Anyone willing to share their experience?

[micca82]

Hi,

I've posted here before, and your replies really give me lots of strength. (Thank you)

I'm a 29 year old female diagnosed with 5cm AN on left. Surgery is scheduled with Dr. Tamargo at Johns Hopkins with Dr. Francis (ENT)'s help for 4/5.
When I spoke to Dr. Tamargo, he scared me to death. My husband kept telling me he was just giving me the worst case scenario, but they sounded too real to me.
When I met with Dr. Francis (ENT) next week, I felt more comfortable (because he sounded more 'human', I guess)

I am not so sure if I feel so comfortable with Dr. Tamargo. He sounds like a person that he would chop off any nerves that's infected with AN and that I'll have (permanent) facial paralysis due to its size. He really scares me. Dr. Francis (ENT) on the other side told me they'd do their best to preserve nerves. Everyone tells me Dr. Tamargo is the doctor to go to for AN surgeries, but I just don't feel so comfortable. I think with any surgeon, I will feel like this, but I just wanted to ask everyone if this feeling I'm having prior to surgery is normal and if anyone had an experience or heard of Dr. Tamargo.

If there's anyone that know stories of someone like me-29 year old, 5cm AN, I'd love to hear them. I know every AN and surgery outcome is different, but knowing the others' experience really help me.

Thank you so much for reading my post.

[Cheryl R]

Right now is a very scary time before surgery as many of us well know.      Some specialists do not have the best bedside manner but do their surgery very well.     It is not known until a dr gets in and sees the tumor exactly what damage it has done to nerves.            My surgeon is one when a facial nerve is severed does a nerve graft at the same time taking some nerve from by the ear and grafts in.      Not all surgeons do this and some do the leaving of some of the tumor and have the pt do radiation later if it does grow.        You can ask what their feeling in about this.         In my case I did get some movement back but not all.     My profile pic is after this surgery.   It did take several months for improvement and was told this ahead of time.    Every surgeon has their own way they have the most experience with.         Yours is a large tumor so it is hard to know how it is going to be post op.                One finds they do cope with it and in time will know more about what the long term is going to be.      You may have no problems,some for a short time or some permanent which then may need some surgery ti help fix it.     I wish I had the answer for you now.              Hang in there and know we are thinking of you and hope for the best for you!
                                                         Big hug,   Cheryl R

[Jim Scott]

Micca82 ~

This is my second post to you and I submit it because I can relate to your worries and concerns as you consider surgery and the 'right' doctor to perform that delicate surgery. 

When I received my AN diagnosis I was taken back but immediately jumped on the internet to research just what I had.  It didn't take long to realize that facial paralysis was a serious risk and one that I (naturally) wanted to avoid.  After an unproductive consultation with a local neurosurgeon (who seemed intimidated by the size of my AN) I was directed to a neurosurgeon in a nearby city (New Haven, CT) who had decades of AN removal surgeries on his extensive resume.  I was immediately impressed by this doctor's authentic concern for my quality of life, post-op as well as his obvious desire to see my large AN removed before it did more serious damage (it was severely impacting my brainstem).  He took my concerns regarding facial paralysis very seriously and when we met, he presented us (my wife accompanied me to the consult) with a detailed plan to (a) carefully monitor my facial nerves during the surgery, bringing in a highly experienced surgical neurophysiologist (from another state) to perform the monitoring  and, (b) debulking the tumor ('thinning' it) and cutting off it's blood supply, then, following a 90-day 'rest period', he teamed with a brilliant (in my opinion) radiation oncologist to 'map' 26 FSR treatments intended to destroy the remaining tumor's DNA and prevent it from ever being able to regrow.  Long story short:  the surgery was very successful.  My symptoms immediately disappeared and there were no complications.  Specifically, no facial paralysis.  I recovered relatively rapidly, driving again within two weeks.  The radiation treatments (3 months later) were uneventful with no ill effects whatsoever.  Unfortunately, I had lost all hearing in the affected ear before my AN diagnosis and that did not return after the surgery, nor did I expect it too, although the neurosurgeon said that it was possible, if not probable.  Today, I'm doing great and the whole experience is receding into the rear-view mirror of my life, as it were.   However, I remain an active member (and moderator) here to offer my experience to folks like you, who are just beginning your 'AN journey', in the hope that it will be an encouragement.  I'm not an anomaly because not every AN surgery ends with complications.   Lots of AN surgery patients do quite well.  You can find their stories on these forums.  Incidentally, I was 63 (and in good health) at the time of my surgery & radiation.  At 29, I'm sure you'll recover quickly from AN surgery.   Wishing you all the best.

