Author Topic: Sooo confused!  (Read 7582 times)

vsfunkhouser

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Sooo confused!
« on: August 08, 2011, 05:29:36 pm »
Thought I had made my decision.  First saw ENT on June 3... sent for MRI and then to Neurotogist on June 17 then an ENG & ENT.  Set up appointment with co-surgeon (neurosurgeon) today, August 8 with Trans-Lab surgery to be on September 1.  I went to the neurosurgeon thinking that it was a formality so that I would know the surgeons involved in my surgery.   

I have a 1.7 cm AN and they also discovered that I have an unusually high jugular bulb that could present some complications.  The neurotologists said he did not recommend radiation because of the size of the tumor and the location. He also said that if I had the radiation and the tumor would begin to grow again the radiation woulld complicated the surgery and the outcome would not be positive. 

The neurosurgeon said today that he wanted me to understand the complication of the surgeries and that 1 in every 5 suffer from facial nerve damage.  My husband asked him what his recommendation was and he basically said he would do the surgery if that is what I wanted but if it were him he would have the radiation.  He said that at my age (56) if it stared to grow again, I would still have the surgical options.

OMG... talk about confused, my head is spinning!  I mean this is the co-surgeon ~ I would think they would be of the same opinion. 

I know of someone local that had her radiation at the Cleveland Clinic and I plan to call them for an opinion.

Does anyone have any advise?     ???

opp2

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Re: Sooo confused!
« Reply #1 on: August 08, 2011, 05:32:41 pm »
My only best advice for you is to call House for a consult. They will look at your MRI and give you a consult free of charge. They are also very frank and up front.

Good luck!
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

vsfunkhouser

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Re: Sooo confused!
« Reply #2 on: August 08, 2011, 06:31:36 pm »
They are located in Los Angeles, CA.... they don't mind looking at your records when you may not have treatment there?

Rivergirl

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Re: Sooo confused!
« Reply #3 on: August 08, 2011, 06:40:25 pm »
When I was first diagnosed my Dr. wanted me to wait and have another MRI in six months to see if it grew, I ended up a couple years waiting and watching until it grew too much and had quite a few symptoms but I waited until push came to shove.  I just wonder if you are there yet? It is good to go to a Radiology consult because that could be the decision breaker, when I went they did not advice radiation so my only option was surgery, which helps the surgeons when there is no other option for you.  Do your research go for opinions, you have time they are slow growers most of the time.  And House Ear Clinic is awesome do send your stuff to them (hearing test, MRI) they get back to you pretty quick.  Best of luck with your journey.

Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

alabamajane

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Re: Sooo confused!
« Reply #4 on: August 08, 2011, 06:56:55 pm »
HI I did send my MRI out to House and audiology reports also. The address is on their website.. you send it Express Mail (overnight at PO) and some one will call you usually within 48 or 72 hrs I believe. They are VERY helpful and informative. You do not have to have surgery there,, no commitments and they are very helpful and knowledgeable .. I have not decided who or where I will have surgery and may still go there,, but even  over the phone Dr Slattery was more informative than my "local" Dr..very reassuring. good luck!
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

CHD63

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Re: Sooo confused!
« Reply #5 on: August 08, 2011, 08:16:55 pm »
I would strongly urge you to send copies of all of your MRIs and audiograms to HEI.  They truly will evaluate them and call you with what their recommendation is in your situation.  There is absolutely no obligation to go there for treatment and it is absolutely free, except for the cost of you sending the materials.  You have nothing to lose with another opinion.

At the symposium in Cincinnati in June, Dr. Friedman looked at at least three different patient's MRIs that I know of while he was there.

Let us know what they say.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: Sooo confused!
« Reply #6 on: August 08, 2011, 08:31:34 pm »
Find another qualified doc in your area and get a second opinion. 

Yes, opinions at HEI are free - but if you don't have any inclination or intention to travel to Los Angeles IMO it's more realistic to talk to a doc you would actually go to for treatment.  Most insurance companies will pay for 2nd, 3rd, and even more opinions when you are facing the possibility of major surgery - and AN surgery is major surgery - so don't worry if opinions aren't free.

Also keep in mind that treatment decisions are very personal choices.  My neurotologist, who does both surgery and radiation, absolutely refused to make my decision for me.  He said it was my decision and he was correct. 

Unless there is some reason that you MUST have one treatment instead of another, you and only you should make the decision. 

It's your head, it's your tumor, and it's your choice.  It's not an easy decision, but you'll get there; make sure you educate yourself and go to a doc who is experienced and qualified in treating ANs.  There is a list on the ANA website main page.

