Surgery v. Radiation

[kat]

Hi Evan

I am glad to hear that you do not have an AN after all and I really hope that you will get a definate diagnosis soon .
I am sure that you will keep us posted . On this forum we can only give an honest account about our own AN experience and the reasons why we chose a particular treatment . I think it is also equally important to report the good as well as the not so good . Sometimes this will mean a less than favourable view about the medical profession at various stages of treatment.  MY biggest frustration was in the beginning where I felt that I was given a hard sell for surgery and only the negatives were discussed about
radiosurgery . You are very lucky to have a good team who are willing to discuss all the treatment options .                               

 Good luck ! 

Regards Kat 

[Derek]

evan,

first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you.  Will keep my fingers crossed.

As for your comment:

..."we should ultimately let the doctoring up to the doctors"...

I have to respectfually disagree.  As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds.  I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship).  IMO, we must continually learn from each other and that dr's are not infallible.  Just my 2 cents.

Please keep us updated on your progress.... and hope things turn out well.

Phyl

Hi Phyl...

I obviously was aware of your AN and Chiari 1 condition but I was 'gobsmacked' by the revelation in your post concerning your pancreatic illness. I was not sure if that aspect had been mentioned before but I just wanted to place on record that having due regard to your own health problems I consider it truly amazing how your continual ability to empathise, encourage and placate the daily myriad of concerns and worries of others, whilst always responding with a good 'dollop' of humour, is truly outstanding and does you great credit.

Best Regards

Derek

[ppearl214]

HI Derek,

Thank you  .  I am overly humbled and I thank you.  No, only a few around here have known as this site is dedicated to AN's and I try to keep my focus on that.  I am doing well and hanging tough, all with thanks to the wonderful folks on this board. 

With humbled thank you.
Phyl

evan,

first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you.  Will keep my fingers crossed.

As for your comment:

..."we should ultimately let the doctoring up to the doctors"...

I have to respectfually disagree.  As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds.  I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship).  IMO, we must continually learn from each other and that dr's are not infallible.  Just my 2 cents.

Please keep us updated on your progress.... and hope things turn out well.

Phyl

Hi Phyl...

I obviously was aware of your AN and Chiari 1 condition but I was 'gobsmacked' by the revelation in your post concerning your pancreatic illness. I was not sure if that aspect had been mentioned before but I just wanted to place on record that having due regard to your own health problems I consider it truly amazing how your continual ability to empathise, encourage and placate the daily myriad of concerns and worries of others, whilst always responding with a good 'dollop' of humour, is truly outstanding and does you great credit.

Best Regards

Derek

[ceeceek]

Hey Evan,
I do not believe anyone is intentially playing Doc....but there are alot of options available and depending upon training, skill level, experience, insurance, medical based facility etc. Different Doctors have of course different opinions. I am glad you have found Dr.s whom have placed you at ease, show concern and seem knowleable enough for you. That is in the end what counts.
Unfortunatley, not all of us have had that experience with our first few opinions etc. which is how personal research has taken a life of its own.
It is ultimately an individual decision, but it is also nice to know what other people have experienced and what other options are available.
I am keeping my fingers crossed for you as well as me as we are in similar situations, however, I am not in a position of waiting....however, it certainly seems that your Dr.s are well informed, conservative on your behalf and open to all the options. You lucked out with them and they seem to have your best interest at heart.
Keep us updated.
Ceecee

[Evan]

I do not want people to take my previous posts the wrong way.  We should use each other and as m any resources as we can.  What we should not do, in my opinion, is use the information that we obtain, and suggest to people this is the way, or not the way to go.   This board is a wonderful source of information and comfort but again, we should all understand that this is what it should be about.

With my story, the PET Scan came up negative, meaning that I do not have cancer.  They also had a different radiologist read the original MRI  and it was his opinion that it did not look like an acoustic neuroma.  Then what is it?  No one knows.   It could be nothing, it could be a facial neuroma or who knows what else.  Since it is small, the doctor wants to wait 6 weeks, re scan me and then she whats up.  If it is a facial neuroma, six weeks will make very little difference and my doc, a surgeon, said.....I am doing my job if I am able to tell a patient he does not need surgery. 

One other point....I had sent the MRI films and report to Dr. Adler at Stanford.  He callled me back immediately and said that radiation was the answer with such a small acoustic neuroma.  He was pleasant on the phone and it was also something I wanted to hear.  My point being, that it may not be an AN afterall, and that is why we have to all be careful where we are getting and consults and info from.  Adler is wonderful, but we all know he has a vested interest in the CK and even though I would love to think that doing the right medical thing is what is most important, he has his slants, as do all doctors.  I think that is why when we are exploring our options and looking for docs, it is extremely important that we find docs that will tell us the way it is, not just what we want to hear and not just what they may be trained to do.  I was lucky in finding Dr. Sen and Costantino, who are well regarded, and busy, but who, to m e, felt like they were treating me as they would another family member. 

