18 year old digagnosed today SURGERY UPDATE

[robynabc]

HI,

I feel pretty comfortable and we are going to see the neurologist.  Two good things he said was that the tumor looked necrotic in the middle so he thought there was a chance that it would easily cave in on itself,  and he said 25 years ago he operated on a 7cm tumor.  He said all she had was a bit of a limp.  I thought that was remarkable for so long ago.   I think he is very much skilled and has done many tumors.  Not all large but has done large ones.  I am going to ask him about the latest cutting edge technology.  I want to be sure that he is up to date with them.  He said that taking out part of the tumor and leaving some of it was an option too.  I asked about a specialist for the nerve and he said a technician would watch it with an alarm.  If he has done 30 a year for 20 years then he has done about 600 I guess.  He said that he just moved here two years ago and there have not been many here.  I thought that was interesting.  He had no problem with a second opinion and told us who to talk to at the House  place and others around the country. He did admit there may be others in the country who have done more in numbers.   I think he is skilled,  I think my only worry is the lasted technology. 

[robynabc]

OH and one other question,  when you have facial nerve paralysis is it just one side? 

Thanks again for all the info. 

[ppearl214]

Robyn,

HEI is certainly reputable for S. CA (and all over, as many have traveled there). Stanford in N. CA certainly ranks up there as well. Mass General in Boston is top notch on the east coast and there are so many wonderful surgeons scattered about.

Just a suggestion and take it with the grain of salt it's worth..... ask these specific dr's that you are speaking and/or meeting with for their own patient references.  I reference for my radio-oncologist and if a surgeon is truly worth it (and you cannot travel), they should be more than happy to provide you with their own patient references, with good outcomes and not so good.  You can learn lots that way. Many folks here, as you can see, will also certainly chime in with their references as well.

Hang in there... I know it's a tough ride, but we're all here to do the journey with you all.

Phyl

[TP]

Hi Robynabc: yes I have facial payalysis on my left side the same side of my AN. I am also deaf in that ear and have double vision in my left eye (which appears to be a little more rare).  My dr told me up front I would lose my hearing and would probably have facial paralysis for some time. The eye issue has been unusual. I see a specialist next month to hopefully correct the double vision.

About 6 months after my surgery I got a small smile on my left side. I am now 11 months out and it is slowly getting a little more movement. I had a gold weight put in (simple procedure) in my left eye about 6 weeks after my AN was removed. That helps with closing the eye and not having to wear a patch over my eye to keep it closed. I did not experience any headaches and was back to work (work an average of 50 hours a week) and exercise (taekwondo) within 3 months. I had two CSF leaks which means that my incision had a leak. The second surgery did the job and no issues since.

You mentioned the latest technology and yes that can be an issue. Some hospitals do not have the technology and you want to consider all the options. However, based on the size of your son's tumor, that may limit you on the types of surgeries your Dr can perform.

After the surgery your son will have several follow up Dr visits as well as multiple and/or yearly MRIs. He may also need physical therapy and may need an opthamologist. It sounds like a lot but I look back this past 11 months and it goes by quickly, my life was briefly interrupted last summer, my sides effects-well stink....but I feel pretty much fine. My foot surgery I had when I was in my 20's was way more painful and a lot more rehab than this surgery....

[Pembo]

robynabc, You mentioned that he is new to this hospital. Where did he previously practice? Definitely ask him for some patient references.

I said before I didn't research my surgeons much. My local ENT knew my surgeon personally, made a personal call to his cell phone to get me an appt the very next day on a day that the surgeon usually did not see patients. I was VERY impressed with this extra level of care. He was very patient with me and that first visit was over an hour. The very next day I saw the neurosurgeon. Again, he allowed me all the time I needed to ask questions. I was provided a direct number to his nurse for any questions and I used it quite a few times. Surgery was scheduled three weeks later. In that time I saw the surgeon once more and he called me at home the day before surgery just to make sure I was doing ok. I was very impressed by the amount of compassion and concern the doctors showed about my mental state prior to surgery.   Long story-short....I had a very high level of trust. I've seen my surgeon many times since surgery.

Other than the expected hearing loss, Facial paralysis is my one issue. Yes it's one sided and it can vary greatly. I got some excellent literature from the ANA about facial paralysis.

Good luck to you.....

[Jim Scott]

TP:

I wish to clarify why I believe a neurosurgeon performing AN surgery should have at least 400 operations on his/her resume.

