Author Topic: Thinking of Denise, Phyl and Brendalu...  (Read 6879 times)

tatianne

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Thinking of Denise, Phyl and Brendalu...
« on: February 08, 2008, 11:09:46 am »
all at various appointments and tests today, sending them good energy, strength, courage and prayers...
Please let us know how everything went girls..
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

ppearl214

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #1 on: February 08, 2008, 06:03:20 pm »
T,

that is SOOOOOO sweet of you!  :-*  Thank you.

Ok, for me.... met with ns who is following me on AN and Chiari 1, as well as my hearing test... so, here goes.

As of today, 22 months post cyberknife for my 1cm AN..... my hearing remains as is.... I am low end of "normal" and word recognition was at 92%.  Slight decrease in my low tones, now in my right ear (my AN is left) and bugger... it's due to age, not the AN!   >:(  So, age is catching up to me, but as for the hearing and my AN, it remains at the same as it was at time of my CK treatment.  So, good news there.  Then, Cheeky bloke and I did a little lunch and went to see my neurosurgeon.  We all took a look at the films, the official MRI report and my hearing test. Well, needless to say, she is noting my AN at 8mm x 5mm, just under in size at the time of treatment, but still in margin of error (+/-2mm) for head mri's, but... it has not grown in the past 3 MRI's and remains stable.  Report also shows it as "non-cystic", thus, more good news.  Chairi still there and needs monitoring.... then discussed you all with her and she provided me with some answers to individual questions many of you have shared with me..... Cheeky bloke and I then subway'd home and we are now ready to collapse.

So, all in all.... I'm in track, everything looks great and for me, CK has paid off.  Brigham/Woman's is noting to see me next (including my next hearing test) in one year.

Now, Monday, I meet with the CK team... let's see if everyone is on the same page.

Now, sending wishes to my 2 other co-horts in today dr appt crime... and major huggles that their day was as good as mine... and if not.... I'm SO here for you!  Never forget that.

T, thank you again... and to all of you that were thinking of me/us today.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Brendalu

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #2 on: February 08, 2008, 07:48:49 pm »
I will second that!  Very, very sweet of you.  Thank you.  I had my MRI with contrast.  The radiologist read the thing imediately.  I have an AN on the left side.  It is small and I have a variety of options at this point.  My lesions are more dense, so that ups my monthly MS shot.  I was on a fairly low dosage, so now I'm on a higher one.  I have a lot of gliosis in the left temporal lobe.  That is going to need further investigation.  I was filled up with so much information and notes I can't remember the name of the test I will have in two weeks.  I will be out for it as I was for this MRI, but the new test I think it is called a PET scan shows the vessels, matter, everything in full color.  Don't quote me on what it is called.  I went to a different ENT  and audiologist for my hearing test and have lost a little of my perect left ear hearing.  She said I was still doing very ok for my age.  I hate it when they put it that way.  I saw my PCP this afternoon late and she went over in plain English everything we had already discussed prior and she is going to be with me every step of the way in the decision making process for all of the "problems".
Phyl, congrats, it sounds like your day was pretty great.  Hugs to you.
I got to my home to find out that my grand daughter had passed out again.  She is on all kinds of meds to keep her from doing that.  She was out for 24.5 minutes.  A record for her.  She is in the ER tonight having more tests run on her and waiting to be transported to Texas Children's Hospital.  It has been quite a day.
Now, where is Denise's report for today?  I'm praying she had a good one.

Hugs to all,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

ppearl214

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #3 on: February 08, 2008, 08:59:59 pm »
*runs in and gives Brenda a MAJOR MASSIVE HUGGLE*  :-*  :-*  :-*

Ok, I've had a PET done (pancreas issue)... ok, not sure for this, but may inject you 1 hr prior to scan with  radio-OMG-make-me-glow-to-kingdom-come and then, 1 hr post injection, take the scan.... PET scan are VERY precise and they hone in on everything. Sounds, to me, like a good move.  Again, unsure what their exact plan for you but no worries... PETs are nothing compared to things you and I have already endured. 

I'm so so sorry this all is going on.... plu-eeeese keep us updated on your grandaughter... and you..... I wish I could do something to help.

