Just found out yesterday....

[Lisa Peele]

Following up on a few other posts...

I was trying to think back to my own recovery and remembered something that made me laugh.  I was doing pre-op with Dr. Stefan and he was answering questions patients frequently have.  He said, "Lots of people ask when they can start having sex again after acoustic tumor removal.  And the answer is...please wait until you leave the hospital!"   

Yes, you will have to modify your exercise routine (especially the weight lifting) in the months after surgery.  But, you will figure out what works best for you!  Recovery is an interesting thing...everyone is different and you just have to go with what your body (and doctor!) is telling you about resuming activity--of all kinds . (Also consider walking, swimming, etc. as alternative routes to staying fit when you are cleared to begin getting active again.  Then you can build back up when it makes sense to do so.)

I got back to normal Life pretty quickly.  I had four children when I had my surgery (now there's 5), so I keep a pretty busy pace.  I was able to keep up after them and the house, and walk at least a mile a day by about 2 months out.  By three months out, I didn't have stamina issues at all.  My balance was not negatively affected...with larger tumors, your body has sometimes already compensated for the loss of the one balance nerve.  My surgery was only 3 1/2 hours, and I think less time under anesthesia means shorter recovery time (btw, I was quoted 8-18 hours for removal locally).

Also, you may already know, but it's the neurotologist that makes the first cut and exposes the tumor.  The neurosurgeon is the one who actually removes it.  At HEC, there is a team of doctors in the operating room (with an entire staff of nurses), and they are all experts.  Rest assured that you'll be in the best place to make it through this in great shape. 

All my best,

Lisa

[Samantha n Adrian]

Sam here!

Those last 2 posts from Bruce and Lisa made me laugh! Thanks guys... I needed that.   

I really do not have any new news to post as of yet. Well except for this waiting thing is harder than I thought! I want this invading mass out of Adrian's head already.....    I do not want to rush our decision or anything and I always like to fully do my homework before diving into anything.... but part of me is just so anxious to get it out now.... I am so nervous that everyday we wait is another day we let it get a little bigger. Like the darn thing is big enough! I am just a worry wart though...

I mainly just wanted to say to all of you THANK YOU so much for taking the time to read our story & questions and for the posts and personal messages you have shared with us. You all are awesome and your input is MUCH appreciated! I wish I could personally thank each of you back individually ...and I will when I have the time for sure!

I can't even think of how much harder this all would be to deal with if we didn't have our AN family here to talk and share with....so really... Thank you!

Sam~

 

[Samantha n Adrian]

Bruce….if you don’t play nice, I’m going to take my BOWLING BALL and leave this sandbox!   

I just want to comment that I really can’t say anything that Sam didn’t say in her last post, that about sums it up.  I can’t thank everyone enough for all of the wonderful advice and support.  I am truly humbled that people I don’t know care about my little story.  It is at times, overwhelming, Thank you!

Lisa….I read you stories and can’t help but want to get on a plane and go directly to House.  We’ve been playing phone tag, House and I, and I always like how I feel when I talk to them.  I have spoken to the counselor/coordinator often.  I met a local Neurosurgeon on Tuesday and I really liked him.  I just don’t know that he’s right for the “jobâ€?.  His name is Dr. Melvin Fields, if anyone has used him in Orlando or 4+ years ago in Pennsylvania, I would love to hear from you.

Thank you once again for all the wonderful advice and incredible support!  I truly enjoy all of your posts and wait for them eagerly.  I will update as I get more information.


Adrian

[Lainie181818]

Hi Adrian and Sam
Guys can be tactless, Don't think of it as a bowling ball, just look at it like an uninvited intruder who is going to be leaving soon one way or the other. I had my surgery 15 months ago at House, I had Dr Hitselberg and Dr Brackman and like you I was concerned about their age. Dr Brackman is in his 70's and I remember handing something to him and holding it at a distance that I could see if his hands were steady or not. Between the 2 doctors they have to have about 100 years experience, and they do these procedures almost daily. It was quite funny when I first went to House for my hearing test, the audiologist had to be in his late 70's. I then saw Dr Brackman and Dr Hitselberg and I started to feel like I was in a "cocoon" movie. Anyway Adrian, Sam sounds like a great girl and I am sure she will be a great support during your treatment and recovery. I was fortunate I only live 20 miles away from House clinic but it was still difficult being driven there for follow up appointments. However you will get through it and we are all here to help.
Lainie

[Caroll]

Hi Sam and Adrian

Now that a few days have passed since diagnosis, and with all the support from this site, finding out lots more information, no doubt you are feeling a bit less stressed.  At least I hope so

If you have by any chance read the LInks to MS thread then you will allready know about me.  I had a 4cm AN removed at the end of 2003 (I was 41 at the time) with further surgery 6 weeks later to repair a CSF leak.  My recovery was good after that despite fatigue, balance, hearing, equilibrium and eye problems continuing - though lessening.  The discovery of and surgery on the AN represented a major life change for me and less than one year after surgery I took a 3 week holiday in Egypt then 18 months later a 2 months trip to UK and England, and now here I am living and working in Kuwait.  From here I take every chance to travel. 

