Author Topic: Four Days Till Surgery  (Read 64281 times)

Captain Deb

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Re: Four Days Till Surgery
« Reply #90 on: March 11, 2006, 07:40:43 pm »
Wecome aboard Kat from Down Unda!
This is a good place to be for lots of reasons--good information, reassurance, not to mention lots of laughs!  Check out the "good morning" thread if you want a really good one.

Feel free to vent all you want--we are here to help.

We are Your new "Cyber-family"!!!
Captain Deb

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Four Days Till Surgery
« Reply #91 on: March 12, 2006, 03:28:54 pm »
Hi kat,

there are a few of us from down under. Where are you having your surgery (city etc)



Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

Shawna

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Re: Four Days Till Surgery
« Reply #92 on: March 14, 2006, 05:54:11 pm »
Hi Kat,

Every situation is different, you must be prepared for complications, but hope for the best!   In my case, I came through surgery with flying colors.  I had my AN removed in November (so long ago now) and I'm back to working overtime and tumbling on the floor with my son, who is now 22 months.  It's a lot like childbirth, you forget the details and the "discomfort" and only remember the good parts.   My tumor was about 1.5 cm, hadn't reached the brain yet, and I opted for middle fossa approach surgery.  I am so thrilled with my results, that I wouldn't hesitate to recommend it to someone else in my situation.  I no longer have dizziness or vertigo (yeah!) and in fact I don't suffer from motion sickness as bad as before.  As my doctor said, no equilibrium can sometimes be better than bad equilibrium.  I still have tinnitus and some loss of hearing, and I'm a little wobbly at times, but otherwise I feel great. 

Surgery is a huge undertaking- if you keep a positive attitude, have great doctors and great family and friends to help you through, you will be surprised at how quick you can recover.  Just prep everyone for your "downtime" and don't plan too much for yourself afterward.  Sometimes a stroll around the house is plenty for the first couple of weeks.  Unfamiliar places made me feel a little more "unsteady" on my feet than home.  There's something to be said for familiarity.

Anyway...I am so happy with my decision to have had surgery - I no longer have that "thing" in my head to worry about (so much).  I go back next fall for my follow up MRI, and just hope everything is clean and clear!!  Good luck to you!

Shawna :)
1.0 cm AN - left
Surg: 11/10/2005
Dr. Blevins @ Stanford Univ.

Battyp

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Re: Four Days Till Surgery
« Reply #93 on: March 14, 2006, 06:05:06 pm »
Shawna thanks for sharing such a postivie experience.. ;D  We need more of that around here to give us hope there is life after AN...

katmumof3

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Re: Four Days Till Surgery
« Reply #94 on: March 18, 2006, 11:16:11 pm »
Thankyou cant'n Deb   :D

Larry i'm having my surgery at St.Vincents in Melbourne on Apr. 26th YIKES!

I'm so glad you had a speedy recovery shawna :)  if i do as well i'll be over the moon!
I'm going in for another app. with my specialist this week, I really need to know why i have a 90%chance of losing my hearing. I've seen some conferences from over in America that have a 50% chance of saving hearing in those that have good hearing. Ah well, either way it's gotta come out!  ;D
I'll let you  know how i go :)

take care
2.5cm AN removed 26/4/06 retrosigmoid
awaiting follow up MRI

Mark

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Re: Four Days Till Surgery
« Reply #95 on: March 18, 2006, 11:50:10 pm »
Hi Kat from Australia,

I was just reading your initial post and thought I would ask how many doctors you asked about doing radiosurgery and if they were ones who are actually doing it? If you just asked a surgeon and got that response then I would be concerned with the accuracy of the answer you got. If you also asked a doc who does radiosurgery and got that answer then obviously there is something in the MRI that dictates it's not the right course of action. The typical rule of thumb for treatment by radiosurgery is being less than 3 cm. Mine is the same size as yours at 2 cm which is well within that treatable range. Virtually all AN's start within the IAC and that isn't that long of a structure to create much variance between one 2 cm  and another or a 3 cm vs another and so on. Mine was starting to indent on the cerebellum but was certainly not threatening the brain stem and I doubt that many of that size do. You certainly may still feel that surgery is still the best course of action, but I would encourage you to talk to a radiosurgeon to make sure you really don't have a choice.

Best of luck

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Larry

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Re: Four Days Till Surgery
« Reply #96 on: March 19, 2006, 03:51:39 am »
Kat,

I'm sure you have researched your decision and once made, the rule of thumb is to "just get on with it".

I was born and bred in Melbourne but have been living in Sydney for the last 7 years.

