ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Greengiant71 on February 06, 2009, 03:01:16 am
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Hello everyone,
My name is Cliff, I was recently diagnosed with AN towards the beginning of the new year. I have since then seen my doctor and we have talked the options to surgery (through the ear or behind it). I must say i am in the service so I have military and civilian doctors I am dealing with here. I am scared &^*#less about this procedure and am not really sure what awaits me, I still have to speak with neurologist next week and from there we will make an appointment for surgery near the end of March. I am wondering how serious of a procedure is this? I am wondering if i will be able to at least complete my enlistment or not, due to this diagnosis I most likely will not be able to do a tour in Iraq so I have been told :-\. I am stationed in Hawaii yeah the paradise island as most would call it, unfortunately I have no family that will be able to come out to see me after surgery. Since my diagnosis it has been wracking my brain every day really, not knowing whats going to happen after surgery. I have been told I will be losing complete hearing in my left ear there is just no saving it. How long is the rehab process?
My options were really clear, option one : go in behind the ear remove part of the skull , move the cerebellum to the side and go for the tumor, or option two : drill straight into the ear to get to the tumor. Yeah i was not happy to hear this :o and I'm not really sure what to do here. Any suggestions would be a blessing...
Cliff
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Hi Cliff.
I'm also in the military. The Royal Danish Air Force to be exact. I know exactly what you are going through, and it isn't easy. I am about forward my medical file from surgery and 3 months follow up to the military doctor. They will then decide what kind of posts I'm allowed to fill.
The surgical approaches have pro's and con's. The Translabyrinth approach (throug the ear if you like) offers the best clear view of the tumor, thus the best chance of total removal while preserving the facial nerve. It will leave you 100% deaf on that side, because inner ear structures will be destroyed.
The other approach offers a chance to preserve hearing, however tumor size and location is a factor in this respect. They will have to push (gently) the brain to a side in order to remove the tumor, and the view is not as clear as with the translab.
Both procedures are basicly brain surgery, because they have to open the skull and manoeuvre in a very delicate area. In it self that is risky business, but the prognosis is really really good.
My advice to you would be, if the doctors are pretty sure, that you will loose your hearing, then choose the approach where the surgeon has the most experience and preference. Rehab process is different from person to person. It could be anything between 4 weeks and 3 months.
As for being a soldier and being single sided deaf. I think you can still be in the service, but not in high risk combat operations. You will loose stereo hearing, and it is a real mega downer not to know from where that AK-47 sound was comming from.
I wish you good luck making a decision.
Best regards, Kenneth
P.S. You don't mention the size of your tumor. Is it to big for radiation, and are you sure it is growing?
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I'm sorry about all of this. What is the size of your AN and is it touching the brainstem?
Tisha
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Cliff,
Welcome, but sorry you had to join. Here is a great place to ask questions and get answers.
I'm retired from the army and had my surgery done 16 months ago. Retrosigmoid (behind the ear) a small hole drilled about the size if a dime. I have insurance with the company that I work for in germany so don't have to worry about military redtape. Had OP in german hosp. How big is your tumor? Is it growing? What symptoms do you have? I ask all of this because there are other options than surgery depending on size. There are people here that have been waiting and watching for years and have no growth. There are also alot of people who had success with GK, CK, radiosurgery.
The surgery is a pretty big deal and you should look into who would do the surgery. Don't alow just any Dr. to do the surgery it is brain surgery. The recommended amount of surgeries is between 50-100 and it is best if they have done 50-100 per year for a few years.
My doctor told me after the surgery I shouldn't lift any thing heavy for the first 3 months. At the end of the 3rd month I went back to work and was lifting 50lb bags. At 6 months after surgery I'm sure I could have passed a PT test and now for my age I could probably come close to maxing it. I have 50% hearing loose now in AN ear and sometimes have trouble understanding someone on my left side at a loud party but I'm think I could still tell you in which direction the AK-47 is. ;D
There are still alot of Drs out there that don't know much about ANs, or how to best handle them. My PCP (Dr 30 years) had never had a patient with an AN. My first ENT had also never had a patient with an AN (ENT 15 years), thats why I have a new ENT, she's had at least 3 others. The other 3 she talked into having radiosurgery (all GK) all successful.