As you noted, all AN surgeries are not the same - because all AN tumors are not the same.  A neurosurgeon who has performed many hundreds of AN surgeries has very likely 'seen it all' and is prepared for any 'surprises'.  He knows what to do.   His skills for this very specific surgery have been honed by hands-on experience, not by simply reading medical literature or attending a seminar.  While experience cannot guarantee the outcome, it certainly should be seriously considered as we know what can happen when a newly-diagnosed AN patient doesn't check out doctors and simply goes where he or she is recommended, sometimes to their later regret, as posts in this forum attest, such as the one by 'nikynu'.  This is why the House Clinic is renowned.  AN-experienced surgeons and generally good outcomes.  The word gets out.  Bottom line: I believe that the experience behind 'the number' is critical.

I hired a 'local' neurosurgeon (30 miles away) who had been performing AN removals for over 30 years.  He was highly admired by the hospital staff, who told me I was lucky to have him as my surgeon.  The result?  No complications, no CSF leaks and a rapid recovery.  This is what I want to see for every AN surgical patient.  This is why I recommend choosing a surgeon with extensive AN experience. 

robynabc:

Your neurosurgeon sounds quite competent.  Nerve monitoring is critical and becoming routine for AN surgeries now. I had it, and I appreciated it...no nerve damage.  Your doctor is giving you 'worst-case scenarios' to prepare you for that possibility - and to be completely honest with you, as AN surgery, unfortunately, is fraught with possibilities for 'complications'.  The availability of technology is a factor to consider but most hospitals are pretty well equipped these days.  The fact that this surgeon hasn't done any AN surgeries in 2 years is something to consider - but not an automatic reason to rule him out.  Ask him if he would consider surgery and radiation, combined.  My surgeon recommended this approach and I'm glad I decided to take it.  Almost a year later, I'm good and, according to my last MRI, the tumor is dying.  What few 'issues' I have are very minor and I expect they'll be gone, eventually.

Based on your positive comments here, I believe you will likely choose this surgeon.  Still, don't jump into a decision and do consider sending your MRI scans to the House Clinic in L.A.

We all want the best for you and your son.

Jim

[pearchica]

Hi Robynabc: sorry to hear about your son- These first few weeks by far are the worst as you are having to get use to this issue and deal with all this new information. It does get easier and the terminology does become second nature.  I was very pleased with my treatment at Stanford (I opted for cyberknife surgery) and if you need a second opinion Dr. Stephen Chang is great for a gut check- he does both radiation and surgery so you will get an unbiased opinion.  Keep reading all you can on this website- it is a great resource.  Also I see that some of our heros have posted. And while this is tramatic: remember it's not cancerous- we do have to look to the bright side of being the lucky 6% of inter-cranial tumors! (a fact i read somewhere in all my research).  Pubmed.org is a great website as well.  Take care, Annie

[robynabc]

HI,

Thanks again for all the good info.  WE have sent our MRI's to House just today.  This is what is critical to our desicion-  I talked to someone at ANA this morning and she brought this up to me. It was in a newsletter and they sent the newsletter to us.

"Recently, we and others have found that the
majority of facial nerve morbidity can be
avoided by leaving a small piece of tumor capsule
on the nerve. Even when small pieces of
residual tumor are left on the brainstem or facial
nerve, tumor growth usually stops as long
as the tumor is not connected to the porus (i.e.,
opening of the internal auditory meatus).
Therefore, facial nerve preservation is slowly
becoming practice in most centers for acoustic
neuroma treatment.
Currently a large prospective multi-institution
trial conducted at Stanford University,
University of Cincinnati, House Ear Institute
and University of Pittsburg is underway to
evaluate the efficacy of such a surgical approach.
In a smaller study from Belgium, such
treatment was found to reduce facial nerve
morbidity in surgery of large acoustic neuromas
from an average of 30% to zero.
The application of cutting edge surgical technologies
includes frameless stereotactic intraoperativeintraoperative
guidance for accurate localization of the
lesion and determination of the exact size of any
residual tumor on the surface of the nerves or
brainstem, safer drills for removal of bone along
the surface of the inner ear (e.g., ultrasonic bone
curettes) and the use of endoscopes (long thin
telescopes) that expand the surgical field of view
around corners where traditional microscopic
optics fail."

If our surgeon can have a consult with DR. Brackmann, and he is open to the new technology then I think we will feel comfortable with him.  DR Jenkins  said he knew DR Brackmann, and gave us many other DRs that can do this also.  The list he gave was a short one.  I am going to ask brackmann about Dr Jenkins. 

I did mention leaving parts of it and he said it was an option.  I think the fact that the tumor has some necrosis in the middle and that he said he thinks this was a fast growing one is a plus.  I think this surgeon is skilled.  My worry is the new techniqes.  If he is up on that and the Neurosurgeon is too,  I will feel better about it.  It will be tough to get our insurance to pay for house but if we need to do it we will.  THanks again for the information. 

[jerseygirl]

Hi Robynabc,

So sorry to hear about your son. You came to the right place to seek information and support. I hope everything works out really well. Research, research and research!

