Author Topic: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER  (Read 12916 times)

v357139

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QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« on: February 14, 2013, 12:51:36 pm »
FOR THOSE WHO HAD TUMOR AT LEAST 2.5CM OR LARGER.  Did you get:

1) No long term post op facial problems, 2) All the tumor removed, 3) At least some (more than 10%)  chance of keeping hearing.  I am asking because most docs are telling me there is none or very low chance of keeping hearing with my 2.7cm.  The one doctor who gives a little more chance, seems more oriented toward leaving some in, and following up with Gamma Knife if needed, which is not my preference.

Please let me know if you got all three or not.  Even if you had translab, would be good to hear what your doctor said.  Maybe I am expecting too much?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

LakeErie

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #1 on: February 14, 2013, 01:12:57 pm »
My tumor was described as almost 5 cm. 1) I was House-Brackman scale 2 after the operation and back to grade 1 , normal movement,  in 10 days. There is tumor remnant on both my facial nerve and brainstem. 3) I am SSD and was told before the surgery that I would be deaf afterwards.
I had no problem with a sub-total removal and, in fact, requested it if there was any adhesion of the tumor to any surrounding neurological or vascular structures. I preferred preserving cranial nerve function to risking that function with a total removal. My surgeon concurred with that view.  I felt it was better to have a sub-total removal and risk regrowth of the tumor than to risk facial paralysis and the attendant eye problems associated with facial nerve dysfunction.
I do have some remaining numbness around my lower face and my eye does not water as much as the other one, but my eye is fine otherwise. I need no drops or gel. If I get  a gust of wind in the face, my left eye waters but not the right one. My right eye does produce enough tears to lubricate.
As to the numbness, I had that as a symptom before diagnosis.
Being SSD does not bother me too much. It is difficult to locate sounds and difficult to hear when there are competing background noises, but I am adjusting to it and do not consider it a problem.
Lastly, I should add that my 1 year anniversary MRI showed "stable residual tumor size." So, so far so good. Not all residual tumors regrow, and no one can predict when the ones that do regrow will do so. I will have Gamma Knife if there ever is regrowth. Good luck
« Last Edit: February 14, 2013, 05:57:29 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Jim Scott

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #2 on: February 14, 2013, 02:48:20 pm »
Hi ~

I was diagnosed with a 4.5 cm AN that was intruding into my brain stem and surgery was the only option.  The quicker, the better, according to my neurosurgeon.  I had procrastinated on seeing a doctor about my unilateral hearing loss for so long that by the time of my diagnosis, I was already effectively SSD and had adjusted to it fairly well.  My chief concern was facial nerve damage and my neurosurgeon, with 3 decades of AN surgery experience, presented me with a plan to employ the Retrosigmoid surgical approach to 'debulk' the AN, essentially thinning it to the point where it would collapse on itself and be amenable to the radiation (FSR) he had planned as a follow-up to the surgery.  He would use the Retrosigmoid approach because it (a) gave him the best view of my AN and, (b) it gave me a slight chance to retain some hearing.

Long story short: the 9-hour debulking surgery was very successful.  The tumor was reduced to approximately 2.5 cm with no facial nerve damage and no complications.  My pre-op AN symptoms (mainly, loss of balance) were immediately alleviated and I was home within 5 days after 'passing' a fairly rigorous balance test given by the hospital PT nurse.  After approximately a week of heavy resting, I was walking 2 miles per day (with my wife for company) and two weeks after the day of my surgery I was given doctor's permission to resume driving.  Unfortunately, although the neurosurgeon had high hopes, I did not regain any hearing and remain SSD.  Otherwise, he said that I was in his 'top 5%' of AN patients in terms of having a successful recovery. He was both surprised and pleased with the speed of my recovery and of course, so was I.

Three months later, as planned, I underwent 26 FSR sessions that lasted about 20 minutes apiece.  I received a total of 27Gy of precisely targeted radiation intended to destroy the remaining tumor's DNA and render it unable to reproduce. The sessions were tedious but I suffered no side effects and drove myself to and from the facility, a 60-mile round trip.  Subsequent MRI scans at six months, a year and two years following the surgery and radiation indicated no growth, signs of necrosis (tumor cell death) and the beginnings of tumor shrinkage.  In the 6½ years since my surgery, I have fully recovered and my pre-op symptoms have never returned.  The procedures did cause me to lose some stamina and my left eye (the 'AN side') is slightly 'drier' than the right but blinking usually alleviates any discomfort and eye drops are not needed. That's about it.  My smile is symmetrical.  I consider myself to have enjoyed a splendid surgical/radiation outcome and for that I give God, my talented neurosurgeon (now retired) and my wife's stalwart support the credit.  It must be noted that while AN patient's experiences, like mine, are informative, one patient's good outcome ( or one not-so-good outcome) does not constitute a template for every other AN patient.  We are unique individuals and every AN case is going to be a bit different, as will doctor's approaches.  However, I hope my account is of some help to you  as you seek as much information as possible, which is always a good idea. 

