Author Topic: Released from care 5 yrs after surgery  (Read 10240 times)

Gloriann

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Released from care 5 yrs after surgery
« on: May 13, 2008, 08:57:15 am »
The neurosurgeon I was seeing following my acoustic neuroma surgery told me 5 years after the surgery that I did not have to come back any more or have any more MRI's done. I had had 3 MRI's (2 yrs apart) after the surgery because a tiny piece of the tumor had been left on my facial nerve.

I got a copy of the MRI report at the hospital after I came home and was shocked to read that there was a recurrent tumor. I called the doctor's office and his nurse told me they had received that report in the mail after I was there, but that the doctor did not agree with it. It made me mad that I was not informed of this.

After reading a lot of these posts here on this forum, I have not seen one that said a doctor released them. It seems like most doctors have you come back for MRI''s the rest of your life, even if they say they removed all of the tumor.



« Last Edit: July 26, 2008, 07:51:04 am by Gloriann »
4 cm AN removed 2001- Memphis, Tn by
Dr Gale Gardner and Dr Jon Robertson

7/12 nerve graft 2002- Dr Jon Robertson

gold weight 2001 Memphis, a few days after tumor surgery- Dr James Fleming

Gamma Knife done December 29, 2010 at LSU Shreveport

lori67

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Re: Released from care 5 yrs after surgery
« Reply #1 on: May 13, 2008, 09:05:57 am »
Gloriann -

I had my one year follow up MRI and was told that I do not have to go back for another until I hit the 5 year post-op mark.  It seems like some surgeons want them done every year for a while, and others don't want as many.  It's amazing how much variation there is from one doctor to another.

If it's something that concerns you, I'd ask him about it.  Maybe he is basing his decision on the fact that once the AN is removed surgically, after a certain point, you're really at no greater risk than the general population for developing another one.  (except in cases of NF2).

Or maybe it's a TN doctor thing - I'm in Nashville and my doctor seems to be rather confident that I don't need aggressive follow up.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

lori67

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Re: Released from care 5 yrs after surgery
« Reply #2 on: May 13, 2008, 10:02:17 am »
I agree!  I'd be mad too!  He should have told you about it, even if he disagreed with it!  It's your head!!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kathleen_Mc

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Re: Released from care 5 yrs after surgery
« Reply #3 on: May 16, 2008, 02:51:43 am »
I did not have an MRI until 7-8 years post-op and the regrowth was there then. My orginal surgeon didn't feel the need to continue to follow up....it was during investigation for another issue they did the MRI at that point. I would have hope now a days there was a standard for when to recheck and how often.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Kaybo

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Re: Released from care 5 yrs after surgery
« Reply #4 on: May 16, 2008, 06:23:27 am »
Gloriann~
I had my surgery 12 years ago.  I went for follow up MRI's at certain month markers the first year and then yearly for the first 5 years.  After that, I was released from his care (he actually moved from Houston & I didn't even know where until I goggled it and then found out on here!).  I have a wonderful PCP who has allowed me to get an MRI since then and I think will order one whenever I want - for my peace of mind.  I just want to get through this current medical problem first!!   :D  I also have spoken to my girlies' pediatrician & I can get MRI's for them anytime I want too.  You could always just ask you regular Dr. what he thinks...

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!

Gloriann

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Re: Released from care 5 yrs after surgery
« Reply #5 on: May 21, 2008, 03:55:23 pm »
Kathleen

How was your second surgery compared to the first one?
4 cm AN removed 2001- Memphis, Tn by
Dr Gale Gardner and Dr Jon Robertson

7/12 nerve graft 2002- Dr Jon Robertson

gold weight 2001 Memphis, a few days after tumor surgery- Dr James Fleming

Gamma Knife done December 29, 2010 at LSU Shreveport

Jim Scott

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Re: Released from care 5 yrs after surgery
« Reply #6 on: May 22, 2008, 02:01:26 pm »
Gloriann:

Congratulations on a successful surgery and an AN-free 5 years.  :)

The reality is that every AN 'case' (patient) is slightly different, often in multiple ways.  Acoustic Neuromas grow at differing speeds in differing directions, making the effects of the tumor a bit (all together now) different for each patient.  Doctors differ, too.  Some are fairly casual once they believe they 'got it all' and the patient shows no sign of re-growth - or, as in your case,  any possibility of re-growth can be explained away.  Some doctors are much more conservative.  Mine is.  I've had multiple MRI scans over the past two years, all for valid reasons.  Following my debulking surgery, I had an MRI to determine the size of the remaining AN.  I had another MRI three months later to use as a guide (with an accompanying CT scan) for my planned FSR treatments.  I had a follow-up MRI six months later and another six months after that.  I have another, semi-annual MRI scheduled for June 30th.  This is to 'track' my AN and make sure it's shrinking and dying.  My neurosurgeon will likely allow me to go to a schedule of annual MRI scans if this one looks good.  Eventually, I would go on a five-year plan, but, pragmatically, I may not be around quite that long (but you never know). 

In any case, an AN patient being discharged after 5 years is a bit unusual but not unheard of.  If this concerns you, either ask your doctor if he'll order an MRI for you once every five years (why not?) or, consider finding another doctor.     

Jim
« Last Edit: June 11, 2008, 11:35:52 am by Jim Scott »
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.

