asking help for new AN diagnosis

[Hzo]

Hi,

I was just diagnosed with a large AN two weeks ago. I read a lot on websites, and I am really scarred. I do not know what to do. Drs. recommend to have the surgery ASAP. I am working in PR, now, but my husband lives in NC. I need to go to the states for the treatment. Any ideas or suggestions about where in the States would be the best for this, and what to do. So far, the ENTs suggest the HEI, LA.

Also, is there any way to reduce it instead of surgery? I am scarred to death.

Please, help.

Mi

[nancyann]

Hi there Mi:  take a deep breath. Your ENTs are obviously very aware of the most reputable place for surgery.   HEI is a great place with wonderful doctors.   Many on this site have gone there. 
The other alternative to surgery is radiation - it all depends on the size of your AN because radiation will 1st cause swelling, then shrinking of the tumor.
I certainly understand your fears.  Others will chime in (with better computer skills) on where you can send your MRI to HEI.
Keep a peaceful heart my friend,  you will get through this.
Always good thoughts,  Nancy

[Hzo]

Hi Nancy,

Thank you so much for the first and quick response. I really appreciate your help and support. One of the docs at the HEI has contacted me, but I am still confused.
I would prefer the irradiation, but it seems that the size of the tumor limits this option?? 3.3cm

[CHD63]

Welcome, Mi .....

If NC is North Carolina and that is where your husband is, my AN was removed by Dr. Takanori Fukushima at Duke Raleigh Hospital.  I had excellent results and he is highly recommended from all over the world.  Of course, HEI is excellent as well.  At 3.3 cm you are at that point where radiation is usually not recommended.  However, giant strides have been made in the field so it might be worth pursuing.  Pittsburgh, PA has an excellent gamma knife center.  A friend just had her AN treated with gamma knife at Wake Forest Med Center (also in NC).  All of these places will give you an evaluation if you send your MRI to them.

Remember ANs are usually very slow growing so take a deep breath and take some time in between your research.  It can be very overwhelming at first.

Just remember we are all here on this forum to give you reassurance and share our experiences.

Not sure if PR is Puerto Rico and if so how quickly you receive mail from the States.  It would be good for you to send for the ANA materials.  They are very informative and reassuring.

Best thoughts and prayers.  Clarice

[Hzo]

 Hello Donnalynn and Alice,

Thank you so much for this valuable information. I do not feel alone with your help and support. I really appreciate it.

As of Feb 18 from the MR results, the tumor is 3.3cm. I sometimes have this machine noise in my head, and I decided to go to my doc Feb 15, as it bothered me. I also have sporadic sharp pains a for 1 or 2 seconds before they discovered I have AN, but these symptoms mostly disappeared after I had 10 days of steroids, (which was just finished last Tuesday). No headache, but the tinitus does not stop, and I sometimes feel dizzy for about 2 or 3 mn, and back to normal.

I am working in Puerto Rico, and the dcs here are trying to contact those physicians in the HEI. I think my ENT had sent the results of the MRI and CT scan to the HEI last Thursday, and we are waiting for their feedback.


You are right, we should send everything to the Institute but not just the summary results.

I also did some searches with the Japanese Professor at the Carolina Institute, and he is well known as the best around the world for this type of tumor. I talked to one of his co-workers last Friday, and they need to know more info on my tumor and my health insurance etc..

One thing that still confuses me, Is it safe to go to private Clinics or the best choice would be the big Institutes in cases there would be some complications?  My husband lives in Chapel Hill, and that is why I thought it would be easier for us to have it in NC Institute.

But, when I think about the potential complications, especially since the size is already big, I am scarred if I would do it in any where else beside the HEI. However, your experiences and ideas would help me a lot for the decisions.

By the way, how big were yours Alice and Donnalynn when you had it removed? what procedures?? I think, this latter depends on the size of the tumor, right?
No complications?? what would they do if there would be any complications? At either HEI or NC Institute, do I have to find a Doc for the follow-up after the surgery or what I am supposed to do, since my docs are in Puerto Rico, but I will not come back to PR until I am recovered from it.


Also, is it necessary to rush like we are doing now??

Would it be Ok If I call you Donnalynn and Alice.


