Retrosigmoid surgery scheduled August 28th

[LOIS]

I went for the second opinion on Monday.  I felt much more comfortable with this dr., didnt feel like running out of the room like I did with the first.  But he did agree with the first, that surgery should be done.  He said it didnt start in the normal place and is pressing against the brain now.  I asked how long before it would become life threatening and he said 6 months - 2 years, as he cant determine the growth rate.  The good news is that even though it is in a bad spot, he feels he can at this point get it out without ruining my facial nerve or having anymore hearing loss.  During the exam he noticed a major brain infarct and many minor ones on the mri and sent me over to the vascular lab for a carotid doppler scan.  It showed blockage in the right side but the left is clear.  So he feels it wont be a problem since its on the opposite side and said it was more to find out my stroke risk.  Although I feel comfortable with him, I guess I'm beginning to get nervous.  My husband just retired 2 months ago mainly because of this, so I do have the support and help I'll need.  But has anyone just waited till it got to the point of life-threatening?  Right now he wants me to build up my blood with a multivitamin with iron and take a baby asprin everyday for the carotid problem.  I am so not looking forward to this.

[Pooter]

First of all, congrats on making the decision.  That's the hardest part for some.  I was one month from diagnosis to surgery.  I didn't wait until it was life threatening and treated it as if it was life threatening as it was.  It also was pressing against the brain stem.  I'm not a doctor, but I would expect that you would have further symtoms (possible facial problems, more hearing loss, etc..) before it truly became life threatening.  Those are complications that may or may not go away afterwards.  You definitely want to do something about it before then.  The hard part is knowing when is the right time.  For me, it was pretty easy because it was already putting pressure on the brainstem.  I'm encouraged that your doctor feels some hearing preservation is possible.  Even if it's not, then living with SSD (Single-sided deafness) isn't so bad and definitely manageable.  To me, the primary goal of the surgery was to remove all the tumor and to leave the facial nerve without permanent damage.  I'm only a few months out and I'm slowly getting movement back in my face on that side as well as some eye dryness that comes with it and they think all the tumor was gotten at the time of surgery, so overall I think it's a success.  Sure I've had my complications afterwards, but so far it's nothing that I haven't lived through.  I applaude the fact that you've made a decision.  I realize you're not looking forward to it, you said that, but we are here to help in any way that we can both pre and post surgery. 

Brian

[leapyrtwins]

Lois -

comfort with a doctor - and confidence in him/her also - is a good thing.

I don't think most AN patients wait until their tumor is life-threatening - at least not intentionally.  And IMO that wouldn't be a wise idea.

While surgery isn't something to look forward to, it's not as bad as you might imagine.  Initially it's a big shock to the system and it's definitely not a piece of cake, but typically the hardest part of recovery is the first few days post op.  After that patients tend to get better at a steady pace.  I can honestly tell you that each day post op I felt better than the day before.  At first you'll find you have good days and bad days, but eventually the good will outnumber the bad.

Don't forget to put your surgery on the AN Calendar (link can be found at the bottom of sgerrard's profile) so we can all wish you well before your big day.

Jan

[sgerrard]

Hi Lois,

Here I am, with the calendar link below. 

I am glad to hear that you are not looking forward to brain surgery; I would be worried about you if you were. I don't know what all the vascular lab stuff means, but it sounds like it is not expected to interfere with the surgery. There is every reason to be optimistic about the outcome; most of the time these surgeries go well. At this point, you just sit back and see what happens.

Best wishes,

Steve

[Jim Scott]

Lois:

I'm glad you've reached the point of making a treatment decision and scheduling surgery.  As others have noted, this is a major part of the AN 'journey'.  Confidence in your doctor(s) is vital to keeping a positive outlook as the 'journey' progresses from decision to the time you enter the hospital.  You have the family support you'll need (your husband) and you have the support of many folks who post on these forums to count on.  Prayers and good vibes will be sent for you and to you the next four weeks.  I think you'll be O.K.

I procrastinated about seeing a doctor even though my symptoms were obvious.  My wife finally pushed me to go.  Long story short: an MRI showed a 4.5 cm AN pressing hard on my brainstem.  The surgeon I eventually hired was aghast when he looked at the MRI scans.  He quickly scheduled my (Retosigmoid) surgery for about a week later (I was in otherwise good health).  All went well.  FSR (radiation) followed, also with good results and no drama.  Today, almost 26 months later, I'm fine - and I have the MRI to prove it. 

Your nervousness is completely normal and natural.  As Steve mentioned, we would think it weird if you weren't nervous.  We were.  The good news is that you have about a 99.9% chance of surviving this surgery and that it is quite efficacious.  If your doctor is optimistic about hearing preservation and no facial paralysis, all the better.  You are on the right track, Lois.

Please feel free to join us often and ask whatever you need to know that we might, individually or collectively, have an answer for. 

