Author Topic: Which type of operation to have.  (Read 3338 times)

fuller

  • New Member
  • *
  • Posts: 3
Which type of operation to have.
« on: March 05, 2008, 10:04:38 pm »
I am not concerned at all with the loss of hearing, I can deal with that.  Also it will be a relief to get rid of the ringing in at least one ear.  My tumor is on the right side, but the ringing and loss of hearing is in both ears.  Whats up with that?  I seem to have months of few symptoms followed by months of severe, frequent symptoms.  Each time the "attacks" come back they are worse than before.  I started with just vertigo and falling down.  I have progressed to severe vertigo which last for hours instead of minutes, falling down, nausea, vomiting, headaches, and fatigue.  Does anyone else have sensitivity to sunlight.  Bright sunlight instantly triggers vertigo and nausea. I seem to have a bad time with biting the inside of my cheek on the right side and food falling out of my mouth when I eat.  Not fun trying to explain that one to poeple.  I am hiding this whole thing from my co-workers and my bosses, but the longer it goes on, the more difficult it is becoming.  I am worried about the whole facial paralysis thing and dealing with all that.  My surgeon says that my tumor is in a difficult place to get too without causing damage and has recommended a follow up MRI before we go any further.  My January MRI was not of very good quality.  I don't care what type of surgery he does, I don't care if I end up deaf and walking with a cane I just don't want facial  problems.  So does any one know what the percentage of people who end up with facial paralysis is.  I am going too see surgeon during spring break to make decision on what to do. 
Thank you all for your help and info.

satman

  • Sr. Member
  • ****
  • Posts: 411
Re: Which type of operation to have.
« Reply #1 on: March 06, 2008, 05:14:51 am »
Hi Fuller,your symptoms sound a lot like the symptoms I had ,I had the Translab surgery ,lost my hearing and have the facial paralysis.
the type of surgery you will need will be up to your dr.
Please know that there are options to repair nerves that are damaged so you facial animation will come back,yet I am still waiting for the nerves to grow into the muscle so animation will come back.In my case I had the 7-12 nerve jump surgery.
I would say dont worry so much about the face aspect as there are many other issues you need to deal with first,believe me it is a long road,there are 100 steps to go through and you are on step 1.
get the tumor removed and take it 1 step at a time,things will work out over time.I am always here if you need to talk.
kicked my little 8cm buddy to the curb-c ya !

HeadCase2

  • Hero Member
  • *****
  • Posts: 778
  • Carpe Grog
Re: Which type of operation to have.
« Reply #2 on: March 06, 2008, 08:45:30 am »
fuller,
  Sorry to hear about all your symptoms.  You can do some Internet searches and find general stats on facial nerve preservation for surgery and radiosurgery.  Generally, the larger the AN tumor the more chance of facial issues.  You can look at the stats, but in the end it will be your particular tumor, its size and placement, and treatment skill that determines your treatment outcome.  Because each AN is different, it's important to be treated by a team who has a lot of experience treating ANs.  I would advise you to find a very experienced Skull Base Tumor team, which usually means at a tertiary teaching hospital.  You may find that different AN treatment teams recommend differing surgical approaches, according to their training and assessment of your AN.  Get several opinions.  And as you learn more, the right treatment for you will become clearer.
  We're lucky in that there are several ways to treat AN.  But along with that comes some uncertainty in picking the right one.
  You also mentioned "Also it will be a relief to get rid of the ringing in at least one ear".  I hate to be the one to tell you, but Tinnitus is seldom eliminated by treatment, and in some cases can be worse.
  Good luck in finding a treatment regimen that you're comfortable with.  All of us here on this Forum understand what you're going through.  Keep in touch.
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Sam Rush

  • Sr. Member
  • ****
  • Posts: 282
Re: Which type of operation to have.
« Reply #3 on: March 06, 2008, 10:16:14 am »
I developed tinnitus in my dead ear 2 yrs after translab surgery. No-one can explain or treat it. As far as facial paralysis, your best chance of not having it is translab surgery at an experienced treatment center where they monitor the facial nerve during surgery,  still.... no guarantee. Where is your AN and how big???
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Esperanza

  • Full Member
  • ***
  • Posts: 147
Re: Which type of operation to have.
« Reply #4 on: March 06, 2008, 11:38:20 am »
Hi Fuller,

Sorry about your AN, it is quite shocking isn't it - I hadn't heard of them before...