I often now forget that I had major cranial surgery and chastise myself for getting so tired, so quickly.  I automatically take care walking down stairs, or in the dark, or on rocky ground - but the balance has improved over the years.  My eye does get tired/sore if I spend too long in front of a computer or TV but too long nowadays is all day   not just 1/4 hour.  Even within 3 weeks after the surgery my eye had improved greatly and I was able to watch 1 1/4 hours of Lord of The Rings # 3 without it getting too sore.  The disequilibrium problems have certainly lessened and once again you get used to it and learn what you can do and can't - at least for now - then you just keep pushing just a tiny bit further each time.

I am absolutely under no doubt that accepting the tumor, having faith in a positive outcome (a positive outcome doesn't mean everything rosy but that things could have been worse), a degree of physical fitness, meditating and the support of loved ones were the main factors in my recovery - and of course an experienced surgical team.  By far in all of this though - a positive attitude has to be the most important single factor. 

All best wishes are sent to you Sam and Adrian, along with a good measure of positive thinking

Caroll

[Samantha n Adrian]

I don't have time to write, but I do want to clarify the "bowling bowl" comment.  In no way, shape, or form did I think that Bruce was being rude, I knew how he meant it and I thought it was funny.  The one thing about type is that you can't tell sarcasm.  My comment was very sarcastic and was supposed to be funny.  Bruce is one of the MOST informed and educated people on this forum regarding AN issues, I have nothing but complete respect for him.  So....that being said, I will write a post tomorrow morning, hope everyone has a good day......TGIF!!!!!!!

Adrian

[ppearl214]

Heck Adrian,

I prefer to toss Bruce a curve ball on occassion... he knows I'm famous for it.. and you are right... he's not the rude sort and he's on the "ball" as well!

I'm thrilled things are moving along for you, that you have found comfort in your decision and ask that Sam keep us updated on how things go for you and your surgery as it occurs.  We're here to cheer you on, give our support and on occassion, toss back a bit of sarcasm as well...

I have to side note that on that last comment.. was watching Larry King Live (CNN) last night and his interview with Tammy Faye (Bakker) Messner... here is a woman on her deathbed and the humor and positive light she carries with her, even during this difficult time, is amazing... Dr. Deepak from CNN was also on the guest panel.. and he noted how humor and positive energy is confirming to the medical community that it can help with longevity in those terminally ill.....and she is proof of it.  I am not of her faith, but of her "human" faith and I commend her on keeping her head held high (as best as she can) with such love and support and positive vibes for all during this time.  She truly inspired me with her words of strength... just in awe of her right now.....

Now, granted, we are not in her shoes... but.... we are enduring a difficult journey.. so keep the positive thoughts... the humor... knowing we are all here supporting you... cuz we're going to help you (and Sam) during this journey.... and heck.... the "ball" in your head will be gone shortly....but milk your current MRI films now... so you can look at Sam and say "Hun, look at this... physical proof I really DO have 'something' up there!"

Hang tough!
Phyl

[tripsplus6]

Sam and Adrian,
    I replied to your "ear infection" post on that thread, just so you know.  Good luck.   Keep us updated.           
                                Terri   (tripsplus6)

[Battyp]

HI Sam and Adrian,
just sent you a private email...
I'm in Melbourne about an hours drive from you.
I've I'm not mistaken I think CeeCee treated with or met Dr. Fields. She had a facial nerumoa removed via endcoscopic procedure and for some reasont that name rings a bell.

You'll find we are a great network of compassionate and caring people who will stand by you while you make this decsion.
Yes, stress can make your sysmptoms worse.
haven't read all the inbetween posts but know from the names I've seen you've been given some good advice.
Now you and Bruce play nice together.... He's one of the most knowlegeable and bestest crew member we have..he knows where all the good treats are hidden too!

Hugs,
Michelle

[robynabc]

Adrian and Samantha. 

I am sorry to hear about your diagnosis but I know everything will be fine.  I don't know if you read my other post about my 18 year old who just had surgery about a month ago.  I noticed that you replied to it.  Good luck with finding the doctor.  As difficult as it was to go through the surgery with my son,  it was very difficult to decide on the doctor.  I spent 2 weeks going back and forth and researching.  It was between our doctors here and House.  It was agony deciding becuase at the time you are very emotional so making a clear decision was difficult.  The best Advise to me is after you have reasearched and researched, go with your gut.  And don't be shy at all about asking about qualifications.   I felt the decision on doctors was agonizing. And it is important to decide and don't look back.  Trust your instincts.    Good luck to you sweetie, you will be fine. 

Robyn

[Samantha n Adrian]

**Update**

Sam here...

