ANA Discussion Forum
General Category => Inquiries => Topic started by: Denisex2boys on February 07, 2008, 02:40:16 pm
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... oh my - whilst I have patiently waiting and anticipating meeting with the Neurosurgeon - my appointment is tomorrow - and I almost feel like I knew the 'script' but have now forgotten the words!
I last met with Dr. Parnes in Sept. and tomorrow I am meeting with him and Dr. Lownie - 4CM knows who they are :) They are an awesome team! But, the appointment I never thought would get here is HERE and I really don't know what to expect. I know they will be reviewing my latest MRI (which I posted last week) and .. I guess, letting me know if there is growth or not ....... if it weren't for the fact that I have so many symptoms I would probably opt to wait this thing out a bit longer ..... the hearing loss was very sudden and I feel getting worse (but I don't really concern myself with that as I definately want to discuss the translab. approach with them - so I would be sacrificing what I have left anyway) - I want the MOST direct route to this thing with the least complications. It's the pressure, headaches and tingling I am experiencing now - and I really don't want vertigo to set in - I have had a few dizzy moments but nothing that I can positively attribute to the AN.
SO, friends ....... what are they going to talk to me about tomorrow? I value everyones previous opinion but I am not even thinking of radiation as on option - I want it gone, not dead, gone! Just seeing the 'blob' on my MRI gives me the creeps.
I am just so anxious - it is such a weird feeling - it's not like having a bad gallbladder and being in pain ..... they perform surgery and the pain is gone ..... basically this is just to get rid of the tumor - right? - that the tinitus, pressure, tingling and headaches could persist? Or will these cease with time.
Thank you all - keep your fingers, toes, eyes, legs, EVERYTHING xxxx'd for me tomorrow - and a few prayers will help too!
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well, Denise... looks like we both have AN appts tomorrow (and again, for me, on Monday). Like you, nerves shake, but... I'm taking a deep breath and hoping for the best. I meet with my NS (back up AN microsurgical team if need be, as they also track/treat my Chiari 1) tomrrow and have my hearing test... Monday, I meet with my AN radiation team. 22 mos post CK and ......like you, nervous anxiety sets in.
so, let's take a deep breath together. Ok, tomorrow, you think of me... and I'll think of you... and we go hand-in-hand to our respective AN dr appts tomorrow with a feeling of calm.... and peace... that all will be ok.
Whatta think?
Please hang in there hun......it's going to be ok. :-*
Phyl
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Denise,
I'll be thinking of you. You should have a nice glass of wine tonight and a hot bath. Hubby needs to get the babies down early. Than your hubby needs to give you a nice back massage so you can slip off into a deep relaxing sleep. Good luck my Canadian buddy, i know you are in good hands......hubby's and Drs ;D
Phyl,
Good luck to you also. I be thinking of you too! Wine, bath, massage from hubby sounds like a plan for you too ;D
Both of you better post and let us know what the Drs say.
Anne Marie
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Thanks Anne Marie and Phyl!
.... don't great minds think alike! ...... Brendan and Mitchell are at Nana and Poppa's for the night as we need to be in London by 9:00 am - and with the load of snow we have it may be a slow go down the highway. I just had a HOT HOT shower and am cooling down with a nice glass of red wine! .... and this was all BEFORE reading your post!
Phyl .... I will definately be thinking of you tomorrow too! ((((HUGS))))
I am not sure what I want to 'hear' - I think I almost want them to recommend that it comes out ... sooner than later ... my hearing is shot anyway ... I don't think I will be able to stand this anxiety every 6 or so months.
.... and is it not true? That the smaller it is the easier it is to get out and the less complications are encountered?
Thanks everyone! I am such a newbie at all this that I am not all that a great resource for others .....
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I'm keeping you both in my thoughts and prayers today. I hope your appointments go well. I'm getting myself ready for my MRI today. We are in this together..............Hugs and good wishes and thoughts.
Brenda
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*runs in .... gives huggles to all that needs them today..... :-* :-* :-* :-* *
Ok, let's knock em dead, stand tall and strong and let's go fer it!!!!!!!!!
xoxoxoxo
Phyl
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Hello to you "The Mighty Three",
May I just say that you are in my Prayers as I am sure the rest of our fellow AN'ers share your worries and concerns. May you all have "Good News" to celebrate. We'll look forward to sharing in your reports. God Bless you,
Jackie
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Hi, all
I'm new at posting, though I've been eavesdropping for a while. You feel like family to me because we have a big deal in common. It's been very helpful reading all the input.
Like Denise, I too, hoped that the smaller the tumor (mine is 1.5cm), the easier the surgery. I found out this week from the nuerosurgeon that will be assisting in my surgery, that position of the tumor is a big factor, too. Mine is pretty far in, which would make it very difficult to get to with retrosigmoid, which is what my nuerotologist recommends. So the nuerosurgeon is recommending translab.
Good luck at your appointments.
Nice meeting you all. I look forward to participating in more discussions.
Syl
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Hi SYl and welcome! Good to see you here and hope the site and inputs shared by all is helping. Nice to see others step out from "eavesdropping" and sharing experiences here... There are many here that have had translab done and I'm sure they are willing to share experiences with you. Also looking to further participation from you :)
As for the appt... Tatianne just did a sweet post in "AN Issues" and I noted there my update from today's appt :) Next stop, my CK team on Monday.
As for Denise and Brenda.... {{{{{{{{{HUGGLES!!!!!}}}}}}}}}}
Thanks again all!