I too have been biting my AN side cheek quite a lot in the last few days when I eat and have a slightly 'cold' feeling on my cheek and the AN side of my nose??  My specialist didn't seem concerned about my AN being too close to my facial nerve but I am starting to worry now....

Good luck with your search for the right team, you will certainly find plenty of information on here to help you on your way.
I have been looking at the endocsopic surgery posts on here - very interesting.





Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

sharibari

  • New Member
  • *
  • Posts: 15
Re: Which type of operation to have.
« Reply #5 on: March 06, 2008, 11:51:44 am »
I had all the same symptoms as you my tumor was 4cm. The surgeon you choose is very important. My doctor said my tumor was twice the size that the MRI said and the surgery took twice as long. I lost hearing in my left ear, tumor side, and it still has tinitus, but I can deal with it, considering my options, it is worsened by loud noises. I have a borrowed baha implant and am just awaiting surgery, it works for me I can hear on the left side when I plug my right ear, its wonderful. My tumor was so intwined in my facial nerve it took 4 hours to get it out, 7 hours total surgery time, but they did it and I have no visual problems or facial nerve damage at all. You wouldnt know by looking at me that anything happened. I do have occasional balance issues, but they removed my balance nerve as well as the hearing nerve. I truly love my doctor and had spoke with another patient of his, before surgery who had wonderful results as well. I do hope everything goes well no matter what you decide, I know it is a very scary and dark time, but you need to have positive energy and know that you will soon be a postie and giving your success stories as well.
Translab    4 cm
Dr. Joseph Roberson
California Ear Institute
Stanford Hospital
June 4, 2007

4cm in Pacific Northwest

  • Hero Member
  • *****
  • Posts: 1324
Re: Which type of operation to have.
« Reply #6 on: March 06, 2008, 12:24:12 pm »
Sharbari and I both had big tumors – as did Satman.

If your AN tumor is smaller - you may have many more options, than we did, for treatment.

My tumor was atypical so we chose the retrosigmoid as there was an element of doubt that it was NOT an acoustic neuroma (AN) but a meningioma. If it was a meningnoma we may have had some hearing preservation. However it was very sticky and difficult to remove AN tumor. I lost my hearing and have facial nerve damage. Amymeri and I had the same size tumor  and angle- and our outcomes were both very similar.

If I had known for sure it was an AN tumor- I would have had the translab. Currently I am dealing with facial issues as even though the facial nerve function did return- I now have developed synkinesis. In my ‘current’ opinion - the translab provides better access and visibility to the facial nerve. However I cannot turn back the clock- only pass on my experience to others and hope that their outcome turns out better than my own …and as well sharibari’s has.

4




4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Captain Deb

  • Hero Member
  • *****
  • Posts: 3316
  • Phearless Phyll and Captain Deb!
    • Captain Deb
Re: Which type of operation to have.
« Reply #7 on: March 06, 2008, 12:37:09 pm »
I recently attended the Acoustic Neuroma Associations Symposium in Philadephia this past summer and in one of the presentations they talked about new approaches for facial preservation and dealing with larger tumors.  They said that debulking the tumor, rather than trying to remove it completely and cause damage to the facial nerve, then treating the remaining tumor with Cyberknife radiotherapy of Gammaknife radiotherapy, was becomeing an option for people seeking facial nerve preservation. Whatever you do, make sure you find a surgeon with many AN sugeries under his/her belt.  Good Luck.

Capt Deb 8)
"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

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Which type of operation to have.
« Reply #8 on: March 06, 2008, 02:21:59 pm »
Fuller~
There are a lot worse things than a paralyzed face!!   ;D  I have had mine for 12 years now...
I would take it any day over that HORRIBLE, debilitating headaches that others are having!!  I don't want this half-smile face, but it doesn't affect my quality of life at all -- & I'm not going to let it!!!
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!

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Which type of operation to have.
« Reply #9 on: March 06, 2008, 03:04:33 pm »
Fuller:

Captain Deb (reply #7) is absolutely correct. 

