My update...

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My update...

Postby kiminfla » Wed Mar 19, 2008 8:46 pm

Hi All...Thanks for reading! Well, I went to the NL today and got the results of my latest full spine MRIs...GREAT NEWS...the only issues are bulging disks, c-4-c5, c5-c6, and a couple bulging disks in the lumbar region as well...Still no evidence of SM...and he is so pleased about how my surgery site looks...I have some pain in the lumbar region but I told him my bigger concerns are elsewhere.

GEORGIA GAL, He said there is no kinking anymore ...If I remember right your dh's mris show this...Interestingly, my 1 year pfd post op MRIs still showed kinking in the cervical region, (although the CSF flow was much improved)...now at 18 months post-op it is GONE! YAY!!!! I guess this is one example of anecdotal evidence that the improvement can indeed take up to two years, as Dr. Green told me...the NL reiterated that it is a LONG healing process, being post-op pfd...

Now, of course that doesn't explain my remaining issues but we discussed my continued upper left chest region chest pain, stabbing left arm pain, jaw pain and numbness/tingling in the jaw area, aching hands, etc, etc. The NL wants me to go ahead with the GI recommendation (hopefully for an endoscopy, I'll see the GI next week), and he wants me to go ahead with the cardiac cath to rule out definitively any cardiac causes. He and I are in agreement that the cause for my seemingly cardiac issues may be CM (possible) or esophagus (probable) related but probably not cardiac although he wants to be sure.

The NL basically said that my continuing/ongoing issues may not be Chiari related. Some probably are and in Sept (2 years post-op) he'll have a better idea of what the maximum benefit of the surgery was and what I'll learn to live with. He absolutely applauded the "outstanding" job that my NS did with my pfd...He'd never seen such a dramatic difference in pre-op/post-op MRIs before (regarding the severity of my pre-op compression)...He's basically "impressed" that I've been able to return to work, take no meds, and regain as much as I have...He knows I continue to struggle and said that unfortunately, with Chiari (and the experience he's had with CM patients) that can be expected (continued struggles)...I'm the best surgical outcome he's seen (He has about a dozen CM patients). We're both hoping for more improvement with time.

I'm feeling blessed...Not feeling "great" about the cardiac cath that appears to be knocking at my door but absolutely I'm blessed. Which brings to mind a favorite song lyric...

"I'm blessed beyond the curse for His promise will endure and His joy's gonna be my strength"...

I'll let you know what the GI says and keep you in the loop about the cardio as well.

Be blessed dear friends, and Thanks again for reading (and caring!)...Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby preciousheide » Wed Mar 19, 2008 8:56 pm

Wow, I just love hearing good news from others. Hope all just keeps getting better for you! Good Luck!!! :D :D :D :D :D :D
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Postby Ryzing » Wed Mar 19, 2008 9:11 pm

Thanks for the update, Kim. I, too, am glad to hear you had some good news for a change!

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby kiminfla » Wed Mar 19, 2008 9:47 pm

Precious, Di, and Hip...Thanks so much for the encouraging words!!! Much love back at ya!

Hip, I was very interested in what he was saying about the kinking and how it was still there at 1 year post op and is now gone...And we have serial MRI evidence, which is pretty cool too! Do you remember we had a conversation about how long the "true" recovery process is? It may be an isolated case but my case is definitely an argument for the "we'll see what time yields" theory.

My NL (who I didn't find until after my pfd actually) went to med school with Dr. Green. He said he typically sends CM patients (who live in Florida) to Shands instead of Dr. Green because it takes him 3-4 months to get someone in to Dr. Green (and he knows him!)...and he can get someone in to Shands sooner. I asked why did he think I got in so quickly (I didn't even have a dr referral...I just called and asked for Dr. Green to check out my stuff :) ) and he said I was probably seen so quickly because of the severity of my compression (not so much the length of herniation (12 mm) but the severity of the brainstem compression...

I think that's why he's so impressed with how my MRIs look now...because it's a defnitely "notable" improvement even if the symptoms don't always appear to agree!

Be blessed! :D Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby Janice » Thu Mar 20, 2008 9:21 am

Hi Kim,

I'm very happy to hear that everything is moving right along. I pray that your remaining symptoms are relieved by the time your 2 year post-op comes. I'm also impressed with the kinking being gone. That's amazing.

Because of the bulging, you should probably take it easy more and see about PT or something to help out with those, especially since you're having pain in the lumbar region. There are some here who say their buldging discs cause tremendous pain.

I'm sure your terrific news of a such a great pfd will be comforting to those waiting to be seen by Dr. Green, or even those awaiting surgery.

I pray that your heart is in tip top shape so no other heart treatment will be required.

You remain in my thoughts and prayers. Thanks for the great news.
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)
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Postby georgiagal » Thu Mar 20, 2008 11:56 am

Hi, Kim! Thanks for the update. I'm relieved to hear that you're doing so well.

I don't know if dh has kinking in his cord or not, but it's great that is no longer something you have to deal with. Let's continue to hope that the remaining testing shows only good results.

Glad to have heard from you. Keep up the great recovery process!

GG
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Postby Snoozie » Thu Mar 20, 2008 1:19 pm

Hi KIm, good to read some good news.

I will pray that you continue to see improvement and that the other tests you are having will be easy on you.

Have a great and blessed day, you deserve it...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Postby PittyPatty » Fri Mar 21, 2008 6:23 am

Hi Kim,

I'm so glad to read good news from you! :D I hope your improvements continue every day, and that your other tests give good results and those symptoms are relieved as well.

And yes, as Janice said, reading the great things you have to say about Dr. Green is so very comforting to me and gives me confidence that I have have chosen the right route for care.

All the best,
Patty
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Postby kiminfla » Fri Mar 21, 2008 8:26 am

Sorry, Georgia! As I wrote, "If I remember right..." of course, I remembered WRONG!!! about your dh's mri, it wasn't the kinking we had in common, it was the benign hemangioma (sp?) Sorry for the confusion!
I sent you a pm.

Patty, Is your follow up today? Please let us know what Dr. Green has to say!

Thanks, all, for all the support! I'm very glad to have good mri results...I'll feel better about it though at my 2 year post-op when they re-do my imaging studies in Miami and Dr. Green reads them himself!! The NL here is good though, does read the films himself (not just the report) and I feel confident he would see it if there was something terribly wrong!

Now, on to the next phase of testing...This stuff can truly wear you down! Thanks to my ASAP friends for lifting my spirits and all the support during the tiring process!

Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby specialmomx2 » Fri Mar 21, 2008 8:37 am

Kim,

WOW! I am so happy that you are receiving all this good news. May the trend continue with the other "stuff" and you start to make progress on that front, too.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby Vagreeneys » Sun Mar 23, 2008 11:37 pm

It is surgeries like yours that give us all hope. Great Job to all your doctors and Hope everything else comes out as good as your surgery did.

Good luck and keep us informed!!!!
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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