More thoughts on surgery...

[rvb755]

I know by choosing HEI I am not guaranteeing myself a positive outcome.  I have accepted that I am a high risk case and it is possible that I will suffer long term affects regardless of where the surgery is performed.  That is an unfortunate fact of having a large AN inside your skull.

I also understand that in order to perform surgery on me on 8/24 HEI almost certainly had to bump someone else to a later date.  My heart breaks for that person, because I cannot imagine receiving that phone call and the stress and disappointment it would cause.  I am saying a prayer for that unkown person.

Rick

[Kate B]

Rick,

The whole acoustic neuroma diagnosis is an interesting thing, because all we control are the choices  we make relative to treatment, doctor, facility etc...You have given your self the best chance for a positive outcome. The reality is until they are inside they don't know what they will find. But rest assured this group has worked on hundreds of patients. That gave me comfort. I figured that there probably wasn't anything they hadn't seen!

HEI is set up for multiple surgeries on any given day.  The whole 6th floor was for acoustic or HEI patients. I wouldn't be so certain that they bumped anyone.  You will be amazed.

Kate

[rvb755]

Kate, thanks for the encouragement.  I hope to be able to look back one day and see this as a blip in my life at 40 years old.  Right now it's almost overwhelming - something I think about almost continuously.  I really hope that no had to have their surgery rescheduled.  HEI didn't actually tell me they would be bumping anyone - I just figured it is a possibility.  It would really be awesome if it wasn't the case.  All they told me was the neurosurgeon was going to be the hard part in scheduling.

I also had someone call from a prayer list last night who has also gone through this.  She left her name and number and I hope to be able to speak to her tonight.

Thanks again,

Rick

[Mickey]

Hi Rick! I`m wishing you well with prayers and thoughts. Under the circumstances your young and perhaps in one of the better places for treatment in the world. Try to stay positive because with todays technology in a place like HEI, I`m sure that all will turn out for the best. Best wishes, Mickey

[lamplight]

Hi Rick
Can't contribute to the conversation on surgeons as I'm not in the US, but your comment about bike riding and balance is interesting. I too had a rather large AN (4cm) and am a very regular cyclist (almost daily) and I also had no problem with balance pre-diagnosis. The surgeon warned me that having good balance and no vertigo pre-surgery is likely to mean you're more affected with nauseau and balance issues after the surgery because the AN hasn't impacted on the balance nerve yet and then it gets cut to get the tumour out.

I was in some ways incredibly lucky as turned out that over time the AN must have completely killed off the nerve and I'd gradually adapted to it as had absolutely no problems afterwards at all. Was sitting up eating toast the morning after the surgery which the surgeon  said was very unusual (breakfast is my favourite meal of the day!)

Of course, everyone (and every AN) is different but hope this is the case for you too. I can only speak from personal experience and know that others' roads were not as easy as it was for me, but what you say about looking back on it as a 'blip in my life' is somewhat true - consumed four months of my life last year from diagnosis to recovery but now back to normal (apart of course from SSD hearing loss which is sometimes annoying but quite manageable).

Good luck

[kareno]

Hi Rick:

One year ago my husband 45 had a 3cm AN removed from Dr. Heilmann out of Tufts in Boston MA.  He did not have any balance issues or hearing issues, just headaches before the surgery and he is a runner.  After the surgery I am happy to report that he never had any balance issues, facial paralysis, headaches.  He does have SSD but has adjusted and may try the soundbite or baha.  Please have faith in your neursurgeon and team as they will do their very best.  Each persons surgery and outcome is all unique, everyone is different.  Just because your tumor is large does not mean that your outcome will be worse.   

You will be in my thoughts and prayers!!!

Karen

[rvb755]

Lamplight, it's good to hear from another cyclist that your balance has been OK.  The first doctor I talked to said I might be lucky to ride a bike on a flat road after surgery.  The doctor's have indicated to me that I have probably already lost the balance function on the left side.  I am hopeful that since my brain may already have compensated that my balance will be similar to what it is currently.

Karen, thanks for the encouragement and your thoughts and prayers are much appreciated.  Glad to hear your husband is recovering well.  I will have to deal with SSD as well, but my hearing is weak on that side already so I think I will be able to deal with that.

Rick

[New girl]

Hi Rick,

Sorry to  hear about your AN.  I am also new to this club and am pursuing surgery.  Hopefully no one got bumped.  They may had added another surgery.  That recently did that where I am having surgery since one of the surgeons is on leave.  Best wishes to you!  Take care and keep us posted.

