ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: stoneaxe on May 06, 2009, 07:54:41 pm
-
::)...Just got home from seeing Dr McKenna. He confirmed what I had been thinking. Get it out while the getting is good. Next step is to see Dr. Barker....yeah! I get to deal with Milli.... ;D
-
Oh man, that is a development. So you are going to do surgery, it sounds like. Oh well, I guess regrowth happens sometimes. I think I would be tempted to wait just a little more, to see if maybe it is done growing, but your are the one it is happening to, so you and your doctor know more about it.
I hope it all works out well in the end, Bob. Translab on a little 1.2 AN has a good chance of being smooth sailing, so lets hope it goes that way for you.
Steve
-
Well, it almost seemed to be heading in this direction after reading your more recent posts. Personally, I think it's the right path. Get it out, recover, and move on. But don't leave us :).
I will say an extra prayer for you, as you surely deserve the best outcome possible. You inspire us all with your great attitude and strong resolve. You've done more since your radiation treatment than I have done in my whole lifetime! I do need to try this stand up paddle boarding though :).
Ernie
-
Bob -
I'm with Ernie. My two cents worth says surgery is the right path. I don't think I'd wait to see if it grows.
I'm all for the get it out, recover, and move on idea. It's one of the reasons I chose surgery. I just wanted the AN removed and I just wanted to know what I'd be facing upfront so I could deal with it and start to live my life again.
Good luck,
Jan
-
I already had thoughts in that direction as you know. Dr McKenna said if it was him he would do the same thing. My AN is intracannicular, starting to enter the cochlear aperture. It in a tight spot so any growth is an issue. He said it is definitely growing so lets get it before it gets any bigger and further complicates things.
I hope to get in to see Dr. Barker ASAP and get on the surgical schedule quickly. I still plan on paddling 28 miles August 15th in the CCBC so I hope to talk to some folks that can talk to some folks that might help get surgery scheduled for mid-June. With a good recovery I might just make it.
-
Bob,
I hope it all goes well for you and they get the bugger out of there.
Best wishes,
Neal
-
Hi Bob,
You know that you're in good hands with the McKenna and Barker team. We saw proof at the brunch.
If you don't mind me asking--With the fact that you had had proton beam radiosurgery--Did Dr. McKenna make any comment about it making the surgery more challenging? Has he done surgeries in this situation before?
Take care,
Theresa
-
Oh Bob~
I am sorry about this, but glad you are ready, mentally, to get it out - hopefully once & for all!! You have such an incredible attitude and that will carry you FAR! You know we will be here every step of the way, cheering you on!
K
-
Bob,
You have such a great attitude that your outcome has to be good. No doubts about it! I'm sure you will be paddleboarding away come August!! Keep us updated.
Brenda
-
Well, your support team is here, 24/7. If you need me to deal with Mili when you're at the end of your rope, just ask. She's truly amazing. It's gotta be a volunteer position. But seriously, you've got a great surgical team. Do you have any idea whether or not you've been compensating balance-wise over recent years? That's the only reason I can imagine that I came out with no balance issues whatsoever. I don't know why I have no headaches or dizziness, but I plan to ask Barker at my six-week follow-up. I'm just dumbfounded by my outcome. I keep expecting something to rear its ugly head. I was struggling with a 50-pound bag of dog food, getting it from the floor up into my shopping cart, three attempts, and the next day I felt it in my back, and then I remembered I wasn't supposed to lift more than ten pounds for the first two weeks. I wonder if 50 pounds was supposed to be acceptable at four weeks. Oops. Well, my brain hasn't exploded, so I'm hoping I didn't do any damage. I really feel totally back to normal, just don't look quite right in the face. I'm hoping a great outcome for you, too.
Keep us posted on the surgery date. I'm glad the waiting for an answer and decision-making is behind you.
NancyMc
-
Hey, Bob...well, glad you've put the decision to rest, and can now get it out and then move on with your very full life...We fully expect to see some new paddleboarding video before the summer is out and perhaps a carving or two along with it! You'll do awesome, I know! You know we're here for you, too.
