Bad news from our MRI - Page 2 - Mothering Forums
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#31 of 57 Old 06-14-2006, 10:26 AM
 
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Christi
DS1(12), DD(7)blessed with T21, DS2(2), and DD2 - newly arrived 1/28/11
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#32 of 57 Old 06-14-2006, 10:42 AM
 
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Originally Posted by CarolynnMarilynn
Well we met with the neurosurgeon today. The neurofibroma is directly on the spinal cord, under the dura mater even. It is also over the dura mater. It measures 1.5cm by 2cm so is pretty large. It is at the 6th thoracic vertebrae. The good news is that we will watch and wait for 4 months, as it may be stable, and his neurological exam was normal. We may still be facing surgery but not immenently. Still, the tumour is very serious, particularly since it is on the spinal cord directly. I am scared and worried.
Oh geez. I'm so sorry. I'll keep you in my prayers.
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#33 of 57 Old 06-14-2006, 09:10 PM - Thread Starter
 
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Thanks. Still processing.
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#34 of 57 Old 09-30-2006, 11:45 PM - Thread Starter
 
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Well, we didn't an MRI in the two-month timeframe like we were told we should. When we met with the neurosurgeon last June he said Kai should be re-scanned in 3-4 months time. Well, it was 4 months last week and I called. I was told the MRI suite was being renovated and they were down to one machine (from two) and everyone had to wait. :

I called around, and spoke with the neurosurgery coordinator who said she'd call the MRI dept and see what they could do. Yeah, like the clerk who answers the phone can bump appts. I asked that the neurosurgeon be informed of the wait we had endured, and asked that he make the decision that it was ok to wait or not. Well, 12 hours later we have an emergency MRI this Sunday (tomorrow). I guess someone read the file, huh?

So now we are on the worry-go-round again. When we didn't have an appt it was easy to be in denial.

Anyways, please light a candle for him, say a prayer, send good thoughts. I really don't want to have my 8 year old sweet, sweet boy go into spinal surgery and under a general anesthetic. I worry every day that I am going to lose him.

If you guys could meet Kai, you would instantly see that he is special. He is such a wonderful kid, and I am so honoured to be his mom. He is truly one clear, true soul and he has more integrity, compassion, and clarity than almost anyone I know, including me. People tell us all the time what a joy he is. Sometimes I feel that my sole role as his mother is to protect him, and everything else has already been taken care of. He is so loved.

Carolynn
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#35 of 57 Old 10-01-2006, 12:13 AM
 
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Prayers for Kai!
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#36 of 57 Old 10-01-2006, 07:57 PM - Thread Starter
 
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Thanks. The MRI went better than last time -- the IV insertion was difficult for him, but not nearly as traumatic as last time. Now we wait....
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#37 of 57 Old 10-09-2006, 12:45 PM - Thread Starter
 
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Well, the latest update is that we have an urgent recall visit back to the neurosurgeon. Just like last time, we have been fasttracked. I am hoping it is to give us positive results, but my practical side says that unfortunately, they have fasttracked us for unfavourable results. We are going in a week. I find it very hard to contemplate what surgery will mean to us, to him. I am pretty upset by it all.

I have called the Neuro's office a few times for the MRI results, but am told that the films haven't been read yet (which I don't believe-- c'mon-- last time they were read within 12 hours and that scan was just routine with nothing to suggest there was a spinal tumour). Anyways, I will keep trying and see what I can find out before the appt as it is torture waiting.
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#38 of 57 Old 10-09-2006, 01:10 PM
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I'll keep in your family in my thoughts and prayers.
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#39 of 57 Old 10-09-2006, 01:22 PM
 
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ugh, I wish they could expedite certain cases to get the family in faster in situations like these. I know if my kid had a non-urgent appt and someone from her neurologist's office called me to say "We have a very urgent case to put thru, do you mind coming in next month" I would!!!! but, I know it's unrealisitic. just frustrated for you.

DD1 7/13/05 DD2 9/20/10
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#40 of 57 Old 10-09-2006, 01:31 PM
 
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#41 of 57 Old 10-09-2006, 01:36 PM
 
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hugs and prayers from here..

I will say it took a year for the nim wits that Riley had a couple years back to actually FAX Kait's MRI reports to her neuorlogist five miles away
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#42 of 57 Old 10-12-2006, 08:57 AM - Thread Starter
 
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Originally Posted by bri276 View Post
ugh, I wish they could expedite certain cases to get the family in faster in situations like these. I know if my kid had a non-urgent appt and someone from her neurologist's office called me to say "We have a very urgent case to put thru, do you mind coming in next month" I would!!!! but, I know it's unrealisitic. just frustrated for you.

