new patient needing some quidance

[tu]

hi everyone, it is so great that i found this site. . everyone seems to be very supportive and helpful to each other. i am 32 years old and dx with 2.5cm right ear AN 09/21/20. The symptoms are ringing in the ear, some hearing loss, and minor balance issues. 1st  seen doctors at Jefferson University Hospital and they recommend surgery; im very concerned with the facial paralysis and total hearing lost. the doctors went right to the point, surgery, total hearing lost and facial paralysis, this stunned me, i was speechless. There seem to be so much complications after surgery. after research, i am thinking about GK or CK, if i am qualify.
Ive also made appointment with Upenn and Temple, just to get other doctors opinion. Any body know any great surgeons in the philadelphia area or surrounding area? If i only have the option of surgery, i would rather go to the House Clinic in LA; they seem to have a great reputation. How can i get approve with my insurance? I have HMO for insurance, keystone health; is this even possible? Any body with any ideas on this, would greatly appreciated. i am in desperate need for some guidance. Still young, still want to have a near normal life after this. I read it every night and feels depress afterwards, that discouraging feeling, not wanting to do anything anymore, but i just have to pull my self together. I must get through this for me and my family. thanks everyone for reading and commenting. wish you all best of luck!

[Funnydream]

Sorry to hear about you recent discovery of having a AN. It very normal to be freaked out after you find out. I know I was.

You can get FREE consolation with HEI (house ear institute) if you send them a copy of your MRI. Just google them up and call them. And you can explain your insurance.

Good luck. Hope some vets will post some better information for you.

[Jim Scott]

TU ~

Hi and welcome to the ANA discussion forums.  We're always sorry to learn of anyone, especially a younger person, being diagnosed with an acoustic neuroma.  However, although daunting, it isn't 'the end of the world'.  The many good folks who post here will soon be along to offer you their welcome and suggestions.

AN surgery doesn't mean automatically losing hearing in one ear and/or facial paralysis.  Some research will show that while these things can happen in a relatively small number of AN surgery patients - and hearing loss is unavoidable with Translabyrinthine  approach AN surgery - facial paralysis can and often is avoided by the surgeon(s).  I had no facial paralysis following a 9-hour AN debulking surgery and there are many other AN patients populating these forums with similar stories.  My hearing was already lost in the affected ear prior to my surgery. 

You have options, as you know and I hope our members advice and suggestions are helpful, as they usually are.  Remember, we've all been where you re (newly diagnosed and researching) so we can empathize with your situation.  Your youth is an asset and I'm confident that you'll come through this in good shape. 

Jim

[questions?586]

I'm sorry.  The freak out stinks!  But they all say that there is life after treatment.    Keep reading and you'll find names of doctors.  I would also look into cyber knife.  I think you fit into the tumor size range.  Remember that rarely do these grow quickly so you have time to see doctors, send mri's around and think this through.  There are also some free brochures about AN's and treatment from this site.  Keep us posted.  Starr

[pjb]

Sorry to hear of your diagnosis but glad you found this forum... I had surgery for my AN the main thing I can advise you to do is research, research and more research... Interview as many surgeons as you can and make sure of their experience write down a list of questions on one of the post someone wrote questions to ask I hope someone remembers it or I will try and find it for you.. I would definitely send the information to HEI they had responded to me in a week after my  sending them my reports and was very impressed. I would call your insurance to see if out of state surgeons would be covered or what your out of network insurance offers maybe the doctors would be able to work with you and let your insurance know that this is a complex surgery and you cannot go to just any neurosurgeon.

I am sure after you do your homework you will feel comfortable with your choice either with surgery or radiation.

Best Wishes,

Pat

[CHD63]

tu .....

Hi and welcome to this forum.

I think if we were all truthful on here, we all had that time of panic or terror when we heard those words "You have a tumor."  This is a normal reaction to a terrifying diagnosis.

First of all, it is almost always a benign tumor that is slow-growing so you have time to do your research, absorb it, gather information from friends and medical professionals, and then relax and you will know what is the right decision for you.