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

Denisex2boys

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #4 on: February 08, 2008, 09:39:39 pm »
 ???

Thanks Tatianne for the well wishes.

I had my "AHA" moment ...... Dr. Lownie met with both myself and Dan and was EXCELLENT!  He spent well over an hour with us and explained everything wonderfully.  He probably would have spent the 'day' talking with us had I wanted.

I have decided to go ahead with surgery ----- OMG!  I am panicked yet feel a strange sense of relief ..... I do not yet know the date but he will be scheduling me for all the pre-admit stuff within the next couple of weeks.  He reviewed the initial MRI that was without contrast from June '07 (the one that diagnosed the 1.5 cm buggar) - he then reviewed my most recent MRI that was done with contrast on Jan. 16 '08 - - he said that there was not 'significant' growth but that there was growth.  He also was quite adamant the he cannot conclusively say + or - a few mm's as no two scans are never done exactly the same way and positioning may be a bit off - but that indeed there was some growth -

He explained that, of course, the decision was up to me - as it is with all of us unless it is an initial HUGE tumor that needs to be addressed immediately.  He concluded by the audiogists report that the hearing loss is profound in the left ear (I cannot remember the exact numbers he gave me).

He asked if I had any new conditions from the AN and I said no but that the numbness and tingling on the left seems to come and go more often ..... (like that feeling when novacan starts wearing off at the dentist) he then explained that to him this was significant and that he did see on the MRI that the 5th cranial nerve now has a slight 'bend' to it - and that is what is causing this sensation.  He did some balance and coordination tests and I passed all with 'flying colors'!  He also poked at me with a pin (he was gentle) and I could not really feel a difference from one side to the other (today anyway) - so that was good!

What a decison to have to make - - but I have had 5 months to mull this all over - and he did say that it would need to come out eventually it was just when?  Both Dr. Parnes and Lownie said that the smaller a tumor the less complicated it can be to get out .... another thing he mentioned that I hadn't read (see I am a newbie at this) is the facial nerve ..... I expressed my utmost concern about the facial nerve and he so eloquently explained that .....  "let's just say you have had this tumor for 5-6 years, the facial nerve has adapted to this and 'stretched' right along with the tumor - so by the facial nerve adapting to the neuroma and stretching and then having surgery - the facial nerve is basically out of synch as it has been so used to this entity being there .... and he is fixing in a matter of hours something that has been happening for years ....... and that smaller the tumor the better 'chance' the facial nerve has to re-adjust".  "Of course, there are never any guarantees" he also said.

LHSC is a huge University Hospital and he said he does about 20-30 AN surgeries a year - it may not sound like a lot - but the populas in this area is not all that great. 

I just figured the time to do it is now ---- it is almost on the verge of becoming a 2cm tumor and I would rather deal with it on the smaller side of 1.93 (give or take) - I know it is not a quick fix and the conditions associated with this may or may not improve - but when he said the coming and going of the numbness is because of the 'indent' starting at the 5th cranial - why wait? .... only to go for another MRI in 6 months and keep going through this same process - especially knowing in the back of my mind that it will need to be dealt with at some point ....... ???????

So it was a good/not so good appointment - but I do feel confident with my (our) decision.

SOOOOO please, what was you 'AHA' moment and do you all think this is the time for me ?????????

Thanks for all your thoughts and well wishes!

P.S.  I also hinted about my mortality (which I am sure all crossed out minds) - and he said no one has died from this surgery at LHSC .....that made me feel good too :)

P.P.S.  I also mentioned my 8 and 4 year old boys and suggested that I would prefer surgery while they are still in school so their lives are not disrupted too much - - so well see!
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

Glenda

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #5 on: February 08, 2008, 10:43:54 pm »
Hi girls!

Wow what a day you all have had!

Phyl Congrats on the Great news you received today!! I know you felt a big relief hearing that news............. :)

Brenda, After already having an AN, I am so sorry that you have another but am glad that it is small! I know you were concerned after finding the older MRI's that it might have progressed more so I think it's very good news that it is still small.  I am so very sorry to hear about your granddaughter.   :'( You are both in my prayers and please keep us updated!  Many hugs to you and God Bless!!