Thank you -- the neurosurgeon has clinic just once a week, so we did get into the second-next clinic date, but still! I have been calling and calling and just want to know. I had a dream that the tumour grew minimally. Let's see if I am correct!

Thanks for all the support. I really appreciate it..
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#43 of 57 Old 10-12-2006, 11:37 AM
 
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I am so sorry! I know how phone calls a neurologist after an MRI can feel.

When my dd had her brain MRI (they were putting her under to do her spine anyway but didn't expect to find anything on the brain scan) and called the next day to tell us that she had scarring in her brain I was stunned, shocked and upset.

Thank God, for us, there was no progression at the last scan.

I hope the news isn't what you are fearing. I am praying though because urgent visits usually are, as you fear, not for good news.

((HUGS))
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#44 of 57 Old 10-12-2006, 04:36 PM
 
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Thinking of your son...I know how worried you must be.

I also have NF.
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#45 of 57 Old 10-23-2006, 03:01 PM - Thread Starter
 
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Well, we have good news! The tumour has stayed stable, and we are just going to return for another MRI in 6 months! Other than the tumour shrinking, it was the best possible news!

Thanks Mamas for your support!
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#46 of 57 Old 10-23-2006, 03:51 PM
 
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I am so glad it wasn't bad news.

I hope you get good news in six months!!

Can you schedule the follow up for right after the MRI (a couple days or a week) next time so you don't have to wonder and worry for as long?
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#47 of 57 Old 10-23-2006, 05:06 PM
 
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Quote:
Originally Posted by CarolynnMarilynn View Post
Well, we have good news! The tumour has stayed stable, and we are just going to return for another MRI in 6 months! Other than the tumour shrinking, it was the best possible news!

Thanks Mamas for your support!
Yay! That is GREAT news!
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#48 of 57 Old 10-25-2006, 11:45 PM
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Carolynn, I've been quietly stalking you here, watching for updates. I'm so, so glad that you got good news.

professor & maman de DS1 (6) & DS2 (1)

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#49 of 57 Old 10-26-2006, 01:56 AM
 
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wow, that is a huge relief. I am glad for you.

I need to start looking up NF. It was just mentioned to me today as a possibility for my dd (12). She doesn't have many spots but I haven't looked in a long time. However, she had some HUGE drops in her cognitive and academic testing this past year. The neuropsych we talked to today had mentioned ruling out NF and some other neurological type issues.

Renee
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#50 of 57 Old 06-29-2007, 10:08 PM - Thread Starter
 
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We went for another MRI in mid-June and are awaiting the most current results. I suspect that since they haven't called urgently that there is no growth, again.
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#51 of 57 Old 06-29-2007, 10:13 PM
 
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Good news all around. NF is a tough disease.
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#52 of 57 Old 06-29-2007, 11:25 PM
 
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Wishing you the best possible news!
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#53 of 57 Old 06-30-2007, 12:16 AM
 
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Quote:
Originally Posted by CarolynnMarilynn View Post
Well, we have good news! The tumour has stayed stable, and we are just going to return for another MRI in 6 months! Other than the tumour shrinking, it was the best possible news!

Thanks Mamas for your support!
That is such great news! I am so glad your son is doing well.
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#54 of 57 Old 07-01-2007, 02:15 AM
 
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That's good news!
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#55 of 57 Old 07-02-2007, 01:10 AM
 
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I am so glad it's good news. I've been wondering how you both were.

My son has an appointment with a dermatologist on Tuesday to get a better count of how many CAL's he has now (last year it was 6, this year I would guess at least 10) and whether the multiple CALs that seem to be appearing in the groin area would count as freckling. My DH and I just admitted to each other the other night that we both think he has NF1 now.

The unpredictability of NF1 is really hard for me to deal with--you never know what if any tumors will appear nor do you know whether you are better off treating or watching when they do appear.

to you and your family

Sherri
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#56 of 57 Old 07-02-2007, 11:39 AM
 
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Lots of positive thoughts and prayers are sent your way.

Mary

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#57 of 57 Old 07-02-2007, 09:21 PM
 
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I'm so glad you got good news!

secular classical-ish mama to an incredible 5 year old DS and an amazing 6 year old DD.
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