I understand your worries, believe me its hard. Once you have made a good well informed decission though I think you will feel better.
Soak ups some rays for all of us less fortunate people.
Dan in Germany
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Hi,
It is very scary to find out you have a AN, even though it's benign. I'm glad you found this group, as they/we are very supportive and have lots of knowledge and perspective.
What I would ask is -- are you SURE you have to have surgery? What is the size of your AN? Based on the size of your AN there are several options besides surgery, and sometimes doctors immediately recommend surgery when you could instead have a 'one-shot' form of radiation, or even decide on a "wait and watch" option. The decision also, of course, depends not only on the size, but the symptoms you're having (for instance, some people with very small ANs have severe balance/dizziness problems that have to be corrected sooner rather than later).
The VERY GENERAL size 'rule' is that up to 3 centimeters one can choose a radiation or wait-and-watch approach instead of surgery, so let us know what the size of yours is -- and be a powerful patient-self-advocate if it's smaller. If you can, take some time to do research, on this board and elsewhere. What are your symptoms?
Ask any and all questions...there are many here who've been through the initial shock you're experiencing, and there are many who will chime in.
Take care,
Dana
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Oh nice Dan , surgery in Germany huh well I know for a fact they do pretty good work i lived there for 22 years and the doctor care there was outstanding. The size of my tumor is that of a pea so the doctor tells me. I do have the option to watch and wait or radiation treatment as well. The tumor isn't far from the stem and its only a matter of time before it wold cause some serious affects to me :-\, give it time and would cut off my breathing. The surgery I was told will take all day and after that I would be in the hospital for 6 days.
Cliff
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Symptoms .. hmm well i have hearing loss in the left ear but other than that I dont have any other really. I get a ringing every now and then but that's about it, no real balance issues. I would rather have the surgery due to the fact that its still there ans will have to be removed eventually sooner or later.
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Hi, Cliff - and welcome.
I'm sorry you're one of the relatively few folks to be diagnosed with an acoustic neuroma each year but I'm pleased to see you searching for information. I believe you'll find a lot of it, here. In addition, we've all been where you are, today, and can certainly relate to your concerns. You've been given an excellent overview of the situation from two military men - Dan and Kenneth - and I cannot add much to their inclusive comments. AN removal surgery is definitely serious business and demands a skilled, experienced surgeon. Recovery is sometimes slow and frankly, varies widely from patient to patient. Some AN surgical patients are in the hospital for a few days, return home to recuperate and resume their normal activities within a few weeks. Others take a bit longer and some have lingering problems that can affect their quality of life. Something I always attempt to make clear to newly diagnosed AN patients is that, as much as I wish it weren't so, with acoustic neuroma removal surgery, there are no guarantees on the outcome. The good news is that the tumor is almost always benign (not cancerous) and certainly treatable. Size and location are the determining factors, but irradiation may be an option for you. Radiation is, by it's nature, non-invasive but of course, not risk-free. What is? As a fit young man I would assume you'll experience a rapid post-op recovery. I have no military experience to draw on but I have to doubt you'll be cleared for combat duty, however, you may well be able to remain in the military. That is something you'll have to consider as you plan your future, post-surgery. Although I believe the important points have been addressed I'm sure others will hasten to add any salient information in response to further questions that may arise on the thread. Let me reiterate that, collectively and individually, we understand your emotions and can certainly empathize with you because we've all been where you are, today. We're still here and most of us are doing just fine, even 'senior citizens' (ahem) who still greatly respect those who serve their country in the military. I wish you all the best.
Jim
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The size of my tumor is that of a pea so the doctor tells me. I do have the option to watch and wait or radiation treatment as well. ....
Symptoms .. hmm well i have hearing loss in the left ear but other than that I dont have any other really. I get a ringing every now and then but that's about it, no real balance issues. I would rather have the surgery due to the fact that its still there ans will have to be removed eventually sooner or later.
