ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: mmilazzo on June 10, 2015, 06:44:08 pm
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New member here. Found out I had a tumor on my brain on Friday, and I met with the neurosurgeon yesterday. It's a 3.2cm AN on my left side. I don't know the exact dimensions, but it was something like 3.2 x 2.8 x 2.3. I know both of the second numbers were 2cm.
Anyway, here's my history: I'm a 34-year-old woman. I noticed that I couldn't use a phone in my left ear a few years ago. I went to the ENT like two years ago, and he didn't think it was noteworthy. He did tests, and yes, they found my left ear was slightly worse than the right, but I could live with it. He didn't recommend or even mention an MRI.
Fast forward to about ten months ago. I started getting dizzy and my legs were getting weak when I stood up (not all the time, but really only when I stood up). The symptoms started to get worse. The progressed to severe head pain, ringing in my ear, blurred/double vision, feeling like I was going to faint, and numbness in my legs. But this would only last for a minute or two. And this was still only happening when I would stand up (and only sometimes). Then I had two severe episodes. For one, I couldn't really see for about an hour and I had a floater in my vision. For another, I couldn't see for about an hour, had a floater, and had a severe headache that lasted way longer for a minute. I finally took some aleve, and it went away, and then I felt weak and confused the rest of the day.
That's when I knew I had to go to the doctor. Doctor thought it was orthostatic hypotension. He referred me to an eye doctor and cardiologist. The eye doctor found blood spots behind my eyes. He said I had retinal vasculitis (an autoimmune disease), and that it was probably the reason I was getting dizzy and it could be all over my body. He said I needed to see my general practitioner immediately.
Next day I saw him, and he ordered an MRA of my neck and head. Well, I knew something was wrong when the next day after that, his office called me and told me I had to go in for an MRI of my head immediately. But because of HIPPA, they couldn't tell me why. I was a nervous wreck of course.
So that's how I found my acoustic neuroma, who I call Louie. The neurosurgeon says that nothing is an option except surgery. I've already lost some hearing in my left ear. My neurosurgeon referred me to a neurotologist who will also perform the surgery with him. That appointment is on Tuesday, and he will check my hearing. The surgery will not happen for a month or two--the two doctors need to coordinate.
I know people get tons of second of opinions, but I really had a good feeling about my doctor, Melvin Field (Central Florida). He spent so much time with me explaining everything. I like that it is done with another surgeon who specializes in the ear part. It makes sense. But I also feel like people are pressuring me to shop around. I just want to get the surgery over with. And I feel good about Dr. Field. Is that wrong?
Here's my main concern: facial paralysis. And just that it seems like a pretty scary surgery in general. I mean, it's brain surgery, right?! My doctor said it was like the Algebra I of brain surgeries -- not as simple as addition or even division, but not as complex as Calculus.
I don't think I have any particular questions. I just want to share my story. I am very very very very scared.
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MMilazzo,
I can't say I know exactly what your feeling but I just went through the surgery and things turned out very well. Mine was also on my left size and was quite large.
It was a bit scary for me too although it helped me not to focus too much on the negative stuff. The day before surgery my wife and I went to a movie (Mad Max, horrible movie) but the movie did provide a bit of a mental escape.
I was in hospital for 5 days, 3 of which were in ICU. I don't have too much advice specific to that but I would say that having a friend/relative/spouse in the room with me was very calming, hopefully that is an option for you.
I started physical therapy and occupational therapy right away which really helped with the recovery as it gives you something else to focus your energy and thoughts on.
I think everything will go just great for you, keep up your positive attitude and perhaps you should give Louie a middle name just to be funny!!!
Best of luck! ;)
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Thank you!
It makes me feel better to read everyone's stories. I know I am not alone. My mother and father live in Central Florida, too, and I am certain they will be there most of the time, along with my live-in boyfriend. I was a pretty active person before this -- an avid runner and walker, particularly with my five-year-old labradoodle (who needs tons of exercise). I'm hoping that may help a little with recovery re: balance.
I also think the thing that will really get me through this will be the company of said labradoodle. :)
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Be careful of being told what you want to hear, and/or hearing what you want to hear. Your Drs. could very well be the perfect team for you. But, the idea that this is the Algebra I of brain surgery I think is incorrect. I have been told by two neurotologists, and a friend who is a plastic surgeon who specializes in facial reconstruction including nerve grafting/repair etc. that this surgery from a difficulty standpoint is significant. One neurosurgeon I spoke with in a consult told me that this was the single most difficult brain surgery to perform.
