My one-year MRI

[micca82]

Hi all,

I had retrosigmoid surgery one year ago, and just got my MRI report today. My neurosurgeon told me that he got all the tumor out and today's MRI report says there is 6mm x 4mm residual tumor. I'm really devastated about this. I have facial palsy/numbness from the tumor/surgery, and the fact that doctor removed all of tumor without severing my facial nerve is really good news for me. I was able to endure the mental/emotional suffering from my facial palsy for the past year because I simply believed at least my tumor was gone. forever. Today, I read that the tumor may still be there, and I'm really really really sad about it. I'm meeting with neurosurgeon for one-year follow-up during the first week of May and am very anxious to hear what he'll say about my MRI report. I did get some facial movement back and want to believe that it will continue to heal. I'm so scared that if I need to go through radiation to get rid of my residual tumor, this treatment will kill my nerve for sure and I'm done with healing.

How did you deal with such news at one year post-op? I'm really devastated. T.T

[PaulW]

Radiation very rarely cause problems with the facial nerve, even after surgery.
Speak to your doc's. Hopefully all will work out well

[Suu]

Hi Micca

I know how you're feeling in the face of more surgery or radiation.  Keep going buddy.  Just one step at a time and one operation or procedure at a time.

You will amaze yourself a couple of years down the track that you survived all that in before you and all that you've been through.  We are a resiliant bunch of human beings that have the ability to fight for our health.

Please keep us updated and if you need to vent or a shoulder to lean on then you've come to the right place.

Hugs,
Suu

[pjb]

Oh my your story is almost identical to mine I too was told it was all removed and then to find out that they left 3mm...was devastating news..They said they get it all and I believed them if they would have told me from the beginning I could have accepted it and now. I now find out from a new team I met with one of them he asked me what they did with my bone he also stated that where my AN was located there was no reason why it was not totally removed ! I will be meeting with the second half of this team soon and will see what can be done with the screws and huge gap, I am still grateful that the botched job that was done that they didn't affect the facial nerve and count my blessings everyday for that but having that same surgical approach you had has left me with other post op issues..Just trying to learn to be the new me. My thoughts and prayers are with you and if need you to PM me please do so.

Best Wishes,

[Kelly718]

Micca, I am sorry for the sadness this news has caused you and I hope my story will help. I had surgery 5 years ago and my surgeon purposely left a small piece of tumor to preserve my facial nerve with the likely outcome of it never growing again. I just had my MRI recently and the piece left has not grown. Actually at my 3 year MRI it shrunk! Although your dc gave you false info, it will still be okay. Many of us in this forum have residual pieces left and are doing just fine! Hang in there! xo

[Kelly718]

I just wanted to also add that I was 26 wen diagnosed, so I know the shock of it all. I also had temporary facial palsy after surgery. I'm doing well now with only a dry eye and SSD. I don't know your situation but after it all I went on to have two beautiful children...Timmy is 2 and Alexa is 4 months! They are the loves of my life and I take NOTHING for granted now. Please message me if ever you need to chat. :~)

[Mei Mei]

Dr. Tamargo is NO LONGER MY DOCTOR.   Feel free to PM me.
Sincerely,
Mei Mei

[MaryBKAriz]

Hi Micca

I am sorry to hear about your news! I just wanted to say one of the main reasons I chose cyberknife was preserving the facial nerve. It has been doing fine. If I were you I would also get a second opinion, if possible.

Take care!

Mary 

[Jim Scott]

Micca ~

I'm so sorry to learn of this upsetting development.  The good news is that, as PaulW posted, radiation rarely affects the facial nerve.   

I underwent debulking surgery to address a 4.5 cm AN that was impacting my brain stem and giving me many problems.  The surgery was highly successful (no post-op complications).  During the surgery, the doctor also severed the tumor's blood supply.  As a planned procedure, I underwent radiation (FSR) three months later.  That too, was successful and I didn't suffer nerve damage or other complications.  Subsequent MRI scans revealed the beginnings of tumor necrosis.  My pre-op AN symptoms have never returned.  It's been almost six years (in June) since my AN diagnosis and surgery. 

Although this MRI has revealed some residual tumor, I'm confident that radiation will destroy it's ability to grow and will accomplish this without any damage to the facial nerve.  Please keep us updated.  Thanks.

Jim

[leapyrtwins]

Micca -

I'm sorry to hear this news; hang in there and see what your doctor suggests.  As Jim mentioned, radiation is probably an excellent option.

I have to note though, that docs saying they removed the "entire tumor" isn't a 100% guarantee that they did.   Docs are human, like the rest of us, and can't guarantee you anything 100%.

When they say they removed the "entire tumor" it's because they truly believe they did.  However, AN removal is done through a microscope - the tumor is peeled away layer by layer - and it's a long, tedious process as those us who had surgery know.  Even one cell left behind - that a doctor is unaware of - can cause regrowth.  Even in those cases where docs state they got the "entire tumor", there is still a 1-2% chance of regrowth.

Unfortunately, you may be one of those 1-2%. 

Jan

[pjb]

Micca -

I'm sorry to hear this news; hang in there and see what your doctor suggests.  As Jim mentioned, radiation is probably an excellent option.

I have to note though, that docs saying they removed the "entire tumor" isn't a 100% guarantee that they did.   Docs are human, like the rest of us, and can't guarantee you anything 100%.

When they say they removed the "entire tumor" it's because they truly believe they did.  However, AN removal is done through a microscope - the tumor is peeled away layer by layer - and it's a long, tedious process as those us who had surgery know.  Even one cell left behind - that a doctor is unaware of - can cause regrowth.  Even in those cases where docs state they got the "entire tumor", there is still a 1-2% chance of regrowth.

Unfortunately, you may be one of those 1-2%. 

Jan

Just not sure if I had to give advice or receive it as well... I had a 1 cm tumor and the surgeons swore for a year they removed it but I found out from the MRI a year later that was not the case 3 mm was left behind and that was the size right after surgery. My surgery was only 3 hours and was told it would be longer. I had a second opinion just recently and that doctor made a comment which I was surprised because of the  "Doctors Code of Ethics"... that there was no reason for any to be left behind it was not in a comprising position and could have been removed totally and what did they do with my bone???...Hmmmm good question along with the titanium screws that are up at the surface since surgery that is why I stressed you need a GREAT team of doctors no matter what decision is made and hope my story can help others to research as much as they can and do not settle for just any doctor. Also in my case the insurance caused me to choose improperly and that was my biggest mistake fight for your rights this is a rare complex surgery I was informed and not all insurances cover it and my list of surgeons given to me by my insurance no one did this type of surgery

Best Wishes,

Best Wishes,