Jim

[LOIS]

Brian, Jan, Steve, and Jim,

Thanks for your support.  Guess I,m getting bouts of cold feet.  Jan, I was just wondering if anyone had waited and how the outcome was.  In my mind I wanted to put it off as long as I could.  My husband was with me as we talked to the dr. and after listening to him, he agreed with the dr. and I felt kind of pushed into it.  I realize its probably the best thing to do and I really did feel comfortable with the dr.  I talked to my friend who had hers done by the same doc and she turned out pretty good. Mine is 1.2 cm x 1.1 cm.  Hers was 3.5cm, she has her hearing and a slight problem with her facial nerve.  The doc said something about being prepared for a bad headache, vomiting,dizzyness and nausea for about 2 days while in the ICU.  Something about my other side has taken over the balance portion and when he removes it thats what will cause all that.  I guess its good to know ahead of time what to expect.  By the way, how do you sneeze through your mouth?  Do you hold your nose closed?  I'm giving my own blood for myself in case I need it.  I told the dr. I refuse to have a blood transfusion as years ago I had to have emergency surgery, had a blood transfusion and got something extra with it......hep c.  He said he didnt think I would need it but he wanted me to do this if I am going to refuse it.  I have a rare blood type to boot.  Jan, Steve, I went to the AN calendar and the surgery was already there.  Jim, you had radiation after surgery?  I know, yours was pretty big so did they remove most of it and then do the radiation?  Again, thanks for all the support.  It was my friend who turned me on to this site.  She said it helped her a lot.  I'm so glad she did.

Lois

[leapyrtwins]

Lois -

I'm glad your friend directed you to this website.

As you've probably already read on this forum, not all AN patients have the same side-effects post op.  So, while your doc says to be prepared for a bad headache, vomiting, dizziness and nausea for about 2 days - you may or may not experience these things.  And if you do experience them, it may be more or less than 2 days.

I was a "victim" of vomiting and nausea for about 5 or 6 days, but didn't experience headaches at all.  I also had double-vision for a couple of days post op.  Others had a totally different experience.  So I would recommend you be aware of possible post op "issues", but don't stress too much about them and just take things as they come.

As far as sneezing goes, you just sneeze with your mouth open.  It's not as hard as it sounds.  I found that it was much harder to remember to sneeze with an open mouth than to actually do it.  IMO not blowing my nose was much harder.

I asked about giving my own blood prior to my surgery and I was told by both my neurotologist and my neurosurgeon that AN surgery isn't a "bloody surgery" and patients rarely, if ever, need blood.  It's good that your doc wants to be prepared though - especially since you have a rare blood type. 

Jan
 

[MAlegant]

Hi Lois,
I am only 10 days post op and I'm doing fine.  I could have lived without the first couple of days but other than that the issues have all been relatively minor.  I had the opposite reaction to yours; I did my research pretty quickly and got a second opinion, picked a doctor and got a surgery date all within 2 weeks or so.  Just knowing that the tumor was there (and it was bigger than yours) was enough to send me round the bend.  I wanted it out as soon as possible.  As Jan said, each day does get better than the one before.  Draw your courage from within yourself and when you run out, just post on this forum.  People will put their arms around you "virtually" and will be there for you before, during and after.
Best wishes,
Marci

[Jim Scott]

Lois:

In response to your question: I was adamant about avoiding facial paralysis and the other unpleasant complications that AN surgery can often produce.  I made this very clear to my neurosurgeon, who has 30 years of experience with AN surgery.   He understood and had the same goals as I did for my surgery.  He worked up a 'plan of attack' that had two stages: First, he debulked the tumor down to 2.8 cm (from 4.5 cm) and cut off it's blood supply, effectively crippling it (as it were) and avoiding disturbing the critical nerves around the tumor. Then, after a 90-day healing period, he worked closely with a radiation oncologist to map out a series of 26 low-dose radiation treatments (FSR - Fractionated Stereotactic Radiosurgery) intended to destroy the tumor's DNA while, again, avoiding critical nerves. 

My last MRI (8/1/08) shows tumor shrinkage and definite necrosis.  My symptoms are long gone and I'm pretty much back to normal.  I experienced no real complications from surgery or radiation.  I'm pleased to share my story but I must add the caveat that every patient is different and no two doctors have the exact same level of expertise.  I hope every AN patient's experience will be similar to mine but, as any doctor will tell you, there are simply no guarantees.  I offer what I experienced as proof that AN surgery doesn't have to be a disaster and often is not.  Radiation is also not fun but hardly unbearable and usually efficacious.  Consider both and consult more than one doctor, keeping an open mind as much as possible, but don't procrastinate.  I wish you all the best as you pursue a solution to this problem.