I don't think you need to be freaked out about all of this, and it wouldn't do you any good anyway. Thousands of these surgeries are performed with good results. But, this ain't no gall bladder they are taking out before they hit the links for a 10 AM T-time.
I would get a second and even a third opinion. Those other opinions could very well confirm that your current team is the correct choice.
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I think the surgeon was trying to not freak you out but I do think that it is incorrect to state that it is not that complicated. Actually it is a little condescending. This is a big surgery and you should be prepared for all of the potential complications and recovery issues. But you can handle it. No need to freak out.
I think you should get a second opinion. This is just too serious not too. Make sure you ask them how many AN surgeries they do each year.
I think the thing I wish is that I was better prepared for the aftermath. I thought that there was no way I would get facial paralysis but I did. I have about 75% movement now. I also thought that my balance would be fine. It was not at first but now is 90%. I also did not anticipate that running, as I did every day prior to surgery would not be possible . The jarring is not good for my head. I don't know what it is but I just can't do it. But my life is good!
You will get through this just fine.
Good luck!
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Thanks for the advice.
After doing research, it seems like this doctor is THE doctor in Central Florida for acoustic neuroma surgery. It's his specialty. I'd love to talk to someone from Orlando who had the same surgery to see if they were treated by another doctor, but I don't know anyone. I emailed the guy who apparently is the leader of the ANA group in Orlando, and he hasn't emailed me back. I wouldn't know where to begin to even look for a second opinion. The few neurosurgeons here do not even list acoustic neuromas as their specialties. Dr. Field does.
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I guess I would also like guidance on exactly what I would be getting a second opinion on. I think we can all agree that any neurosurgeon will recommend surgery in my case. And no surgeon I see is going to say that he or she is bad at what he or she does or that he or she hasn't done many of these surgeries.
The one I saw told me he had done hundreds and hundreds. Whether he thinks the surgery is Algebra I of surgeries is relative. I don't even know if he said it was the Algebra I of brain surgeries of Algebra I of surgeries in general. I'm sure there are more complex spinal surgeries out there.
So what I would be going on would be 1) convenience and 2) warm fuzzy feelings. Convenience--well, the hospital is five minutes away from my house and so is his office and the neurotologist's office. And I did get the warm fuzzy feelings. So I guess I just don't see the point in getting a second opinion.
The tumor needs to come out. Period. I cannot travel out of state for the very best in the country or even the world. So I am limited to him and probably one other neurosurgeon that is 45 minutes away from me.
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I guess I would also like guidance on exactly what I would be getting a second opinion on. I think we can all agree that any neurosurgeon will recommend surgery in my case. And no surgeon I see is going to say that he or she is bad at what he or she does or that he or she hasn't done many of these surgeries.
The one I saw told me he had done hundreds and hundreds. Whether he thinks the surgery is Algebra I of surgeries is relative. I don't even know if he said it was the Algebra I of brain surgeries of Algebra I of surgeries in general. I'm sure there are more complex spinal surgeries out there.
So what I would be going on would be 1) convenience and 2) warm fuzzy feelings. Convenience--well, the hospital is five minutes away from my house and so is his office and the neurotologist's office. And I did get the warm fuzzy feelings. So I guess I just don't see the point in getting a second opinion.
The tumor needs to come out. Period. I cannot travel out of state for the very best in the country or even the world. So I am limited to him and probably one other neurosurgeon that is 45 minutes away from me.
What is your point? You asked about something you have made your mind up on and now want to argue about it? Please, by all means believe someone who tells you they have done "hundreds and hundreds" of them and that this is 9th grade stuff like Algebra I. Good luck with that. I won't be answering any more of your questions that's for sure.
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Hi all,
I would like to make a suggestion here. When someone is newly diagnosed, such as mmilazzo, the tone for which we made our thoughts made really needs to be a bit more compassionate. It is a daunting experience, as we all know, to be newly diagnosed and have to figure out what to do.
We need to keep in mind that each AN journey is unique for each of us. Geography, medical insurance coverage, thought processes are all unique. Yes, we highly tout getting a second opinion as surgery for an AN (or for any major medical issues) is crucial to our decision making process.
How we share our thoughts here is also crucial.
Although we may be passionate about how we feel about a topic, I remind everyone to keep it respectful!
I will be watching this thread. It is an important discussion that any newly diagnosed AN'er can learn about.
Now back to your regularly scheduled "respectful" discussion!
Phyl
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I was just trying to share my story. Sorry if I seemed like I was being argumentative, but it is frustrating trying to figure out all this stuff, and I actually do not know what to get a second opinion on here. I thought this place could be one where I could share anything, but I guess I was wrong.
