18 year old digagnosed today SURGERY UPDATE

[robynabc]

I can talk about this much.  My son has a large tumor.  He has no hearing loss at all but we went in because he had numbness on his mouth.  THe MRI shows a large.  4.5 x 3x 3 tumor.  THey could not believe he had no hearing loss and no other symptoms.   I am not ready to talk about  this much because we have not seen the surgeon.  My question is-  our ENT is sending us to a doctor- Here he is. 

http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html

According to her he has done the most schwannomas in the country.  From reading on this sight that is most important.   Has anyone heard of him?  Thanks in advance for the info.


 I am afraid of hearing any horror stories becuase he is so young.  I am for the most part staying pretty positive and don't want to change that right now.

Thanks,

http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html

[chelsmom]

Hello Robynabc,

I'm so sorry to hear about your son.   Last June my 17 year old daughter, 5 days before graduation, was diagnosed with a large AN.  It's a very scary time but you are right in having a positive attitude.  I'm not aware of the surgeon that you've mentioned.  Chelsea went to UCLA and although she had many complications I felt she was in the best of care and now 10 months later she is doing great. 

Please know that this is a wonderful place to come for support and information.  My thoughts and prayers are with you. 

All My Best........Michelle

[robynabc]

My son is supposed to graduate in 3 weeks.  He may miss graduation.  Thank you so much for your post,  I am glad to hear that he is not alone in being so young with this.  But I am not glad she had it too.   Thanks again.   

[chelsmom]

Hi Again,

You might be suprized about him getting to graduate with his class.  Chelsea surgeon agreed to let her walk with her class and was going to do the surgery June 30th but her legs went weak and she fell just 2 days after graduation.  She was admitted that day.  I would at least ask to see if he could walk with his class.  All her doc's felt that this was too important for a her to miss out on and were sure she would be OK.     

[ppearl214]

Hi Robyn and welcome. I'm sorry to hear you all are going through this journey, but I have to admit... you really found a terrific support network here, esp. in the case of Michelle/Chelsea.  This past year, we have traveled the journey with 3 younger folks (ok, younger than me!) between the ages of approx 17 to 25 and we cheer everyone on as loud as we can. 

I read the link and Dr. Jenkins seems to have quite an impressive backround.  Do you know how many actual AN surgeries he has performed and his is office willing to give you patient references?  To me, I found those questions key to any form of treatments (of my health situations) that I have had.  Asking here is also a terrific choice and hoping someone can chime in with reference for you.

I have to send a shout-out to Michelle and Chelsea as well... been so long since I personally have seen them here but send my best huggles, as always.

Robyn, again, welcome, to you, your son, your family and friends.

Phyl

[robynabc]

HI,

Thanks again for the support.  HEre is more I found on the doctor. 

Clinical Interests:
 Adult/Pediatric Ear Disorders, Hearing Loss, Vertigo/Balance Disorders, Facial Nerve Disorders, Acoustic Neuroma, Cranial Base Surgery
Medical School:
 Vanderbilt University
Residency:
 UCLA Center for Health Sciences
Fellowship:
 University of Zurich
Board Certification:
 Otolaryngology

Sounds good. 

[Joef]

Welcome! Try to stay positive ... I know its hard .. we are a great support group here and most are willing to talk on the phone with ya if you like .. personally I think the younger folk that get tumors do better after surgery ... as the older we get, the slower the healing process. It will be scary at first .. the weeks leading up to the surgery are the worse!

[Omaschwannoma]

Hi Robyn,

Very sorry to hear about your son, but as stated earlier he has youth on his side.  I agree with Phyl in regards to "how many acoustic neuroma surgeries has this doctor performed".  You definately want a surgeon experienced in this as the area they work in very, very tiny area with facial, hearing and balance nerve in there to add to the congestion.  It has been stated before on other posting sights here 500 to 1000 surgeries is the norm.  I would definately be asking that question to the doctor among many others.  Take a tape recorder to the visit and record the conversation so you will be able to listen to this at a later time.  It's when you arrive at home that other questions pop up.  The initial diagnosis is very freightening and the mind has a way of running away with thoughts of doom and gloom.  Stay positive as you say you are, breath deeply when it becomes overwhelming and ask lots of questions regarding the tumor, treatment and after care.  Write down questions to bring to the doctor visit also.  Most people go for 2nd opinions and if feasable, 2 heads are better than one. 