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.

kmr1969

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #3 on: February 14, 2013, 06:27:06 pm »
My tumor was 2.7 cm per the MRI, but 3.0 cm per the biopsy report.

No doctors gave me any chance of hearing preservation with surgery.

The doctors did leave some microscopic tumor fragments alone to minimize the chance for nerve damage.

I'm 3 months post surgery and facial function is pretty normal with my smile just a little bit off on the tumor side, but much improved since just after surgery,  My right eye does blink a little slower than the left eye and I use drops during the day, but no gel at night.

I was pretty alarmed to learn I had a medium+ sized tumor, but it seems that as the doctors get more experienced even people with larger sized tumors are seeing better results.

If you go the surgery route, I think you will have to go into knowing that you will be SSD and just discuss with your doctors how you want them to deal with tumor if it decides to be difficult.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

Tod

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #4 on: February 14, 2013, 08:04:02 pm »
This is essentially what I posted in another topic.

I had a short time between initial diagnosis, MRI, more consults, and finally surgery. Largish, golf ball-sized meningioma in left CPA, choking off the brain stem and extending into the ear canal. Was told I had three to six months to deal with this before really bad things start to happen. On February 12th we began what was to be a 14-18 hour surgery. Location, stickiness, the amount of tumor attached to the artery, and the dogged determination of the surgical team, surgery extended to 32 hours. I spent six days being intubated and a total of 13 days in ICU. The rehab team wanted me to stay in hospital at least two more weeks but my surgeons said I could go home, and I did. I then spent three months at home recovering until I go back to work. They estimated they had gotten about 90% or so of the tumor,

The left side of my face was paralyzed but had returned to at least 90% in 90 days. The left vocal fold was paralyzed and trauma to the 12th nerve also left me with swallowing difficulties. Multiple laryngoplasties were performed over a year to give me a voice. At the first anniversary of my surgery we decided my voice was finally starting to recover.

That first year I was still "sick" but I didn't realize how much so until the second year and how much better I was doing physically.

I had MRIs every six months. In fact, I have had so many in the last three years that I have lost count. I think my next will 13 or 14. Anyhow, in October of 2011 we determined that the tumor was indeed growing, and growing more rapidly than was good and in January of 2012 I went through six weeks of radiation at the same hospital. While others have no issues with FSR, I did and it wasn't awful, but it simply wasn't pleasant.

Next MRI is in May, probably won't know anything substantive than, other than the fact the tumor is swelling.

I still have some swallowing problems, and my speech is not fully recovered. It is good enough for most things, but sometimes public-speaking is a challenge - and I do a pretty fair amount of that. The difficulties I have are similar to spasmodic dysphonia in that stressful situations cause the left vocal fold to become somewhat unresponsive. The swallowing problems also play a role since it can be next to impossible at times to clear my throat. There are few other speech issues, but these are the substantive ones. Even with them, I do pretty darn well.

I still have hemifacial spasms. Sometimes it is uncomfortable - more annoying than the tinnitus. In the second year I had noticed that my left nostril had partially collapsed. Now it is noticeable to me, and perhaps to professionals, that my entire nose is angled a bit left. I suspect that once the swelling of the tumor starts to dissipate, I may have something done about this, but until then I see no reason to interfere.

I had already lost most of my hearing and it was all gone after surgery.

I think you have to be careful about putting too much credence in comparisons of tumor size and outcome. Location of the tumor, the quality of its blood supply, your overall fitness and health, and a number of other factors can make a huge difference. Jim Scott has shared his experience with a tumor of similar size to mine, but he has had a remarkably different experience. Further, there people on this forum who had surgery for tiny little tumors and suffer devastating outcomes, such as debilitating headaches. Every tumor, every patient is different.

Good luck with your decision.

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

v357139

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #5 on: February 14, 2013, 08:33:26 pm »
All who replied so far, thanks so much for sharing.  Alot of good points.  One things seems apparent - the larger the tumor, the less chance of keeping hearing.  I think the chances of keeping hearing are small even in smaller tumors, and really small or nil in larger tumors.  Does this sound right?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

mk

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #6 on: February 14, 2013, 08:39:58 pm »
Unfortunately your doctors are probably right. Even though it is hard to tell exactly, since many of us had lost hearing already before surgery, I would say that we have seen very few people here on the forum who preserved hearing after retrosigmoid for a tumor larger than 2.5 cm.

Regarding the facial nerve, I was told by some doctors that the risk for paralysis is generally 10% per cm of tumor. i.e. 3 cm would carry a 30% chance of paralysis. I would tend to disagree with this though, I have observed that experienced neurosurgeons have much lower percentages.

It is common pratice to leave a tiny amount that is adhered to the facial nerve to protect it. This is different than the debulking surgery that Jim mentioned, where the tumor is debulked intentionally to cut the blood supply off and then radiated.

In my specific case, I had retrosigmoid for a 3.5 cm tumor that had been previously radiated. I had already lost hearing. My facial function is intact (I only had very slight, unoticeable weakness for the first couple of weeks post-op). My surgeon did leave a very tiny "rind" about 2-3 mm long, surrounding the facial nerve.

