[bluemom]

If I had an MRI without contrast months before my TN started (for another condition,) and it came out good, how important is it for me to get an MRI WITH contrast now? I don't want to spend more money if I don't have to.

bluemom

[easygoing]

Originally Posted by bluemom

If I had an MRI without contrast months before my TN started (for another condition,) and it came out good, how important is it for me to get an MRI WITH contrast now? I don't want to spend more money if I don't have to.

bluemom

TN can be a funny disease and does not always show up on an MRI no matter what kind you have. it is best to get a thin slice with contrast. it has a better chance of showing a compression. Even if you have the right MRI and it shows nothing, it does not mean you do not have a compression. there are some Dr that will tell you you that if a compression doesn't show up, then it is not there.
I had a compression and it did not show up on my first MRI. I did have a second MRI that showed a compression and had MVD surgery. I had already decided to try MVD even if I did not ace anything show up. there are some very excellent neurosurgeons, including the Dr that developed the MVD surgery that feels your symptoms are the best indicator of what type of TN you have and whether an MVD will be successful.
I had a second MVD because my pain came back after a few weeks and they opened me back up based on my symptoms and fixed a problem. they did not even feel the need to do the MRI.
I guess I would ask the question, what are you trying to accomplish with the MRI. Are you thinking about having an MVD? Do you just want a possible confirmation that you have typical TN? if you are just going to try the meds right now and see if they help and aren't contemplating surgery, then it may not be worth the cost to you right now.
I always wanted to know everything I could and would have paid whatever I could to find out and fix this terrible disease.
I have read several of your posts recently, but not all. have been sick the past few days. I remember you have lupus - I have Sero negative RA, with crossover symptoms. my rheumatologist always tells me that even though I fit RA, she thinks I have some weird, rare auto immune something. She also thinks that there has to somehow be a connection to my TN and autoimmune problems.

[Mylastnerve]

Originally Posted by bluemom

If I had an MRI without contrast months before my TN started (for another condition,) and it came out good, how important is it for me to get an MRI WITH contrast now? I don't want to spend more money if I don't have to.

bluemom

Hi Bluemom,
I agree that about the "thin slice" (takes more pictures at smaller increments)MRI, and the contrast also helps. My neurologist did a regular MRI, and no TN showed, so they kept calling my pain "idiopathic". When I finally got to my neurosurgeon, he was bothered that they hadn't done one yet (thin slice w/contrast) and ordered it immediately. And there he found the compression - it had been "hiding between the slices" of the standard MRI. When he finally got in there, he found 3 compressions. So the MRI is definitely not the "be-all end-all" of diagnostic tools. I would definitely insist on the thin slice w/ contrast, though.
Lily

[bluemom]

Thanks, everyone! I'm going to call my insurance today to see if I'll be able to afford the MRI. I have a thin-sliced with contrast scheduled for tomorrow, just worried about my copayment.


bluemom

[Doodle bug7]

I just had an MRI yesterday of my brain because I have a new neurosurgeon. I think that if I had an MRI a month before, she would still want one of their own. I was started on a new med. Tramadol. Has anyone else been using this?
Bless, Doodle bug7

[Doodle bug7]

I know there is nothing funny about this subject but every time I read about a thin slice with contrast I think about a piece of toast with jelly.
Oh well.....Doodle bug7

[easygoing]

Originally Posted by Doodle bug7

I know there is nothing funny about this subject but every time I read about a thin slice with contrast I think about a piece of toast with jelly.
Oh well.....Doodle bug7

Doodle bug,
I think that we all need to find humor wherever possible. your little thought made me smile this morning, so that was wonderful.

bluemom,
How are you? have you had your MRI and how are you feeling?

I had my stim implant trial yesterday and I like it so far. not taking away all the pain, didn't think it would, but I actually can feel my face feel relaxed. it is a wonderful feeling. I think my face has been tense for 2 years.

I need to sit down and write more of my story here sometime.

I am still having pain from trigeminal again in v2 from a tooth abcess. started in mid may again. Definitely had abcess, they definitely fixed tooth problem but TN back. Worries me because I had 2 mvd to fix a compression. Dr said tooth work could definitely have caused my tn to rear it's ugly head. he thinks it should calm down and go away. I asked him if he thought I could have a compression problem again and he didn't really answer directly. scares me to death.
they could add a lead for the v2, but not u till later. The stim was scheduled for my on and they said they want to give my trigeminal nerve at least several more mo this to calm itself down.
nyway, that is a short version of my problems. I keep my stim trial until the 14th and if it continues to be successful I get the final implant on the 15th now. was scheduled for the 16th. could change again, but I hope not.
post and let us know how you are.
easygoing

[Doodle bug7]

I was under the care of a neurosurgeon in K.C. who did an MVD on me that totally failed. Next was Mayo clinic and the
neuro team there went back in and did a partial cut of the T.N. nerve.. They really stressed that they wish I had come to them first so they didn't have to try and clean up the K.C.
neuro's mess..
The Neuro in Joplin is trying to help me deal with a new pain problem that has literally brought me to my knees. Anesthesia Dolorosia earns it's own respect from me. Anyway
it all seems like reading a book and it just never gets to the end. On...and On...and On..
Thank you for your support (now it sounds like I'm running for office) Bless, Doodle bug7

[Rae of Hope]

Originally Posted by bluemom

If I had an MRI without contrast months before my TN started (for another condition,) and it came out good, how important is it for me to get an MRI WITH contrast now? I don't want to spend more money if I don't have to.

bluemom

I am new to the forum but I wanted to share with you what my neurosurgeon just shared with me about this subject. He did a thin cut MRI with contratst for 200 of his patients to see if this gave a definitive answer as to whether or not to do a MVD. After doing MVDs on all of these patients and analyzing the outcome, he found that the MRI was not a good predicting tool to tell if a person had a compression or not. He would look at the MRI and find no compression and open the person up and they had a compression. Therefore after this study and analysis he found that the thin cut MRI did not give a good definitive answer.

Although from my perspective it would be great if you could actually see the compression before surgery. It would be reassuring.

I brought to him a MRI that was thin cut with contrast but it wasn't thin enough. It was 8 months old. He could not see a compression and he did not have me do another MRI bc of his findings above. Another Neursurgeon in Austin (St. Davids) told me he found the same thing in his practice - that an MRI that didn't show a compression didn't mean that there wasn't a compression.

The neurosurgeon that I am talking about is Dr. Jonathan White at UT Southwestern in Dallas. He is involved in the TNA and speaks with Dr. Janetta. He does about 30-40 of these surgeries a year since 1990 I believe.

[bluemom]

Thanks, Rae. What valuable information! Thanks for sharing! In the end, I did not get that MRI for financial reasons--and I'm glad that I didn't.

Welcome to the forum!



Bluemom