Latest MRI

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Latest MRI

Postby kahlismum » Thu May 17, 2007 4:52 am

I used to be on here as 4kids2many. But as some others did i too used a new username.

Anyway to the point, Kahli had surgery 3 yrs ago for SM. She had an MRI within 3 months of surgery, and was told she had to then have annual MRI's..

Yesterday she finally had one, we have waited for what seems forever for this, and she is now getting more pain, and numbness, along with bladder weakness.

Alas here in NZ we do not get results very quick, we have to wait to see the NS to know anything, and we have now been told her NS is not coming to our city anymore, and we will have to wait to see someone else, and we meanwhile await any update on kahli's results. I hope we have more details before we come to the conference, then i may have a better idea as to what information is more relevant to her.

Postby hayla2 » Thu May 17, 2007 8:27 am

I always hated the wait. I am a pushy person, though, when it comes to my children. I MAKE them give me results in a timely manner or I bug them until I get them. They would give in. Now, they give them to me over the phone if it will be too long for the next appt. If you want them now, maybe you can get a little pushy. Melissa
Posts: 91
Joined: Wed May 16, 2007 6:37 pm

Here we go again

Postby kahlismum » Sat Jul 07, 2007 6:02 am

Kahli had her MRI results, they only scanned her thorasic spine area, where her syrinx and shunt is, now she has now developed kyphosis of 25 degrees in 6 weeks(noticed by xray) and her NS has requested another urgent MRI to see if she also has tethered cord, and to see if that has been the cause of her kyphosis, or if the shunt has caused it. She has her repeat MRI next week, 2 days before we fly to Seattle to attend the ASAP conference so will have to wait 2 weeks till we return home for results. What gets me is they tell me she has had too many xrays in her life so far, (we are up to xray set number 34 she is 12 yrs old), but they tell us she will have to have a series of xrays to asses if the kyphosis is progressing and how rapidly. I didnt realise they restricted the number of xrays a person could have. Anyway, there is my vent for today, i guess we have to play the "hurry up and wait" game for results and answers. Im looking forward to the information through the ASAP conference that will help us in the future.

Postby mamashu5boys » Tue Jul 17, 2007 5:02 pm

I hate weighting for tests and then waiting another month or two for the doctor to tell me the results. Now I make it a habit that before I leave the hospital after an MRI or other test, I arrange to pick up or be mailed a copy of the lab report. I also now have a copy of all the films ever done of my son; the first x-rays and MRI are on real film the others are on CD.

I find that getting the same report that the doctor gets gives me way more information and it’s a great source to pull out questions from. I usually have the report in my hands within a couple days if I pick it up or 7-10 days if it’s mailed. Maybe you can see if you can make this kind of request where you are, it’s still weighting but not as long.

My son has had and will have x-rays every 4-6 months his whole life. He has also had a CT that equals 50 x-rays; he will very likely get more CTs in the future. I know x-rays are bad and should be limited as much as possible, but no one has ever told me there is an exact limit.

Best wishes,
Mama to 5 beautiful redheaded boys
Rory age 14, Evin age 10, Brandel age 6, identical twins Keegan and Conley are age 3. J
Keegan has progressive congenital scoliosis at 60ish° a hemi vert at T-5, two fused ribs, several vertebrae fusions, a rib hump measuring at 14+, a solatary left kidney, scatterd areas of abnormal signal within the brains white matter, sacral hypogenesis, L2 conus with a filar lipoma. He also has a syrinx causing lower limb nerve damage, that we hope will clear up on its own after his tethered cord release surgery on Oct. 18, 2006

Postby angie7 » Tue Jul 17, 2007 8:55 pm

mamashu5boys wrote:Hello,
I find that getting the same report that the doctor gets gives me way more information and it’s a great source to pull out questions from.

Absolutely agree!!!! I have all my med records, from every MRI and even my doctors notes...I soon realized that they dont tell you everything. I had to find out about my deg disc and cervical kyphosis by reading the MRI reports and then calling the doctor (after I saw them and they didnt say anything) about what it meant. Truly frustrating. I know with my last MRI I had it on Friday and I got the report by Tuesday and my NL was out of town until the following week. So before he even told me the results, I already knew them haha!! Definately get the reports!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

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