Million Dollar Question Please help me with your input

[mindyandy]

Hello. As most of you here know I had CK done 4years ago. My last MRI showed 2mm increase since I had treatment. I had trigeminal neuralgia for 3 months which is now gone (knock knock).I have jumped the gun and scheduled surgery March 7th even tho Dr. Medberry said he would not declare my treatment a failure yet. Wait to see what my next MRI says. I'm feeling better and have great hearing.

Here is my question to all of you. Should I wait 3 more months for my 6 month MRI or should I have surgery March 7th?

Thank you all for all your help and support
Mindy

[Jim Scott]

Hi, Mindy ~

Of course the decision to undergo AN surgery following a (supposedly) failed CK treatment is strictly yours to make.

However, because the highly respected Dr. Medberry refuses to declare your CK a failure at this point in time and because we know that MRI scans can differ by 2 mm and you don't appear to have AN symptoms, I would concur with your doctor that waiting 3 months and having another MRI scan (on the same apparatus) is a very reasonable approach.  I would hold off on the surgery until then.

Jim

[Archer]

X2 on Jim's response.  Questions on the failure of the radiation, no AN symptoms, MRI in 3 months or surgery in 2.  I think I'd wait.  If it show more growth o the MRI you can always reschedule the surgery. 

What is your surgeon's opinion on the question?

[rupert]

My doctor believes too many people jump the gun on regrowth.  He would need to see growth over several MRI's, and over a period of time.  I'd wait on this one. JMO.

[james e]

Just because I am curious, what does your doc say about the surgery? The surgery is a serious  event. You have no new symptoms. The radio treatment is not a failure...yet. Why would he even offer to do the surgery? What benefit would the surgery provide at this point? What ever happens, I just hope you stay healthy.

James

[PaulW]

My Personal Opinion would be to wait.
AN's grow very slowly, and if there is regrowth it normally starts to grow in just one part of the AN and not the whole tumour.
Waiting another 6-12-24 months to prove whether CK has failed or not seems like the lowest risk option to me.
Another 2mm growth is not likely to make a lot of difference to the difficulty and risk of surgery.
So you might as well wait until it is proven that CK has failed.
Everything may turn out just fine by doing nothing.
Not all surgeries turn out well. Why take the risk when you may not need to?

 
 

[JAndrews]

I have the opposite opinion of everyone above. You have asked for opinions so here it is....by your picture you look young. The odds of a successful outcome from surgery is always better the younger you are. The odds of the AN stopping its growth and you never having to worry about it for the rest of your life are slim. Watch and wait for what? to keep having MRI's over and over again??? To live with the stress of wondering what the tumor is doing inside of your head? I would get it out. You will be able to move on with your life and put this whole tumor thing behind you, eventually. You have chosen the best surgeons. The only question I have is that you mentioned you were having the retrosigmoid approach. I am curious as to why you can't have the middle fossa approach? The risk of headaches is higher with retrosigmoid. This is a fact. A proven fact. I researched prior to my surgery for 3 months. Anyways, I am sure many will disagree with me...but I have to say it again..watch and wait for what? You look very young..get it out:) Whatever decision you make..good luck to you and take care:)
Julie 

[Jim Scott]

Julie ~

Mindy is 29 and is trying to decide whether or not to go ahead with scheduled AN surgery based on the fact that her last MRI scan showing tumor 'growth' is within the usual margin of error.  I assume her doctor chose the retrosigmoid approach based on the size and location of the tumor.  Although the risk of developing headaches with the 'retro' approach is a valid concern, I had no headaches at all following 'retro' surgery - and I'm not an anomaly.  However, as with all AN surgery approaches, some risks are simply inherent. 

Mindy's doctor has advised her to wait for her next MRI to determine if the radiated tumor has begun growing or not.  He is skeptical about the possibility of new growth and she wants to follow his advice, if possible but doesn't want to make matters worse by waiting - although she has no symptoms.  It's a tough call for Mindy but based on what the very experienced Dr. Medbury has advised, the general consensus here, as you noted, is to wait for her next MRI, due in 3 months.  That you happen to disagree is certainly not a problem.  Mindy is seeking the broadest range of opinions she can find from AN patients.  I'm sure your input is welcomed.   

Compared to the vagaries of AN surgery, I see little risk for Mindy by waiting 12 weeks or less and finding out with more certainty whether or not the already-radiated AN is growing.  Of course, should she begin experiencing AN-like symptoms, that would change everything.  So far, she hasn't.  I trust that the opinions we've all offered Mindy will prove helpful to her.     

