Relapse - Regrowth of AN after 10 years!

[shanne]

Dear All,

I have gone through a retro-mastoid surgery in year 2005 & managed to get 98% of my AN removed.
I've done yearly MRI since the excision until they have detected a regrowth this year in September.
I have since started getting very deep, sore & pricking pain in my head & I get bad headaches as well too.
My left face feels extremely uncomfortable with tight pulling nerves. I also get blurred speech sometimes.
My neurosurgeon suggest I go for another MRI in 6months time to check how fast the regrowth is.
Im just wondering if anyone is encountering the same as me in this forum.
It would be great to share information as well as provide mutual support.

[Patti]

What  is the size of the regrowth?

[shanne]

Hi Patti,

There was a mass detected over the yearly MRIs I did for the past 10 years. The dimension of that mass was 1cm x 6mm x 8mm. My neurosurgeon says that could be due to the scar tissues of my brain surgery. This mass remained the same size for the past years too. However, in my latest MRI done in September this year, that same mass has now become 1.2cm x 7mm x 9mm. It shows a significant change in the dimensions & hence the radiologist have diagnosed this to be a relapse.

[Patti]

I am glad they are on top of it.  You will get a better handle on things in another 6 months-although the idea of it will be on your mind a lot.  It has been on mine.  I had retrosigmoid 15 years ago for a 4 cm mass.  I thought i was in the clear, but i had an MRI in August which shows it is back.  The previous MRI was done 4 years ago and didn't show any mass.  So I had stereotactic radiosurgery done for my new mass (3.1 cm x .86 cm) on November 6.  I have no problems to speak of.  The one piece of good news the doctor gave me might help you.  I asked about future side effects because I had read about swelling 6 months after SRS.  He said that he has found that people who have had previous brain surgery don't have as much of an issue with brain swelling because their brains actually have more space in them from the tissue removal the first time. I hope he's right! I would spend this time researching things so you know what the doctor is talking about in 6 months.  I couldn't believe mine came back!

[shanne]

Hi Patti,

Im sorry to hear that you too, suffered a relapse after an amazing 15 years! This simply shows that AN does come back even after so many years, hence, the frequent MRI reviews would be very helpful. I admired your courage in fighting with this tumor! My surgeon did mentioned about stereotactic surgery as he said I would have to go for it if the tumor grows very fast. My previous MRI was done in September 2015, im going for the next MRI in February 2016. I had been having bad headaches & that kind of pain can be quite "paralyzing". What I meant by "paralyzing" was whenever I have that pain in my head, I have to stop doing whatever im doing. The pain would go off several seconds. And I also get very tight tension in my numbed face on my left ( where I had the retromastoid done in 2005 ). It feels so tight that I thought it might snap anytime. I feel terrible & very frustrated over this. Normal painkillers doesn't help & I had to take Amitriptyline which my surgeon prescribed. This medication helps relieve the pain as well as the discomfort in my tight facial nerves. However, it makes me sleep a lot & extremely drowsy. Im unable to go to work when im on the medication as Im unable to focus as well as feel extremely tired.

How have you been feeling after your stereotactic surgery?
I hope you are healing well.

[v357139]

I have not had regrowth, but its only two years.  Just wanted to say sorry for your situation.  But you got through the last one, and you'll get through this too.

[LakeErie]

My surgeon had extensive experience with skull base tumors and told me he did not even read radiologists' reports because they do not view schwannomas and meningiomas every day as he does = my surgeon had done more than 1000 surgeries and that was 4 years ago. He said radiology reports often mis-measured tumors. My point is that you need an expert opinion on regrowth.
Also, Keck School of Medicine at USC and House together published a recent paper on regrowth of subtotal removals, it is online, and stated that regrowth can stop an start so treatment is not necessary immediately. Also, the report stated that regrowth itself did not necessarily  require more treatment in every case - sort of a watch and wait approach to residual tumors. Some cases in the study did require re-treatment at some point. There is another older study of residual tumors online from Harvard Med School with similar findings.
My residual tumor showed "progression" on an MRI Sept 2015 according to the radiology report, no increase in size, but greater enhancing in parts. I will have another MRI in a year and depending on the result will have the scan reviewed by an expert or two. My surgeon moved to CA so he is not my neurosurgeon any longer and I cannot rely on him for an opinion. Good luck to you

[ANGuy]

My surgeon had extensive experience with skull base tumors and told me he did not even read radiologists' reports because they do not view schwannomas and meningiomas every day as he does = my surgeon had done more than 1000 surgeries and that was 4 years ago. He said radiology reports often mis-measured tumors. My point is that you need an expert opinion on regrowth.
Also, Keck School of Medicine at USC and House together published a recent paper on regrowth of subtotal removals, it is online, and stated that regrowth can stop an start so treatment is not necessary immediately. Also, the report stated that regrowth itself did not necessarily  require more treatment in every case - sort of a watch and wait approach to residual tumors. Some cases in the study did require re-treatment at some point. There is another older study of residual tumors online from Harvard Med School with similar findings.
My residual tumor showed "progression" on an MRI Sept 2015 according to the radiology report, no increase in size, but greater enhancing in parts. I will have another MRI in a year and depending on the result will have the scan reviewed by an expert or two. My surgeon moved to CA so he is not my neurosurgeon any longer and I cannot rely on him for an opinion. Good luck to you

A well written and informative post.

[Patti]

Sorry so long for a response.  I dropped something on my laptop and it has been out of commission from the internet!  $450 repair (thanks Apple!) and I am back.  No side effects yet since my radiation treatment on November 6th.  I also have to get a follow-up MRI in February, so we can compare notes.  I hope you are feeling better!

[Sheryl]

We have a friend who is a neuroradiologist.  He says most reports are over-read and usually have cover your a-- wording such as, "possibly", "could be", "may be", "should be watched", should follow-up", etc.

Sheryl

[Doc]

..I dropped something on my laptop and it has been out of commission from the internet!  $450 repair (thanks Apple!) and I am back. 

Patti - I thank you as do the many thousands of Apple shareholders worldwide. We welcome your occasional contributions to our very profitable retirement fund

Take Care

Doc 

[Patti]

that's funny Doc! it has been bad for apple lately! i am surprised.  everyone seems to have an i phone or apple computer!