I am 2+ years post surgery and have been teaching yoga for over a year now.  I had 6 weeks of vestibular therapy after surgery to help with balance and I highly recommend this. 

[Pembo]

Sorry to welcome your son to our club. I was 34 and my tumor was 4 cm when I was diagnosed. I had no hearing loss, it all started with a little numbness in the cheek. By the time I had the MRI, a few months later,  I was dizzy all the time and very tired. The drs told me that surgery was necessary but if I had plans in the very near future we could put it off for a month or two. I just wanted it out and within 3 weeks I had the surgery.

So as everyone else said, ask the doctor how urgent surgery is needed. AN's are slow growing tumors so he may not need immediate surgery.

As for the surgeons, I did not research them too much but they made me feel very comfortable. I trusted them completely and after a 16 hour surgery they were able to remove ALL of my very sticky, very large tumor. My long-lasting side effects are deafness and facial paralysis which is still improving.

Best of luck to you and your son. As Joef said, the weeks leading up to surgery are the worst, I thought worse than after surgery. The anxiety is hard!  Stay strong and we are all here to help.

[Jim Scott]

Hi, robynabc:

Allow me express my sympathy for your son and to welcome you to the website and this forum, where no one really wants to be, but where you can receive support and practical information not generally available elsewhere.

I cannot offer any specific information about Dr. Jenkins, although he seems well educated and has held a lot of notable teaching positions in his career.   The important point in choosing a surgeon is not necessarily their education or awards, which always reassure us, as they should, but their hands-on experience in doing AN microsurgery.  Teaching something and actually doing it are entirely different, as we all know.This is a very complicated surgery that requires both mental and physical ability to perform successfully.  The general 'rule' is that a doctor who has performed anything less than 400 AN surgeries is still learning.  Yes, thats a high standard but we're talking about brain surgery here and if certain nerves are disturbed, bad things can happen.  You don't want to take that chance with your son.  Why should you?  Please do not be hasty in choosing a surgeon to remove your sons acoustic neuroma tumor.  I would also advise you not to allow yourself to be intimidated by any doctor.  They are not gods.  You have to make a decision based on what's best for your son.  That is your right - and your responsibility.

My neurosurgeon was a Yale medical school grad and taught medicine at Yale university.  More importantly, he had 35 years of experience removing acoustic neuroma tumors.  He admitted he had not always seen good outcomes over the years, but modern techniques had made that much less common, today.  The plan was for my surgeon to surgically 'hollow out' the tumor, cutting off it's blood supply, then I was to receive radiation treatments - 4 months later - on the remaining tumor.  I was especially concerned about nerve damage and my doctor respected that.  He brought in a specialist from out of town to monitor my nerve functions during the surgery.  My medical insurance company wasn't too happy, but they paid his fee, too, and I came out of a 9 hour surgery with no complications and no nerve damage aside from what I had already developed prior to the surgery, which was minor (but annoying).  Within days, my pre-op symptoms disappeared.  I was driving again within 2 weeks of the operation.  According to plan, I underwent 26 FSR (radiation) treatments a few months later, which were uneventful.  On my last MRI scan (April 30th) the remaining tumor showed clear signs of necrosis (cell death).  I had an excellent surgeon (with a great team in the OR), a very supportive family and circle of friends, faith in God's grace and a positive attitude to help me through this medical challenge successfully. 

Yours son's youth will likely help him heal fairly quickly from any surgery he requires.  Your support and encouragement will certainly help him emotionally, which is more important than you may imagine, especially where ANs are concerned.  I wish you and your son all the best as you begin this journey so many of us here have been through.  I bet you'll both do just fine. 

Jim

[robynabc]

HI,

Thanks so much for the great info and support.  Your stories of encouragement are great.  We see this doctor on Monday.  According to our ENT she said this doctor has done the most of these surgeries in the whole US.  I certainly hope that is true.  I am going to ask of course.    Thanks again and will update.  I really appreciate all the positive stories.  I feel this is really important for us.  I feel that positive energy can work wonders. 