Just wanted to give an update to our decision process. A friend doctor of ours highly recommended Dr. Bartels in Tampa. He and Dr. VanLovern would perform the surgery. Adrian e-mailed Bartels and was very impressed with the million and 1 questions he asked him. (House really didn't ask much) and when Adrian e-mailed him back answers to all the questions he sent along his list of questions for the Doc. In Dr. Bartels reply he explained many things in depth that we have not heard from other doctors and Adrian was fully impressed and got a really good feeling about him. So for now House is on hold. We have an appointment the 15th and have surgery also tentatively scheduled for Sept 6th! I am so happy to have a DATE! Amazing how much better that makes me feel! I guess because I just want this out so bad....

Anywho... If there are any here who know of either of these doctors we would sure love to hear your experience with them.

Thanks again for all the wonderful support and advice we have been receiving!!

HUGS
Sam~

[leapyrtwins]

Sam -

I don't know either of these doctors, but I'm so glad to hear that Adrian is impressed with them.  I personally believe in following your "gut" and in my case it helped me make the decision that I felt was right for me.  If Adrian feels good about these doctors, and they have the experience necessary, IMO that's a good sign.  Good luck with the appointment on the 15th.

Keep us posted,

Jan

[robynabc]

HI,

I can give you what we did.  I will be candid this is just our story.


I too talked to House.  The problem I had was how pushed I felt by them. In contrast to our Doctors at Colorado University it was complete opposite of how they operate.  I couldn’t get the CU doctors to tell us how good they were.  That was hard for us.    Then I asked the Doctor at house about how they would do the surgery and about the doctors we had here.  He asked about how my doctor here wanted to do it and he flatly told me that my doctors weren't going to be doing it the right way. Meaning they almost always do translab and he didn't like the Retro method. I felt uncomfortable with that too.  So I called my doctors and asked them about the different methods.  I was told that translab was a good method but they wanted to use retro because of the brainstem issue. I personally felt that sticking to only one method was a little bit too constrictive.   House also wanted to leave pieces even around the brainstem.  So I talked to our Doctor about that and he was not as comfortable with leaving pieces, he would if he had to but they don’t do it unless they have to. Especially because Eric was so young.   Our doctor gave us examples of cases over the years and what he had done and the problems that he had seen years later.   When I talked to that doctor and realized that he had seen these for years and understood what can happen later because that is how experienced he is, I knew he was our guy.   I also was told by many ENTS that our ENT was a fantastic surgeon.   

It was very hard to make up our mind because our ENT surgeon had the worst bedside manner ever. He was terrifying.  LOL.  But our original ENT said that that is how some surgeons are.  They are a different bird.   I remember the last day when we had to make a decision.  My intuition said go with our doctors here but I kept feeling like I should ‘want’ to have Eric go to house That was agony. So, I finally asked my doctors outright about what they thought about their competency and I felt satisfied at that moment and listening to my intuition was the key.  We had a great result and we had a great result with the whole tumor gone.   Of course our ENT said that was luck.  I tend to think that part was the reiki  and the prayers and the incredible skill of our doctor combined.  And we did our best to stay as positive as possible.  It sounds like you are doing that quite well.

Once again,  I know that house is good but they are not the only ones that are good and remember,  how many you do in a year is not the ‘only’ criteria for picking a doctor.   There is not just one doctor in the US who can do these and are good at it.  Because Eric had such a large tumor we were lucky to get our ENT doctor.  He only does difficult cases.  I believe if he was not our surgeon we would have gone with house.  Just our story.  Hope it helps.

PS I feel picking the doctor was really hard.  After that we just left it in their hands and knew we made the best decison possible.  GOOD LUCK> 

 

1

[sgerrard]

Robyn,
House is good, but they are by no means the only good clinic. In fact there are quite a few good AN surgeons around. You picked well, and did a great job as "AN Manager". Well done.

Sam 'n' Adrian:
In case you are not a fanatic Googler like me, I checked up on those two. First, about Loren J Bartels MD FACS, Clinical Professor of Department of Otolaryngology, University of South Florida, College of Medicine, Tampa, Florida.

He is no slacker, that's for sure, his list of appointments, articles, presentations, etc. is longer than my arm:
http://www.tampabayhearing.com/PeopleBartels.aspx
 
And according to this link, he has done over 400 AN's and 100 other skull base tumors. He's been around the block, in other words:
http://www.tampabayhearing.com/Tumors.aspx

The neurosurgeon you also mentioned, Harry R. van Loveren, M.D., is Chairman of the Department of Neurological Surgery & Rehabilitation - not exactly a slacker either. Here is a link on him as well, although without as much info in it:
http://health.usf.edu/com/neurosurgery/faculty.htm

I'm no expert, but they sure look good to me. You must be psyched to have a date set, you have done a great job handling all this.

Best wishes,

Steve

[robynabc]

Thier credentials  look impressive. 

I forgot to say too that I asked other ENTs in the area what they thought about our doctors.  That made a huge difference in making our desicion and the nuerosurgeon is as important as the ENT surgeon especially with large tumors.  When I asked one of the ENTS here in Colorado about Lillihei they said that Tumors is all he does all day long.  That was important to us too.   I called a ton of doctors to see what they thought.  It was very helpful for us.