Phyl
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Great big huge Canadian Mothering Bear Hugs being sent you Phyl and Denise.
You are both on the top of my list for tomorrow in thoughts, prayer and well wishes.
Cheers,
4
P.S. Phyl I promise not to throw any snowballs at the neighbors horses while you are away … besides all our snow has melted and rained away… My Oregon rural neighboUrs still cannot pronounce “toboggan� without a puzzled look. Denise – when you are next tobogganing with the boys- think of those misplaced Canadians pining for snow instead of rain…
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4, melted snow?!!?!?!?!? :o I wish!!!!!!!!!!!!!!
thank you all again... 2 down, 1 to go...
Denise!!!! HUGGLES!!!!!!!!!!!!
Phyl
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Hi, all
I'm new at posting, though I've been eavesdropping for a while. You feel like family to me because we have a big deal in common. It's been very helpful reading all the input.
Like Denise, I too, hoped that the smaller the tumor (mine is 1.5cm), the easier the surgery. I found out this week from the nuerosurgeon that will be assisting in my surgery, that position of the tumor is a big factor, too. Mine is pretty far in, which would make it very difficult to get to with retrosigmoid, which is what my nuerotologist recommends. So the nuerosurgeon is recommending translab.
Good luck at your appointments.
Nice meeting you all. I look forward to participating in more discussions.
Syl
Syl,
Welcome to the site. I noted that your doctor told you that the position of the tumor makes retorsigmoid difficult. The position of the tumor is important. Have you seen more than one doctor? Are they both saying the same thing? I can't stress enough that for this diagnosis and given the fact that there is time to research, getting a second opinion is desirable.
There is another surgery called Middle Fossa. Because of the incision location, the view is different. This approach is used to attempt hearing preservation. Statistics show that the better the hearing one has ahead of the operation the better the chances of good hearing preservation. The location of the tumor on the superior nerve vs. the inferior nerve is better. The HEI website states that "In patients with small tumors who have been operated by the middle fossa approach since 1992., good hearing has been preserved in roughly two thirds of those patients. Any measurable level of hearing was preserved in 80%." It has higher hearing preservation rates for tumors under 2 cm than retrosigmoid. From the HEI website, it states that: "95% of 380 patients undergoing MF maintained excellent facial nerve function. Only five percent suffered minor weakness of facial nerve function."
The incision is made in front of the ear by creating a bone flap. There is an unobstructed view of the entire IAC with this surgical approach. This allows complete tumor removal. The middle fossa approach is performed by lifting of the temporal lobe of the brain. This approach is not recommended for patients above 60. At House Ear Institute, in a review of 500 cases with several years of follow-up, they identified only one case of residual tumor (0.2%).
Kindest regards,
Kate
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Kate
I will be getting another opinion on Monday.
The score so far:
Retrosigmoid = 1 and a half votes
Middle fossa = half a vote
Translab = 1 vote
The Dr. at HEI suggested either middle fossa or retro--that's how I got the halves.
I have a tentative surgery date set for May 19. It gives me time to research, consult, discuss, and think.
Syl
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Syl,
Fast questions please... what is the exact size of your AN (unless I missed it somewhere....) and if 2cm or less... have you begun research of radiosurgery options or thoughts of consideration of radiosurgery? Just curious....
Please hang in there......we're here to help.
Phyl
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Hi again Syl,
I am glad that you are going for another opinion on Monday.
When I look at your doctor recommendations so far, only one doctor has recommended translab.
"Retrosigmoid = 1 and a half votes
Middle fossa = half a vote
Translab = 1 vote"
The HEI doctors didn't recommend that one. Did they say why? The thing I found is that doctors typically have procedures they are the most comfortable with; even if they indicate they do all 3. If time presents itself during the visit, ask how many patients have been operated (by them) using each procedure.
Do you have good hearing in the AN ear? If so, Middle Fossa gives you your best chance at retaining hearing. With translab, you lose your hearing.
Kindest regards,
Kate
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Phy and Kate,
I was diagnosed with a 1.5 cm AN in early December '07. I started researching immediately, and "eavesdropping" on you guys soon after. By now I have ruled out radiosurgery. I don't want to wait to know that the procedure worked. I want that thing out.
My hearing is still relatively good (68-75%, with the 68 being voice recognition). All Drs. I've talked with have explained the radiotherapy and surgical approaches. They all want to save my hearing, but the one that recommended translab thinks that those chances are at 25% with retrosigmoid (retrosig is what my neurotologist recommends). My tumor is deep inside, making more difficult to reach with the procedures that might save my hearing. He believes that the procedure that can remove the tumor completely is the translab procedure.
I know that translab completely sacrifices the hearing, but is a lower risk for the facial nerve (my face is still fine). Then there's the issue of headaches. I want whatever will get me the best quality of life--headaches have a way of interfering with that.
I will keep researching, discussing, consulting, thinking.
It is amazing how Drs. opinions can vary so much about one patient.
So I'm getting another opinion on Monday, and have yet to meet with another member of my surgery team.
Thank you so much.
Syl
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Syl~
I had a translab a little over 12 years ago (I was 25). Yes, of course, I do not hear in that ear, but you get used to it and it just isn't that big of deal. I have an incredible life and have gone on to have 3 beautiful daughters and a full life! I would love to talk to you, if you would like. You can PM me and I can also give you my blog address if you are interested.
There are many more options out there now and I certainly can't tell you about them and which choice is best for you, but I can tell you what life is like for me after a translab and more than anything, I can LISTEN!!
Good Luck!
K