[Obita]

Hi robynabc:

I am glad you came on.  Now that it is day two, you hopefully are feeling better about your son's AN and not feeling so alone.  We have all been there.  We know the shock, the acceptance and the getting on with it.

I cannot imagine your son would not be able to graduate with his classmates.  If he is not having any of the extreme symptoms, chances are, another month won't matter a bit.  Most experienced surgeons are booked out for a month or more anyhow.  I had to wait almost 8 weeks after I decided to have surgery.

There is a list of questions to ask the surgeons on this site.  If you click on the Acoustic Neuroma Association logo at the top right, then Overview on the left you will find it.  My surgeon told me that if there was a chance that total removal of the AN would compromise the facial nerve, he would back off after getting what was safe to get. The residual tumor can be radiated a few months later.  I would hope this is the norm now, but I would definately ask him.

Good luck to you and your son.  He will be fine, and so will you. 

Kathy

[robynabc]

We went to our surgeon today.   He has a ton of experience with an.  He has been doing these for 25 years.  He siaid the tumor is on the brainstem.  He said he has not done as many in the last couple of years.  I don't know what to do.  The only other option for us is going out of town.  He would not be egotistical about saying how good he was.  He said
he has heard of house.  He said a technician will watch his facial nerve and gave us some worst case scenarios.   If he has done 30 of these a year for 20 years but not as many in the last 2 years Do you think he is good?    Going out of town would be difficult.  DR LIllehei would be the Neurosurgeon.  Both DOctors are the department heads of there fields at University of Denver.  The ENT we saw in the first place said she thought he was a fantastic surgeon and if she had this she would go to him.  She has seen him in action and thinks he is very gifted.  My  only  worry was that he hasn't done as many in the last 2 years and he was a little bit concerned about how to save his facial nerve. I guess because of the brainstem issue.  He said most people do okay with this surgery but was giving us some worst case stuff.  I don't know if that means he is pessimistic or what.  Any thoughts would be helpful. 

Thanks.

[linnilue]

Just because a doctor says that they themselves would use a physician does not mean that that physician is good or that the outcome would be the best.  Trust me, I am the product of such an experience and my outcome wasn't good.  I had many complications and I wondered afer if given my outcome would my doctor really have chosen the doctor that he sent me to.   Trust your gut.  My advice to you, is if it is possible, go to the House clinic, by far they have the best outcomes on the west coast.  Furthermore, your son is young and he should seek the best treatment available to him.  Traveling might not be the preferred situation but in my opinion (and it is only mine)  I would go anywhere if it meant the opportunity for the best result.  The best of luck to you.  And I agree that he probably can go to his graduation with his doctor's permission.  I will be watching this post and saying a few little prayers for him and you.

[TP]

First of all my prayers are with you and your son. I had a large tumor and I had to have it out within a few weeks due to the location (brainstem) and some complications that were difficult on me physically. I did not have a lot of surgeons to chose from in my area. Many left my state a few years ago due to a large # of lawsuits. I did not ask my DR how many he performed over the years, maybe I should have. He is about 40 years old, if you do the math, he couldn't have done nearly the amount some folks have suggested.

In my opinion I don't necessarily think a "number" is what qualifies as a good surgeon. Obviously experience is critical but to perform 500 - 1000 AN tumors, I am sure not all were on the brainstem or large tumors that were removed. So my advise, ask your Dr how long you have to make a decision, the most important issue is that your son has the surgery at the appropriate time and not be delayed due to a schedule in making several appointments seeing different surgeons. Second, I would want to know all the facts. If my Dr gave me worse case scenario (like mine did) I felt he was being honest with me. In addition, my Dr was there for me 24x7. He gave me his cell phone to call, he came in the office on the 4th of July to see me. For my surgery, he brought in a nerve specialist to monitor my nerves while he cut out the tumor on my brainstem. My MRI shows that my nerves are in tack. Unfortunately my nerves were stretched over a long period of time over a sizable tumor. So bad news is, there is paralysis and eye issues. So ask your Dr about follow up and support.

We are here for you, our prayers are with you and I am sure you will do the right thing.