Just note that this forum is a great support for you when you need it

2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

katmumof3

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Re: Four Days Till Surgery
« Reply #97 on: March 24, 2006, 02:36:00 pm »
 Finally had my app. with the surgeon, yay.  I was surprised to get very simple, thorough answers :D

Mark I have only seen 2 Specialists, both are surgeons. Most of the info i had recieved was off here, and most everything i read was confirmed by the specialist.  My tumor is apparently not 2 cm, but 2.5 cm's,  which isn't a lot, but surgery wise it's a big change. The mri shows that the centre of the tumor is filled with fluid, suggesting a growth spurt, but the most important thing, Doc said the radio therapy would not be so effective on the fluid part, beause it's not a solid mass. Pretty much what i had read also, feeling much more relaxed about the whole thing now :)

The only bummer is the size of the tumor means no Middle fossa,  but retro sigmoid, less chance of saving my hearing, ah well, cest la vie.
Only 1 month  till surgery go already!

take care guys
Kat
2.5cm AN removed 26/4/06 retrosigmoid
awaiting follow up MRI

Mark

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Re: Four Days Till Surgery
« Reply #98 on: March 24, 2006, 03:18:04 pm »
Kat,

Certainly I'm not a doctor and wouldn't presume that a radiosurgeon would give you a different answer without seeing the MRI scans. However, I'll still standby my previous suggestion that relying on someone who just does surgery to judge what a treatment option they aren't involved with can or can not do has some risks. An AN with fliud in it such as you are describing is typically referred to as a cystic AN. The issue of radiosurgery effectiveness on such AN's can be found in both the ANA archives and over on the CK support board. At the end of this post I will copy a string from last November where another patient asked that question.

It is paramount that each of us go with what our heart says is best for us and it sounds like like you reached that point with choosing surgery. I certainly am not questioning that but did want to clarify what I would consider erroneous information from your surgeon on a cystic AN

In terms of the surgical approach, for my 2 cm AN I was given about a 20% chance of saving any usable hearing with the retro. That % goes down as the size of the AN goes up , so I would guess that a 2.5 is even lower. From having read this board for several years as well as several studies, there is a fairly common perspective that retro creates more post surgery issues such as Headaches and does not provide the surgeon with as good a view of the facial nerve as the translab. I am curious as to what % chance your surgeon gave you for hearing preservation. If it matches up with my stats and is very low, the question to ask is whether he feels there is any lower risk to the facial nerve and potential for post complications doing the translab instead. There are a ton of folks here who have done one or the other and can voice their pros and cons to you, but that would be a question I would ask.

Anyway, Best wishes to you for a great outcome

Mark


Here are the Cystic AN posts

Patient

I was wondering if one of the doctors could give a brief description of what makes an acoustic neuroma "Cystic" and what complications that creates. Specifically, if a patient has a cystic AN are there any reasons that CK or radiosurgery in general is not an option for them. There seems to be a theme from patients on the ANA support board that some doctors are telling them that radiosurgery is not an option for a cystic AN

Thanks for your thoughts


Dr. Rosenberg
Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.


--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife


Patient 2 in the string
Dr. Rosenberg

I recently had a 2nd MRI and my AN has grown from 1.0 cm to 1.3 cm in 6 months. My neruotologist suggested there was an urgent need to make a decision about treatment because the Tumor had a cyst in the center and he thinks that is why it is growing. The MRI report did not mention the cyst. He also said if I had Radiation treatment that I would never know if this was cancer.

I was scheduled to have Translab. and had to cancel. I have been researching radiosurgery for treatment for my AN. My Neurotologist said I should not have GK or CK for this because it is now cystic. Why has it become cystic and which method would be best to treat it? There has been some discussion on fractionated failures for AN also on some of the forums. Where could I get information on the long term outcomes of radiosurgery on ANs? Also does it make a difference where you have GK or CK? Everyone says you should go where they have done the most.

Dr. Medberry

Yoiiur neurotologist is simply giving you the usual arguments that they give everyone to convince them to have risky surgery. There are occasions when surgery is the best treatment for AN's, but not usually when they are 1.3 cm. I don't know why he says it is cystic since the radiology report does not mention that. Even if there is a low-density area, it could be treated with radiosurgery. We have seen this many times. YOu can be sure that this is not cancer.

THere are real arguments with validity on both sides regarding CK versus GK. Data are not as complete as we would like. The issue is whether fractionated treatment spares hearing. THere is information suggesting that it may, but a final answer is yet to come. At any rate, CK is at least as good, and avoids frame placement, and either treatment avoids the risks of surgery, which are not insignificant. I am overseas but will be back this weekend and if you e-mail me I can send you a presentation comparing various treatment methods.