Pea sized and only some hearing loss is a good candidate for radiation treatment. For ANs radiation treatment uses sophisticated systems that deliver focused radiation to the AN. It is less invasive than surgery, with a shorter down time, and the AN does not usually require surgery later. You might even save some hearing. Given your situation, I would give it another look see before deciding on surgery. In the end of course it is you that must be comfortable with your decision. Best wishes.
Steve
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Hi Cliff and welcome!
First of all, how come you get a nice duty station like Hawaii, and my Navy husband gets Nashville??? ???
I would suggest you investigate all your options. Sounds like you have a little time, so I'd take advantage of that. A lot of folks have had great results from radiation, so that might be the way to go for you to be able to avoid jeopardizing your career.
I will tell you that dealing with the military insurance in my case was not as bad as I expected it to be. I had to pay a catastophic co pay because there aren't many civilian docs here to take military insurance - probably has to do with the lack of military here, huh? I would imagine that if you choose to have treatment in Hawaii, you'd have an easier time of it since the doctors there are familiar with dealing with Tricare. Since you have no family there, I would think you could request to return to your homestate for treatment and recovery if your family is there. Or have your family come out there - Hawaii sounds like a perfect place to recover from just about anything!
Anyway, bottom line - do your homework - from what I learned, military hospitals - in this country anyway -do not do a lot of these surgeries, so they may not be the ones you want messing with your head. Like I mentioned earlier, I had a copay - $1000 - because my doctor was not in network. Once the bills started coming in, I realized what a bargain $1000 is for brain surgery.
Good luck and keep us posted.
Lori
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I didn't really want to come to Hawaii, it was my last choice of duty station. I'm well traveled and have seen most of the world, I wasn't aware that I could request going back home to the surgery (San Antonio). Flying my sister out here would cost too much really.. and who is going to watch the kids then :-\. Anyhow.. its been so much easier after coming here and getting the info from this site, so glad I got the brochure from the doc. Yeah Tri care is funny and the way it works around the world including in the states.
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Hi Cliff,
I would recommend you take a step back and review once again all of the treatment options available to you. It sounds like you haven't gotten a complete picture of the radiation alternatives and the various pros and cons of radiation and surgery. I had a much larger tumor than yours and spent a good bit of time consulting with doctors and doing research. I've written about that process in my website below (in my signature line). Many people choose surgery but many people also choose Gamma Knife or Cyberknife for a pea-sized AN. Radiation gives you a better shot at preserving your hearing and virtually eliminates the risk of facial nerve injury (which can result in facial palsy or paralysis). The good thing about ANs is that they generally grow quite slowly, so have plenty of time to investigate your treatment options, speak with many doctors and former patients and get comfortable with a treatment decision.
Best regards,
Francesco
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I can't add to the wonderful advice you have gotten so far, but I wanted to welcome you to the forum. I, too, have documented my "journey" on a website (address below) if you feel the need / want to read it. I'm with others that it seems like you haven't been given the full array of options including radiation. If that option is available to you (it wasn't for me), then you should explore that option fully and talk to a radiation oncologist familar with CK, GK, etc..
Radiation gives you, in my layman opinion, the best chance for a quicker less complicated recovery. Don't get me wrong, you can "recover" to "normal" with sugery but it may just take longer. But, it may not be as long as you think. It really depends on many things, not the least of which is the experience of the surgeon and how well the patient recuperates after surgery.
Thank you for your service and welcome to the forum.
Regards,
Brian
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Hi, Cliff and welcome.
Hawaii, huh? Hey, listen if you need help post treatment, I could really use a vacation ;) :D
Okay, getting serious now . . .
I had the option of radiation or surgery and chose surgery (retrosigmoid - behind the ear). But that was my personal choice - and everyone is different - so you need to decide what is right for you. With an AN your size, as others have already pointed out, radiation would be an excellent choice.