Just a comment on the article you quoted. My surgery was in 1988 for a 6x3x3 cm right sided AN. I was 25 at the time. The facial nerve was spared. However, I am facing another surgery again for a recurrence on 6/27. It looks like my surgeon did what this article suggested; left pieces of the tumor capsule at the brainstem but away from the porus. It took my tumor a long time to grow but it did anyway. When this article says "usually don't grow", how long is a follow up? A year or two ? In most cases it takes longer for a benign tumor to start growing unless it is atypical (pre-cancerous). This is especially true of young people. Keep this in mind because your son is very young and if something is left (which might be preferable in order to preserve function), you need to know and schedule follow-up MRI's forever. The good news that if he needs to do anything again in the future, the technology will be much more advanced. I am scheduled to have endoscopic removal - new technology like the article suggests. By the way, where was it originally published?

                          Eve

[robynabc]

HI,

Thanks for your info.  This article was from September 2006.  ANA sent it to me,  I don't think it is on their site. 

I just got off the phone from Dr Jenkins and he said the same thing!!  I can tell he has a lot of experience because he was thinking ahead and when I read this to him he said that he had done a large tumor on a 13 year old about 18 years ago.  And I think some may have been left.  He said she now has a tumor on her brain stem.  That is more serious.  He is okay maybe with leaving some on the nerve but is not comfortable with the brainstem.  When he said this I really felt more comfortable with his experience.  I asked about the new technology and he said he does it the same as others.  I read him that part and he said the same thing.  I think that new technology is good but you do have to look ahead the new procedures have not been around as long and maybe some of the long term affects could be affected.  He has done large tumors with this neurosurgeon.  I am feeling more and more comfortable with this surgeon.  I felt funny asking about all this.  Surgeons can be hard to talk to.  I felt like I was interogating him.  He said I need to trust whoever I go with.   

I am sorry about your recurrance.  I hope it goes well. 

THanks Eve for your post. 

[Mark]

Robynabc,

I'll weigh in on the quote you referenced for what it's worth.

While in theory, the process outlined is very attractive, I would submit that it is less than proven that the AN can consistently and reliability have the remainder that is left be effectively "deveined" or deprived of it's blood supply to prevent future growth. There are a number of posters on this forum who have had the unpleasant experience of regrowth in this scenario. So while the advantage is that the facial nerve is protected by leaving some residual tumor around it, there is no guarantee that the remaining AN will be killed. The other version of this debulking strategy for large tumors is to surgically remove the majority of the tumor but not remove the tumor adjacent to the nerves and irradiate the remainder ( GK or CK). I think this second treatment following the surgery is more effective than relying on the surgical solution alone.

Mark

[robynabc]

Hi,

Thanks again for the information.  I just talked to another doctor in this state that does AN's.  He referred me to Dr Jenkins  the doctor here in Denver and said that the neurosurgeon he works with is as good or even better than Jenkins.  He said he thinks they are as good as anyone and has done many of these tumors.  ANd he felt that having him in state to do all the followup will be benificial too.    I am thinking Dr. Jenkins  will be our guy. 

This doctor in Colorado Springs called me at 9:00 at night and was sweet as pie.  I know he did someone else's 4CM tumor on this forum and that is why I called.  Thank you again for all the help and information.     

[robynabc]

Well,

Better news.  Went to the Neurosurgeon today.  DR.  Lillihei.  Much more positive and he does these often.  He said they just did one on someone last week that was larger than Eric's.  We have been focusing on what Eric could lose and he said there is a lot he can gain from getting that thing out of there. Meaning things hopefully will get better for him.  We did not realize until lately how much his balance is off and he is tired alot.   He does more of the large tumors.  It may be good to find someone who does alot of tumors but doing alot of the large ones is as important also. (for us anyway) And he has been doing these for 20 years also.  His specialty is head tumors.  So we will have a neurosurgeon and a Head and Neck surgeon with 40 years experience between them. And I believe he is a member of ANA.  I will verify that tomorrow.    We are feeling better about the situation and are almost 90% sure we will go with them.  We still have to talk to house beginning of the week.  So,  we will try to just relax over the weekend and make the decision on Tuesday.  Thanks so much for all the good information.  This is a fabulous site and forum. 

[Jim Scott]

Look forward to reading of your decision, Robyn. 

My neurosurgeon is also a member of ANA so I would have to consider that a small but positive sign: he's involved.

Try to relax a bit over the weekend. 

Jim

[robynabc]

Thanks Jim.  I have been so grateful for the information and support.  You guys are great.

It seems like the decision is the hardest part.  For me anyway.  I want to make sure we are doing the right thing and putting our son in the best hands.   It is true that while House is great there are other very good doctors out there too.  It is a matter of finding them and making sure. 

Thanks,

Have a good weekend.