regrowth???? so lost right now

[tenai98]

Well I had my first follow up MRI and it is showing that Booger has grown....He was 14X9mm going into surgery in April and now he is 1.5 X8mm.....That is alot of growth in six months....Will be seeing neurosurgeon on Nov 30th and ENT has ordered another MRI in six months...MY mind is in a limbo right now...Radiation??? more surgery??? Darn, I"m just geting over my  BAHA surgery, which by the way is looking great...ENT said its a rapid heal....
Cyberknife, at this point is not available in Canada...So it will have to be Gammaknife or proton...I'd have to travel five to six hours for the gammaknife...Proton is what is availabe in my neck of the woods...Dont know much about this...so please if anyone has had it, please send me some info...
Stay tuned
JO

[cindyj]

What, Jo?!?!  I had to reread your post several times and I kept checking the date to see if it was an old one that just popped back up.  But, no, it's from today!  Wow, did you know there was any tumor still left after your surgery?  Did you have the fat graft?  ANY chance it's just that?  So sorry you're having to deal with more AN stuff just when you thought you were on your way back to normal life...

You'll keep us posted of course, right!

Cindy

[Jim Scott]

Jo ~

I was surprised and dismayed to learn from your post that your AN has actually grown.  This is not common, but it does happen.  I'm just sorry that it's happened to you.  I would assume that radiation is the next step.  Gamma Knife seems to have a good track record but I'm not that knowledgeable about it so I'll hope that those who are can add to the thread with information you can use.  I know you'll handle this with aplomb - and kill the darn thing once and for all.   

Jim

[tenai98]

here is the official report
Patient is status post partial resection of left AN thru a translab. There is fluid and packing material within the left mastoid air cells. Evidence of residual tumor in the left CP angle cistern and within the IAC measuring appr 16 X8 mm.. there is gliciosis and encephalomalacia in the left middle cerebellar peduncle, not present on the prior exam and likely post surgical in nature...

Believe me I have alot of questions for neurosurgeon when I see him....especially the last part of report...what the heck is gliciosis?  Will be doing some research tonight for sure....
JO

[tenai98]

oh gee...here is what i found for gliosis and encephalomalacia

Encephalomalacia and gliosis usually occur due to brain injury. Encephalomalacia is diffuse softening of the brain tissue and gliosis is loss of the glial cells in the brain.

[opp2]

Dear Jo, please hang in there. My heart goes out to you.


There is cyberknife in Canada, in Montreal. Just since September. OHIP should cover you since it isn't offered anywhere else. 

[CHD63]

Oh JO .....

This is so unfair!  I really do not know what to say ......  Like Cindy asked, were you told they did not get all of the tumor at the time of surgery?  If the tumor has regrown to 1.6 cm in six months, why are they recommending waiting another six months before another MRI?  There are unusual cases of rapidly growing ANs (I had one!).

All I can say is, I would certainly go armed with many questions and expect many answers!

At the ANA Symposium this summer, one of the sessions dealt with regrowth.  The two surgeons presenting both agreed that if the regrowth followed surgery, the preferred subsequent treatment would be radiation or a different surgical approach ..... due to scar tissue from the first.  This could mean middle fossa or retrosigmoid for you if surgery was indicated.  Both were very optimistic about successful treatment of regrowth.

Hang in there until you have all of the facts/answers.

Thoughts and prayers.

Clarice

[tenai98]

yes to those who asked, I was told there was some (a small strand) of tumor left behind to save my facial nerve.....I'm keeping my fingers crossed that I'm reading this all wrong....they did tell me that regrowth was a possibility.  And we (neurosurgeon and I) did discuss radiation in event of regrowth....
All kinds of things  are going thru my mind right now...I have been taking extra protein to help in the healing of my Baha surgery site...Did this supplement add to the growth? Should I have stayed in the W&W mode??? BUT I will not let this overtake me...it is still benign and treatable....and I will perservere....Surgery wasnt all that bad and I may opt for it again if Booger continues to grow...and if he stays stable then I am not doing a thing...but for now, Nov 30th cant come quick enough and my energy will be put forth into my yr old grandson who was just released from the hospital with pneumonia...His illness supercedes mine
Jo

[Lilan]

Dare we hope that you or someone misread this, or that there's some confusion? While regrowth is possible, it's so strangely close to the exact size it was before -- can that be coincidence?

I don't want to suggest false hope, and I know, truth is stranger than fiction, but .... it's certainly made me do a double-take. As you say, if true, you will deal with it -- and presumably the hearing and balance has already been dealt with, so perhaps a round two of treatment wouldn't be as traumatic as the first!

Prayers for you and keep us posted.

[Kaybo]

Oh My Goodness!! 
Let's just hope and pray that this is just all some big mistake...great attitude, though Jo, never let it beat you!!

K

[mk]

Jo,

I am sorry to hear about this unexpected turn of events. It seemed that everything was going so well.
I agree with everyone else that this growth sounds unusual, maybe the radiologist is misreading all this? After all he/she is not necessarily familiar with your particular case. Could it be just scar tissue? I would wait to see what the neurosurgeon says.

If you do end up needing follow up and decide to go with radiation, there is the LINAC option right there in Ottawa, which you may want to investigate. I have never heard about proton being available in Canada.
And the Gamma Knife Centre in Toronto has excellent expertise, with doctors trained elsewhere at more experienced centres. They are not the friendliest bunch, but  I couldn't have been happier with my results. Travelling is not too bad (I just hopped on the train the previous day and stayed overnight). TWH is located downtown Toronto. They are also pretty good about following up by phone, so that you don't need to travel all the way every time.
There is also GK in Quebec, Sherbrooke (Tatianne had hers there). And a new CK centre in Montreal. I really don't see a reason why you would need to travel to the States, since good facilities do exist here.

I hope though that you won't need any of this, and it is just a misreading from the radiologist. Oh, and all the best for your grandson, hopefully he is recovering nicely.

Marianna

[Vivian B.]

Hi Jo,

What confusion and surprise. Hang in there, you will sort it out and if you need to do something about it, just think you have been there done that. You are a pro now. Good luck.

By the way, I am not sure where in Canada you are from but should you require gammaknife and Toronto is an option,  you are welcome at my place. I am not too far from the gammaknife clinic.

Vivian  

[wcrimi]

Jo,

I am so very sorry to hear this.

That rate of regrowth is somewhat stunning to me because it's approximately the same size as the original tumor already. That's unbelievable.

As to some of the other stuff on the report, I wouldn't worry too much. My first post op MRI at 3-4 months scared the crap our of me when I read it because it contained a whole bunch of things. But it turned out to be nothing significant.

So focus on the tumor and possible treatment options and don't worry about that other stuff.

I will be praying for you.  I feel confident this is going to turn out OK.

Wayne Crimi   

[Tricia (horsekayak)]

Am sending you all my best.  This must be so hard .... so much to deal with , isnt it?  Try to take care of yourself, spend some time with your family, and we will all be pulling for you.

[leapyrtwins]

Jo -

I'm hoping there is an error somewhere in your MRI report.  Regrowth is usually only a 1-2% possibility post op and to have regrowth 7 months after surgery is virtually unheard of.

Keeping my fingers crossed that your doc will be able to shed some positive light on this situation.

Please keep us posted.

Prayers,

Jan