Cindy
-
Hi,
I had a translab on the 28 of April, my tumor was 3-cm big. I haven't done my follow up MRI just yet but my tumor was completely removed from what my surgeon told me. I fortunately didn't have any facial issues nor balance issues. I was up and walking 3 days after surgery.. dizziness was about all I have to deal with right now but that to is slowly going away. ;D Anyhow best of luck to you and your surgery.. We'll be routing for ya! ;)
-
Bob:
I want to offer you my congratulations on coming to a decision, which is always difficult, especially when dealing with a re-growth. Apparently doctors McKenna and Barker are the 'A team' in your area so I have confidence you're in very good hands. With these AN-experienced doctors, your good health and an ultra- positive attitude, I think this will go quite well for you. :)
Jim
-
Theresa...he did say there is a possibility of it being stickier but said it just takes longer. We discussed the possibility of it being necessary to leave a sheath around the facial nerve to preserve it if necessary. Hopefully if that is necessary it will still kill the little bugger by getting the blood supply.
Nancy...I did name drop with McKenna and told him how highly he comes recommended. I mentioned your concern for your facial nerve and he was convinced that its temporary. He said that the fact you had full function during surgery makes for a great prognosis. That whenever it happens that facial function diminishes after it almost always (99%) comes back fully.
You'll get a kick about my first Milli experience. The number MCKenna gave me...neurosurgery at MGH..they put me through to Dr. Barkers office. Milli answers the phone..."Hello?" it sounded like she was surprised to get a phone call.....no "Dr. Barkers office can i help you?"...just a very unprofessional quizzical hello. i thought i had been transferred to the kitchen or something for a second and had to ask if this was Dr. Barkers office....then she sounded perturbed like...of course it is...who did you think you called? At least after that she was reasonably helpful and got me a quick appointment where someone had concelled.
Thanks for the kind words and thoughts all. i'm not concerned about this really. Just want to get it done. i'm actually more concerned for Suzanne and my girls...I know they are worried. I'm encouraging Sue to logon here and get to know what to expect a bit before the day comes. She'll of course keep you informed and I'll be looking for you folks to hold her hand. Thanks so much for being here.
-
Better make nice with Mili. She pulls the strings, well, she pulls them if you demand it, but she can also ruin your day, so don't get her all "perturbed".
Suzanne is a sweetie-pie, we'll be happy to hold her hand. How about a picture of your girls?
I may be hallucinating, but I do believe my facial movement is improving dramatically. I'll get a photo one day for comparison.
When do you see Barker?
-
I'm encouraging Sue to logon here and get to know what to expect a bit before the day comes. She'll of course keep you informed and I'll be looking for you folks to hold her hand.
Bob -
this is a great idea.
The day of surgery is often harder on those waiting than on those going through the procedure. And post op, caretakers need just as much support at the "ANers".
Jan
-
Bob,
wishes of wellness as you go into surgery. I know this has been very difficult for you but have faith that this is all going to work out just fine! :) Hang in there and you know that I'm cheering you on.... :)
Phyl
-
Better make nice with Mili. She pulls the strings, well, she pulls them if you demand it, but she can also ruin your day, so don't get her all "perturbed".
Suzanne is a sweetie-pie, we'll be happy to hold her hand. How about a picture of your girls?
I may be hallucinating, but I do believe my facial movement is improving dramatically. I'll get a photo one day for comparison.
When do you see Barker?
I actually was very nice with Mili. I think thats why i got the early appointment... ;D
Thanks..I know she will seem like a rock on the outside that day but she'll be a wreck inside. Photos of the girls...and more...in the photos of friends thread.. http://anausa.org/forum/index.php?topic=8049.msg91374#msg91374 (http://anausa.org/forum/index.php?topic=8049.msg91374#msg91374)
That's great to hear Nancy! I see Barker on the 18th. I'm hoping to get some favors asked to get a quick surgery date.
Jan...yeah...I'll be sleeping... ;D Did you get my PM about Chicago paddleboarding?
Phyl...this has certainly been a surprising turn of events for a guy that came to the forum a few months ago to let folks know the therapeutic power of standup paddlesurfing.
Speaking of which...surfs up....I'm outta here...later friends.. :D
-
Bob -
I did get your PM. Just responded a few minutes ago, as a matter of fact.
Thanks ;D
Jan
-
Oh, yes, I remember your beautiful girls.
-
Hi Bob,
I think you'll do great. I think your paddle surfing has been and will continue to be therapeutic and helpful in spite of your having to have surgery now.
I hope you can get it scheduled so you can do your surfing in August!