Jim   

[ksiwek]

Hey!

As I mentioned in my email....please do give me a call today!  I found that prior to surgery it helped to talk 'live' to someone who had been through it.  You are not alone...we willl all be praying for you! 

Kris

[Tod]

Are you uncomfortable enough to consider trying to find another doctor? Or are you  simply, legitimately scared and put off by his bedside manner?

These are questions only you can answer.

I don't think I have ready anywhere about the location of your tumor. At 5.1cm, it probably doesn't matter ...it needs to be addressed. My tumor was slightly smaller, but I was told I had to have it addressed within three to six months or face coma and death due to its compression of the brain stem. Plenty scary, and every doctor I talked to said this and also this: three months is better than six months.

I was comfortable with the surgical team I chose. Very comfortable. That did not change the fact that I was scared almost as much as everyone else around me. My surgery ended being much longer (32 or 36 hours depending on the story) than anyone thought because of the location and quality of the tumor. And because my doctors did not want to give up until they felt they could accomplish no more without greater risk. I spent two weeks in ICU, one night in a regular room, and went home to recover for 10 weeks.

I had a number of deficits including facial and vocal cord paralysis, double-vision, and weakness and range of motion issues with my left arm and shoulder. As horrible as all that might sound, it simply wasn't so bad. Much of it has healed, or is doing so. It also had very little impact on my ability to live well and good this past year. In three weeks I will be hitting the trail with my scouts for 56 miles in the mountains - so I must be doing pretty well.

I've been extraordinarily lucky and have had a very unusual experience. There is no reason to think that you will not have as good or better an experience.

There is no question about the fact that this is scary stuff. Fortunately, you have found the right place to talk about it all.

-Tod

[james e]

Make another appointment with  Dr Tamargo, and discuss your feelings with him. If the hair stands up on the back of your neck during the visit, you need to revisit your decision about him being your doctor.

When I first visited with my ENT and neuro surgeon, I was full of confidence. The ENT decided radiation would be a better choice for me, and I met with the doctor who would be treating me. He scared the hell out of me. He talked around all of my questions rather than answer them directly. When I asked for more direct answers, he still avoided the questions, and they lost my business. I found doctors from other AN posters on this site, had surgery, and I'm a happy camper!

Dr Tamargo is probably a great doctor...these people have spent half a life time training to do this type of surgery. He may have just been warning you of possible out comes, and you may have locked in on the bad out comes...I really don't know what happened. You are the CUSTOMER here. You need to feel comfortable with the doctors and his team. Talk with him again.

[micca82]

Thank you all for replying to my post. As you can tell, I am in 'panic' about the whole surgery.

After reading everyone's comments, I'm convinced that I want to meet with Dr. Tamargo, but the problem is that he's not in town this whole week. When I met him in ER last weekend (went to ER not because of severity of symptoms, but when the radiologist saw AN and the size of it, she told me to go to ER that day), he wanted to schedule a surgery as soon as he gets back and that's how I got 4/5 date. (I was diagnosed on 3/18). While I was in ER, he just explained how I'll have facial paralysis (I heard it as a fact, while my husband said he was explaining a scenario that could happen), and other treatments that can remedy it (gold eylelid weight, plastic surgery, grafting nerves which he described as 'no good' pretty much) My body was shaking while he was talking to me.

When I met with Dr. Francis (ENT) last Tuesday, he told me they will do their best to preserve facial nerves. He told me the hearing will be sacrificed (I lost significant hearing on that side already).

I felt more comfortable after talking with him, but I have no idea who else will be there during the surgery to monitor electric pulses through my nerves, etc.
Maybe I should have asked for more details, but then I was in too much of a panic that time.

I feel really dumb not knowing all the details of my surgery. @.@

My head's telling me I should just forget about it and trust in the doctors. But my mind is so confused right now.

.....what should I do...

[Jim Scott]

Thank you all for replying to my post. As you can tell, I am in 'panic' about the whole surgery.

My head's telling me I should just forget about it and trust in the doctors. But my mind is so confused right now.

.....what should I do...

Micca ~

Re-read Post #5 (from James) because he makes some good points.  