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Hello MMilazzo...
First of all, let me say we all understand what you are going through and how overwhelming this diagnosis can be. Maybe we could just hit the "reset" button and start over. I would hate to see you miss out on the valuable input you will have from this forum. No matter how much reading and research we all do, there is more to be learned from the personal experience of others.
As for me, what I have gained here is beyond price...learned about doctors, symptoms, treatments, results and personal angst regarding this little demon we are dealing with. Make no mistake, it truly is a different journey for everyone. Just like in any large "family" people are different and express their emotions differently....but one thing in inherent in all of our members, they understand and care about your experience and are trying to be helpful. As has been mentioned,
"respect" in the way messages are posted is paramount. Such a sensitive subject that leaves feelings exposed and raw, deserves an additional degree of compassion. Please do not withdraw your presence from the forum....ask what you need to know and take from the replies what is of value to you. Believe me, whenever you feel so alone in this walk, here, in this place, you will find that you are among those who truly understand and will share their walk with you.
Wishing you the best...
NYL
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You are going thru a scary time and wanting to make sure one is getting the best treatment can be hard even if one has a dr who is well qualified. I would make sure that your dr has done hundreds of ANs and not just 100's of various types neuro surgeries, Drs who do many surgeries can think of the condition as routine and will have a protocol he knows well. But a patient does not have this same feeling as it is their body and health issue and want to make sure all is being done right with someone with lots of experience. One can feel insecure even if it is a good experienced dr they are seeing. I am a retired nurse and been on both sides of this. I saw a very experienced neurotologist here in Iowa and he is one that people would come to for that 2nd opinion from even out of state. One can read on here from some to get a 2nd opinion but in some cases that is not needed. Others do need to have that done as ANs are not a common tumor and a very experienced dr is needed. You can see several drs and they may all have different opinions on which type of surgery to use, do wait and watch for a time or go for radiation. You have to go with your own gut feeling that you are comfortable with. This is not always the answer someone may want as they would rather have someone else make the decision for them. The closest dr may not always be the answer unless they have LOTS of AN experience. I wish you well. Cheryl R
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Thanks.
Since everyone is an advocate of second opinions, can someone tell me exactly what I would be getting a second opinion on here? I genuinely am interested.
Would the second opinion be that my tumor may in fact not be a tumor nor an acoustic neuroma? If so, then yes, I agree, I should get a second opinion. I will prepare my results and send them to the House Clinic, and that should confirm that it is an acoustic neuroma or not (seeing as though I will have my neurosurgeon diagnose it as an AN plus my neurotologist--so that's two professionals already). But I in no way want to travel to get brain surgery to be far away from my friends, family, and dog--that is the one thing I will not sacrifice. AND I cannot afford that AT ALL. So actually going anywhere else but Orlando, Florida, is not an option.
So that brings me back to getting a second opinion on the actual people performing the surgeries. And while two people on here may not feel comfortable with the fact that my doctor made an off-the-cuff, trying-to-calm-me statement about the surgery being like Algebra I, it did not bother me whatsoever. I do not think the doctor minimized the surgery in any way during my visit. He was very real with me. The comment about it being like Math was something he said while we were leaving--it wasn't the way he presented the surgery. Him saying that is VERY relative. Just because one surgeon thinks something is the most complicated surgery ever does not mean that a good surgeon HAS to agree. I hate to compare surgery to my job, which is professional writing, but let me make the comparison: Where I work (a large financial industry), the majority of people think writing an essay, even on something on which they are an expert, is one of the HARDEST tasks that they will ever have to do. I, on the other hand, think it's way easier than, say, Algebra I, which is actually very challenging for me.
We all know that the size of my tumor does not make it a candidate for radiation. The only option I have is surgery. Since I know Dr. Field is very experienced in removing acoustic neuromas (yes, I specifically asked him how many acoustic neuroma surgeries he's done--not just brain surgeries--and, in fact, he has been doing them for a LONG time--I found a post from years ago on here from someone who highly recommends him) and does so with a team, including a neurotologist, and also is part of ANA, I do feel he is qualified enough. I will get the free second opinions from the famous teams who are known for this surgery in the United States, but I do not see that, if they still believe surgery is necessary (which I'm sure it still will be), making me change my mind about the neurosurgeon, even if I have only seen ONE neurosurgeon and ONE neurotologist.
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Hi mmilazzo .....
The users on this forum who are post-treatment for the most part are here to share their experiences ..... not to try to persuade a newly diagnosed patient what he/she should do.