I personally think you should change doctors since the neurotologist is misleading you. THere are many good neurotologists whho are honest with their patients and honestly tell them reasons why they think surgery is better, and I respect their opinions, although we disagree. I do not have the same respect for practitioners who try to scare people, and the argument that "you won't know if it is cancer" is about the worst abuse in that regard tht I have heard.

Dr. Rosenberg usually monitors this board and hopefully he will also respond, but I answered you because our system for notifying us when there are new messages has recently proved to be imperfect.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center


Dr Rosenberg
I could not agree with Dr. Medbery more. As above, the whole "cystic" issue isn't particularly relevant. There are reasons to consider surgery but that is not one of them. Moreover, sometimes radiologists call them "cystic" when it means that the tissue in the center has a different water content than that at the periphery - but it's not actually a cyst (fluid-filled).

I would stand by my previous answer. It sounds like getting another neurotologist is quite reasonable.


--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife




CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Four Days Till Surgery
« Reply #99 on: March 27, 2006, 06:38:31 am »
My husband Jeff had AN surgery March 9th. He has amazed me with his recovery. He loved just coming home. He is a great guy and things are getting better each day. We have three young daughters that are his cheerleaders through this.
Go somewhere special the day before surgery. We went to the beach. Spend the days leading up to surgery with the ones you love. Prepare a list of your wishes while in the hospital and give them to someone who will advocate for you if needed. Let your feelings out to your loved ones. Have a support person with you at the hospital :). The first few days were foggy for my husband and I was glad to speak up or hunt down a nurse, resident etc. While at the hospital ask, ask, ask, this is not a time to be polite or passive. Set goals but know there may be setbacks. Praise yourself every step, every acomplishment. Seek out positive support from others.
Make sure your support person has a support person they can at least call, they will need it. Also eat somewhere really good, my husband lost 12 pounds while in the hospital. Take care of yourself, physically and mentally.
Judie
 

Hi Judie and welcome to you and Jeff.  I highlighted the most important thing you could have shared with us, regardless if micro-surgery or radio-therapies are performed. Keeping your mind and body in positive spirits really is the key. Easier said than done... absolutely, but with the love and support of family/friends.. and those here on the ANA board are helping me prep for my treatments next week.  I truly am a believer of the "glass being 1/2 full" and your words hold dear to me...  Thanks for sharing and please tell Jeff we are cheering him on for speedy recovery!

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Windsong

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Re: Four Days Till Surgery
« Reply #100 on: April 23, 2006, 08:39:23 pm »
Hi Jake,
I've been browsing here and saw your posts and what made me reply is the comment about so surgeons take a break for lunch ..... and i actually wondered yeah, do they? I mean 8- 10-15 hr surgeries , one has to wonder if they break for a coffee and lunch......

Do they feed the patient during that time too?

Sorry if this is black humour, but sometimes the logistics of treating  these Ans is mind boggling lol... ::)
be well,
windsong

katmumof3

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Re: Four Days Till Surgery
« Reply #101 on: April 24, 2006, 02:22:25 pm »
Well today's the day,  i'm going in with a smile :)  (and hopefully coming out with one ;D)

Strangely i'm really not so nervous, i have a lot of faith in my surgeons.  Yay it's finally going to be over with, and i can start recovering.  I'll try and come on again in a few weeks or so and let you konw how it went.
 Take care guys  :)
2.5cm AN removed 26/4/06 retrosigmoid
awaiting follow up MRI

Gennysmom

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Re: Four Days Till Surgery
« Reply #102 on: April 24, 2006, 05:13:47 pm »
Good luck!!  Please let us know as soon as you can...or have someone sign on as you and let us know how you're doing!!!!  My fingers are crossed for you!!!  Please take care!!!!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

matti

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Re: Four Days Till Surgery
« Reply #103 on: April 24, 2006, 06:28:31 pm »
Katmumof3 - Keeping you in our thoughts and prayers.

The day I went in for surgery, I was also very calm, and was so from the first moment I met my with my surgeons. Luv those guys!!!

Hugs to you and keep us posted

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

ppearl214

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Re: Four Days Till Surgery
« Reply #104 on: April 24, 2006, 06:58:50 pm »
kat,

sending you LOTS of huggles and warm wishes and good thoughts!  You are going to be fine and now, when you read this, you will be a "Postie" (post-treatment) and on the speedy road to recovery! Gawd Speed!

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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