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Postby KyliesSis » Tue Mar 25, 2008 10:31 pm

Thanks guys. I love coming on here and reading your comments.

Here's an update. We went to Kylie's pediatrician in our hometown today, and told him about Dr. Frim. He was really sorry about the fact that he wasn't able to diagnose it. He started asking us what the doctor said, and we told him. I haven't seen him as upset, and when we tried to make him feel better and tell him that if it wasn't for him, we would've never known (God knows, our family doctor is ... well lets just say, not as good) and he was still upset. Dr. frim asked for an MRI and a Urodynamics test. It's really hard to get an MRI appointment here in Canada, you usually have to wait at least six weeks. But just like last time (we saw him on tuesday, thursday morning we were doing the MRI), he booked an appointment for next week. He personally spoke with the radiologist, told him what Dr frim had said. While on the phone, both doctors were talking about the fact that they missed it, and how they could miss it, blaming it on themselves. It was very nice to be able to see how much they care about their patient. At the end he told my mom and me that its our decision about where we want to do the tethered cord surgery. We're still unsure due to the money issue. But he did say that he was going to send Dr. Frim a copy of the MRI out of respect.

Thanks for listening guys, :)
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
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Postby bri23t » Tue Mar 25, 2008 10:40 pm

its nice to know there r some doctors out there that can admit to a mistake and show some emotion...treating ur sister like a person and not just another patient...

im very happy for u and ur family that u r getting the answers u need...i hope u resolve the money issue and r able to the tcs soon...good luck!
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 Vagreeneys » Tue Mar 25, 2008 10:47 pm

I hope all goes well with kylie and your family. My prayers are with you when she has the surgery keep us updated. It is great when a doctor shows that he is wrong and accepts the mistake and trys to help the family. Good Luck
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 georgiagal » Tue Mar 25, 2008 10:53 pm

What a relief it is to hear that not only was the doc upset about missing something, he has jumped on getting what testing is needed. It's truly wonderful to hear that there are great caring doctors out there. I just hope I meet one sometime!

My thoughts and prayers are with you and your family in hopes that all will work out.

BTW -- your sister is an absolute cutie-pie!

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Postby Janice » Wed Mar 26, 2008 10:13 am

Good Morning,

Thank you so much for posting an update. I agree with everyone else that it's nice to see a doctor admit he was wrong, show emotion, then do what he can to help.

It's wonderful to see a picture of little Kylie. She's is so precious with her beautiful smile that reaches her eye's. She looks like such a little angel. It deeply saddens me to know that she is having such a difficult time. :cry:

Thanks for including a photo.

Are you planning on having the surgery near home, or traveling to Dr. Frim? If there is a qualified surgeon in your hometown, you'd probably want to stay close to home so she has all her family there for support. If it were brain surgery, and my child, I would not hesitate to go to Dr. Frim.

Let us know what you all decide and how things are going. You and your family are in my thoughts and prayers.
GOD Bless!

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

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