Keri
-
Hi Bob,
Congratulations on the decision. If I recall, you are already having some balance issues, and i bet you are similar to me in that the brain is already compensating for the loss of balance. I was sitting up in the ICU the next morning, and by that afternoon, they had me walking the hallway. I could tell early on that my balance was already getting better. The only slower issue has been the eye movement thing, but I need to get better with the vestibular excercises. If you are interested, I will also be at Barker's office on the 18th for the follow up. If I can add anything or provide some insight, let me know. I am sure that you are going to do very very well with surgery and the post-op recovery. You will love it when you have this all in your rearview mirror! I know that I am !!
Steve
-
Great pictures. I had forgotten about this thread. It's nice to see who people are and families, etc. Maybe one of these days I'll post something.
-
Hi Bob,
Best wishes for an early appt. Maybe you'll get this over and done with in time for the October brunch!
You have a beautiful family. Don't worry. The group here will "circle the wagons" to get you and your family thru this.
Take care,
Theresa
(tsl)
-
Bob,
I just remembered that one of the very few discharge instructions that I received was no swimming or taking baths for six weeks (when I see Barker). You must have a dry suit that you could wear for practice. ?
Nancy
-
Theresa...I plan to paddle across Cape Cod Bay August 15th, I'd better be ready for the brunch.... ;D. Thanks for the kind words. I'm am blessed with an great family and friends.
Nancy...I plan to do a lot of dry land training as soon as my head allows. I have a balance disc and and I've made a wall mounted training device to simulate paddling. I'll start out with light weights. I also have a treadmill and a total gym which i really like. If everything goes according to my plan...2 weeks of nothing but a little walking...focusing on eating right and healing, 2-4 weeks of indoor training starting out very light/short and steadily increasing to a hopefully somewhat vigorous workout. 5-6 weeks back on the water for two weeks of hard training before August 15th. It's going to be tough but I really want to do this for myself and to show these kids that will be watching that you can get through this kind of stuff.
Besides...I need to get back in shape for fall surf season.... ;)
-
Congrats Bob,
I also think it is the right thing to do. Hope everything will work out fine. I'm about to get my surgery date tomorrow :o It will be soon, in week 21 or 22!!
I have been waiting for this, but now as it's becoming reality, I'm very scared!!
Best wishes from Helene
-
Off to see Dr Barker tomorrow at MGH. Hopefully I'll also get a surgery date tomorrow. Fingers crossed for early June.
-
Good luck, Bob ;D
-
Good luck today, Bob. I see him on Thursday for six-week follow-up. I think Steve (Seal) is in there today also. Look for a fisherman type.
You should be meeting with Mili after Barker steps out. She will ask you when you want to have surgery. See if you can get her to call Helen in McKenna's office while you are there to schedule your surgery. Remember, she is challenged by follow-through.
Keep us posted.
Nancy
-
I saw Dr Barker today. A somewhat frustrating day. He said he thinks I'm nuts if I think I'll be able to participate in the CCBC on August 15th even with a early June surgery date. We'll see. McKenna didn't express that so strongly. I still don't have the exact date yet. Mili promised me tomorrow. Other than that no surprises. Signed the initial papers.
-
Bob -
I'm not a doctor, and I'm sure there are things about your "situation" that I don't know, but everyone recovers differently. I personally think if you have surgery in June, and don't run into complications, like a CSF leak or something - you should be able to participate in the CCBC in August.
A positive attitude goes a long way in recovery; you've got my vote. Don't get discouraged.
Best,
Jan
-
Hi Bob,
So you'd have about 2 1/2 months to recover? Like Jan said, seems do-able barring anything bad. I would think the fatigue issue might be the worst part of it... but at the same time you'd be all psyched up, and that would certainly help. Plus, you're staying in such great shape right up until surgery... that makes a huge difference too. How long does it take you to do the CCBC? In runner's terms, is it like doing a marathon, or a half, or something horrid like a 50 mile run?
(nancy... from your post i get this mental picture of seal walking the great corridors of MGH with rain slicks and boots on, carrying a fishing pole).
Keri
-
Thanks Jan...Yeah...I still think its doable. I'm sure it won't be easy but that will just make it all the more satisfying.
Keri...it took us 7 hours last year. Definitely tiring but nowhere's near the difficulty of a marathon. It's not a race. The group of us sticks together and go at a steady pace. If I had to compare the effort to a run I'd say its slightly more difficult than a half-marathon. I was tired but not dead at the end of last years paddle and went surfing the next day for 3 hours.
