Author Topic: Back from Mayo with a Surgery Date  (Read 2412 times)

alwaysthere

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Back from Mayo with a Surgery Date
« on: May 07, 2009, 07:36:49 pm »
Well, I met with the Doctor's at Mayo. They are sure that I have a tumor, but are not certain what kind. They think that it might be a Meningioma, but are not sure and won't be till they get in there. I asked why they thought it was not an AN and they said because it has a tail on it and is not round like AN's usually are. Anyway, it is still causing problems and will come out on June 25th. I had hoped it would be sooner, but that is when both Dr's can do it. They will be doing a suboccipital. They did mention the chance of headaches afterwards. Has anyone who has had this type of surgery had that problem?

I really felt comfortable with my Dr's and am glad I went up there. I learned more in one day than I have since Jan. Now it's just waiting till surgery date.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

texsooner

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Re: Back from Mayo with a Surgery Date
« Reply #1 on: May 07, 2009, 08:44:31 pm »
Patty,

I had retrosigmoid(suboccipital) type surgery. I had heard also about the potential for headaches with this type of treatment, but I've been pretty much headache free from just a few days after surgery.

It's good to know what your treatment is going to be. I was like you and had to wait for a couple of months to get the 2 doctors lined up for my surgery.

It's also great that you're comfortable with the doctors. You're on the right track.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Kaybo

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Re: Back from Mayo with a Surgery Date
« Reply #2 on: May 07, 2009, 08:55:29 pm »
Patty~
Glad you liked the Dr.'s and are glad that you went there!!  Sounds like everything is shaping up.  Make sure & put your date on the calendar, if you haven't already!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Dismas72

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Re: Back from Mayo with a Surgery Date
« Reply #3 on: May 08, 2009, 04:56:00 am »
 I had Retrosigmoid Sept 26th 2008 at St Mary's Hospital, Mayo clinic,    I hate to tell you this but my headaches have been Monsterous! But over the past Months they have lost strenght and not as powerfull/painfull as in the begining.   I am sure the Doc's told you that everyone is different and flip a coin on if you'll have headache's or not. You learn when they're coming and load up on Advil or Asprin and ride them out, usually 15 to 50 min. and you're ok til the next round.  But hey what to you expect when they take a 2 inch square chunk of bone out of you head and poke around.

Glad to hear you now know when at least, My stay at the hospital was exellent! so feel good about where your going. Everyone was super nice and seemed to really love what they do. I didn't feel like just a cog in the wheel,if you know what I mean.  Many thoughts and prayers will be with you     
2.7cm diagnosed 6/08 removed 9/08 at the Mayo Clinic Rochester MN.
retrosigmoid approach (9hrs)  01/09 follow up, Got it ALL!!!

leapyrtwins

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Re: Back from Mayo with a Surgery Date
« Reply #4 on: May 08, 2009, 07:00:31 am »
Patty -

I'm glad you got some answers @ Mayo and I'm glad you liked your doctors.  I found liking - and trusting - my doctors was a big comfort factor going into surgery.  It didn't hurt post op either  ;)

As with all things AN, everyone has a different experience.  Like, Patrick, I had the retrosigmoid approach and I have no headaches - other than the typical garden-variety ones I had long before surgery.  I'm sorry to hear that Dismas has horrible headaches, but you can never tell what your experience will be until you get there.

Even if the docs aren't sure your tumor is an AN, I think this same theory will apply.

Keep a positive attitude and don't worry about "what ifs".  You'll get through this just fine.

Best,

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

EJTampa

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Re: Back from Mayo with a Surgery Date
« Reply #5 on: May 08, 2009, 08:24:03 am »
Hi Patty,
 
I had retrosigmoid as well and have no headaches.  My doctors told me they believe it is bone dust that gets in and causes the headaches.  They take a few different precautions to minimize the amount of bone dust that gets into the surgical site to try to mitigate the chances of post-surgical headaches.  I'm sure all the reputable places do this as well.
 
As others have stated, there is no guarantee.  I think out of all of us on this site that have had retrosigmoid, only a handful suffer from debilitating headaches post op, so keep the faith and we'll be sure to send prayers your way.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Jim Scott

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Re: Back from Mayo with a Surgery Date
« Reply #6 on: May 08, 2009, 02:04:32 pm »
Hi, Patty ~

Congratulations on your surgery decision!  I'm pleased that you were able to have your anticipated surgery scheduled for next month at the Mayo Clinic.  I underwent 'retrosigmoid approach' (sub occipital) surgery with no ill effects.  No headaches at all, as I recall.  The surgeons use 'sticky' pads around the surgical site and lots of surgical suction to keep the bone dust out.  This is usually successful.  I would question your doctors on their use of bone dust removal techniques.