Anyway, I just wanted to share with you that information, and again, my point to all of this is to educate myself and to share with others what I am learning so that it could help others.  What will happen with me is anyone's guess, but whatever it is, I will continue to provide the information that I am receiving so that it could help others.

Evan

[ceeceek]

I am really glad that you do not have cancer, and as you said the growth may very well be incidental so that is great news. Since your doctors perform both radiation and surgery (or are open to both ideas) it is a great way to get an opinion. As you have found out, there are lots of them out there. In the meantime, hopefully in six weeks, the growth will be no different, your palsy symptoms will have abated and you will not have to do anything..best approach possible.
I do not believe anyone took your comments the wrong way..by the way, we all realize that when typing, inflection is hard to emphasize so no worry.
Keep us informed, we are all waiting with you on that six week mark. Good luck and keep us posted
Ceecee

[Evan]

Thanks Ceeceek:

Even though I complete trust my docs, I had already made a consult appt. with Dr. Sisti at Columbia.  I am going to bring my films with me on Thursday and just have him look at them, without letting him know what transpired last week with my Pet and consult with Drs. Sen and Costantino.  It will be interesting to see what he says, and I will let everyone know. 

Evan

[doogey]

Hi everyone,

I am brand new to this forum (3/19/07) and was diagnosed with AN on 3/10/07.  I went to my primary care doctor complaining about some minor loss of facial control on right side of my face and some minor ringing in the ears.  He immediately sent me to get the MRI, and hence the diagnosis on 3/10/07.  Was told that my AN is 9mm (I still need to get the other dimensions).  I have been to one "head and neck specialist" already who pretty much told me that I should remove the tumor as soon as possible, but he wanted me to consult with another specialist to get another opinion.  I have to respect a dr. who recommends a 2nd opinion.

After the initial shock of the diagnosis wore off, I started researching AN on the net, and came across this forum.  I really appreciate everyone's comments and true willingness to help other people in the same situation.  I don't know where my journey will end at this point, because I am still in "investigation/research" mode.  I'm not even close to knowing enough to decide the correct treatment option.  I will know more after the consultation with the additional specialist.  I am going to stay optimistic at this point because I believe my tumor is relatively small at this time so I don't feel like I have to rush into a decision on treatment (but on the pessimistic side, I am showing facial paralysis symptoms already).

I do have some preliminary questions that hopefully people can answer:
1.  For those people who had surgery option, do you still have ringing in your ears?
2.  Same question for those of you who had the CK/GK treatments?
3.  Does surgery always result in total hearing loss on the affected side?

I hope to be a contributor to this forum going forward, so stay tuned......

[Evan]

Doogey:

I will just relate what happened to me and hopefully that will give you some guidance.  I had an ear infection, followed by fluid in my ears and then followed by some facial paralysis.  I had little or no hearing loss.  My MRI showed something "most likely an AN", of about 1.5 cm x 1 cm x .5.  I did a lot of research on line and thought that I would be a good candidate for radiation.  When I had my first consult last week, my ENT and Neurosurgeon, in looking at my MRI and my symptom history, both said that it did not look like or sound like an acoustic neuroma.  While it could be a facial neuroma, they were not sure, so they scheduled me for a PET scan to rule out an adenoid cystic carcinoma (cancer).  Fortunately that came back negative, so on Friday, my ENT and neurosurgeon both felt that I should wait six weeks, get re scanned and then see what happens.  They clearly did not want to rush into any treatment whether it was radiation or surgery.  What concerned them, was the symptom pattern.  It appears as if you have some facial paralysis first, which could come from a facial neuroma, AN, or even a Bells Palsy (symptoms following an insult to the auditory canal and the 8th crainial nerve).

Since AN's grow very slowly, I like the idea of taking it slow, getting several consults and then determining what option is best for you.  As my surgeon said to me.  "The best advice that I can give anyone is that they do not need surgery".  Thats the kind of doctor I like.

Please keep us informed, and continue to write and ask questions.

Evan

[krbonner]

I do have some preliminary questions that hopefully people can answer:
1.  For those people who had surgery option, do you still have ringing in your ears?
2.  Same question for those of you who had the CK/GK treatments?
3.  Does surgery always result in total hearing loss on the affected side?

I'll try to answer a couple of your questions.

1) It's highly unlikely, though not impossible, that surgically removing an AN will eliminate the tinnitus.  I believe most surgical patients report the tinnitus stays about the same, though there are some that report an increase or decrease.  I don't know of anyone who had it completely go away, though I won't claim to know every AN case out there!     Peronally, my tinnitus changed quality post-op, but not intensity.  Hw your tinnitus will react is impossible to predict since we all have such individual reactions to the various forms of treatment.

2) Can't answer, as I didn't have radiation.