Jim

[LOIS]

Jim,

Sounds like you had a good dr. that heard you when you told him what you wanted.  This was the second dr. I saw and I do feel comfortable with him.  I also reiterated those same wants when we spoke.  I spoke again to the surgical coordinator and am starting to feel more comfortable with my decision.  The only thing I changed was I'm not going to give blood for myself.  I was told its usually not needed.  I gave blood many years ago and they had such a hard time getting it, I vowed never to do it again.  Since I bruise so easily and have trouble with ivs as it is, I decided why go through that too.  It would have been giving 1 unit a week for 2 weeks and then the surgery 2 weeks later.  So.....Monday, I'm going to cancel the blood giving part.  Instead we are going to look for someplace to get away to for 4 or 5 days and relax before the surgery.  It is what it is so I'm trying to just set my mind with positive thoughts and go with the flow.  I'm glad to hear you have had such a good outcome.  With faith in God and my doctor I hope to have the same.

Lois

[MAlegant]

Hi Lois,
Enjoy your time away and try to be calm.  You've made a decision, , and are comfortable with the docs. You know, I was pretty adamant about the facial nerve as well and as it turns out, for most surgeons that is their number one priority other than getting the tumor out. My doctors knew that 1) I wanted to preserve the facial nerve at all costs and 2) I wanted to retain as much hearing as possible. They also knew I would be happy with debulking the tumor and going back later with GK.  It turned out that they were able to get all of the tumor with harming those nerves but of course the trigeminal nerve wasn't on my list! None of us knew the tumor had set up camp around that nerve.  It may take a while for that to recover and I may not recover it all.  That is fine with me, I'm just happy to be here.

 All of this to say that if you feel confident that they have listened to your wishes then you have made the right choice.  Don't second guess yourself and do know that most people do just fine these days.  You will be able to deal with whatever happens after and will work hard to come back to yourself, just look around at all the people on this forum that have dealt with a wide range of recovery issues.

Be well,
Marci

[leapyrtwins]

Lois -

IMO having faith in God and your doctor(s) is a very good thing - it worked wonders for me both going into surgery and in my post op recovery.

In addition, you have the support of all of us here at the forum.  We're all hoping for a great outcome and we're here to help you with whatever you need.

I think you were wise not to give blood - sounds like it's usually not a good experience for you and it's rarely, if ever, needed.

Hang in there; the surgery will be over before you know it.

Jan

[Syl]

Hi Lois,

My AN was 1.5cm and not a danger to my brainstem. I had retrosig 7 wks ago and would say that I had an excellent outcome. I got off the rx pain meds after 2 days in the hospital. Both my facial and hearing nerves were preserved. I did have a bit of a scare with facial palsy 17 days post-op, but some prednisone took care of that and I can whistle again. My hearing was affected by the surgery, but I have regained some of it -- my word recognition was at 60% pre-surgery. I am so looking forward to getting a hearing aid in a few months.

Some folks have issues with dizziness others don't. I think that's where my biggest issue is. It's taking me longer to drive than most because of the dizziness, and I still use a cane when I know I will be walking a while. Dizziness was a big issue pre-surgery, so it's no surprise that it got so bad post-surgery.

I must not forget to mention the headaches. Though they can be very painful and debilitating, mine are very manageable. When I feel the headache coming on, I pop some Tylenol and apply some heat. Within 10-20 mins. I'm good to go. But I'm hoping that the headaches will go away alltogether as my body heals.

Watching and waiting was an option for me, but the bigger the tumor the greater the risks. I'm glad I didn't wait longer than I did. In fact if I had gotten my way, the surgery would have been sooner. It was a little over year from the onset of my symptoms (sudden hearing loss and lots of dizziness) to the day of my surgery.

One Dr. told me that onset of AN symptoms doesn't indicate tumor growth. Inflammation alone can be the cause of the symptoms. My feeling was that if an AN could cause damage without even having to grow, I wasn't going to wait and thus increase the risks that comes with treatment.

I still have many bad days, but the good days are becoming more and more frequent.
Brain surgery is a scary thing, and the recovery period can be long, but I'm getting through it.

Just remember to assemble your team of caretakers, and you know you have the support group here.

I'll be thinking about you around the end of the month.

Syl

[Debbi]

Hi Lois-

Sounds like you are comfortable with your doctors, which is so important.  As for being comfortable with having brain surgery - who among us is every really, truly ready and comfortabel with that??  I will say, though, that it wasn't nearly as bad as I feared it would be.  Yes, you will feel like poop for a couple of days, but the hospital will give you things to minimize discomfort, nausea, dizziness or whatever else happens to come your way.  I didn't have any of those things post op, by the way; although I did end up with facial palsy (which is slowly getting better.)

Your idea of going away somewhere for a few days is great!  Treat yourself with kindness over the next few weeks and try to be as peaceful in your heart as possible...

Debbi