I hope and will pray that your surgery is uncomplicated and successful and your recovery rapid and complete.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

suboo73

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Re: Back from Mayo with a Surgery Date
« Reply #7 on: May 09, 2009, 05:21:35 am »
Hi Patty, how are you today?
I bet you feel so much better having made your decision for surgery and you are past one of the hardest parts!
Although i have had no treatment yet, remember that the first 3 days after surgery don't count - you will be fine.  ;D
What a great idea from Jim - ask the docs how they minimize the bone dust issue.

Keep busy until the surgery, and enjoy each day!
Sounds like you are in great hands at the Mayo Clinic.

My thoughts and prayers are with you.
Sincerely,
Sue

PS.  I love your sweet Angel pix.  My first pet was a cat.  My second pet was a doggy who lived in 3 different states until the age of 17 1/2+ !  My current doggy is 8 years old.  Pets are so comforting and know when you need some extra love, too.  My current doggy has been there thru 9/11 - when my husband was on the other side of the US - and when my daughter wrecked the car and broke both her legs.  -- We love miss Lili.
suboo73
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pooch

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Re: Back from Mayo with a Surgery Date
« Reply #8 on: June 01, 2009, 06:49:44 pm »
Hi Patty:  I had suboccipital surgery for AN in Jan. 2006...1 cm....lost hearing in left ear, no paralysis...great doctors at Northside Hospital in Atlanta......previous to surgery I never had a headache....post surgery approximately 1 month I had the headaches that would kill you....they totally paralyzed me....it was an experience from hell....I hate to say it...but it was the worst thing I have ever been through...they would last 15-20 min....that's it....but you wanted to die..and they were all day long...I had constant headaches, the pressure was so bad I could hardly keep my eyes open....I was on every kind of medication that is out there....I was taking so much Advil...it was like eating M&Ms constantly....I was under the care of a neurologist who was monitoring my meds trying to find the right one...finally I started taking Cymbalta.....I really don't think it was all the Cymbalta, I think it was time, just time and they started to go away gradually.......I don't know how I went back to work but I did...I had such great support from my co-workers and my husband.....I couldn't let these headaches get the best of me...I tried to carry on as much as I could...someone suggested this book called "Heal Your Headache" the 1-2-3 program by David Buchholz,M.d. and it helped tremendously.....it was the worst pain anyone could experience and the nights were worse.....sharp, sharp cutting knife pains in my head...I wore a baseball cap continuously...felt good on my head....I am much better now....no more headaches..there was light at the end of the tunnel...
Carol (Pooch)
AN surgery 1/11/06
Suboccipital Approach 1 cm
Drs. Javed & Bonsali

ppearl214

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Re: Back from Mayo with a Surgery Date
« Reply #9 on: June 01, 2009, 08:04:27 pm »
Pooch, just a quick hello and welcome to the forums. Know NS Hosp as I've spent a time or 2 in the ER there. Family still on NS of ATL (I'm now in Boston). Again welcome. Phyl

Hi Patty:  I had suboccipital surgery for AN in Jan. 2006...1 cm....lost hearing in left ear, no paralysis...great doctors at Northside Hospital in Atlanta......previous to surgery I never had a headache....post surgery approximately 1 month I had the headaches that would kill you....they totally paralyzed me....it was an experience from hell....I hate to say it...but it was the worst thing I have ever been through...they would last 15-20 min....that's it....but you wanted to die..and they were all day long...I had constant headaches, the pressure was so bad I could hardly keep my eyes open....I was on every kind of medication that is out there....I was taking so much Advil...it was like eating M&Ms constantly....I was under the care of a neurologist who was monitoring my meds trying to find the right one...finally I started taking Cymbalta.....I really don't think it was all the Cymbalta, I think it was time, just time and they started to go away gradually.......I don't know how I went back to work but I did...I had such great support from my co-workers and my husband.....I couldn't let these headaches get the best of me...I tried to carry on as much as I could...someone suggested this book called "Heal Your Headache" the 1-2-3 program by David Buchholz,M.d. and it helped tremendously.....it was the worst pain anyone could experience and the nights were worse.....sharp, sharp cutting knife pains in my head...I wore a baseball cap continuously...felt good on my head....I am much better now....no more headaches..there was light at the end of the tunnel...
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