Nervous about an MRI.... update #14 - Page 2 - Mothering Forums
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Special Needs Parenting > Nervous about an MRI.... update #14
snuggly mama's Avatar snuggly mama 08:38 PM 07-20-2008
Quote:
Originally Posted by loraxc View Post
Bumping this because I am nervous about DS's MRI on Tues and could use some BTDT support. Turns out he is having GA after all. This is freaking me out just because he's so small and is a little bit of a mystery diagnosis still--like, what if there's some heart or breathing issue no one's caught yet? He's only 5 months. DD has been udner but she was much older (2 and 3) so this is my first time doing this with a tiny baby. I'm also not looking forward to not nursing for 4 hours. He will be a wreck, as he nurses every hour and a half usually.
Dd had her first MRI at 8 weeks old, and while I was a wreck, she did great. She was a little sleepy for the rest of that day, but otherwise fine. She's had plenty more scans, tests, and surgeries since then, and she's still a trooper!

Sleepymama's Avatar Sleepymama 01:02 PM 07-21-2008
Quote:
Originally Posted by workjw View Post
Too be honest, I'm not really sure. I think it is a number of things. They seem to be able to find the vein, but either can't get to it, or it collapses (I think that is the right word). One nurses said she had "rolling" veins, another blamed it on baby fat. A lot of times they get clotted and can't be flushed, and have to be redone.

She's had 8 IVs and 2 picc lines in the last year, and no one has ever gotten it on the first try, 3 seems to be our lucky number. For her last surgery, they gave up after 5 tries and waited until she was in surgery to insert it.

She really doesn't complain much the first try, poor thing. She has a pretty high tolerance for pain, but by number 3 she's done playing nice, and who can blame her?!?! Luckily she still forgives and forgets very quickly. A few mins later she was wearing the docs stethescope and laughing.

Hmmm... I probably should have mentioned some of this in the first post...
Mine never plays nice--but I don't get why they don't wait to do IVs until they're out in the first place? When DS was a baby I watched all kinds of incompetent people try to put IVs in through scar tissue, and I really wish they had just put him out first. It was horrible. But I didn't know any better. Now they either give him a shot or he drinks versed and they do the IV after he's asleep. Much easier all around. Part of the problem is that when they've had a lot of IVs they get scar tissue in there and it makes it so much harder.

As for the MRI, having it done first thing in the AM is best. If you can wake up in the early am, nurse, then go back to sleep, then hopefully not wait long at the hospital before you have it done it will be easier. Having to wait around is the WORST. But they usually take the younger ones in first.
loraxc's Avatar loraxc 12:19 AM 07-23-2008
Just updating--he had his MRI today and all went fine, although it's no fun watching them pass out, of course. FTR, they didn't put in the IV till after he was out (and they obviously had some trouble, as his poor wee hands are all stuck up) . He came out of the anesthesia much more easily than my DD has in the past--maybe because he didn't have any Versed? Recovery was a snap, anyway, which was a relief.

Now we wait, but I'm really glad the test is over. *sigh*
MyTwoAs's Avatar MyTwoAs 12:42 AM 07-23-2008
Aww poor guy with all the sticks. Versed is a nightmare - so glad he came out of the anesthesia better.
KatWrangler's Avatar KatWrangler 11:56 AM 07-23-2008
Do you have any results yet?
loraxc's Avatar loraxc 12:54 PM 07-23-2008
I don't have any results yet (24-48 hours), but interestingly the nurses said that if they'd said anything "really major" they would have informed us. (This really surprised me. I didn't think they ever did that on the spot unless it was urgent.)
KatWrangler's Avatar KatWrangler 12:58 PM 07-23-2008
Quote:
Originally Posted by loraxc View Post
I don't have any results yet (24-48 hours), but interestingly the nurses said that if they'd said anything "really major" they would have informed us. (This really surprised me. I didn't think they ever did that on the spot unless it was urgent.)
Gabrielle had another MRI on Monday. They burned the MRI on CD's for me (I needed one for the New Neurosurgeon, Shriners and the Ped...need a copy for us too so we will burn a copy for us). They told me it would be interpeted and should have the results on Tuesday. Well when I went to the main hospital to pick up her medical records for Shriners and the new NS, the MRI interpetation was already done. this is less than two hours later.

So I think it depends on when the Radiologist can read it. Like in when we lived Montana they had to send her MRI's to Salt Lake City for interpetation.

ETA - Unless the Radiologist is there during the MRI, I don't think they will tell you anything. Now, if the Tech sees something he/she may call the Radiologist to come over and see it. Providing there is a Radiologist available.
mamaverdi's Avatar mamaverdi 01:19 PM 07-23-2008

workjw's Avatar workjw 10:48 AM 07-25-2008
We got our MRI results back yesterday, and they were negative for any neurologic problems. ::: We assumed they were since we hadn't heard anything, but it is nice to know for sure.

The MRI did give us some other useful information about possible problems with her kidney and ureter on the left side, so I am really glad we had it done.
mamaverdi's Avatar mamaverdi 11:17 AM 07-25-2008
Was it spine and brain? And you no it means no structural abnormalities, right? Not "no neurological problems." Hoping they told you that. (And please get the report yourself.)

What did it say about her kidney and ureter?

and :
workjw's Avatar workjw 02:07 PM 07-26-2008
Quote:
Originally Posted by mamaverdi View Post
Was it spine and brain? And you no it means no structural abnormalities, right? Not "no neurological problems." Hoping they told you that. (And please get the report yourself.)