Your comment about having to have surgical removal "eventually sooner or later" puzzles me. If you chose radiation and your AN stopped growing, there is no reason it would have to be removed. If you had regrowth, which does happen but not a whole lot, then you might have to have surgery - but typically it's not a requirement of radiation patients.
Jan
PS - thank for being in the military and protecting the freedom of people like me :)
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Cliff,
It sound like you have the the same feeling I had when I heard I had a tumor. I really wanted it out of my head and not a dieing mass left from the radiation. My one year MRI showed something 3mm large where the tumor was (it could be scar tissue or the tumor growing again) so I have been doing alot of thinking, if I have to do something again I will probably go with GK or CK. I'm not sorry with the choice I made but I don't think I want to do it again. As you said the Drs here are very good and health care also. All total I have lived in germany 23 yrs.
LORI NAVY- - NASHVILLE ???????
Dan in Germany
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Cliff,
I think what many of us are saying is that we want to make sure you know you MIGHT have options, depending on size, location and symptoms.
Hang in there,
Dana
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Hi Cliff and welcome to the Forum,
Sounds like you are getting a nice cross section of advice. One of the many frustrations with this disease is having to figure out the best option of treatment for you. Unfortunately none of us has a crystal ball to see what our outcome would be with each treatment. Would that we could. So, you have to look at your situation, your age, your basic gut instincts, your medical options for doctors and learn about the procedures and then come to some kind of decision. Not easy, is it! We sort of all wish there was just one way to treat this, but there isn't. Some people don't get diagnosed until their AN is quite large, and then they usually have little options. Since yours is small, you have options. You have to hassle with military doctors, though, and I don't know how that works for you. I mean, if you wanted to do CK with Dr. Chang at Stanford, would they let you do that? Could you pick the doctors at HEI in Los Angeles if you wanted or do you have to go to a military hospital? I'm just curious.
My nephew is in Hawaii at the moment. He is in the Marines and is at Ft. Smith. He will be leaving soon and is heading back to Okinawa, which he loves. He likes the beaches there and doesn't like living in expensive Hawaii, so he is happy to return on Okinawa.
Anyway, I hope everything goes smoothly for you. And, yeah, I think your combat days are over, which, as far as I'm concerned, is a good thing. You certainly don't want to have to turn to somebody and say, What? after they have said, DUCK!.
Hang in there,
Sue in Vancouver, USA
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LORI NAVY- - NASHVILLE ???????
Dan in Germany
Dan,
That's exactly what I said! Well, maybe a few more "colorful" words as well! I'm still looking for the ocean around here! What are the chances I'd marry a sailor and wind up living in Upstate NY and Nashville?
Lori - landlocked in TN
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Well I have been doing my own research and reading about my options, I see my doctor tomorrow morning and after that we schedule surgery for next month. I'm not sure if i will be able to leave island or not for surgery, military is picky in their own ways. I have read about the other options of surgery since my tumor is small and i will bring it up to my provider here in about 45 minutes when I go to see him. I guess my biggest thing is will I be able to continue to serve or not, from what i am hearing (no pun intended lol) I will most likely get discharged because I can't hear anymore. Be back later with more news...
Cliff
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Aloha Cliff and welcome! My bad for not chiming in sooner........ but good to have you here.
Well, honestly... I can't chime in any better than what has already been shared with you. A small AN, such as your's, is definately a candidate for both, radiation and microsurgical. Regardless of what you decide, we are here to support you. there is a wealth of info here regarding all forms of treatment options... heck, there are folks here with AN's possibly larger than your's (since we don't know exact measurements of your's) that are in Watch/Wait... many doing so for years. Either way, please take your time to do your research here. This is a wonderful place where true patient-to-patient support exists (ie: sharing of experiences, research, knowledge and watered down drinks).
glad to have you here... again, welcome.. and btw, I just ran out of Hawaiian Peaberry coffee, in case you spot some! Mahalo! :)
Again, welcome!