In looking over your posts, you seem to be very comfortable with Dr. Field, both in terms of his experience and his bed-side manner. These are the most important things to consider in the decision-making process. There is no particular need for a second opinion unless in your gut you are uneasy and want some confirmation.
One reason some patients want a second opinion is confirmation about the surgical approach suggested if their hearing is still intact. Retrosigmoid and Middle Fossa approaches offer some hope of saving hearing, whereas the Translabyrinthine approach will automatically result in total deafness in the AN ear.
You are the one to call the shots here ..... not your doctors, not your family, not any user on this forum, not any well-meaning friends, etc. ..... it is your body and it should be your decision for what you do. I think you are on the right track and just keep planning on what feels right to you.
Thoughts and prayers.
Clarice
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Thank you. I am sorry I am being so blech about this. I don't mean to. Thank you, everyone, for trying to help and providing support. I appreciate it.
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Hi mmilazzo,
Clarice has really given you some excellent advice!
Second opinions often help one decide on which surgeon has the best skills, the one we feel the most comfortable with, and for learning about the different options available to us. While Retrosigmoid does offer some hope of salvaging your hearing, it also runs a higher risk of post op headaches and comes with a greater risk for facial nerve paralysis than the Translabyrinthine approach. Knowing what risks you face based on the size of your AN, and the options presented to you is important, and your surgeon should be making all risks very clear.
It is wise for newly diagnosed patients to take time to learn as much as they can about these tumors and not jump or be pushed quickly into treatment choices. Finding a surgeon you are comforable with and one with extensive experience operating on AN's is most important. The decision is truly a difficult and personal one to make.
Cathie
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Hi mmilazzo and welcome,,
We are here for you and welcome your questions during this very difficult time in your life. You have been thrown "a curve ball" and must decide how to hit at it.
Thanks too to Phyl for the usual wise and reassuring post to let us all know we are being monitored and will be corrected when needed!! I was trusting you would intervene!!
As several have said, the second opinion that we are recommending is to sort of justify or verify to you that you are making the best decision for YOU,, because as has been said, this is your decision that you will have to make and then be comfortable with results after treatment.
Usually we recommend sending MRI and info to one of the Drs who do MOSTLY this type of surgery and are VERY familiar with these tumors so you can hear their take on your situation and you can gather even more perspective on your situation. I know you say you won't travel, and that's fine. I sent my info to House clinic also not intending to travel out there, but to make sure the Dr there "agreed" with what I was told locally. I had a Dr locally who told me "sure, I've done more of them than I can count" (wasn't sure if he meant on two hands or what :-*) ,,, but I realized very quickly that I did not want to use him because of his arrogance! I knew there was no way he had done THAT many in this area since they are so rare..... Anyway,,,,,,,,,,
Are you close enough to Gainesville, Shands Hospital I think it is,, to consider them?? They have very experienced Drs there I understand also. May be able to talk to them also if you like.
Take your time and research a little on here and see what you find. If you are comfortable with Dr Fields,, that's great,, that's what you need us confidence that you have talked to enough people to know its right. Nobody is judging you on here! Please stick around and ask more questions,, if someone doesn't want to answer,, they are certainly welcome to pass on to the next subject,,,, but there are those of us who will answer if we can.
Sorry this is so long,,,,,but best of luck to you and please let us know how your journey is going and how we can help!!
Jane
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Yeah, Gainesville is too far away. I cannot imagine driving two hours home after brain surgery. And I cannot imagine driving two hours for follow ups either. That would also mean that my parents and boyfriend would need to get a hotel room or something up there for however long. It stinks, but we do not have a lot of money, so that is out of the question. And maybe I am weird for thinking this, but I would rather be around my friends and family while in the hospital than travel somewhere that is famous for this surgery and be terrified and alone. That is my risk that I am willing to take.
I'm going on Tuesday to meet with the neurotologist (Dr. Patni) who will also be performing the surgery. He will be giving me an audiogram (is that what they are called?) to find out exactly how much hearing I've lost in the my left ear. Once I have that, I will send a copy plus my MRI to House.
As for Dr. Field, he did tell me he has done HUNDREDS of acoustic neuromas. I did some searching of this forum, and two people have used him and were very happy. One of them was back in 2007. So I am guessing it is possible for him to do hundreds, as it looks as though 2007 was around the time he has moved here. So he's been doing these surgeries in the Central Florida for eight years, which also means he has been doing them while it seems a lot of innovative and new techniques have come about.
I also saw that Dr. Field and Dr. Patni talked to the local Orlando Acoustic Neuroma Association support group in April, and I contacted the co-leader of that group, and she said she really liked them. She is doing her surgery up in New York, however, because her family is up there.