3) Traditionally, there are three surgical approaches to remove ANs - translab, middle fossa, and Retrosigmoid/Sub-occipital.  Translab will destroy all hearing b/c the acoustic nerve is removed - this is the approach I had, but my hearing was 90% gone pre-op anyway.  The other two approaches can try to preserve hearing - you can find the statistics on that online.  Radiation is also a good option for preserving hearing.

Your AN is small.  Please don't feel rushed into anything.  You have lots of time to research and decide what you want to do.  Watch-and-wait is also a valid option to discuss with your doctors.  One of the keys, I think, is to find a doctor who has dealt with hundreds of ANs - they're rare enough that not every physician or specialist has a lot of experience with these things. 

Where are you?  Maybe someone here can direct you towards a doctor in your area with lots of experience.

Katie

[kat]

Hi Doogey

I can only answer question 2 since I have only had GK . As a result there has not been any change to the volume of tinnitus or any change to hearing since my GK nearly 23 months ago.  All in all so far so good .

Good luck with your research

Regards Kat

[doogey]

Thanks Evan (and thank you for the private message also).

Like I said, this forum is a breath of fresh air for me, even though after only about 5 days of monitoring the posts, I now feel like I have information overload.  So much to research and to digest!  I am in the process of scheduling my first consult with a local doctor here in Dallas, so I am staying optimistic until that consult is completed.  As of this time, I am not positive on whether I officially have an AN or a facial neuroma....I guess there's not much difference in that they are both tumors, but classified as such based on the nerve that is most affected.

I do have another general question for the forum.  I do plan to get multiple consults from some of the doctors that I have seen listed in these posts.  Are people finding that these experts will consult for free?  If not, are people finding that their insurance will pay for multiple consults?

And, one last question (for now anyway), how do I get a copy of my MRI so that I can send it to these additional experts for review and consultations?  Can the MRI lab e-mail the pictures, or do they have to produce physical films to send?  I guess I need to get copies of my MRI's before heading down the path of additional consults.

OK, I fibbed about being the last question.....does anyone know a very good expert here in the Dallas/Fort Worth Texas area that would be a good consult?

Thanks everyone.

Jeff (aka doogey)

[ppearl214]

Hi Jeff,

I know that Dr. Clinton Medbery in Oklahoma City (on the CK Patient Support website:  http://www.cyberknifesupport.org/forum/) will do a free consult.  His expertise is with GammaKnife and Cyberknife, as he performs both. I do believe that Dr. Spunberg (also on the CK Support board) in Florida, will also do a free consult. I know Dr. Brackmann of the House Ear Institute in CA (LA) for a microsurgical opinion will also do a free consult. I believe if you have all of your films burned on a CD and sent to them, they will all consult (from all angles) for you.

I hope that helps.
Phyl

[ceeceek]

Jeff

Dr. Spunberg in Fl (info for contact on cyberknife support group site) will also be happy to look at films...I believe Dr. Feilds at orlandoneurosugery will also do free consult..although, he is out of town for next week or so......he did not charge me and another member, Also,  Pittsburgh will also, and if you look at medlineplus videos, they have several referneces to Hospitals and Dr. in the Texas area.
You will need to get a CD version of your MRI and CT scan if you have one....a CT is important film as well, then you can make your own copies and send them wherever you need. Most MRI facilities have capability of making a CD, if yours does not, you can request for copies but typcially they will only give you one set, and you will have to pay out of pocket for additional films. Depending upon the MRI center, the request will either need to come from you or your Dr. that requested the MRI to begin with. Generally I have found through past experiences to always request copies of everything from everyone, including consultation report. The Dr.s offices do not care for this but they have to by law comply, and I have found it to be invaluable in general in particular in this situtation.
You have several options available and another member mentioned the types of surgery available but forgot one....endoscopic approach is becomming more common and I would check that out as well. Skull Base Institute has a wonderful website and if you use thier library it has animated and real film of various proceedures to give you some clue.
Of course alot depends upon where and what and the size etc of your growth and technically a AN is a schwanomma, they are just typcially called acoustic neuromas but are actually a vestiblar schwanomma, and you are correct in that they are more or less the same thing, just growing upon different nerve endings.
How they are classified depends upon several factors such as location, formation of growth such as defined borders, shape etc....If your growth is in a common spot and can be really determined to be a schwanomma, just by looking at the films ( this is common proceedure diagnosis by the way ) you may be a great candidate for one of the various types of radation treatment.
As you can see there are lots of options available, so get your copies, get more than one opinion, read up and then decide what works best for you.
Ceeceek

[Evan]

I know there has been a lot of talk about endoscopic procedures and I know that it is being used more frequently than it has in the past.  I also know that Jerseygirl (Eve) is going to have Endoscopy done sometime in the near future.  One of the things that I read about endoscopy is that while it can be wonderful in terms of recovery, less risk of damaging other nerves etc, that some doctors do not like to use it because if a problem arises, it may be more difficult for the doctor to access that area from the small incision he has made.  What has been other people's research, thoughts, etc on this particular issue.

Evan