Phyl
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Aloha,
Well again I saw another doc telling me the almost exact same thing I have heard so far about my options and all. I did talk to my provider this week and I received bad news that I will be discharged from the service after rehab from surgery. My tumor size is about 1 1/2 cm big from what I saw yesterday on the MRI with the Doctor.
Cliff
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Hi Cliff.
I'm sad to hear you will be discharged from the service. I truly hope you will find something else meaningfull to do in your professionel life.
Not only do you have this disease to think about, but you also have to find another job. Bummer :(
At least the prognosis is good, and if the tumor is medium sized as yours, there is a very good chance that loosing hearing on one side and some balance as well will be your only problem. Please continue to search this forum and you will find lots of good answers to almost any question, and you will find a lot of positive angle stories.
I wish you good luck,
best regards, Kenneth.
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Bummer about being discharged after rehab. As if you didn't have enough to worry about.. I'd like to re-emphasize that with that size, you should explore the option of radiation. Typically the absolute cut-off (in most cases) is about 3cm, so you're well within the acceptable size limitation.. Now, it's just a factor of a) location of the tumor, and b) some people just want the darned thing out and radiation doesn't provide that option..
I wish you well in your quest for answers.. Keep us updated.
Regards,
Brian
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I am of course not a Dr but I don't understand how they know before surgery that they will have to discharge you. Do you have that much hearing lose now. There are alot of people that have surgery and have no more problems after surgery than before.
Dan in Germany
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Hi Cliff,
I'm sorry I'm late in coming to this thread -- I haven't been on much lately. Welcome to this forum, I believe you have and will continue to find it a wonderful source of information, compassion and a good place to vent when you need to. I'm sorry to hear that you have an AN that even more sorry that it is having such a huge impact on your life and career of choice. With regard to treatment choice, I know you got a brochure about the ANA, but if tiy don't already have it too, I would suggest you requiest the information packet they offer. It is full of information about what you are going through and treatment choices in very plain language which I found very helpfull and think you will too. As many of my fellow forumites have already said, unless the location of your AN dictates otherwise, you are probably an excellent candidate for radiosurgery, if you are interested in it. My AN was small and I had the option of radiosurgery, but for many reasons opted for surgery. I had a very good outcome, but as you have heard from others, there are no guarantees, everyone's experience varies at least slightly. Surgical outcome depends on the experience of your siurgeons, size and location of your tumor and how sticky it is. Deciding on treatment is, in my opinion, the most difficult part of this journey. I wish you luck in making your decision -- please keep us posted.
Best wishes,
Wendy
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Hi again,
I'm sort of surprised that both doctors said that surgery was your only option. My AN was 2.5 cm and I successfully had Gamma Knife. Again, as everyone has noted, it depends on location and other things besides size; on the other hand, because ANs are rare, many doctors don't have too much experience with them and think surgery IS the only option.
Sorry to be so 'persistent' here, but I just want to make sure you get all the facts. Many people on the Board have sent their MRI (on a CD) to House CLinic in Los Angeles, who will provide some advice free of charge. I didn't do this, so I don't know specifics, but it's been mentioned many times on the Board. House Clinic is highly respected and very experienced in treating ANs.
Take care,
Dana
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Hi Cliff,
I just underwent the surgery in May 2008. I had a 1.7 cm AN on my left side. Surgery was Thursday and I was discharged the following Monday evening. As fas as the military I cannot answer any questions, but if you want to email back and forth I can share my experiences.
Best wishes
Tom
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Hello again,
Its been a while and i have been busy working hard, my unit ships out soon for Iraq not to mention training missions before all of that. anyhow.. I have been to the hospital numerous times now and have talked with my surgeon, I made the choice for surgery ( trans lab ). I have waited for some time now for surgery and the time has come so quickly already, 28 April is my surgery. I thank you all for the support and information I have received, I'll post again after surgery and let you all know how it went. I'll be in the hospital for a week after surgery and the I'll be on convalescent leave for about 30 days there after.
Cliff
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Cliff, Hello again, and i am glad to see you are posting on the Forum!
May i suggest you put your surgery date on the AN Calendar?
