Trying to help my mom make the right choice!

[SonDek]

Hi all,

I'm new to this and have posted in a couple of other threads so far -- just trying to put my specific questions in the most appropriate thread, but now I'm trying to sum it all up here.  Also, I'm writing on behalf of my mother because I can type much faster

So my mother is 65 years old - tomorrow! - and she was diagnosed on Sept 3 with a 3cm by 2.8 cm by 2.9 cm (although one doc said one of the measurements was 2.5??  How can they vary so much?).

She has no symptoms that bother her day to day.

She has been having problems with her blood pressure, up and down, up and down.  When it's high, it is very high ... as high as 190.  The doctors didn't comment on this, but I'm wondering whether this will increase her risk for, say, stroke during surgery?? I know that's a question for the doctors, but I'm wondering -- has anyone else had the surgery, while they had high blood pressure? 

She is tempted to watch and wait and see what an MRI 6 months from now shows, but we've been scared by the stats about the increased risk to the facial nerve, the larger the tumour gets.

We are in Toronto -- well, Mississauga, really -- the surgery is already scheduled to take place Oct 14th at Trillium with Dr. Izukawa, and Dr. Chen from Sunnybrook.

We need to make a choice pronto as to whether to bypass this date or not.

I know people end up waiting for months and months if not more for a surgery date, and it feels a little like looking a gift horse in the mouth by turning this date down.

I know Dr. Chen is experienced and well-known but I have no idea about the neurosurgeon, Dr. Izukawa. 

I think that sums it up!

Any advice is appreciated, but yes, I know, it's ultimately up to my mom to make the choice she is comfortable with. So hard!!

Thanks everyone,
Sonya

[TJ]

Sonya

I am not a doctor but to answer your question about high blood pressure.  I can tell you that unless your mom's blood pressure is under control at the time of surgery, they will not do the surgery on her.   When you mention this to the doc I am sure they will give her medication to help stabilize it.  You are correct in saying there is a risk if her blood pressure is high.

Best of luck

TJ

[CHD63]

Hi Sonya .....

I answered on one of your other threads earlier, but wanted to add that making a treatment decision ..... with which, with whom, where, when ...... can be one of the most stressful parts of this journey.  If, in her gut, your mom feels this is the right thing to do now, then I would do it.  If, however, she is very uneasy that it may not be the right decision, I would hold on it and do further research and/or gain additional opinions.

Many thoughts and prayers.

Clarice

[mk]

I agree about the blood pressure. After surgery she will be put on steroids, which have an unpredictable effect on blood pressure. I always had a constant blood pressure, but with the steroids it was up and down. I can't imagine what this would do if the blood pressure is uncontrolled to begin with.

The risks to the facial nerve are already too high with a 3 cm AN. Team experience is the most important for these surgeries. I will send you a PM with some information about doctors in the Toronto area.

Marianna

[Cheryl R]

Sonya, the stress of worrying about surgery might make it continue to be high.    Mine was up more and the drs did not seem too concerned and just made sure to be watching it and gave me IV meds to help it during surgery.        You can ask her dr what he thinks and she does need to be having treatment soon with the size of it.            A surgeon might be able to tell you more if her AN is possibly the cause.      I would not watch and wait as the blood pressure can be monitored closely and helped but nothing will help the AN.       She is not that old as far as having surgery.      Just make sure and tell the dr your concerns.                     Cheryl R 

[SonDek]

Thanks so much everyone ...

The blood pressure seems to be our biggest question right now.  She's been given different dosages/medications over the past few weeks and still her b.p. won't stabilize, so I don't understand how it could be stabilized during the surgery itself. 

We'll hopefully talk to the surgeon about this tomorrow.

[JAndrews]

Blood pressure is stabilized better in the hospital due to IV meds. They will be able to keep her blood pressure down prior to, during and after surgery. I wouldn't worry about it to much. The tumor size is large. If it were me I would not wait any longer. Its definitely large enough to remove now.

[james e]

The docs will do the right thing...don't worry! I had my surgery when I was 60, high blood pressure, but controlled with medication. I had a stoke 11 months before my surgery, but it was caused by an unknown childhood heart defect. I had a heart surgery right after my stroke to fix my heart. Prior to my AN surgery, my heart doc had to provide certification to my ear doc that I was sound enough for surgery. If your mom's doc is concerned, he will get an opinion from another doc to certify that she is fit enough for surgery.

This is a reason for ALL of us to stay in shape. As we get older, parts start to wear out, and we end up in surgery. Being in top physical shape will always help in your recovery, and might even make a difference if you even have the surgery. Eat the right foods and exercise.

