Very newly diagnosed - freaking out!

[lmsinwnc]

Hi everyone,

I'll try to get right to the point, as this will be a long post anyway. I was just diagnosed April 2, first consult with a local nuerosurgeon on April 8. My AN is left side, appx 2.7x2.9x3.1 and seems to require surgery... (translabyrinth approach?). I also have hereditary hearing loss (low tones) in both ears. Having said that I can still pinpoint when I had my first symptoms, but in the interest of saving space and actually getting anyone to read this post... I'll summarize by saying I've been experiencing a myriad of symptoms since winter of 2012 or 13. These symptoms started with hearing loss, progressed to facial tingling and multiple forms of worsening tinnitus and now disequilibrium.

Because of my hereditary hearing loss, I am desperate to find a surgeon who will do whatever they can to try to save whatever hearing they can in the ear. It is surely a long shot, but perhaps this cochlear or BAHA? thing could help too. And of course since I already have a tingling, sort of dull numbness in my face, facial nerve salvation will also be a major consideration. I am, needless to say, devastated.
 
I've spent most of the weekend looking at skull base surgery centers. I have no idea how to go about "choosing" a nuerosurgeon and accompanying team. I will also mention that while only one nuero suggested surgery and my initial research leads in same direction, I most definitely am looking for at least a second opinion.  For inexplicable reasons, I am terrified of the whole idea of radiation.  I would probably only pursue that if I had several opinions pointing m in that direction.  I was narrowing the "choices" down to Duke, Vanderbilt or back to Baltimore, but now having found this forum today wondering if I shouldn't consult with this House place in LA, that so many have used successfully. Of course there is a question of insurance coverage.

I am not really convinced that my tumor is all that slow growing, since I can clearly pinpoint specific changes in my symptoms both before and after hearing aids, so I want to get the surgery over with as quickly as possible and cannot bear the thought of waiting for a month to get in to see a specialist somewhere.  Also the nuerosurgeon I saw suggested I have my tumor removed sooner rather than later, as in the next month or two.

So I'm not even sure what I'm asking here... Maybe does anyone have any experience with Duke, Vanderbilt or Johns Hopkins?  Duke simply because it is "in network" and the biggest center here in North Carolina, Hopkins, well world renowned, etc and we have friends and family in that area and Vanderbilt as it is the only place I have any recommendation on (and that was not from an AN, but some other type of tumor.

Also the House thing seems more like a center (as opposed to a hospital?) and it seems almost like with the short stay post surgery, folks are sort of being pushed out the door.  I am thinking I would prefer to be absolutely certain it was safe to go home (i.e. a longer stay?) not that I like hospital stays or even have ever had one, but it's not like it is a simple surgery.  Additionally I would also like to consult with some sort of dr. about any potential implant options to help me hear!)/

Ok so I hope this is not too jumbled, as my thoughts certainly are.
Thanks in advance for any and all help! This forum has really sort of given me my first sense of breath since my consult on Friday and I am so glad to have found it. 

Lisa

[CHD63]

Hi Lisa and welcome to this forum .....

You have come to an excellent place for much support and shared experiences.  You are doing all of the right things to research as much as you have time and energy to do.  Each of us have unique stories to tell so your decision for treatment has to be based on your unique situation and your own inner belief on what is right for you.  If you have not already done so, please send for the free informational materials from the ANA.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy  This information will help clarify some of your concerns.

You can see by my signature I had my first surgery at Duke Raleigh Hospital with excellent results.  Unfortunately I was one of the rare ones to have my tumor regrow.  My second surgery was done by Drs. Rick Friedman and Marc Schwartz at House Ear Clinic.  St. Vincent's Hospital is where they do their surgeries and I will tell you they do not make you leave the hospital until you are able.  Dr. Friedman is now at USC in LA.  Dr. Schwartz is still at House.

You can also see that I have an Oticon Medical Ponto (bone anchored hearing system), which I love.

I would be happy to talk with you, if you would like.  Just send me a private message and I will give you my phone number.

Thoughts and prayers.

Clarice

[NEbluebells]

Lisa, I'm so sorry that you are going through this.  Big cyber hugs.  I just was diagnosed about a month ago, and although I haven't gotten treatment yet (scheduled for 12 May), I feel like I'm in a better place from the initial shock...so I'll go out on a limb and say that time has made it better. I hope you find the same.  I also didn't feel like radiation was for me (gut response). I found this webinar by Dr. Schwartz (scheduled to do my surgery next month) very helpful:  https://vimeo.com/90039040  It talks about the decision process.  I consulted with local team, a team one state away and finally the House. I am also anxious to get it out and move on with my life, and feel a lot better now that it is scheduled. I wish you peace.