You need to gain some control of your emotions and try to calm yourself enough to have another consultation with Dr.Tamargo, explaining your (very normal) fears and concerns and mentioning that he frightened you a bit and you really need some clarification of what he told you.  Be polite but firm in your need to know.  If the doctor seems put off and/or you still feel scared, you'll have to seriously reconsider employing this doctor.  One of the primary points we try to impress on folks like you that are newly diagnosed and planning surgery is that its imperative to feel both confident about and comfortable with the doctor you chose to perform this serious surgery.  I don't sense either of those things from your comments, so far. I suggest that you make a list of the questions you have before another consultation i.e. facial nerve monitoring, and approach this as intellectually as possible, not allowing your fears and negative emotions to control you.  It's too important to 'just forget about it and trust the doctors'.  Yes, you will have to trust the doctors but you have to do so based on knowledge and confidence in their skills and their desire to alleviate some of your concerns so that you go into the surgery with an optimistic attitude, as I did, not a frightened, deer-in-the-headlights attitude.  I can tell you that attitude does make a difference.  Simply allowing the doctors to make your decisions while you blithely accept 'whatever they say' can lead to some unpleasant surprises, later.  However, as I've pointed out in my previous post, many AN surgery patients do just fine.  Doctors have to offer 'worst case scenarios' to you as a matter of being completely honest but outcomes of AN surgery cannot be guaranteed, one way or the other.  Knowledge really is power, so please try to seek it here and elsewhere and do not be hasty in your surgery decision.  I wish you all the best and of course, I hope you'll continue to post your questions, etc here because we care about you and want to help as much as we can.  

Jim

[Cheryl R]

This a hard time for you and while most do have time to check all the drs, you are in a situitation that you do need to have the surgery fairly soon.                The surgeon will not know exactly what is the damage to the nerves until they are in there.      The size of yours means there may be more damage than someone with a much smaller tumor.     The location is also part of it.     There can be some effects post op no matter how experienced the surgeon is due to the tumor having already caused a nerve to be stretched or damaged.            I would guess that Tamarago possibly did say that it was a possible happening and not 100% for sure as you were under emotional duress.                        No surgeon can say ahead that there will not be this possible effect or that possible one no matter how much we do not want it to happen.        I have been thru facial paralysis twice as had it after my first surgery for 3 1/2 mos.       The 2nd time after the facial neuroma was over 8 mos and on for some time.     So I know hat a feeling it is to have ones face not be normal.                          If you are so scared of this surgeon,then you can refuse him to do the surgery.     That is up to you.                 The OR will be full of a whole crew of nurses,drs and all who is needed to take care of you.     There will be facial nerve monitoring.     The hearing is also monitored if a person is having the surgery type where they hope to save it,which is not your case.              I wish I could give you the answer of what effects your surgery will have.    I hope this is a worry for you that does not happen.                  My own personal opinion is that you are ok to go ahead with this surgery team.     But this has to be your own choice.           I am not trying to scare you more.              This year will be 10 yrs since had the first of my AN surgeries.    This forum was not here in this way and there was info seen that there is life after AN surgery.     I saw my surgeon in Aug and surgery was not till Nov 1 due to my husband being done with harvest time with his grain elevator job.     I couldn't have been a bigger basket case and scared and sure life would never be the same.         In time post op, I found it can be.  I was back to work as a RN in a smaller rural hospital in 2 mos.        In time I was found to have 2 more tumors due finding I was NF2 and tumors on both sides.            None were of the size of yours.              I did retire from nursing 3 yrs ago and have got to enjoy our grandkids.                              I am sorry this is so long but do know how scary it is pre op and want you to feel you you are using the dr right for you.                     Cheryl R

[CHD63]

This is the time when you need to have the utmost confidence in your medical team.  If it does not feel right, you need to get another opinion.  As Cheryl said, time is very important with the size tumor you have so it needs to be done soon.

I think you should see Dr. Tamargo again and ask lots of questions.  See:  http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116    Look under MICROSURGICAL REMOVAL OF ACOUSTIC NEUROMA for questions to ask.  Print them out and leave spaces between to write his answers (or your husband to write his answers while you listen).  If you are not completely satisfied, then it is time to go elsewhere.

Keep in mind that a tumor as large as yours has undoubtedly already compromised other nerves besides the auditory nerve.  As Cheryl said, even the best surgeons in the world do not know exactly what they will find until they get in there.  MRIs can only tell part of the overall case.  If it is a sticky tumor, the surgeon needs to make the decision during surgery as to how best to proceed for your safety and how best to try to preserve the function of all of the surrounding cranial nerves.  It ultimately is his call.

My prayers are for you to be at peace with the decisions made and to have confidence in whatever surgical team you employ.

Clarice