Jim

[mindyandy]

29? Oh Jim your too kind  I am now 34. Was 29 when I joined the board. I do appreciate everybodys feed back. After all that is why we are all here. Looking for answers and if not answers we are looking to hear advice from people who are in the same situation as yourself or had been there done that. I am in a pickle of a situation that I don't like being in. That is why I am here asking soo many questions and am open to all opinions whether I like it or not.
I do have to say that I feel as if EACH and every one of you are like part of my family "my AN family"

Thank you
Mindy

[mk]

Hi Mindy,

you have received quite a few useful responses, and of course the choice will be yours to make. I would ask myself a few questions:
Knowing that this surgery is not easy (to say the least ...) -  If you have surgery and end up with some difficulties, will you keep second guessing yourself and wondering what would have happened if you had waited for the next MRI?
On the other hand do you feel that you cannot continue with this waiting game, i.e. what if the next MRI is again "inconclusive"? Can you continue with this uncertainty?

When I  got the result of "possible growth", which was the latest in a series of inconclusive MRIs, I decided that I would start the process of consultation for surgery, have everything in place, and if the next MRI was again inconclusive or showed even a hint of growth I would go ahead with surgery. Which was what eventually happened and I had my surgery three weeks after the MRI.
I guess what I am trying to say it that since you are not experiencing any symptoms now, it wouldn't hurt to wait for the next MRI, but I would recommend to have a solid plan in place (which you already do), based on what you feel more comfortable with.

Tough decision ...

Marianna

[wendysig]

Hi Mindy,

I haven't been on this forum for quite a while and yours is the first question I've seen that I felt I could help with.  Since your MRI showed minimal growth, your surgery is scheduled in March and surgery in April, I would agree that in your position, I would wait and have the next MRI, preferably on the same machine and reschedule surgery if I felt it necessary.  I would not continue watching and waiting at that point .  As other have pointed out, you are young and if there is regrowth, it is small.  Better to treat it sooner than later if it is really there and not just an anomaly.

Wendy

[wendysig]

Sorry, I meant your surgery is scheduled in March and MRI scheduled in April.  Guess I should have proof-read this more carefully.

[Jim Scott]

Mindy ~

If I had to make a mistake about a lady's age, I'm glad it was to state your age as younger, not older, than your actual age. 

Jim

[Silver Sonnet]

Hi, Mindy.  I'd say definitely wait.  As Jim points out, 12 weeks won't make any really difference either in your age (and therefore "ease" of surgical experience) or in the size of your tumor.  I understand that tumors sometimes "swell" after treatment and before they begin to shrink, in which case, your tumor "growth" could be a good thing.  And my surgeon tells me that you have to see a continued increase in tumor size to say there's actually any growth because even a very small difference in the position of your head during an MRI can affect the position of the tumor, making it appear larger or smaller.

I've had ret sig surgery, and while my eventual outcome is excellent (and I'm a lot older than you are--54), I can assure you it is not something to undertake if you don't have to.  My episode with facial weakness, if nothing else, convinced me of that.  I'm lucky that my problem was overcome very quickly, but for some people, facial weakness or even paralysis is permanent.  And there's the likelihood that you'll lose the hearing in that ear.  Being SSD is not the worst thing in the world, but it is annoying and inconvenient, and it can affect your lifestyle significantly.

I can understand the impulse to get that tumor out at all costs, but since you chose and underwent CK, give it time to do its job before you try something else.  And, while I'm the first to question (and often to disagree with) a doctor, you have a good guy taking care of you, so unless you have good reason not to, at least listen to his opinion on this.

[Chances3]

Hi Mindy,

I'm a little late posting, I've been very busy with work and haven't been in the forum in a while.  Before I weigh in, let me say that people gave you some very honest and heartfelt answers, along with their opinions.  I love this forum for that reason, because we are AN suffers and we have much to share.  Briefly about me, my AN was found because I began to suffer from severe and debilitating vertigo attacks.  Massive spins that lasted 2-3 minutes with a frequency of 5 to 8 days.  I surprised my surgeons because when I met them, I didn't give CK or WW a thought.  Take the damn thing out.  I had a middle fossa approach and I am tumor clear now for almost 1 1/2 years.  Do I have some residual complication from surgery ? Yes I do, and I have come to the conclusion I might never be myself again.  But there is never a day I don't regret having the " damn thing taken out ".

I'm going to weigh in now with my opinion.  If you are considering surgery, give yourself plenty of time to think it through.  Your age is definitely in your favor, you're young and will have the recuperative powers to heal.  I'm 55, and it was a real challenge.  If you decide on surgery, make sure you select the right team with the best track record.  This is a very delicate operation with very important nerves, it will be very important that the least amount of collateral damage is done to your nerves when the AN is removed.  Make plans on your post op.  You seem to be a mom, who's going to run the house while you are in the early stages of recovery.  Finally stay positive, I went into the why me stage, it doesn't work, move on with your life and focus on the good.  I hope my two cents helps.

God Bless.