[SP]

Hi Lisa,

I'm sorry to hear of your distress - it is a really tough diagnosis to receive and the myriad of information and opinions is also very overwhelming.
Choosing a treatment option and then the "right" team is indeed a daunting task and also a deeply personal decision. I had the same concerns regarding facial palsy and also maintaining (if possible) my hearing in the left ear (which was good at the time).

I also had (and still do) facial tingling from the left corner of my mouth right across the left cheek--this is controlled by a separate nerve from the facial nerve. See below:
Trigeminal nerve (5th cranial nerve) is the nerve responsible for sensation in the face (& biting and chewing functions).
Facial nerve (7th cranial nerve) is the nerve that controls the muscles of facial expression.

In the end I chose Cyberknife radiation for many many reasons, one being that ; the trans-lab surgery would result in 100% hearing loss in the affected ear and also,  the other associated risks of surgery seemed too great for me. With CK there was basically no risk of impact to the facial nerve (i.e. no facial palsy risk); as for what happens to the  numbness / tingling (as the trigeminal nerve is stretched across the top of my tumor) it remains to be seen as the tumor dies off.  I was surprised that I was a candidate as my tumour is large (3.2cm at greatest length); but basically the advice was "if I could live with my current symptoms long term , then CK was applicable".  If the presenting symptoms are too severe then CK maybe not an option.

It's good to take a breath (or two ) to consider your options & I wish you all the best in making this big decsion.


Stella

[michellef08]

Hi Lisa,
Being diagnosed is very scary, but we have all been there and gotten through! The best advice I can give is to do as much research, and get opinions from as many experienced AN teams as you can handle until you find a solution that feels right for you. Meeting with experienced neurosurgeons will help you decide what treatment is best for your individual tumor based on the size, shape, location, symptoms, risk factors, lifestyle etc.

I live in DC and had my surgery scheduled at Hopkins. However, upon further reflection, research on this discussion board and talking to local support group members, cancelled that surgery and flew out to California. I had Dr. Schwartz at House, and honestly believe it was the best decision I have ever made! He preserved my hearing (using the Middle Fossa approach, which is normally for smaller tumors), and I didn't have a single facial or balance issue! They definitely didn't kick me out the door - Day 4 post op- I was cleared by the doctors to leave the hospital, but because our hotel didn't start until the next day, we requested to stay an extra night (because I had my own room and lots of space)- and they had no problems with it at all!

Also - some portions of treatment at House was "out-of-network" for me at first, but I was persistent with phone calls and got it approved as "in-network". I didn't want my insurance coverage to dictate what treatment I got, as it was a major procedure, and my brain!

[lmsinwnc]

Hi everyone (again),
Just want to jump in quickly and say thank you. Also I apologize for freaking out, then not getting back on... I've been rather busy, as I had an unexpected visit from a very good friend from out of town, who arrived late Sunday night. From then on, I was thankfully somewhat distracted from all that is going on. I think there was a lot of pent of anxiety by the time I posted this late sunday.  We had seen the first nuerosurgeon Friday evening and then I couldn't really do anything else for the whole weekend and by Sunday, I was about to blow!    I did get started on the initial work to get referrals and such. I have ordered the materials from the ANA. I have also downloaded an AN publication from medifocus. And I am breathing again...
I also now have an appointment (4-22) for a consult at the Duke NueroSurgery Center, for a consult with a Dr. Secci?  I am now inching my way towards contacting the House Clinic. I think simply because of the number they do yearly, I should at least consult with them. And I am waiting to hear from John's Hopkins.
I'll repost soon and thank you again for each of you who have responded and pm'd me. 
Thank you again for your understanding... This whole experience is daunting and exhausting!

[areles]

hi, lisa.  i would just like to echo what others have reassured you of with respect to house, which is that they will not push you out the door, and in fact, won't let you leave until they're sure you're okay to do so.  my son was there for eight days, with his first followup scheduled for three days later - in his case, i suspect that if we weren't local, they would've kept him those additional three.

ultimately you have to choose the facility and surgeons with whom you're most comfortable, and those you've mentioned indeed have good reputations.  i just wouldn't want to see you exclude house, which is by most accounts the gold standard in this surgery, from your list of possibilities based on concern that you'd be booted out after, because you wouldn't.  i would urge you to send your films and hearing tests to them for consult, if for no other reason than to have as many respectable opinions as possible as you begin this journey.

by the way, my son's tumor was about the size of yours, removed by dr. schwartz.  all we consulted with agreed that translab would be the best approach in order to have the best chance of a) removing the tumor entirely and b) protecting the facial nerve in the process, so ultimately it merely came down to choosing the team.  i do not regret our decision to go with house.  they achieved total removal and protected the nerve.