I presented with a 4.5 cm AN, pressing on my brainstem.  All the usual symptoms: disequilibrium, head pain, fatigue, loss of taste.  My neurosurgeon - with over 30 years experience in AN surgery - recommended debulking the tumor using the 'retrosigmoid approach' and following that with FSR treatments to destroy it's DNA and effectively kill it.  He did just that, surgically cutting the AN down to about 2.8 cm and, with the employment of nerve monitoring, spared any damage to the facial nerves so that I came out of the surgery with no real complications, i.e. facial paralysis, eye problems or even a CSF leak (he used titanium mesh to close up my skull).  I recovered rapidly.  Within days after my discharge from the hospital (a 4½- day stay, including the surgery day), my balance dramatically improved, my energy steadily returned and so did my normal appetite.  Two weeks after my surgery, with the surgeon's permission, I was driving again. 

After giving my head a planned three month 'rest period', the neurosurgeon worked very closely with a highly recommended radiation oncologist - using a CT scan and 'fresh' MRI - to 'map' the radiation beams, which were low-dose and applied in 26 separate sessions.  He said I wouldn't lose any hair (I didn't) or become nauseous (I didn't) and that the radiation should not only stop the tumor's growth but likely destroy it.  So, far, so good.   I have semi-annual MRI scans performed now and the AN is definitely shrinking and necrosis (cell death) is visible.  Both doctor and patient are elated.  :)

I posted this to offer a first-hand account of how this relatively new approach to AN removal works -  and see that it can be very successful, although I must hasten to mention that no one can guarantee your results will be identical to mine - or anyone else's, for that matter.  I had no post-operative facial issues to speak of, other than a slightly 'crooked' smile that has pretty much resolved itself.  No headaches at all.  My balance is about 90% of what it was prior to the AN symptoms manifesting themselves.  Of course, I'm deaf in my left (AN) ear.  Tinnitus is present in the 'dead' ear but at a low level that I can basically ignore.  Considering the size and location of my AN, I can deal with a few minor inconveniences.  Especially when I read what other AN patients have endured.

My suggestion is to explore all your options and choose a surgeon very carefully.  I sort of lucked into my choice, as he was a member of the same practice as my wife's neurosurgeon, who specialized in spinal surgery.  This surgeon recommended the neurosurgeon I decided on, and it was a good choice.  He is not only both experienced and compassionate but conservative in his approach and not just 'in it for the money'.   When I inquired about the cost of the surgery (a real concern) he told me not to give it a thought.  He would accept whatever Blue Cross paid, ultimately a total of $28,000. for his services and that of his junior partner, a female neurosurgeon with a great bedside manner...very upbeat.  I never received a bill from his office, with the slight exception of my $8. co-pay for the semi-annual office visits when he gives me a cursory neurological  exam and we go over the MRI results (he explains, I listen, we both smile).   

Frankly, all anyone here can do is offer information and advice.  Based on my experience, I would recommend you consider this approach to dealing with your AN.  Of course, the final choice is your's, alone.

Jim
« Last Edit: March 07, 2008, 03:19:09 pm 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.

fuller

  • New Member
  • *
  • Posts: 3
Re: Which type of operation to have.
« Reply #10 on: March 06, 2008, 09:11:04 pm »
I developed tinnitus in my dead ear 2 yrs after translab surgery. No-one can explain or treat it. As far as facial paralysis, your best chance of not having it is translab surgery at an experienced treatment center where they monitor the facial nerve during surgery,  still.... no guarantee. Where is your AN and how big???
My AN is 4-5.3mm growing in the opening of the auditory canal.

tony

  • Hero Member
  • *****
  • Posts: 666
Re: Which type of operation to have.
« Reply #11 on: March 07, 2008, 01:31:46 am »
I am quite amazed at the range of symptoms you have
- given the size of the tumour -
I might expect 5.3cms to do all this - but rarely would 5.3mm
give quite so many issues.
Just to echo a point made earlier in the answers
these things are quite rare - its often rather more important
WHO does the treatment rather than the WHAT they actually do.
Someone with a 100 + proceedures behind them has alot of experiance
and a track record you can check against
someone in the early days of AN exposure - maybe its a bit less predicatable ?
I think you do have options here
I am sure the group can offer some pointers
Best Regards
Tony