So all this makes me feel a little better. I'm still scared to death. I am definitely more worried about preserving my facial abilities rather than hearing, and I will be discussing that with Dr. Patni on Tuesday. This forum has been very helpful, because I feel like I have a better idea of what I need to be asking. So Dr. Patni needs to be prepared to be grilled. :)
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Hi mmilazzo .....
Just FYI in case you have not seen it ..... the ANA web page has an excellent list of questions for physicians. You might want to look at it or print it out before your appointment with Dr. Patni on Tuesday.
https://www.anausa.org/pretreatment/questions-for-your-physician
Many thoughts and prayers.
Clarice
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Hi, mmilazzo!
I won't tell you not to be afraid, because, here I am a few months past diagnosis with a much smaller tumor and I've run the gamut of emotions in that time. I will tell you what I tell myself: as far as mortal danger goes, it was statistically higher when I had my gallbladder out last year than with this surgery.
Unfortunately my symptoms are disabling pre-treatment, so I'm a bit terrified of post-treatment symptoms.
Like you, I am not seeking a second opinion. I knew what surgical option I was picking before I ever saw a neurotologist. I have pondered changing surgeons, but only because he is very concerned with preserving my hearing where my preference is preserving the facial nerve at all costs. But he did admit that it was *his* hangup, and my decision was entirely reasonable for my circumstances. So hopefully he is as "on board" as he seems to be. I'll see how I feel after my July MRI and appointment.
However, I can see why it would be recommended to go to the *best* surgeon you can reasonably get to. Complications from this surgery can have deep, life-long consequences. It can necessitate multiple surgeries, which is usually more expensive in copays than a brief hotel stay for loved ones. Two hours is not very far. I know, in Florida it seems like a lot. I lived there for most of the first 34 years of my life. I barely saw most of my extended family because they lived 40 minutes away and no one drives that far except holidays. Now I live in Michigan. It's 1.5 hours to the closest Neurotologist. 3 hours to the next closest. I feel lucky there's one so close, actually! I did not except Grand Rapids to have an AN specialist, I really expected Detroit or Chicago to be my options. Ann Arbor at the closest. So if you hit a point that you *don't* feel comfortable, I hope you'll consider going outside the immediate area. And I'm glad you're sending info in to match opinions about surgical options just so you have the two to compare.
I hope Dr. Patni is exactly all you're hoping for in a surgeon and is able to ease your fears. :)
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I wasn't sure how far Gainesville was to your area. I will say I drove 4 hours home from surgery and although it was not the most comfortable situation, it is "doable"..I only have to go back annually for checkups and MRI. IF , and it has not been often, I need to see a Dr. I either go to local ENT or primary care Dr. But anyway,,
Another question I would ask Dr. Patni and Dr. fields, before surgery is what will they do if they get in there and the tumor is "stuck" to the facial nerve? Will they attempt to peel it away and hope not to damage facial nerve or will they cut it away and leave a sliver of tumor stuck to nerve as not to damage it and recommend radiation later to "kill" remnant. There is no way, to my knowledge, to know until during surgery how "involved" the facial nerve is..like you,, I too told Dr I wanted to save facial nerve over hearing nerve,, however, when they got in there the tumor had grown through the facial nerve therefore necessitating severing my facial nerve in order to remove total tumor. I tell you this not to scare you or make this harder for you but to give you more info to ask about. I woke up with total facial paralysis as a result but it's not the end of my life,,although I thought it was at the time!
It has been a long journey for sure and one I wish I had never had to go through...NONE of us wanted this. The best you can do for yourself is to ask everything you can think of to help you feel comfortable and confident. It sounds like you are trying to get there. Good luck next week.
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Yes! This is all good. Dr. Field already told me that if the tumor is stuck to a facial nerve, they will leave that part in there to limit facial paralysis. Then we wod do gamma knife. Now that I know more about ANs (I didn't know what type of tumor it was when I had the appointment), I am going to emphasize that this absolutely has to be priority #1.
I had my gall bladder taken out years ago, and i, too, read that gall bladder surgery is more life threatening than this, but yes, there seems to be way more complications with this one, and obviously recover is much longer and harder.
If I do not feel comfortable with the neurotologist, I will definitely be calling Shands!
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Are you starting to feel better as you learn more? I hope so. :)
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Yes, but I saw the neurotologist today, and he thinks it's an epidermoid tumor. I am sending my MRI and audio test results (I have barely lost any hearing) out to USC for a free consult.