4mos post op MRI not very good

[Rivergirl]

Has anyone had an MRI report 4 months post op that has these: 1. focus of plaque-like enhancement with the right CPA, mass lesion also extends into the the right IAC 7x17x10? residual tumor? 2. finding consisitentt with mucocele of the right Petrus apex, and 3. mild encephalomalacia?   The surgeon did not explain all this in my 4 month post op but said we will get another one at a year.  I obtained a copy and read it and it does not sound too great.......certainly not clear!   And encephalomalcia is softening of the brain due to trauma or blood losss and is irreversable and may progress...  I wish I never had to deal with all this crap, thought I would rest easy after surgery that is not the case, headaches are worse if I sneeze or cough I have a very bad headache for hours.......I am still watching and waiting and hoping my brain recovers.  I am very down about this.

[mk]

Sometimes radiology reports sound very scary. The radiologists don't know your individual history particularly well, and tend to make a big deal out of normal post-op findings. My 3 month post-op radiologist report also made a big deal of some enhancement, causing compression etc. However the written report that I got from my neurosurgeon stated that these enhancements are normal post-operatively and that he was actually "very pleased" with the excellent appearance. Like your surgeon, he recommended follow up in one year (as opposed to 6 months follow up recommended by the radiologist). Even though the radiology report had me worried, I decided to trust what my neurosurgeon said, since he knows best.
All I am trying to say is that sometimes the radiologists try to be overly cautions (rightfully so), but they are not always aware of the particular situation. It seems that your neurosurgeon is not concerned either, otherwise he would have recommended follow up sooner. You might want to send him the radiologist report, and ask him to clarify more on these findings.

Marianna

[New girl]

Hi Rivergirl,

I haven't reached the 4 month MRI point yet but I sympathize with your worries.  I would also be very upset reading the report and then finding out what the specifics meant.  McKenna's office seems to be helpful especially when people have concerns (I called there a lot before I switched to Lee).  Maybe a phone call with McKenna would help clear things up.  I know my mind tends to run wild unless I have things clarified.  Hope you feel better soon.

[Jim Scott]

Rivergirl ~

I can understand why you're upset by the radiologist's report.  This is why I never read them.  I let my neurosurgeon tell me what they said.  He knows what the jargon really means and whether or not there is a problem.  I'm sure your doctor will clearly explain the report to you and, I hope, put your mind at ease.   If there is a problem, at least you'll have a medical opinion on it and not scare yourself wondering "what does that really mean?"  I trust that your doctor will clear everything up for you...the sooner, the better.

Jim

[New girl]

In case anyone is interested this is what my 2.5 month post op brain MRI (with and without contrast) report stated:

"There is T1 bright material inferior to the IAC measuring 6 x 14 x 6mm; question fat packing.  There is no IAC or CP angel cistern enhancement to suggest residual tumor.  Mild dural enhancement at the surgical site is identified.  There is mild increased signal within the right mastoid air cells; likely related to surgery.  Impression: No evidence of residual tumor."   I havent gotten a call from my neurosurgeon so I assume all is well.

It is interesting that you can see the fat packing in the MRI scan.  Previously I did not give this a thought.  Does anyone know what happens to this fat over time?  I was very excited in looking through the MRI pictures to see that the tumor is no longer visible!

[godftamm]

I didn't know you could read them. So how many check ups do you have to have?

[New girl]

Hi Godftamm,

It you open your MRI disc on a PC you can view all the scans.  You dont need any special software.  For the most part I have no idea what I am looking but it is really cool! It is nice to have a confirmation that there is a brain in there.  I feel like I should put some picures on my resume.    When I was diagnosed all my doctors reviewed the scans with me and showed me the tumor.  I can see that the mass is gone but if something small were to grow I dont have the expertise to diagnose that.

I am scheduled for a MRI every year for 3 years and then every 5 years after - unless of course I have symptoms.  Then I need to go back sooner.  Hopefully that is not the case.

[godftamm]

My doctors have never showed me anything. I would really like to see what it looked like and whats going on now. I will ask but my doctor is really in for 5 minutes and out again I don't think I have been around him for a total of 1 hour. The reason I didn't fight over this is because he had a really good rep. Now I wish I had asked more instead of having to go online to find out what was going to happem.

[chloes mema]

I've just had my initial MRI and should not have read the write up that came with the CD.

"On the FLAIR portion of the study there are some mild periventricular white matter hyperintensities with one particular focus in the right frontal periventricular white matter... There is some minimal volume loss seen." 

So, of course, I went on the internet and researched; shouldn't do that leave it to the doctors to discuss.  Anyway, when I freaked out my Internist said nothing to worry about you have no related symptoms so I'm not worry anymore about that at least.

Bottom line, sometimes technology isn't helpful and informative.   

It is interesting to learn that I can put the CD in my computer and look at the results.

Karen

[PaulW]

I found this study done on encephalomalacia and Acoustic Neuroma removal
17 out of the 30 Patients in the study had it.

http://www.sciencedirect.com/science/article/pii/S0194599899701439

Probably why they did not make a big thing of it.

Mucocele... Lots of us have those in our sinuses.. me included, I think its about 15% of the population.
Normally harmless, but rarely symptoms can mean problems that need a sinus operation for removal.
When I first saw my mucocele light up on my MRI my first thoughts was one of horror, a 2cm blob living in my sinuses.

Hope that helps.... Please note I am not a doctor and supply the information in good faith, always check with your medical team 



 

[LisaP]

Cindy,

Any more updates since your last post??  You continue to be in my thoughts and prayers.


LisaP

[Mei Mei]

You have to demand to be informed and not let them be patronizing about all of this.   If you leave there with questions, Fax the questions to his office and tell him you would like a letter or email response within the week.    Give a deadline.   Your questions are important to you and as tiring as it is you have to advocate for yourself because no one will.   I keep my fax machine very busy with questions like these.    Why not make a visit to the radiologist on your next trip in.   My MRIs were so complicated that the radiologist wanted to see me after the session and wanted to talk with me himself.   It is rare that a radiologist ever does and rare that you ever meet them.   They are all just on the other side of the window.   Now that I have found a radiologist that identifies me as a person and not another scan to write a report about, I will always go back to this place.

Does your doctor have a nurse practitioner or assistant that can talk with you over the phone with your questions.    They are just as knowledgeable and more approachable depending on the place.

Remember don't let your questions sit there....fax them in!
Hugs,
Mei Mei