At 2.5 cm you are within the commonly accepted range of size for either surgery or radiation treatment.  However, the shape and location of the tumor are also factors in determining which is the better choice in your situation.  That is why many of us recommend more than one opinion on treatment options.

Pittsburgh is a well-known center for both surgical removal and radiation treatment of ANs.  Also, Wake Forest Medical Center in Winston-Salem, NC has a well-known gamma knife department for AN treatment.  I had an excellent outcome with surgical removal by Dr. Fukushima at Duke University (at Duke Raleigh Hospital).  On the West Coast, HEI is outstanding in LA for surgical removal; Stanford outstanding for radiation treatment.  ..... and there are others around the country.  Just make certain the one(s) you choose have extensive experience dealing specifically with acoustic neuromas, not just brain tumors.

Best wishes and let us know how you are doing.

Clarice

[tu]

thank you soo ...much everyone for the reply. feeling a lot better now that I got contact with others. your all so supportive and helpful. I will also give pittsburgh a call. I'm am having so many appointments, on top that is nursing school. Really bad timing, i really would like to complete nursing school, but it seems that is not possible. Again thank you every one, I will keep posting

[Kaybo]

Hi TU and welocme - even though this is not where you probably WANT to be...it's a great find - the people are wonderful and very supportive, for the most part!  I would be happy to chat with you on the phone if you just need to talk to someone who has "been there".  You can PM me (on left) a good time to call and your number, if you would like!

K   

[Tumbleweed]

Hi, tu:

Unless the location of your tumor rules out radiation, the size (2.5 cm) would indicate you are a candidate for either CK, GK or standard FSR. Here is a link to a thread that might help you (please see my post part-way down the linked page): http://anausa.org/forum/index.php?topic=13746.0
My post includes contact information for leading experts on AN treatments who will consult you for free.

The post also includes a link to another thread in which I summarize the risks and benefits of each type of treatment (http://anausa.org/forum/index.php?topic=6670.0); you may find that helpful, too.

In all likelihood, you do not need to accept facial paralysis and complete hearing loss as an outcome. Depending again on your tumor location, it is likely that the chance of facial paralysis with CK, for example, is in the very low single digits. For my 2.1cm AN, Dr. Chang (my CK doctor) cited less than 1% chance of facial paralysis; he also thought my hearing could be preserved. Now, over two years after my CK treatments, he has so far been proven right. With surgery, however, virtually every doctor I consulted (I consulted six!) said I had roughly a 30% chance of permanent facial paralysis and 100% chance of complete hearing loss on the affected side. That led me to CK, which has been a blessing for me.

Explore all options. Do your research. You will find your way to the right treatment for you. And remember, you are the boss. It's your body, your life, your decision.

Best wishes,
TW

[leapyrtwins]

tu -

contact the ANA and ask them to send you their informational brochures.  You'll find them very helpful.

If your AN is 2.5 cms you may have the option of radiation in addition to the option of surgery.  Most doctors will radiate an acoustic neuroma that is 3 cms or less.

Make sure you talk to doctors who do both procedures.  I was fortunate to have a doctor who did both radiation and surgery so he explained each to me and gave me the choice.  Not all doctors will do this.  Some doctors only do surgery and that's what they recommend.  Some doctors only do radiation and that's what they recommend.  You need to educate yourself and make sure you make the decision that is right for you.

I ultimately chose surgery and although I have no facial paralysis I am SSD (single-sided deaf).  I opted for a BAHA and have found it has helped immensely. 

Try not to be freaked out - although that's perfectly normal.  Everyone's AN Journey is somewhat different and you may never even personally encounter the things you are worried about the most.