Again, thank you so so so much for your help.

[leapyrtwins]

Mi -

Although HEI is a good place to have AN surgery, Duke is also.

You should research all your options before making a decision.

Jan

[Jim Scott]

Mi ~

Hi, and welcome to the ANA website's Discussion Forums. 

I'm sorry you're the recipient of an acoustic neuroma diagnosis.  I know that initial pronouncement from a physician ("you have a brain tumor" ) can be temporarily devastating but there is no need to rush your decision-making process. Making such a serious decision in unnecessary haste is how AN patients sometimes suffer with poor surgical outcomes but there is no need for that to happen if you are judicious in choosing a doctor and don't allow yourself to panic or be 'rushed' into anything by anyone.   

The House Ear Institute ('HEI') is a very good facility with excellent doctors that are specialists in AN removals but, fortunately, they are not the only excellent facility in the U.S. with good doctors.

Regarding your question about small clinics versus large institutions: I underwent my AN debulking surgery (a 4.5 cm tumor) at a relatively small hospital in New Haven, Connecticut (The Hospital of Saint Raphael).  I went there only because my neurosurgeon, Dr. Issac Goodrich, (who is not famous -but should be) chooses to operate on ANs (he's removed hundreds if not thousands) at that facility because he has a hand-picked 'team' (including nurses).  He told me that he doesn't want Residents and Interns in 'his' OR when he performs delicate AN surgery and his 'regular' hospital, the famous Yale Medical Center, about a mile away, where he's an instructor, is a teaching hospital and would require him to use Residents and interns during the surgery.  The point being that your doctor is easily more important than the facility.  Good surgeons don't usually choose to operate in poorly equipped or thinly staffed facilities.     

One caveat: no matter how successful anyone's AN surgery was using a specific doctor/facility, that does not guarantee that another person's surgery, no matter if it's the same doctor and facility, will have an identical outcome.  HEI is a renowned hospital with great doctors well-versed in AN removal procedures but not every single AN patient that has surgery there has a perfect result.  Still, if you're confused, you can always 'fall back' on HEI knowing that you probably made a sound decision.  I 'second' Jan's ('leapyrtwins') suggestion regarding the wisdom of checking out Duke University hospital in Durham, North Carolina.

I trust that once you calm down a bit and 'catch your breath', you'll be better able to begin making sound decisions on your AN surgery.  However, don't rush - but do feel free to ask any question you have on these forums.  We're not doctors and cannot credibly answer strictly 'medical' questions but collectively, our members have a wealth of practical experience with acoustic neuromas, whether just diagnosed, preparing for surgery or post-op.  We've 'been there, done that and got the T-shirt '.     We don't claim to know everything but we do know how you're feeling about now and we're eager to help you on this 'journey'.  Please let us do so.  Thanks.

Jim

[DR]

Mi,

We all know how shocking this diagnosis can be.  Thankfully you found a great place with broad shoulders to lean on.

There are some very good suggestions above.  I would recommend getting several opinions.  HEI is a great place, but it is not the only place with experienced surgeons.  Also, I have one more suggestion.  Are you comfortable with computers?  If so this is what I did:

1) Created a folder named "AN" on my desktop

2) Copied the entire MRI CD to a folder named "MRI" inside the "AN" folder

3) Scanned all my test results (hearing, balance, etc.), created pdf files and placed those in a folder named "Test Results" inside the "AN" folder

4) Burnt the "AN" folder to CD and labeled each CD with my name and date of birth

I then mailed these CDs to my hospitals of choice and when going for in-person consults I took a copy with me to give to the doctors.  I also kept copies at my home and office.  This way, if a call came in I always had the information available.

Please let us know how things are progressing.

- Dennis

[Kaybo]

Mi~
You have received EXCELLENT advice already so I just wanted to WELCOME you to our little group!!  I whole-heartedly agree with what has been said - HEI is an excellent facility but NO place has 100% PERFECT results and there are MANY wonderful facilities (DUKE being one) that might be closer to your family!  Ask anything - that is what we are here for!

