Tomorrow I go back to work...I teach high school...and I haven't been able to sleep for two days because I can't stop thinking about feeling bad when I go back.
megsmom
 
Posts: 231
Joined: Tue Mar 25, 2008 8:23 pm

Re: ONE OF THE LUCKY ONES

Postby kimbalock » Fri Oct 24, 2008 5:22 pm

Hi, friends. I had my decompression surgery on April 2, 2008. I have Chiari I, 5mm. I found a wonderful dr. that works out of Georgetown University Hospital and, after 4 years of daily headaches that truly did consume my life, he diagnosed me with Chiari. The not so funny thing about this is that I had already dx myself with it 4 years earlier as I always get online to research everything. Dr. after Dr. after Dr. continued to try to treat me for migraines. I KNEW, without a doubt, this wasn't a migraine; have had them before and I darn well know the difference. When I saw my Primary Care Dr. and he saw the pain in my eyes and all over my face, he immediately referred me to a NS. He said, 'this has gone on long enough'. Somebody needs to help you. The NS I went to, without me even mentioning the Chiari, picked up on it on the MRI even though the radiology report did not have it written on there. I have to say, that was the scariest AND happiest day of my life because I finally felt I had validation for all of the symptoms I was having and I wasn't going crazy. Within 6 weeks of that appointment, I was scheduled for my surgery. I don't regret having it and would do it all over again. I can now play with my children, ride the Harley with my husband and do simple chores like laundry without the worry of that 'oh so familiar' heachache showing up. Something as simple as getting out of the shower and bending your head over to put a towel on your head - this is something that I do and smile every time because I used to get headaches doing it.

Anyway, it's been over 6 months now and I'm very happy with the results. There have been 5-6 times that I've felt a very similar h/a but it comes and goes quickly. Kind of strange, but it usually happens when I'm laying in bed and have to cough. Even so, life is good. I know I may not always be headache free but for now I need to enjoy the h/a free days I'm having as the 4 years I had them took so much away from me and my family.

I wish you all the best of luck and pray that we all continue to work together to find a cure for CM/SM. My husband and I rode for the March of Dimes last weekend (bikers for babies). It was a beautiful weekend, 200+ motorcycles and lots of money raised for a good cause.
Kim from Maryland
CM dx 2/08
Decompressed with craniectomy, laminectomy to C1 and expansile duraplasty using fascia latta on 4/2/08
Mild Scoliosis
Herniated discs at C5-6 & C6-7
kimbalock
 
Posts: 57
Joined: Sun Feb 24, 2008 4:09 pm
Location: Southern Maryland

Re: ONE OF THE LUCKY ONES

Postby glorious1 » Mon Dec 01, 2008 11:01 pm

What is a teathered cord? Is this an alternative to the decompression surgery. I would love to speak to someone personally. I am so scared.
glorious1
 
Posts: 4
Joined: Mon Dec 01, 2008 10:38 pm

Re: ONE OF THE LUCKY ONES

Postby wendi » Tue Dec 02, 2008 9:13 am

Glorious1: I sent you a PM.

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: ONE OF THE LUCKY ONES

Postby ddllpn » Fri May 22, 2009 9:28 pm

Thanks for your input. As you can see I am new to this discussion board and I am scheduled for tethered cord release this June and have some questions if you don't mind chatting with me. I will be going to TCI, I have great faith in them, I am a nurse and a pretty good judge of character and I can honestly say I do believe they have the patients BEST interest at heart.
But Nurses make the worse patients!! (lol} so i would rather ask you some questions if you or anyone out there has had the tethered cord release done with positive results. I am no spring chicken, I am 55 years old so i have been suffering for a very long time, but at this point I need SOME quality of life to go on. Thanks for listening.... Deb
PS I am very open to anyone e-mailing me @ ddllpn@yahoo.com to please tell me of your experience. I am SO afraid I will forget the name of this site!!!! LOL (not really laughing) God Bless and thanks
ddllpn
 
Posts: 1
Joined: Fri May 22, 2009 8:58 pm

Re: ONE OF THE LUCKY ONES

Postby kathymichelle » Tue Jul 14, 2009 10:06 am

Wendi, that's good to hear.. and I'm considering the TCS, although not ready yet. I wonder if it's like CM, the more symptoms you have over the years, the harder it is to even effect any type of treatment that would be considered a success??

I waited so many years, that the last symptoms were the ones that resolved, but I'm back to swallowing issues again, and don't know when it's going to happen..

Good luck and I like your sense of humor!

KM
kathymichelle
 
Posts: 469
Joined: Wed May 16, 2007 2:18 pm
Location: wheverer the nearest jet takes me


Return to Share Your Success Story!

Who is online

Users browsing this forum: No registered users and 3 guests