what could this mean?

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what could this mean?

Postby drummergrl » Fri Jun 22, 2007 10:45 pm

I had my 2nd post op MRI today and now I have some questions... it was supposed to just be a regular brain post-op MRI. After 45 minutes or so the nurse came in and said that the radiologist who was checking my scans (they always have one there reading them quickly to make sure you didn't move) had called my neurosurgeon to "talk with him about something." Apparantly my neuro and the radiologist wanted to have me do a full spine scan, but when I asked why the nurse got really guarded and just said that I needed one. Then I got put back in the tube for 2.5 hours to think about that.

Obviously I am freaked out behind belief. I've been kind of worried about my health anyways, but in the back of my mind I had assumed that I was just overreacting. Now that the radiologist wanted to call my extremely busy neurosurgeon, I am terrified. I've been kind of researching some related conditions and a lot of my symptoms match those of tethered cord. Is it possible that this could have been missed for so long? I mean, we all missed my chiari/sm symptoms until I was 16, so I guess it's possible to have this now, right? My appointment is on Monday, and I'd kind of like to go in there with a little bit of info on what tethered cord surgery is like. Has anyone had the surgery? How long would I be out of school? Is it comprable in length of recovery to chiari decompression? I'm not trying to jump the gun, but I know myself and I tend to freeze and not talk during appointments when I get bad news. I didn't say a word the entire hour long appt. I found out about chiari. So I guess any info you guys have would be sooooo appreciated.
CM, SM, Scoliosis
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Postby mac » Mon Jun 25, 2007 1:10 am

Bekah, I posted a long reply to this and it never got posted for some reason. I'm so sorry no one has seen this and replied yet...tomorrow, you will go get the results. I hope you were able to enjoy the weekend somehow and not worry too much.

What happened to you was simply wrong. To have not let you know what was going on and then to have you go thru 2.5 more hours of MRI. Simply heartless and cruel in my book! I would tell the NS about that.

About the TC, yes, it can be hidden from view on the MRI and a radiologist not pick up on it. Often TC is dx'd from the symptoms and from the results of a urodynamics test.

When you go to the doctor, write a list of questions you want to ask and don't leave until they are all answered. Take a supportive friend with you or your Mom and have them just sit there and listen. Instruct them that they should not really input anything into the visit, they are there just to listen and help you remember what was said. The person who goes with you should be totally supportive, someone you can trust to not tell others, and someone who will not judge you. Someone "on your side."

You can also take a recorder and ask to record the visit. That will help you to remember.

I'm sorry I didn't get this reply to you sooner. I hope you are doing okay and my prayers are with you. Pls let us know what transpires at your appt. tomorrow.

I can't answer your questions on the TC surgery b/c I haven't had it yet. I've read a lot about it recently on the CCI message board. Not as many people post here on the weekends, and I know Barb just had the surgery, Glenna has had it, Keesha too.

Remember to make that list of your symptoms and a list of questions, and don't feel intimidated, okay? Go over all the questions and don't let anyone hurry you. Wish I could go with you!

hugs, yer pal mac

Postby kiminfla » Mon Jun 25, 2007 8:04 am

Bekah, I hope your appt goes well today! I'm sorry I missed this too. Like Mac said, be sure to get all your questions answered. Prayers for you. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby petsmom » Mon Jun 25, 2007 6:27 pm

In all fairness to the nurse at the MRI. She is not allowed to give you some information as she is a nurse. Yes, there may have been something seen that had to be discussed between doctors first. This is standard operating procedure. Then the doc tells you after he has reviewed the films and made a finding.

Yes, that sounded very tense and scairy. But if she had given you incorrect info at the time then it might have seemed worse than it was. Neither the nurse or radiolgist normally goes to the patient and tells them any findings or discusses any thing. That is left up to the doctor who ordered the MRIs, films, bloodwork, etc.

Hopefully all is well.

Dawn, TNgal
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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