Denise, It sounds like you have made the right decision for you!  You seem very comfortable with your decision and have thought things through carefully.  Your doctor sounds Great and very caring!  I believe that it is very important to feel comfortable with your doctor.  I am so new at this myself, haven't even seen my surgeon yet as having just been diagnosed but I have read to much on this forum and am so grateful to you all.  I hope I have a doctor as compassionate as yours.  I wish you the very best and I pray your surgery will be very successful!!  Please keep us informed and let us know the date of your surgery so I can add you to my prayer calendar.

Big Hugs to You ALL as well as many thanks for sharing this part of your life!!

P.S.  I really hate that I had to get an AN to get to join this "club"  ::) but I really feel so blessed to have met so many special people here!!  You are all a blessing - Be Blessed!!!
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

sgerrard

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #6 on: February 08, 2008, 11:40:34 pm »
I can't pass up this opportunity for a triple response - you gotta be efficient with these posts, you know.

Phyl, our dear mother hen, it is great to hear that your results are so positive. On my original hearing tests, the audiologist kindly said the slight hearing loss in my right ear (non AN side) was just that of a man 10 years older than me, no big deal. Isn't it lovely to hear things like that.

Denise, you ask if we think this is the time for you, but it is obvious to me that you do, which is the thing that really matters. You have been at it long enough, you know the score, and if you got that "strange sense of relief", it means your mind has reached a clear and sensible decision. You might as well as accept it, since your mind already has. I think your doctor's explanation of what is going on with the facial nerve is excellent, it is not so common to have such a frank discussion. The nerve will undergo some trauma at the sudden change, but he is making you aware of that, and is clearly aware of it as well, which bodes well for the outcome.

Brenda, all I can offer you is support for your situation. I have no idea what "a lot of gliosis in the left temporal lobe" means, but I am guessing it is better not to have it. It sounds like the left side AN is a small one, anyway, so you don't have to do anything right away. Give it a little zap with CK if it gets to be a problem, and keep your "age appropriate" hearing as long as possible. Good luck with the PET scan, maybe you will get some interesting full color pictures from it.

Best wishes to all of you,

Steve


8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #7 on: February 09, 2008, 06:53:49 am »
Thanks Glenda and Steve.... very sweet of you to think of me/us and truly appreciated!   :-*  BTW, Glenda.... my "yellow brick road" is, as you can see, going well and staying out of the forest..... ;)

Denise, I am SO proud of you!  It certainly does sound like you have come to terms and are covering all bases.  I know you've put a lot of heart and soul into your research and it sounds like you went into your appt as the best, well-informed patient you can be... and for that, sounds like you are on the straight and narrow to obtaining your wellness.  I'm cheering you on BIG time and sending the infamous "huggles".... now that the decision has been made, take comfort in it and we're here to help you get through it! :)

Brenda..... I have to ask, as well as Steve... is any form of radiation/radiosurgery in your thoughts about handling this new growth?  Maybe too soon to answer that but could be a thought.....regardless, you KNOW I send MASSIVE huggles..... and the inbox is open if need be. Please hang tough.....

Thanks again all... and Denise/Brenda.... I'm sending wishes to you both!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Brendalu

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #8 on: February 09, 2008, 07:59:07 am »
As we said in NY for some many years "You guys" are all so wonderful!  No since I've been in Texas for well over half my life, I wouldn't know what to do without y'all. 
I am investigating radiation.  It will be and is my top priority to investigate.  Phyl, I'm glad someone had heard of or has had a PET scan.  Sounds like it is sooooooooo much fun.  I always wanted to glow!
The grand daughter is as fiesty as ever and is hollering to get out, she said something about things to do and places to go.  She has a bunch of tests scheduled for today and if she doesn't have another episode lasting more than five minutes today she will be allowed to come home.  She is positive it is her heart instead of her brain.  I think when someone has such strong feelings about something the doctors need to listen, even though she is only fourteen.
Densie, it sounds like you have made the right decision for you and that is huge.  Y'all are in my thoughts and prayers.