-
Bob,
Just reading about your upcoming surgery.
I had translab and had no balance issues post op because the other side had compensated. Mine was same location as yours. (but also much bigger >:()
You are in great shape and your work is amazing!
As far as the paddling thing- keep postitive thoughts, but be realistic in how you are feeling at the time.
The body is very sensitive to changes after brain surgery!
It IS harder for the family, I believe with the stress of the surgery.
We'll be there for your family too. :)
Maureen
-
Hi Bob,
In true AN - spirit: I am so sorry to hear that you have to have surgery, but glad you have decided and are getting it done with!
I think you know my story about the Ironman I am registered for in August, and my worries with AN surgery, recovery, and fitness loss. I still havent gotten back to "training" at 3 weeks post-op, but I was able to go to the gym a bit this week and have to say was happily surprised that doing cardio not only felt more comfortable than I thought, but also seems to be improving extremely quickly. I still don't know what I will be capable of in terms of the race, but am hopeful at this point. My biggest concern was fatigue, but my energy came back quickly after 2 weeks. My 2 cents: take it easy until you feel really ready, your body will dictate rest for you and welcome it. I predict you'll find it will be easier than the doctors think to get back into activity and your race.
Good luck,
Laura
-
If it is remotely possible, I have a feeling Bob will find a way to paddle. :)
Laura, I'm glad to hear you are doing better now. I am predicting you will run in August as well. ;)
Steve
-
I got the date for surgery today June 26th...yuck. They said they'll try to move it up but I'm sure its not high on their priority list. That would leave me just 6 weeks of recovery time. ... >:(
Thanks you Maureen...I'm more worried about Sue and my girls than I am for myself. I feel like sending the 3 of them to a spa for the day while I have surgery. Something to try and take their minds off it.
Laura...so glad to hear from you. Great to hear its going well. We'll be cheering for you.
My biggest concern is the fatigue issue. I'm also not as young as you so i don't expect my recovery will be as quick. I am going to be pushing things to the max right up until surgery since I figure my body will have some recovery time for a couple of weeks at least before I can do anything. I have a treadmill, a total gym, and a Wii fit that will allow me to start off slowly in the house. I'm going to be cautious. No sense in doing damage.
LOL....Steve has me pegged...outwardly optimistic...if I can I will...still a little nervous though.
-
Hi Bob,
Well we may have passed each other in the hallway on Monday at MGH, but I didn't see anyone with a paddle in their hands! ;D I'm sorry to hear that you have to go the route of surgery, but you will feel great to have it behind you after your June date. To give you some info, I am now five weeks post surgery, and this is the first week that I am really starting to feel normal again. Eventhough I also worked hard staying in shape on the stationary bike prior to surgery, the real issue is the fatigue. This week is going to be my first attempt at some light work outs on the bike and distance walking. I am sure that I could have started earlier, but frankly I just didn't feel like it. My concern was more about giving my body the rest it needed to recover well rather than trying to push the envelope. You'll understand when you get there.
Good luck on the surgery, and keep working out right up the the surgery date. I am sure that this had alot to do with my quick release and healthy recovery post-surgery.
Steve
-
Hi, Bob
Finally getting caught up with my all my forum reading after a work-imposed time-out!!
Sorry you have to have the surgery, but I am sure you'll do well, and hope you can make your CBCC in August. But do take care of yourself!! That's the most important challenge!
I am also a proton-grad, but much more recent than you. Like Theresa/Tsl, I will surely be waiting to hear how "sticky" that AN got after your earlier radiation treatment.
Best of luck!
Elaine
-
Hi Steve,
I was hoping we'd meet in the waiting room or something. I was a little early for my appointment but had a meeting scheduled at Christopher's Haven (charity of my CCBC paddle) after.
We'll see how things go....hopefuly I bounce back quickly.
Elliemae...I'll be sure post how sticky this was/is.
-
Hi Bob,
Good that you've got your surgery date. I've marked June 26 on my calendar. You are doing all the right things in preparation and have a good attitude. A strong sense of determination, solid physical shape along with your family and the support group on this site are all HUGE pluses. The fact that you are "a little nervous" makes you very human.
Please keep in touch.
Take care,
Theresa (tsl)
-
Hi Bob,
Just wanted to wish you best of luck on your upcoming surgery. You will do fine like all the others.
Keep us posted.
Vivian