Good luck,

Jan

[Joseph]

Hi Tu,


      Welcome to the forum and like a good book with great lessons to be learned from real life people read these previous posts. There's a bunch of good people on this forum who offer great advice and recomendations some of which I have found on my own to be better advice than many of the actual surgeons and doctors who I have been a patient of. However try not to become overhelmed with all the information one can find about this topic the whole experience may become overhelming and have you trying to become a brain surgeon which unless your a genius will only add to your stress.
I have found from personal experience that surgery (unless some form of endoscopic surgeries) is just too risky. I am not a doctor. I am a patient who from personal experience has difficult side effects resulting from the complications of surgery.
             First be aware everyones tumor is unique and different. All sorts of factors are taken into consideration such as size, location, compression, and many others which are truely individual to everyone like a fingerprint.
     If you are looking for a good doctor who you could trust to know what there talking about and get the job done right than consider someone with experience and a history of successes who can save your life. Do not trust every doctor you come across because some think they know what they are doing but really just don't have what it takes, rather it is up to you and only you to find a team of doctors who can offer you the best in care.
    Hmm pennsylvania huh. I do know of a Dr. Jho who performs endoscopic surgery on skull based tumors. Studies have shown endoscopic surgeries to be the most advantageous form of surgery today. I am a believer. Also UPMC (University of Pittsburg Medical Center) is a great establishment for care and specialize in GK treatments. These are two gems I have given you definately check them out you won't be disappointed. Best wishes.

[leapyrtwins]

Although studies may have shown that endoscopic surgery is an advantageous form of surgery, I'm not sure that these studies have involved the incidence of endoscopic surgery to remove ANs.

I've had lots of endoscopic surgery in my life - mostly related to infertility - and I can say with confidence that endoscopic surgery is a good thing.  I also know lots of people who had endoscopic surgery for things like gallbladder removal and hysterectomies, and they have been very happy with it.  Endoscopic surgery has taken the place of "conventional" surgery for many conditions.  

But endoscopic surgery for removing ANs isn't the norm and it's not widely done.  One day this may change, but today only two doctors who perform endoscopic AN surgery come to mind - Dr. Jho and Dr. Shananian.  In all fairness, I don't know either man but truthfully I've read lots of controversial things about Dr. Shananian.

As one who had "conventional" AN surgery, I've never regretted it.  Yes, patients can have complications and difficult side-effects but to my knowledge that isn't true for the majority of patients.  

Patients who decide on endoscopic AN surgery aren't guaranteed they will have less of a chance of complications and/or difficult side-effects.  Some things you just can't guarantee - and if you find a doctor who guarantees you anything, you should be very cautious.

Jan

[jerseygirl]

Jan,

Actually, endoscopic surgery is less chance of major complications in general, however, there is no guarantee that they will not happen to a particular patient. The difference is in the method yourself - less invasiveness and less tissue destruction leads to less chance of complications.  One just have to go through endoscopic as well as conventional surgery to understand the difference first hand. Any surgery is risk and any surgery might be done carelessly. 

Tu,

A chance of facial paralysis with your size of the tumor without any facial symptoms is small in experienced hands. That happens to be true for either endoscopic or conventional surgery.  There are many stories on the forum to prove it. You might come out of surgery looking like you just had surgery but in time your looks more or less return to normal. Unless you are a model, I would not obsess about millimeters of difference between the sides of the face. I agree with others that you have to keep looking for a doctor who thinks he can operate on you without long-term facial paralysis. It is absolutely worth it and I can attest to it. It took me almost a year to find somebody to take care of my difficult situation but persistence paid off. I got what I wanted at the end.  Like others also stated, you are also a candidate for radiation which definitely helps you avoid " I have just been operated on" look. Best of luck and don't give up!

                Eve

[FlyersFan68]

I had surgery at Jefferson. Surgeons were Wilcox/Rosenwasser. I'm not sure if I would have had the surgery there if I didn't get Robert Rosenwasser who is a great surgeon. Your tumor might be in a tough location so I would send your films to House for a free evaluation. They've done plenty of these surgeries at Jeff but waaay more in California. Hearing loss seems like a given to me with a tumor this size. Both may be spared with radiation but no guarantee in both short anf long-term. Get a few more opinions and then do what you feel is right.

[msmaggie]

Good morning and welcome!

You have fetched up in the right place, although it is a place none of us ever thought to be in.  I did not have my surgery done at House, but I did send my MRI to them and spent quite a bit of time talking to the drs. there. House will go over your insurance and check it out if you are serious about using them.  I have BC/BS and they told me right away surgery would be covered.  Finding the right procedure/dr. will be the hardest part of your journey initially, and we are here for all your ideas/questions/anxious moments!
Priscilla