I'll vote in favor of the surgery if her docs say it is safe for her.

James

[SonDek]

Hi all, thanks again for all of your replies.
My mom's surgery is set for Oct. 14th and ... she still does not feel clear as to whether this is right. 
Because she has no symptoms, she feels tempted to hold off ... and hope for no growth I guess.
She's worried about the experience of the team ... I don't know how you are supposed to get detailed stats, but I heard that Dr. Izukawa averages 1 per month.  I know other doctors/locations do more than this. Dr. Chen I believe has more experience, but he's not the one doing the tumour removal I don't think.

James, wow, that's a lot to go through ... kudos to you. 

I wish I could find a way to reassure my mom and give her the strength to be positive, but I don't know myself what's right.

So here might be a really dumb question but I've been wanting to ask it for a while ... what happens if you just leave it ... are there any people who have refused surgery for an AN of this size and have gone on to live a regular life-span?  I'm not as stupid as I probably sound right now ... I know there are "risks" ... but how certain can a doctor be about these .... given that AN's are so rare to begin with ....

[mk]

Sonya,

I was in a similar situation as your mom with regards to the size of the tumor upon diagnosis. Also, I had minimal symptoms. Now granted that age can also be a factor in the growth, but mine generally continued to grow at a very small pace. The problem at these sizes though is that even a few mm of growth can cause big problems. At the time of my surgery (3 and a half years from the time of my diagnosis and GK), my AN had grown by about 2 mm and was about 3.2-3.3 cm in diameter. But I was on the verge of developing hydrocephalus, to the point that the radiologist who did the MRI called my doctor's office and told him that I should go to the ER. The AN was also starting to impinge on the 9-10-11th nerve complex, which meant that this might pose elevated risks for swallowing and other problems. Not to mention about the brain stem involvement and the risks it presents.
I don't want to scare you - as you will see I had more than 3 years to research my options. It does seem to me that your mom is not entirely comfortable with that team; I understand this, since we don't have any information on the outcomes that this particular doctor achieves. Going into the surgery with confidence is very important. Unless the doctors have clearly stated that this is an emergency (which I doubt at this size), your mom should have time to research her options and consult with more doctors. But if she ends up cancelling I would start the process of consultations right away - it does take time to setup the appointments and see the doctors. By the time of her next MRI, she would have a more clear picture, and if there is growth she would be ready for surgery.

Marianna

[LisaM]

What was it that led to the diagnosis?  You mentioned your Mom has no symptoms.  Did they find it by accident? 

I'm waiting and watching, the AN in my head is smaller.  However surgery was recommended for me upon diagnosis -- with urgency and I was convinced that I needed to have surgery within the first month of diagnosis.  ANXIETY!  I became obsessed with getting information about ANs, much of it came from this site (so grateful it is here!).

In weighing my options since last April, I spoke with a few folks who had surgery.  One, a woman who had a tumor the size of your Mom's (3 cm) and she waited for 8 months before having surgery.  It's a BIG step deciding to have surgery and who will be doing the surgery.  If your Mom is not ready, don't let a surgery date be the deciding factor in this.  It's so terrifying to be told one has a brain tumor.  Let the emotion calm down before making such a huge decision.  Your Mom needs to feel safe and confident with her treatment choice. 

[james e]

I was having vertigo prior to surgery for about 3 years. The vertigo was controlled with medication, but since my hearing and my balance were already compromised, I was concerned about my facial nerve being attacked. I  decided to have the surgery to save my face. All of us having this surgery or radiation treatment had to go through this decision, and it is a tough one to make. Do not make an emotional decision. Make a list of the good and bad, and make a practical decision.

[SonDek]

Hi all!  My mom had her surgery on Friday.  Loooooong day.  We didn't hear anything until 5pm, at which time Dr. Izukawa came and told us that the surgery had gone well, that the tumour was all out, and that her facial nerve was "saved" but "thinned out."  She spent three full days in the hospital and was discharged this morning, the fourth day after surgery.

I spent a lot of time on here in the last several weeks, mostly reading other's comments, and posting a few frantic questions of my own.  It was comforting just to spend time reading.

Thanks everyone. Maybe I'll get my mom on here so she can talk to you all herself.

Sonya

[Jim Scott]

Sonya ~

Congratullations to your mom for her successful AN surgery!  I hope her recovery is swift and complete.  I'm also pleased to learn that reading the posts on the ANA website forums was helpful to you.  That's our goal and it's rewarding to learn that it's being reached, so thanks for your input. 

Jim

[LisaM]

Keep us posted on her recovery!  Sending healing thoughts your way...