Good luck,

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

Dee-dee

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Re: Sooo confused!
« Reply #7 on: August 09, 2011, 05:29:05 am »
How are you coping now?
« Last Edit: January 10, 2012, 11:43:55 am by Dee-dee »
2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

rvb755

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Re: Sooo confused!
« Reply #8 on: August 12, 2011, 02:46:39 pm »
I recently sent my MRI to HEI also, and got a rapid response.  I sent it out Express Mail on a Sat. morning from Michigan.  It arrived at House on Monday afternoon  (we called to make sure it was received).  Dr. Friedman left a message on my machine at 11:58 EST, which is 8:58 PST (I believe the clinic opens at 9 PST).  I spoke with Dr. Friedman later that day and I am scheduled for surgery with Dr. Friedman, Dr. Schwartz and Dr. Stefan on Aug 24.  I highly recommend getting an opinion from an HEI doctor.  It doesn't cost anything and they are very experienced.  Reallly hope you find the treatment you have peace with.

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

JAndrews

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Re: Sooo confused!
« Reply #9 on: August 12, 2011, 07:31:13 pm »
I would definitely stay away from that surgeon! Call House, send them your MRI. They will consult for free over the phone. They are the best. It is worth the time and money to go to California.....
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

james e

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Re: Sooo confused!
« Reply #10 on: August 13, 2011, 11:01:31 am »
I changed my mind so many times, it made my head spin...as if it wasn't already spinning. This is the hardest part. Do not be in a rush to come to a decision. There are no "take overs" so do some reading, ask more questions, interview more doctors. Time is on your side. Try to take "emotion" out of your decision. Make a list of the good and bad of surgery and radiation. Write some questions. Get back on line here and ask your questions.

I decided surgery finally after asking lots of questions on this site. I asked questions in private messages about the doctors I chose, and made my decision based on those answers. I did not make a blind decision. HEI is a great clinic, but I would be willing to tell you ahead of time what their answer will be. YOU have to decide, not some doctor. I had multiple answers from lots of doctors, including HEI, I made my own decision.

Doctoring is a business, and they are all trying to make a living..."mine is the best way". Do what is best for you, not what is best for the doctor or clinic. The answer will "set you free" when you decide what to do. Same thing happened to me and all the "posties" here.

James
 

teripo

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Re: Sooo confused!
« Reply #11 on: August 14, 2011, 05:07:05 am »
I know what you mean.I have a 1.8 tumor and feel like taking a break from all these opinions.Because they are not consistent.I know the tumor is tho,or maybe,and have to make a decision.I went to a nuerosurgeon on the team of the radiologist I saw last week,yesterday and he rec. surgery.He said I can preserve my hearing and 5% chance of facial droop.He said he may take some out and not "be a hero for the MRI" when I asked about not going too close!He works out of NYU along with Roland and Golfinos,I guess that means he has worrked with them before?
 So here we have the 3rd team I've seen and they dont agree with each other.The radiologist reccomended Cyberknife and his teammate Surgery!
 He also said I probably had it 20 years! My hearing is compromised 5 years.

sarahinPA

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Re: Sooo confused!
« Reply #12 on: August 14, 2011, 08:21:06 am »
I had radiation in 2009 and fell into the dreaded 2-3% and had regrowth. Regrowth after radiation does make the tumor a bit more difficult to remove. The doctors explained to me (before and after my regrowth) that radiated tumors have a thicker consistancy than non radiated tumors, much like a scar tissue. when they remove the tumor they "peel" it away in layers, eventually getting closer to nerves such as the facial nerve in my case. When the tumor is radiated, the "peeling" is more difficult.  I am now 15 days post surgery and the doctors were able to remove 97% of my radiated tumor while save the facial nerve. I have NO facial paralysis. They left a small piece of the tumor on the nerve, tried to remove it a few times while they were in there, but the electro pulses things were showing too much damage so they back off, they even said the piece they were trying to remove may have been skin, and the chances of regrpwth now are so very slim for me.


You need to make the best decision for you, it sounds as if you might be a candidate for Gamma Knife and in my opinion this is the best option if it is an option,. It is less invasive, less side effects in the long run, and less recovery. If this is not an option, surgery is ok, I was so scared going into it, but now, 2 weeks later, im getting back to my normal self.. good luck, and let us know how it goes!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

teripo

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Re: Sooo confused!
« Reply #13 on: August 14, 2011, 03:47:10 pm »
Thanks for the reply.Do you mean I am a good candidate for Gk or Ck?They are differentand I hear Ck is better for hearing preservation.

sarahinPA

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Re: Sooo confused!
« Reply #14 on: August 14, 2011, 07:36:58 pm »
When I had gamma knife my hearing actually improved slightly after the procedure. I am not too familiar with cyber knife so I can't speak about that option.
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.