Thanks all.  Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

ppearl214

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #9 on: February 09, 2008, 08:57:18 am »
naw, Brenda... "youse guys" rawk and thrilled to hear about your granddaughter.  "yaw'll" hang tough... and sending huggles, as always! :)

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

Denisex2boys

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #10 on: February 11, 2008, 09:42:31 pm »
NEW kind of panic now ....... I am still relieved that I have opted to have this AN removed - now I am just awaiting the 'call' - which I guess could come at any time ..... is it normal to suddenly see your 'mortality' - did you 'second guess' after making the 'decision'????

Watch and wait is not an option for me - I did and there has already been growth in the 6 months since initial diagnosis :(  - and is it not true ..... "the smaller the tumor" the less complications - -and better chance of facial function - (this in particular scares the crap out of me) - I would like to think that I am not that VAIN that I would not learn to cope - but I also do not want all my energy thinking about all the negatives that could happen - I need to go into this feeling really optimistic and positive ..... so I could really use some reassurance here and need to hear of some successful outcomes!  I have pretty much decided on translab. - would you all agree that this is the better route to go for facial preservation?  (I know there are never any guarantee's) - my hearing is really not considered useful on the AN side - but I can't imagine losing that either .......

YIKS!  I just wish there was something concrete scheduled and I was on the other side of this now - post-op ............

Sorry to be such a worry-wart - I really need to be handheld thru this .....
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

sgerrard

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #11 on: February 11, 2008, 10:13:47 pm »
Denise,

If I were going to do surgery, I would pick trans-lab. It seems to me it has the lowest side effects in the facial nerve and headache categories. It does mean giving up the hearing on that side, but if it is going anyway, there is not much you can do about it. I have met a number of people with SSD who get along just fine and do everything. There are quite a few people on this forum who have had good results with trans-lab. I think everyone second guesses a little bit after making their decision, it seems like a natural thing to do. I suspect you will find you become more settled with the decision after a little time goes by.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #12 on: February 11, 2008, 10:37:11 pm »
Denise -

I didn't have any thoughts of mortality prior to my surgery because I pretty much knew my AN was noncancerous.  Statistically the odds were in my favor in that area, so I had no thoughts of not making it through the procedure or not living a long life once the AN was removed.

I did second guess myself for a short time after I made my decision; but part of my decision involved wanting the AN out of my head - so surgery was my only logical choice.  Post op I wondered if I would regret my choice, but my AN had grown so much between my MRI and my surgery that my docs told me that GK would have turned out to be a poor choice for me.  So in the end my choice was validated for me; that, coupled with my good outcome, has caused me to never regret my decision.

IMO if you are comfortable that you've taken the time to research your decision and you have confidence in your doctor(s), you have no reason to doubt yourself.  You are the only one who can decide what is personally best for you.  If you are confident that you have done that, relax.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #13 on: February 12, 2008, 06:34:15 am »
Jan, thank you.  What we have always noted here is what you wrote... and to never look back in heinsight of any decision that is made, as the decision was made for personal reasons solely onto ones self with the best info that was available at the time.

Denise, have faith in your gut... in your situation... know you are doing what is best for you and your situation.  I send my infamous huggles... not knowing if they help at all, but I'm cheering you on..... please hang in there.

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

Kate B

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Re: Thinking of Denise, Phyl and Brendalu...
« Reply #14 on: February 12, 2008, 06:40:46 am »
Denise,

It sounds like your decision matches your circumstances. That is the best any of can do!

Things to remember that are in your favor:

Regarding tumor size and facial nerve "?": Statistically, those under 2 cm fare extremely well

Regarding mortality: If it were 1960, I'd be really worried. The probability these days is less than 1%.That being said, I remember thinking about it too. All the "what ifs" run through your head..especially as a mom. The day of my surgery was bright and sunny in LA.  I remember being rolled down the hallway to the operating room area and the sun was streaming through the glass. I felt a sense of calm about the surgery. In a way, that was a defining moment. My guess is that there will be a moment where you get a sense of calm. Be on the lookout for it:-)

You mention loss of hearing in your AN ear?  Do you know if it is less than 50% and less than 50 decibals?
The better your hearing going into surgery, the better the chances of having hearing afterword.

Also, If you have time, read the thread on expectations after surgery.

Kindest regards,
Kate
« Last Edit: February 12, 2008, 07:03:34 am by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

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