[leapyrtwins]

Lamplight, it's good to hear from another cyclist that your balance has been OK. 

Patrick (texsooner) rides a bike long - and I mean long - distances.  Balance hasn't been a problem for him to my knowledge.

I think the majority of us, sooner or later, are able to ride a bike again.  It took me a little time to be able to ride my bike again, but once I regained the ability it's stuck with me.

Good luck with your surgery,

Jan

[CHD63]

Rick .....

This is a high stress time for you, no matter how you cut it.  I will say that I hope and pray you will soon find peace with all of this and can go into surgery knowing you made the right decision.  The more relaxed you are pre-op, the easier you will do with anesthesia and recovery.

As for bumping someone at HEI, that is doubtful.  They would not do that to someone else who was already scheduled.  They have a certain amount of flexibility in their scheduling on purpose ..... for those emergency situations, like yours.  So please do not add that to your concern list.   

Between now and surgery, try to finish up loose ends that would bug you while you are gone and then do fun things with your family and friends.  It really does make the time go faster.

My husband and I flew to California a few days earlier than needed to spend some time sightseeing in the LA area.  I felt so good post-op, we did some additional sight-seeing afterwards before flying home.  Best wishes for you doing the same.

Many thoughts and prayers.  Let me know if I can help answer any questions since I was just there three months ago.

Clarice

[texsooner]

Rick, Jan's right....I ride a lot of miles on all kinds of curvy and hilly roads and have since just a few weeks after my AN surgery. Just rode 75 miles this morning in the sauna here in SE Texas. I don't think doctors should make comments on things you might not be able to do. Like you said your balance nerve on the non-AN side has likely compensated for the damaged nerve on the AN side. That's pretty much what happened in my case. I can get a little wobbly in dark places sometimes, but otherwise good to go.

Good luck to you.

Patrick

[rvb755]

Thanks Patrick, your reply is very encouraging.  I'll admit sometimes if I spend to much time reading on the forums it is easy to dwell on all the bad things that may happen after my surgery.  I have managed to sort of get back to living my life, and I am ready to have the surgery behind me and begin to recover, whatever it may involve.  Again, thanks for sharing your experience.

Rick

[sarahinPA]

Rick, I am  not a biker, so i cannot comment on that part, but I am 8 days out of surgery, I also had gamma knife almost 3 years ago. Please remember to keep a positive attitude and peaceful feeling as you go forward with this. As many will tell u, waiting for the surgery date is the worst part, the anxiety is tough to work through. I am not a religious person, but I had so many people praying for me and adding me to their prayer chains, I really felt the calmness within myself, and I attribute that to the prayers as well as my own positive attitude. Of course I was anxious and scared going in, but the people on This forum and actually being able to meet with a girl my age who had been through it made things a little easier. 

Ask us questions, even though everyone is different we are all hear to help! I personally have had some difficulties, had a bad reaction to anestethia and a swollen nerve which caused swolliwibg problems and currently have a feeding tube in temporarily . But these things are minor in the grand scheme of things!!

Good luck!!!

[sterry]

I'm not a cyclists, but had a 3.7 cm tumor removed by the HEI doctors (they are wonderful) I believe it was about 6 months after my surgery when I went to visit my daughter in Laramie, WY. At 7250 feet in elevation, any way she had plans for me to go on a bike ride with her around town and campus, I pretty much jumped on and pedaled and it was super easy!!!! Which was really amazing since I really had done nothing but walk since surgery.  So relax, think positive, and you are in great hands at HEI. I know at the time I was scheduling my surgery, they had a cancellation and got me in the next month. The only thing I was told I couldn't do by Dr. Schwartz, is scuba dive.
Susie

[mertzirose]

dear rick,
    i just wanted to wish you much luck and a speedy recovery on your upcoming surgery, my son,ken, who is 22 will also be undergoing his an surgery on the 24th at university of penn hospital in philadelphia.he was diagnosed also with a large tumor ,4.5 to 5 centimeters, we are very anxious about it and his post recovery too. Right now most of his hearing on his left side is gone,so they wont try to save that, so far he is dealing with this as best as he can, he has a very good support system behind him with his family and friends. I hope you are also as fortunate to have that too,it means alot!! I will keep you in my thoughts and prayers as you and my son will be in surgery that day. Take care and God bless!!!
                                            Roseann