What did it say about her kidney and ureter?

and :
It was only spine (lower thoracic and lumbar), and yeah, I know it just means no structural abnormalities, but only from my own research (and you guys). They simply told us "no neurological problems were seen". As always we got the smallest amount of info they could give us.

Uro didn't even mention anything else that the report said. Luckily I was able to get a copy of some of her records, but not until after our appt. According to the report, they noted "left hydro-ureteronephrosis . The posterior bladder wall is thickened with a cystic structure at its base possibly representing ureterocele. Normal appearance of the thoracic and lumbar spinal cord".

At this point, I'm not even sure what all of that means. Apparently uro is not at all concerned about it, since they didn't mention it, but I have been scouring her records and see that there were notes made about it previously and uro called it "stable" whatever that means. So they knew about it before the mri. Dh thinks it must not be anything important or they would have told us, but I feel like it's something they should have at least discussed with us, and they should tell us WHY we don't need to be concerned about it.

Her records have been a little difficult to get (mostly b/c of my ignorance). The office told me I could only get them by mail at $0.85 a page plus postage and tax. Her records are hundreds of pages! Come to find out, not true, they will give them to you if you go to the basement and request them, but you have to know specifically what you need.

Anyway, it has been a difficult learning curve for me.

I also found that her records don't always say the same things as we were told, and some things we weren't told at all. It's quite frustrating. Example: we were told all of this time that she had 4 complete ureters, but the records show 3 complete, and one partial that connects back into the lower pole. Not incredibly vital info, but why were we given the wrong info?!?!?

I can't wait to see the other uro for our "second opinion". We had the appt set up, and then the new uro retired : so now we are waiting to get a new appt w/ a new doc. We should know by next week when we get to see him.
mamaverdi's Avatar mamaverdi 12:44 AM 07-27-2008
Oy. That's all too common unfortunately. Honestly, you will work yourself into a froth and then some if you don't step back and know, the records aren't always accurate AND you aren't being told everything. period. Having doctors you trust can be a challenge to find AND keep (they retire, move, stop practicing, move).


KatWrangler's Avatar KatWrangler 10:45 AM 07-28-2008
Oh we could start a whole thread on medical records.

Yepper, get them all and start a notebook. Not just written records but films as well. Get the MRI and all other tests burned on a CD for you and make copies of it! Do you see the Uro at a hospital or hospital clinic? I assume the MRI and Urological tests have always been done at a hospital. Go to medical records at the hospital and get them. Some places charges, others do not. Just go in there like you know what you are doing and say "I would like copies of all my daughters medical records, written and the films burned onto a CD. By the way, could I possible have two copies? Pretty please (the written ones you can copy yourself, but its nicer to have THEM burn the films to CD). " Just tell them you need to take them to another Doc for a 2nd opinion.

I just got all my daughters hospital (from the new hospital in Kansas City. I have all her other records) records/MRI last week for Shriners and for her new Neurosurgeon. The lady at the desk was giving me grief about, telling me it would take 7-10 days, which is not what I was told over the phone. A superviser came out of her office and asked if she could assist me. I got them all (I already had the films on CD from the other hospital location. They burned those like an hour before I got to medial records.
mamaverdi's Avatar mamaverdi 09:39 PM 07-28-2008
We scanned all our printed records and made them pdfs, then we take those w/us on thumb drive and/or cd to appts instead of dragging paper records. Yes, we are geeks.
workjw's Avatar workjw 11:47 PM 07-28-2008
I'm a geek too, just a naive one! We have all of her info, and records from out of town and from her peds on a "health usb" thumb drive, I just don't have the right ones from uro (still don't have all of them).

I feel like an idiot! I talked to FOUR people at the hospital before someone finally told me I could get them free. Until this week I was just getting a page here or there from them when I needed something specific (and paying for them). I still didn't get a fourth of what I was looking for. Apparently I am going to have to fill out a billion forms and write specifically which info I want, listing every u/s, vcug, urodynamics, blah, blah and when they were performed.

I had dh take off this Wed, so maybe I can finally get the info I need. To be honest I am floored by my own naivity (often) when it comes to the medical world. I just assumed drs were there to HELP you.... . Look at me growing up right in front of your eyes!
mamaverdi's Avatar mamaverdi 11:55 PM 07-28-2008
: I'm going to sit here quietly not making any comments about this: "I just assumed drs were there to HELP you.... "
KatWrangler's Avatar KatWrangler 01:11 PM 07-29-2008
I'm a nerd wannabe. I was like what the h*ll is a thumb drive? I asked my husband and he just rolled his eyes at me. So I guess he is already a nerd.

Yes, we are in the process of scanning all of our medical documents too. Oh and we keep track of our medical bills with Quicken Medical Manager. Awesome program. Tracks mileage too for tax time.
loraxc's Avatar loraxc 05:34 PM 07-29-2008
Quicken Medical Manager, you say?? Hmm. Need to look into that one. I'm about 90% sure we could have deducted our medical expenses last year had we been organized enough.

To update on us, too, DS's MRI (head only) was normal. : Now we have a neurology workup and blood draw next.
KatWrangler's Avatar KatWrangler 05:37 PM 07-29-2008
Quote:
Originally Posted by loraxc View Post
Quicken Medical Manager, you say?? Hmm. Need to look into that one. I'm about 90% sure we could have deducted our medical expenses last year had we been organized enough.

To update on us, too, DS's MRI (head only) was normal. : Now we have a neurology workup and blood draw next.
Great news! :

Here is info on Quicken.

http://quicken.intuit.com/healthcare...e-software.jsp
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