Captain Deb

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Re: Released from care 5 yrs after surgery
« Reply #7 on: May 31, 2008, 04:09:16 pm »
I for one, plan on having MRI's for the rest of my life. At least every 3 or 4 years.  There are too may folks on this site who have had recurrent tumors to make me feel comfortable not doing this.

Capt 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

Gloriann

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Re: Released from care 5 yrs after surgery
« Reply #8 on: June 02, 2008, 09:37:35 am »
It has now been 7 years since my AN surgery. When the different opinions came up 2 years ago between one of the 2 surgeons and the radiologist I did change doctors. Another MRI was done this year which shows the tumor has grown since the last MRI was done 2 years ago.
My point is, that the surgeon should never have released me, especially after he read what the radiologist had to say, but the surgeon told me he knew more than any radiologist.
I found out what the report said one day when I just happened to be in the hospital and thought about getting it. My doctor never informed me of what it said and because he did not agree with it he thought I did not need to know. This is what made me angry.
 
4 cm AN removed 2001- Memphis, Tn by
Dr Gale Gardner and Dr Jon Robertson

7/12 nerve graft 2002- Dr Jon Robertson

gold weight 2001 Memphis, a few days after tumor surgery- Dr James Fleming

Gamma Knife done December 29, 2010 at LSU Shreveport

cmp

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Re: Released from care 5 yrs after surgery
« Reply #9 on: June 02, 2008, 07:09:13 pm »
I'm surprised the doctor released you after so little followup if he knew a piece of the tumor had intentionally been left behind! Even after my surgery way back in '88, the doctors in the various states I bounced around to followed me on and off for almost 10 years, and in my case a total resection had been accomplished (ie apparently the regrowth developed from mere cells).

My current neurosurgeon has said his typical plan is to do 2 MRIs the first year after surgery, then (if there is no tumor) at doubling times: ie 2, 4, 8, 16 year intervals. If there IS a tumor, he has them done yearly.

5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Debbi

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Re: Released from care 5 yrs after surgery
« Reply #10 on: June 09, 2008, 08:36:06 am »
Gloriann-

I was horrified when I read your post!!!  And so glad that you changed doctors. 

I am in the same camp (or ship, as it were) as Capn Deb - I will want to be monitored for the rest of my life, just for my own peace of mind.  I am seeing my nueursorgeon for the first MRI in Sept and plan to talk with him then about long term follow up.  Even if he doesn't do it, I'll do as Kay has done and get it ordered from my PC doc. 

I started getting copies of all my own radiology reports when I had my first irregular Mammogram about 18 years ago.  I read every report, and I call my docs if I have questions.  At the end of the day, it's my body and my health and I feel a strong need to understand all the tests as thoroughly as a "layman" can (sound familiar, Jan? ;))

Keep us posted, Gloriann, okay?

Debbi - steaming in NJ
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Socks001

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Re: Released from care 5 yrs after surgery
« Reply #11 on: June 17, 2008, 07:09:53 am »
I had an MRI at 2 years and then there will be another at 7 years and assuming it is clear then I get the "all clear"...
I actually saw the films and there is nothing there...
Head opened in January 2003
Completely deaf on AN side... lots of headaches and dodgy balance

marg

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Re: Released from care 5 yrs after surgery
« Reply #12 on: June 20, 2008, 11:01:28 pm »
Well,  I just last month passed my first anniversary  of my surgery date and found out today I will have a follow up MRI next week and if everything is fine ...once a year after that.  Didn't know I would be having MRI's  yearly.... and then found this subject today and it made me realize that it's not over yet... and may never be over.  Of course I am nervous about it..... don't want them to find anything... left of the tumor - or a new one.  I already lost my hearing, have LOUD tinnitus all  the time and some facial paralysis..... I don't want to have a repeat performance  to see what else can happen in a surgery..... sorry, don't mean to sound negative but having a tough night. Many hard things have been happening in my family lately.  My mom fell and broke her neck in 2 places a few weeks ago (no paralysis but slow recovery), ....at the same time my dad developed severe dimentia and we had to put him in assisted living .......one of my cousins was just diagnosed with stage 4 brain cancer (he has 3 tumors) , and today my great niece - a young mother with a 2 year old and a 3 month old was diagnosed with agressive leukemia.  Even her baby (and maybe the 2 year old) will have to be tested for leukemia.  I am just overwhelmed  with the bad things in this world right now..... especially the ones that are life changing for my famiily members.  Lately so many hard things have happened that it is hard to hope for good news - I would really appreciate your prayers for my family.  I feel like I am on empty right now...
Thanks,
marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

Mickey

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Re: Released from care 5 yrs after surgery
« Reply #13 on: June 20, 2008, 11:07:46 pm »
You have my prayers Marg! I hope your situation improves eventually. May God Bless, Mickey

Kaybo

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Re: Released from care 5 yrs after surgery
« Reply #14 on: June 21, 2008, 07:24:22 am »
Marg~

Anyone would be overwheomed with just one of those things...that is, my friend, a LOT on your plate!  I am so sorry - it seems you & your family are under attack right now.  I will certainly keep YOU and all those mentioned in my prayers.  Take care of yourself so that you will be strong & healthy for all the others!

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!