15th annual MRI

[marie]

I went yesterday for my 15th annual MRI.  (I've had probably 18 or 20 total)  Usually, there's nothing to it.  This time was awful.  I arrived at the hospital at 1:15 pm,started filling out the paperwork.  They called me back  to draw blood for the kidney test.  He drew it out of the back of my hand---very tender!  Somewhere between 2:00 and 2:30 I was called back for the MRI.  First, they did my right arm (NF2, something going on with the arm).  That took about 30 minutes.  Then they turned me around so that my head and feet were reversed.  Banging and clattering for about 40 minutes.  Then the fun part.  My veins are terrible and it took I don't know how long  and 6 to 8 sticks  and three different people to finally administer the contrast.  They put every needle in the back of my hand.  I  had 10 minutes of picture taking, then I was finished.  It was 5:30pm!  All day today I've had muscle pain (gradually receding) in my back.   At this point I'm thinking I'd like to forego any further testing for a lonlg time.  I know I can't, but I sure want to! After almost 41 years of dealing with ANs, I'm really tired of it.

[Nancy Drew]

Hi Marie,

Wow, what a day, and I can understand why you don't want to go through all of that again.  I am so sorry you have been burdened with ANs for so long.  I wish I knew more to say.  Hope you are feeling better and that the memory of yesterday will leave you soon.

Nancy

[marie]

Thanks for the sypathy, Nancy.  I think I was mostly feeling sorry for myself.  About an hour ago my ENT called to tell me that the written report says the tumor has grown.  At this point I'm waiting for Dr. Brackmann's evaluation. 

[mimoore]

What a drag. Sounds like a tough day! Take it easy and do something you enjoy. For me it is a nice hot bubble bath and a soothing glass of wine. Relax, breath easy and be extra nice to yourself.
Hugs Michelle 

[Nancy Drew]

Hi Marie,

Nothing wrong with feeling sorry for yourself.  The fact that the tumor is growing is not something you can throw off lightly so don't be hard on yourself.  Hopefully you will get better news from Dr. Brackmann.  Keeping my fingers crossed and like Michelle said, do something nice for yourself.  For me, it is a nice hot bath and some chocolate.  Keep us informed.

Nancy

P.S. Tears are OK, too.  I cry all of the time, and it actually makes me feel better.

[Kaybo]

Marie~
Sorry that was so traumatic for you - how awful and now to find that it is growing.  I am so sorry.  We will be waiting with you to find out what Dr. Brackman says...may you have some measure of peace while you are waiting.

K

[Brendalu]

Marie,

I was wondering about your results the other day.  Sounds like you and I share more than AN's and NF2's, poor veins to boot.  I'm praying that when Dr Brachmann takes a peek he will see that the growth isn't abnormal or fast and you can get back to life of the annual MRI. 
I'm sending you cyber hugs (((((((((((((((((((((((((((((()))))))))))))))))))))))))))))))))))).  You take care and like someone else said chocolates and a nice bath help a lot, so do a few tears and then pick yourself up by the bootstraps and be that strong person I know you are.  You deserve a good report and I'm praying for it.
Hugs,
Brenda

[Rivergirl]

That is just an awful day, I bet you are at the point where it was all just a big pain in the butt so combine that with all the delays, needle sticks, banging, makes for a day to forget, hope the results were good though.

[GRACE1]

I don't know where to start other than to say how bad I feel that you went through such an ordeal.  Bless you!!  Since you have not had such a hard time in the past, I would talk to my doctor to make sure he knew what went on and to see if he could prevent some of it from happening in the future.  Let's hope and pray the growth is small and slow.

I know you must get tired of the annual MRIs, but you have to admit that you are so lucky to come through all the procedures you have had.  Next time this might help:  Since I have only 1 kidney, the blood tests for kidney function are very important to me.  I have my 19-month follow-up MRI scheduled for Dec 09.  I will get my blood test done locally the week before and take the results with me; this will prevent me from being stuck at Wake Forest - I also have bad veins.  Also, for anyone with kidney issues, after all MRIs and CTs I ask the doctor ahead of time to approve me to be hydrated after the procedure - they give me a small bag of fluid to help flush out the contrast.  I was lucky enough to find out about this my a great radiologist at Emory in Atlanta.

Please do forgo any testing you need.  From what I have read on this site, most people go for annual MRIs.  After my 6-month post GK MRI, my doctor told me I did not have to come back for 2 years.  Due to various reasons, it will be 19 months between my MRIs.  Perhaps it would have been OK for you to have semi-annual MRIs -- but that is shot down since they discovered this growth.  For me, because of the contrast, it will be good if I can have MRIs every other year.  I will have to see what this MRI shows before I am totally confortable with having them every other year.

Keep us informed.

Grace 

[marie]

Thank you for the pep talks and good wishes. 
 
Grace, I have never heard about the rehydrating.  It's a good idea.  What really gripes me about the kidney test is that I had had blood drawn and tested on October 10th  and they wouln't accept those results because it was over 30 days. I didn't know there was a time limit on the testing.
All in all I've not had really bad things to overcome as a result of the ANs.  Six surgeries , no headaches, no pain medication other than Tylinol (not T3), didn't have to have any  kind of therapy (walked without aid except for handrails from the beginning and trained myself to enunciate my words so that people could understand me---the left side of my mouth and the left side of my tongue are paralyzed). 
Now I've forgotten the other thing I was going to say.  (I have cognitive difficulties, too. ) 

[sgerrard]

All in all I've not had really bad things to overcome as a result of the ANs.  Six surgeries...

As far as I'm concerned, six easy surgeries would still be a lot to overcome. 

I think the best advice I have is to hang out on this forum more - we need people like you, who can go through six surgeries and still have such an upbeat attitude.

I hope Dr. Brackmann has good news for you.

Steve

[GRACE1]

The contrast can possibly cause problems with your kidneys.  They want to make sure you have good kidney function before they administer the contrast.

Grace

[marie]

Still waiting.    I hope the hospital has sent the images in a timely manner.  I live in northwest Arkansas and they have to be sent to Los Angeles.  I really miss my former MRI doctor.  He had his own setup.  They took the pictures, I went to the waiting room for about 15 minutes, then he called me back to a wall full of images.  Really fast results.

My chiropractor told me that some people have some knee pain for a short time after having  contrast. 
When I figured out that my back pain wasn't from the kidneys, I called him and he fixed it.

[wendysig]

Hi Marie,
It sounds like the day of your MRI was an awful one.  It's okay to feel sorry for yourself as long as you don't stay there too long.  I'm truly sorry to hear the MRI showed tumor growth and hope Dr. Brackman has some positive news for you.   Please keep us posted.

Best wishes,
Wendy

[marie]

Heard from Dr. Brackmann today.  Last year it measured 8 x 10 mm.  It now measures 8 x 12 mm.  Still small.  My hearing is basically the same as last year. 
And so it goes ----on and on andon.