Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Thinking of you, good luck, I'm sending a huge hug out to you - and thanks for your support UK mum to Josh, new to diet! > Hi everyone.... > > Just so I won't forget to tell anyone.... Katera had an MRI of her spine on Friday and we just got the results which say she does have a " tethered spinal cord " . They have referred us on to the pediatric neurosurgeon and I'm waiting for their office to call me back to set up the appointment. I guess this means surgery is very probable.... just don't know when. > > Well.... it's noon...... guess I should go eat since I haven't had a bite yet today. > > whew..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Patti -- What does a tethered spinal cord mean? Yikes! Is it something that causes her pain? I'm trying to remember what the tip-off was that there was some sort of a problem. Does fixing it mean that other things, like walking, might come more readily? I'm thinking of you guys! Take care of yourself. . . go eat and remember to breathe.--D --- Patti wrote: Katera had > an MRI of her spine on Friday and we just got the > results which say she does have a " tethered spinal > cord " . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Patti, Sounds like you may have some anxious times ahead. My family and i will pray for you all as you face this new situation. We have Katera's photo on Leahs pinboard at home and her cheery face encourages me every time i see it! Jeanette,Australia > >Reply-To: ketogenic >To: <ketogenic > >Subject: Katera >Date: Tue, 30 Apr 2002 12:11:21 -0700 > >Hi everyone.... > >Just so I won't forget to tell anyone.... Katera had an MRI of her spine on >Friday and we just got the results which say she does have a " tethered >spinal cord " . They have referred us on to the pediatric neurosurgeon and >I'm waiting for their office to call me back to set up the appointment. I >guess this means surgery is very probable.... just don't know when. > >Well.... it's noon...... guess I should go eat since I haven't had a bite >yet today. > >whew..... >Patti _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Patti, Good luck with future treatment. I'm sure Katera will handle it like a trouper. Keep us posted. Hugs to Katera Saro > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Patti, You and Katera will remain in our prayers. I don't know much about the tethered spinal cord but it sounds painful. Maybe the surgery will help her HUGS to you both- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hi Patti, I'm sorry to hear you may be facing a surgery. I know it can be tough when something new is added to the mix. Hang in there - we'll be praying for a great out come. Aileen, mom of (12-21-94) - agenesis of the corpus callosum, microcephaly, severe hypotonia, gtube, scoliosis, uncontrolled seizures (ketokid 4/9/02, depakene, phenobarbital, and klonopin) chronic low sodium, low thyroid, sleep apnea (obstructive and central), non-walker/talker, chronic (9-15-97) Wife of Jeff jajala@... " It is not how much we do, but how much love we put into doing it. It is not how much we give, but how much love we put into the giving. " Mother Katera Hi everyone.... Just so I won't forget to tell anyone.... Katera had an MRI of her spine on Friday and we just got the results which say she does have a " tethered spinal cord " . They have referred us on to the pediatric neurosurgeon and I'm waiting for their office to call me back to set up the appointment. I guess this means surgery is very probable.... just don't know when. Well.... it's noon...... guess I should go eat since I haven't had a bite yet today. whew..... Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Awwwww....... that's so sweet of you. Thanks, Jeanette! I got Katera's appt today for the neurosurgeon for May 16th. They told me I need to be prepared because they may need to act very quickly once they see us. Patti Re: Katera Patti, Sounds like you may have some anxious times ahead. My family and i will pray for you all as you face this new situation.We have Katera's photo on Leahs pinboard at home and her cheery face encourages me every time i see it! Jeanette,Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Patti, Home too from hospital, even having rotated nights with I could sleep now for a week. Glad all went okay, Hill in NZ > Hi .... > Just got home a couple of hours ago with Katera. Surgery was supposed to be at noon yesterday (Friday, the 7th) but was delayed till around 3 pm....all went well. The neurosurgeon (NS) said Katera had some scar tissue in around the area of her filum (the part at the base of the spinal cord that they were " clipping " and releasing) and asked me if she had ever had spinal fluid drawn. She had.... at 17 days old, when she had her first seizures and they didn't know why.... emergency situation, checking to make sure she didn't have meningitis. The cultures took 3 days to come back but were negative and so the spinal tap was for naught but I do remember being told that they had to stick her twice because the first one didn't work (why, I have no idea.... bleeding????). It never occured to me to tell the NS about this ahead of time,..... no one asked and frankly, it had slipped my mind entirely. Anyway.... it seems that scarring, and some dead nerve roots in there had contributed to her tethered cord, according to the NS's opinion. This isn't something she had seen at all on the MRI of course, but interesting that it was right where she was going in to detether is the same area they would have drawn the fluid.... over 5 and a half years ago. Katera had a rough time in recovery.... we aren't sure what was really bothering her the worst. She just screamed for two hours and clawed at all the things on her face (oxygen cannula, stomach tube), despite pain meds. Rough night last evening with nausea and vomiting mostly....but then she slept pretty well.... once she threw up every bit of water, jello, etc.. She woke up perky and bright-eyed at 6:15 am this morning (Saturday)! Pain-wise she seems okay on plain Tylenol and Motrin now (finally fell asleep just now at 4:30 pm). Incision looks great. > > I'm exhausted.... no sleep for me! Who can sleep in hospitals? > > Glad to be home.... > Patti > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Hi Patti Glad you are both home safe'n sound. I bet you are ready for a really long sleep now! Hope Katera recovers well and that you see some improvements from the surgery. Jill At 07:46 AM 6/9/02, you wrote: >Hi .... >Just got home a couple of hours ago with Katera. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Patti, Glad you and Katera are now. I think it is always easier recovering at home. Sorry to hear of the hard time after the op. Hopefully it's all behind you now, and you can look to the benefits. Hugs to Katera. Saro & Rohan Quote Link to comment Share on other sites More sharing options...
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