ANA Discussion Forum
General Category => AN Issues => Topic started by: tenai98 on November 18, 2009, 03:37:41 pm
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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
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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
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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
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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
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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.
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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.
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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
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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
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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.
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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
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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
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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
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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
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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.
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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
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Yikes. No rest for the weary, I guess. I bet it turns out not to be a big deal, Jo, but if it is, it can be fixed. Just one more step to go through.
I know just the thing to cheer you up - I will send you a hat. :)
Steve
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Jo,
I am so very sorry to hear you have had a regrowth and a rapid one at that from the looks of it. Please keep us posted and know that you are in our prayers.
Wendy
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*runs in.... gives Jo MASSIVE Bear-Hugglez for wellness..........* :-* :-* :-*
Phyl
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I'm so sorry too, Jo, and am hoping and praying that it really isn't regrowth.
I hope your grandbaby is much better very soon too.
Keri
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Oh Jo, I am so sorry to hear this news :( Please keep us posted and let's hope it is a misread...or some other mistake ??? I am sending you a big hug and many, many prayers from WI!
Bren~
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Yikes, I also had to read the thread 2-3 times. This is NOT fair! Let's pray it was some typo or something, otherwise, go with what you feel is best.
Lots of good advice. Keep us posted, and hang in there.
Hope your darling grandson is doing better too.
Maureen
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My heart sank Jo. It is our worst nightmare-big cyber hugs for you!
Keep us posted - waiting for the 30th will be hard but we are here for you.
Maybe there is hope it is a mistake and it really is scar tissue?
Michelle :-*
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Hi Donnalynn
thanks for inquiring...I am fine...if it is regrowth and not scar tissue(fingers crossed) I will be looking into radiation. Have been reading up on some old post about GK, CK and so on....still very confusing but given me some info for do next monday...
I'm not worried about it as 1) its benign 2) its treatable 3) i'm alive.
I know CK is more for preserving hearing. Mine is gone...as well as my balance nerve on that side....
Linac is used in Ottawa but its confusing reading about how linac is the name of machine??? That GK is a form of linac...like I said at this point its all confusing...I will seek out some answers from members here after I consult with the neurosurgeon on Nov. 30th.
I refuse to let this monster get me down...I have my two trips coming up...month of jan in Mexico and then month of march in florida....and that is what I will focus on...
Jo
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What a bummer! That is not what we want to hear, and I am with the rest in hoping that this just a mistake of some kind. You sound like you are doing okay in with all of this so far. I have my first MRI coming up in a couple of weeks, and I know that I could very well be facing the same kind of news. I am going to emulate your attitude toward all of this!
Priscilla
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JO,
I admire your spirit so much - it is the news that no one wants to hear and I share everyone' s hope that it is not what it seems. I am looking forward to hearing what you find out - your doctor can tell you best and you're seeing him very soon. Til then, I know you will do what you need for you - research, positive energy, and love to/from your family & friends. Sending you the best of wishes and good vibes from Ohio.
Kathy
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Jo,
I've been reading and not commenting, but I am very much thinking of you!
Anne Marie :-* :-*
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Yikes! I am keeping fingers and toes crossed that there is some error or confusion in the MRI report. Sending hugs your way!
Debbi
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Jo, I'm praying that your November 30 appointment goes well and that you don't need surgery or radiation. Hope your grandson is feeling much better!
More good wishes from Ohio!
Cyndi
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Jo
I just wanted to say that I so admire you spirit and attitude. I hope that if I am ever faced with the same situation that I will have the same spunk and determination. Please keep us posted on what happens from here and I am sending prayers your way.
Erin
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Jo, I am so sorry to hear about the regrowth! I'll be looking for your update post after your appt next week. My surgery was only a week before yours and they left a strand also for the same reason. Did you say 1.6mm or cm? Thinking of you and prayers for peace for you. How is your grandbaby?
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HI Jo,
Chiming in late here, so sorry you are having to deal with the shock of this all over again. I was told in July I had regrowth after 5 years. My AN was supposedly removed totally via Mid fossa, yet it decided to rear it's ugly head again anyway. I have been on an emotional rollercoaster ever since. I have had surgery scheduled 3x and changed it. Just can't bring myself to going through with it yet. I researched the CK,GK, and Novalis Would love to go that route and avoid surgery, but I have major balance issues and the surgeons feel the removal of the hearing nerve and a little piece of the balance nerve left on the hearing nerve will likely improve my balance. It's still small (5mm) so guess that's why I feel I can keep procrastinating.