K   

[Lizard]

Hello,
I agree with the above, but if your husband is in NC its probably easier for you to get back and forth to appointments and what not if you stay close to him.  Duke has a fantastic reputation and I trust you will go with what makes the most sense to you.
We are all rooting for you, good luck and keep us posted!
Liz

[Hzo]

Hello all,


Thank you so much for all of your help and support. Your suggestions do make sense.  I need to take a deep breathe before I take a decision. So far, I am quite convinced that wherever I go it does not gurantee for the  possible complications, especially with a big size like mine.  My symptoms kill me, and I have been under steroids for almost 10 days, and that is why Dcs said to get it removed ASAP.

I just read some of people's comments with other possible options though, and would like to ask more. I read two patients had undergone radiosurgery even though the size of the tumor was big, and the results were excellent. I know, that procedure does not remove enterely the tumor, but at least it may help to shrink it later. Any idea where they did that?  (Jim ? and ?) .

How about the Skull Base Institute? any of you had surgery over there? I saw some comments on "no reference" etc.. and I did not find any sites with any patients'  comments as well. 

My ENT docs sent my info to the HEI last week, and we have not heard from them.

Meanwhile I contacted the Carolina Neuroscience Institute, and they wanted to know first my health Insurance (tripple SSS, division of Blue Cross Blue Shield). I just sent the info today.

I like the ideas of creating a folder, and save everything in it, and send the info to those Institites. However, time is my big concern.

Sorry to keep asking a lot, it is important to ask more before taking the decision. I

[Kaybo]

Hi - I hope it is OK to speak for JIM - he had a very large tumor that was debulked first (thru surgery) and then they zapped the rest!!

K   

[jchughes68]

I would not consider the Skull Base Institute.  I consulted w/them about surgery, along w/others, before my surgery in Sept. 2008.  I do not want to be negative here but would be glad to send you a PM if you'd like.  I am new to this forum although I'm nearly 18 months PO.  My tumor also was large and in the six months I waited and investigated between diagnosis (an accidental find - no symptoms) and surgery, it grew quite a bit.  In hindsight, I wish I'd had surgery sooner, thus possibly eliminating some of the complications; however, having said that, I certainly don't know for sure if that would have been the case.  As everyone else has said, HEI in LA is excellent.  I had my surgery at Abbott Northwestern Hospital in Minneapolis w/Dr. Nagib and Dr. Nissen.     They were excellent.  I think it is VERY important to have a support system in place close by (my daughter lives in Minneapolis and my husband was always there).  My thoughts and prayers are w/you.  It is so great you have discovered this forum before your surgery!!  It has been wonderful for me even after the fact.  Chris

[leapyrtwins]

Debulking followed by radiation is done more and more these days for large ANs.  The doctors surgically remove a portion of the tumor - but don't get too close to the facial nerve - and then the remainder is radiated.  It worked very well for Jim Scott.  I'm sure he'll be along to tell you more 

As for SBI (Skull-Based Institute), those who have been there have been very satisfied with their results.  The biggest issue, in my opinion, is that endoscopic AN removal isn't the norm - yet.  It's not widely performed by doctors.  However, there are a lot of indications that it will be the wave of the future.

AN treatment decisions are personal decisions; you need to do what you feel is right for you.

Jan

[Hzo]

Hello Chris,

Thank you so much for this valuable info. Could you, please, send me a PM, if that is fine with you?
 Mi

I would not consider the Skull Base Institute.  I consulted w/them about surgery, along w/others, before my surgery in Sept. 2008.  I do not want to be negative here but would be glad to send you a PM if you'd like.  I am new to this forum although I'm nearly 18 months PO.  My tumor also was large and in the six months I waited and investigated between diagnosis (an accidental find - no symptoms) and surgery, it grew quite a bit.  In hindsight, I wish I'd had surgery sooner, thus possibly eliminating some of the complications; however, having said that, I certainly don't know for sure if that would have been the case.  As everyone else has said, HEI in LA is excellent.  I had my surgery at Abbott Northwestern Hospital in Minneapolis w/Dr. Nagib and Dr. Nissen.     They were excellent.  I think it is VERY important to have a support system in place close by (my daughter lives in Minneapolis and my husband was always there).  My thoughts and prayers are w/you.  It is so great you have discovered this forum before your surgery!!  It has been wonderful for me even after the fact.  Chris