[Enri]

I am sorry to read about your diagnosis.  But welcome to the club.  I am in pretreatment in Houston so I cannot offer insights into hospitals in the Carolinas.  All I can say is hang in there and reach for this group when you are freaking out. 

[lmsinwnc]

Hi everyone,

Just a quick note... I hope, as brevity is not my strong suit.

First, the ANA web-site and the materials provided there are truly a God send, as is the support from the members of this forum!  I can't tell you how much having access to information and others who are as special as me  has meant to both myself and my husband. I <3 ANA website and forums!

So, I am breathing again! And taking it slowly, (because what options do I have?) I must get in line and wait for calls, appointments, etc.  I am not freaking out anymore (for the most part). I am still anxious to move forward tho.

I just listened to a webinar on the ANA website by one of the Docs I have an appointment with (May 6) at John's Hopkins.  This really brings me great comfort! He recorded it last year, so it gives me a pretty good idea as to what to expect from him (i.e. what his surgical preferences are). Again, what a huge relief.  The appointment and any potential surgery are both way too far out for my particular liking, but as I said, what can I do about it anyway.  I like someone's signature on these boards - something about, you could stress over it, but it wouldn't do any good... That's probably butchered, but the general principle is there!

Additionally I have an appointment with a specialists at Duke for this coming Thursday. So that's happening this week already, which is comforting and terrifying at the same time.  It's possible they will run a couple additional tests (I think she said a balance test and an auditory brainstem response test?)  Not sure, but I would think it would be good if they do. 

I do have some balance issues, no vertigo, but generally flashes of whoa! Lost my balance there for a second... Of course now that I know there is a reason for all the things Ive been feeling for the last 18 months or so, I sometimes feel like I feel more!! Phantom panic pains, maybe? Nevertheless there is some comfort in knowing there is a reason for these things.  I have to laugh at all the medical questionnaires - do you have depression??  Ummm, hello?!  Yeah, I've got a brain tumor - that's a little depressing!  And for past 18 months have had all kinds of bizarre facial tingling, hearing loss, tinnitus and now balance problems, all of which kind of freak you out, but you try to ignore, which leaves you feeling blue and exhausted all the time anyway! So, yeah, you might say I get a little depressed!! Ok, I'm sorry, was I shouting! ok, deep breath and moving on!

I think of about 10 new questions a day about all these things, but ironically I can never seem to remember them long enough to get to the computer or tablet to ask them and I don't really want to make 10 posts a day!   

I think the last bit of update is that I did  finally send my records off to the House clinic for review yesterday.  So after a week of hurry up and wait, the ball is slowly rolling again.  I can't even believe I have known about this tumor for just over 2 weeks now!  I'm sure my head will explode from all the research I've been doing.  Thank you again to all of you who responded to my original "freaking out" post and to those of you who reached out personally to reassure me and offer help. It has meant so much!

I will start new posts, I guess, with updates. I'm new to forums, so I'm never really sure how to post. And besides I can hardly keep my eyes off books, NiH publications, research sites/centers, etc.  I've got about 6 tabs opened on my computers all the time... 

Lisa

[lmsinwnc]

Dear  bluebells,

The link doesn't work... 
I too consults and have decided to go to House.  Scheduled May 23 with dr. Schwartz and Brackmann. Would still love to see the link. Having trouble hearing back from dr. Schwartz, via email. He gave me office number but she just told me to email him...

Thinking about you often as I remember reading your surgery date somewhere.

Thanks,

Lisa

[Patti]

Good luck Lisa! I will look forward to hearing from you!  Patti

[Blw]

You should get a radiation opinion just to fill out your information. Radiators like to radiate and surgeons like to operate. The radiation is absolutely safe and is done as an outpatient--takes about 3 hours. One thing that you have to look into, if the tumor is coming off the facial nerve, that is something you do not want to mess with because if it is damaged, well, read up on it. Mine was, so I was locked into radiation. If you get all the thorough hearing tests, one of them can determine if you facial nerve is involved (I forgot the name). Friedman and Schwartz can handle facial nerve surgeries, and I think they do it confidently, but I would trust few others. Many will actually debulk the tumor (remove most of it) and then give you radiation to finish it off--again, because they don't want to sever that nerve. Regarding radiation, it is not like a shower head hosing down your whole head, it is actually many (hundreds?) beams that get shot at that side of the head at angles such that they all intersect at the tumor, but because they originate from all around your head, no part of healthy tissue gets a large dose--imagine what light would look like coming out of a spaghetti strainer. That is gamma knife. Cyber knife is the same except the radiation source moves around your head, takes a shot, then moves and takes another shot, and so on. The hardest part about radiation is the head frame for gamma knife. For cyber, its an easier plastic mesh mold. The outcomes with radiation are comparable to surgery and very good.