My heart goes out to you, as I feel your struggle......... I have a trip planed for April, trying to decide if I should wait that long or not. if I do it before, I may not get to go if recovery takes as long as it did the first time.
Hang in there
Patti UT
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Anissa
MRI report states residual of 16mm or 1.6cm
JO
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Jo,
Have read this thread and am SO SORRY this is happening to you!
But, as others have said, your spirit and determination will see you through, along with ALL the prayers coming from the Forum.
Since i am not personally familiar AN surgery (other than what i read on the Forum), do the surgeons measure the piece they 'leave in' to preserve facial nerve, hearing, etc? I am thinking they can only 'guess' at the amount left there, based on the way it is attached to the nerve.
I am thinking of you, and KNOW you will get through this.
How is grandbaby doing? We have had other recent health issues/situations in my family that supersedes the AN too.
My prayers go out to you - Nov. 30th needs to come now!
Sincerely,
Sue
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Jo -
best of luck on the 30th.
I'll be thinking about you and praying for good results.
Jan
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Oddly enough, I met a woman from Georgia on November 17th st Shands Hosptial who after surgery - her tumor came back. She optioned to have surgery the second time. And she did wonderful. I had to get the whole story and it goes something like. She had the orginal AN removed 6 years ago. She did wonderful and really had no problems what so ever. After her first year anviersity of her MRI. They told her to come back in 2 years for another MRI and she did. It was clear too. The doctor then told to come back in 3 years and that is when they discover again AN on the same left side but not in the same location. And it was larger than the first AN was. I have to say, I was a little freaked. But after chatting with her for about an hour, I couldn't believe how well the women in her late 60's was! And I was thinking how she had gone threw what I did - twice. Lucky, by the time I saw Dr. Lewis, I asked him if I could get yearly MRI's, he told me that is what they do these days and after 6 years of cleared MRI's I would be considered cured.
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I read your post and truly feel for you. Right now I am torn about calling my neurosurgeon to have a checkup, as I suspect my acoustic neuroma may be growing back. My surgery was in 1991. Except for deafness in my left ear, and very loud tinnitus, the surgery was very successful . . . until now. For the past 6 months I have noticed balance problems, increased tinnitus, headaches, slight slurring of words, and very mild numbness on the left side of my tongue. Reading your post, however, was enlightening since I had no idea that there were so many more options available now for the removal of neuromas. It is inevitable that I must go and get this checked, as I cannot continue to "play ostrich." I wish you luck in your quest to find the right treatment, and sincerely hope everything goes well for you.
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I can't even imagine.
I'm wishing you the best of luck and every other good vibe I can find is pointed to you.
Mike
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Jo,
Fingers crossed here. Hoping it's a massive typo!!!!!
Nancy
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Best of luck tomorrow. Wayne
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Good luck tomorrow Jo! Thinking of you, and hoping you get all the answers you need for clarity.
Adrienne
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We'll all be very anxious to know what your doc says tomorrow, Jo...hope like Nancy said, that it's some sort of bizarre mistake...
Cindy
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well today is the big day....didnt sleep well last night. so in roughly four hours I will have my answers...Here's hoping for the best!!!
JO
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Fingers and toes crossed.
You were my pioneer, heading into the unknown the day before I did, so hate to see you hit a rough spot.
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And here are some more best wishes, crossed fingers and toes.
Neal
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Hi Jo,
I hope you get good news too. Thanks for letting us know.
Keri
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Thinking about you so much, JO!! ..... hoping for the best!
Clarice
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ok, put the news on another tread...
Doc doesnt know if regrowth took place as he had nothing to compare after surgery...He did explain that he left tumor behind to save the facial nerve and radiation is to follow....if I wanted it now, it would be gammaknife (his recommadation) but he said Ottawa has been granted permission to get a cyberknife machine and now they are waiting on funding and fundraising.....He said fundraising is low key right now so not to take away from the cancer fundraising....Next MRI is in May and then we will plan the radiation treatment....
And to end a great day, I received a Steve original in the mail!!! What more can a gal ask for!!!!
JO
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Jo,
It sounds like this doctor did not communicate the situation to you very well after surgery.
On a positive note, perhaps there is no regrowth.