Marianna

 
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

resox84

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #7 on: January 17, 2014, 07:45:58 pm »
Thought it appropriate to ask the question in this thread instead of starting a new one.

Did anyone with a large tumor have their doctor tell them that to anticipate awakening from surgery with a facial paralysis? I understand that this was said to me by my surgical team to help me mentally prepare for a worst-case scenario. Everything I've read about my surgical team has been all great things, but I wanted to see if this was common practice amongst others with a larger tumor (mine was 3.1cm mid-November).

Jim Scott

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #8 on: January 18, 2014, 12:15:46 pm »
Thought it appropriate to ask the question in this thread instead of starting a new one.

Did anyone with a large tumor have their doctor tell them that to anticipate awakening from surgery with a facial paralysis? I understand that this was said to me by my surgical team to help me mentally prepare for a worst-case scenario. Everything I've read about my surgical team has been all great things, but I wanted to see if this was common practice amongst others with a larger tumor (mine was 3.1cm mid-November).

In 2006 I was diagnosed with a large (4.5 cm) AN and told my neurosurgeon that avoiding facial paralysis was a primary concern for me.  In response, he proposed a two-stage approach.  First, he would 'de-bulk' the AN down to a size amenable to radiation (2.5 cm).  In the process, he would sever it's blood supply.  This went splendidly.  I came out of the anesthesia with my symptoms gone and no facial paralysis. I was home from the hospital within 5 days of entering and,  all things considered, recovered fairly quickly.

Ninety days later, as planned, I underwent 26 FSR treatments intended to destroy the remaining tumor's DNA and thus it's ability to re-grow.  The sessions were somewhat tedious but otherwise uneventful.  My last MRI (2008) showed the beginnings of necrosis and tumor shrinkage.  My neurosurgeon discharged me at that point and suggested I have an MRI scan if I thought my AN symptoms were returning.  They haven't. 

Although I believe your doctor is being forthright with you, you should understand that facial paralysis is not necessarily inevitable with AN surgery.  Many of our members have undergone the surgery with no or very minor facial nerve involvement causing paralysis.  Today, nerve monitoring is pretty much routine with AN surgery, which helps the doctor know if and when he is disturbing the facial nerve.  That can help cut down on post-op facial paralysis.  However, sometimes facial paralysis happens despite the doctor's best efforts to avoid it.  Fortunately, it is often temporary or correctable via nerve transplants and/or facial therapy, depending on the situation. 

I wish you a successful and complication-free AN surgery experience but should facial nerve issues present post-op, we're here to  offer our support as fellow AN patients who can understand the emotional stresses one may be experiencing in that situation.   Hopefully, you'll do just fine.  :)

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.

leapyrtwins

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #9 on: January 18, 2014, 02:16:16 pm »
Am surprised I didn't answer this post a year ago; but guess I was AWOL from the Forum @ that time.

My surgery (retrosig) was in May 2007 for a 3+ cm AN.  I have no facial "issues" and my tumor was removed 100%.  I am SSD - my AN was wrapped around my hearing nerve so it was sacrificed. 

My doc did discuss all the possible side-effects prior to my surgery, but he didn't tell me "to anticipate awakening from surgery with facial paralysis".   I did experience some slight paralysis post op but was given a dose of steroids and it went away by day 2.  Docs can give you an idea of what to expect, but not all patients experience the same side effects.

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

resox84

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #10 on: January 18, 2014, 02:27:15 pm »
Thank you, Jim and Jan, for your responses.

I am appreciative of my doctor giving me his honest assessment and prognosis, but it was a little frightening to hear at the same time. In my case, the tumor is pressing against my trigeminal nerve, which is causing severe amounts of pain. At this point I am ready to just get this thing out of my head. I did send my MRI scans to a radio-oncologist for their opinion on whether radiation therapy is possible for a 3.1cm because it reduces the risks of both facial paralysis and hearing loss, but it seems inevitable (and best option) to just remove it.

Randy

v357139

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #11 on: January 19, 2014, 09:39:27 pm »
Do you have a surgery date yet?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

resox84

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #12 on: January 19, 2014, 10:43:10 pm »
v357139 -- Yes; I do. It's scheduled for Feb. 12.

leapyrtwins

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #13 on: January 20, 2014, 12:09:17 pm »
Glad to see you've scheduled surgery.  I'm not a doc, but most won't radiate an AN over 3 cms.

Good luck; keep us posted.

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

v357139

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Re: QUESTION FOR THOSE WHO HAD 2.5CM OR LARGER
« Reply #14 on: January 20, 2014, 09:00:33 pm »
v357139 -- Yes; I do. It's scheduled for Feb. 12.

Not sure if you are talking about temporary or permanent facial paralysis - big difference.  When mine was 2.7cm, three doctors all told me around 10% chance of permanent facial paralysis.  I got several opinions to make sure they were all saying about the same thing.  Different doctors do sometimes have different strategies.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!