Here is the link: http://www.my.calendars.net/AN_Treatments
I can do if for you if you like, just let me know.
I remember reading your story before and was hoping that you wouldn't have to give up your career because of the AN....
But people change careers all the time, so onward and upward with the new challenge!
My thoughts and prayers are with you during your surgery and post op next week.
Will anyone post an update for us on the Forum? If there is someone who can send me an e-mail, i will be happy to post for you.
You can find my e-mail address under my profile.
May God watch over you next week.
Sincerely,
Sue
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Cliff,
Good to here from you again, and to here that you have a date not to far out.
GOOD LUCK!!
Dan in Germany
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Hi, Cliff:
Many good wishes and prayers for your upcoming surgery. I've entered your surgery date on the online 'AN Treatment calendar' http://my.calendars.net/an_treatments/d28/04/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d28/04/2009?authenticate=&display=M&style=B). Feel free to add details.
Jim
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Hey, Cliff. It has been a while; thanks for stopping in ;D It's nice to hear from you again.
Best wishes for a highly successful surgery. My thoughts and prayers are with you.
I'm confident things will turn out well for you.
Please keep us updated on your recovery.
Jan
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Hi Cliff.
I wish you luck.
Kenneth
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My thoughts and prayers are with you for successful surgery tomorrow. Please post as soon as you can.
Grace
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Hi Cliff,
Have been thinking about you and wondering how your surgery went...
Hope you are feeling better real soon and can send us an update.
My thoughts and prayers are with you.
Sue
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Hello everyone! I am back !!! :P
I was discharged from the hospital Saturday afternoon, my surgery was Tuesday Morning 11 hours long. I was told my recovery has been going quiet well with the way I have been responding as a whole. 3 days after surgery I was walking already, the next day i was doing some stairs. I have no facial issues nor balance issues, yeah my left side is now completely closed for good and the incision area is quite small. I have small issues so far with walking, too far or in the damn heat out here in Hawaii lol.
Morphine was my best friend for about 3 days after surgery before i just really didn't need it. I take Tylenol 3 now and children's Tylenol for smaller versions of throbbing pain when they come about. I want to say thank you again to all of you for your support, now I am looking forward to learning about whats in store for me ahead. ;D
Cliff
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Hi Cliff and welcome back! I have been wondering how you were getting along way out there in the land of paradise ;D
Everything sounds like it went pretty well for you - wow, 11 hours of surgery and you are back posting on the forum, walking, etc., etc. EXCELLENT!
I wish you continued healing and a speedy recovery!
Sincerely,
Sue
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Greengiant71
Hooah! I'm curious... did you have your surgery at Tripler? Or did Tricare allow you to go to a civilain hospital? I use to do a lot of construction work at Tripler...
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Hey, Cliff -
Glad to see you back so soon ;D
No facial or balance issues is pretty darn good in my book. Sounds like things are going well for you.
I envy you the damn heat, though. Here in Illinois, it's just started to warm up after several weeks of rain and not-so-warm temps ::)
We'd welcome a little heat.
Jan
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Hi Cliff.
I am happy to hear that surgery went well. I wish you a speedy recovery. Just remember to take it slow once in a while ;)
Best regards, Kenneth
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Cliff, I could not be more thrilled to hear your news. Congratulations on such a successful post-op period!
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Hi Cliff,
It sounds like things went extremely well for you! I don't think anyone can tell you for sure what's in store for you over the next few weeks since everyone is different, but based on your great attitude, I'd say you are going to do just fine :).
Ernie
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Cliff:
A successful surgery and what seems to be a very good recovery...and you're in Hawaii! What more could anyone ask? :) Thanks for the positive update. You've encouraged many, today.
Jim
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Hey Cliff,
I am in the Coast Guard and having my surgery tomorrow. I have also lived in Hawaii, my daughter was born at the Queen's medical center. I have been told that you can have your procedure done anywhere with prior approval of course. As far as expense goes since you are on active duty the military is on the hook. Keep us posted and if you have questions please ask.
Brian