Wayne
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Ya Wayne, I agree.....When I mentioned why the difference in size from one MRI pre surgery to another MRI post surgery....he blamed it on the way the radiologist read it...then when I asked him about the surgery transcript stating the he left two small strands of tumor behind and that the tumor was medum in size (1.8-2.0cm), he totally changed the subject going on to say how him and I talked about saving the facial nerve and doing radiation at a later date. What I didnt KNOW was the size of tumor left in me....my way of thinking now is why did i bother going for surgery??? but then again, one doesnt know how sticky the tumor can be til the docs are in there....so now I STILL have a brain tumor and will have to go for another form of treatment....But again, its benign, i'm alive, I'm deaf, and I stagger...and life goes on...I'd rather be where I am now instead of like my sister in law waiting for a double lung transplant....and I know there are people worse off then I am....my condition is nothing compared to some.
JO ;D
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wow--what a rollercoaster ride this must be for you....sending you good thoughts!!!!
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..But again, its benign, i'm alive, I'm deaf, and I stagger...and life goes on...I'd rather be where I am now instead of like my sister in law waiting for a double lung transplant....and I know there are people worse off then I am....my condition is nothing compared to some.
That's the spirit! I'm sorry too that you were ill informed after the surgery. Very confusing. So do you remember him telling you that you would need more treatment? Just a casual mis commuication! :o- oops
Ah well, at least you don't have to rush into anything right now. You can rest and enjoy the holidays. But all that stress and worry you went through.... You're a trooper.
I'm SO sorry to hear about your sis in law who is waiting for a double lung transplant. I didn't know there was such a thing...I pray that she makes it through this.
Maureen
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yes Maureen, we did discuss radiation before the surgery took place. It was my understanding that if the tumor regrow we could go that way...Its still somewhat condusing for me as he told my sister afer surgy that he had to leave a small strand behind and when I got the surgical transript reports two small strands. And that it was sized at 1.8 -2.0cm. When I see my ENT on Dec 16th, I will be more prepared with questions....My ENT is a little more informative. The neurosurgeon also said that I can deal with the ENT from now on if I wanted too. And I think I will. I like him better.
JO
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Jo,
What is still not exactly clear to me is how big it was to START and how big is is now.
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well according to the surgey transcript..it states 1.8-2.0cm post op.....and with this MRI its 1.6cm....guess it was bigger then originally stated on Nov'/08 MRI...coming in at 1.4cm....it is confusing....
My conclusion is I still have a brain tumor at 1.6cm and now need radiation in the coming yr...
JO
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That difference may be because of the way the size is measured. Neurosurgeons usually include in their measurements the tiny portion going inside the IAC. Therefore a tumor measured by the radiologist as being 1.4 cm in diameter (taking into account only the spherical portion in the CPA), can be easily 1.8 cm when incuding the IAC portion. This difference in measurement protocol causes huge discrepancies and confusion.
The other thing is that for now there is no established pattern of growth. So maybe this remnant has been debulked (i.e. blood supply being cut off) and will never grow. So you certainly need a follow up MRI in 6 months before deciding on further treatment. And given that your hearing is lost anyway, I don't think that choice of GK vs. CK would make a difference. They are equally effective in terms of control of the growth.
Marianna
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Sorry I'm late to this thread.
JO, please try not to torture yourself about having surgery that resulted in residual tumor and regrowth. There is no way to predict outcome for any type of procedure treating an AN. We place our bets and must live with the consequences. As for your protein shakes possibly causing the regrowth, I doubt it. There is no established link between protein consumption and AN growth. I was on a low-protein diet for 5 months while in W&W, and my tumor grew 5x faster than normal! Since having CK, I've been chowing down a lot of salmon, and my tumor has shrunk much faster than normal! So I doubt there's any correlation between protein intake and growth rate. What I would be careful about is eating sugar. Although I haven't read any studies that correlate sugar consumption and AN growth, some research indicates that tumors in general are thought to grow in a hyperglycemic (high blood sugar) state. And radioactive isotopes used in imaging are often given with sugar in order to locate tumors, because the sugar (with the isotope tagging along for the ride) goes straight to any existing tumor in the body.
As far as the practical differences between CK and GK, as Marianna stated, you wouldn't see any benefit with one over the other as far as hearing preservation goes, because you are already SSD. But I would inquire as to whether your residual AN is encircling your facial nerve or only sticking to one side. If the latter, then there would be no difference between CK and GK. But if your tumor encircles your facial nerve, CK may possibly better preserve your facial nerve function because it would deliver less radiation than GK to the nerve itself. CK delivers only 15% higher radiation dose at the center of the "radiation cloud" than at the periphery, whereas GK delivers fully twice the dosage at the center compared to at the periphery. With both types of treatment, no attempt is made to avoid irradiating any cranial nerves that are in the way.
Hope that helps...
Best wishes,
TW