Author Topic: Newly Diagnosed  (Read 4268 times)

bgaard9

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Newly Diagnosed
« on: January 15, 2013, 06:13:39 pm »
My 20 yo son was diagnosed with a 2.7 x 1.6 x1.7 left side AN on 1-2-13.

Additional 2.6 x 1.9 cm enhancing lesion in the left masseter, a 1.5 x 2.3 cm lesion in the left posterior cervical soft tissues and a 1.1 x 0.8 enhancing lesion in the posterior left subcutaneous soft tissues.

He had surgery for papillary thyroid carcinoma in July 2011. He also underwent radioactive iodine ablative therapy over his winter break during the 2011-12 school year.

No one has suggested that there is any connection between the two.

We are located in Kansas City Missouri and it seems that the choices are slim for remaining local to find treatment.  He has seen a neurotologist here in town who is working with a young neurosurgeon just a year out of a fellowship in Portland.

My son is currently a junior in college and is mainly disappointed about missing a semester of school. He is a smart kid majoring in nanoscale chemistry with a minor in mathematical science.

I am a little unsure about the local options due to the low volume of surgeries of this type that they do. They are recommending a trans-lab approach. 

Travel to the west coast is a little daunting. UAMS in Little Rock Arkansas has a center for skull base surgery with Dr. J.D. Day (who used to be clinical director at House?), we are still open to all options and doing our best to evaluate our options.

Anyway my name is Charles and my son is Oliver and I thought I should jump in and make a post after many hours of reading the information on the forum.
« Last Edit: January 15, 2013, 07:46:20 pm by bgaard9 »

bgaard9

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Re: Newly Diagnosed
« Reply #1 on: January 18, 2013, 06:37:42 am »
VNG test today, there is an opening for surgery here in Kansas City on Feb. 12th.  Still in a quandary about staying here in town for surgery or traveling somewhere.

Charles

Jim Scott

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Re: Newly Diagnosed
« Reply #2 on: January 18, 2013, 08:30:59 am »
Welcome, Charles ~

The AN diagnosis is always daunting and uncommon - but hardly unknown - in young adults.  I caution you and your son to be prudent in selecting a medical team and facility to perform AN surgery, if surgery is your choice.  I am unable to offer any specific recommendations and I'm not in your geographical area but House Ear Institute in Los Angeles is renowned for AN surgery and offer a no-cost, no-obligation second opinion for AN patients if you send them a CD of Oliver's MRI scan.  I was fortunate to locate a mature neurosurgeon with decades of AN surgery experience and enjoyed a good outcome (no complications) to my AN debulking surgery and follow-up irradiation (FSR).  However, had I not found this doctor, who was local, I was prepared to make the 3,000 mile trip to L.A. to have my large (4.5 cm) AN removed by physicians with extensive experience in this demanding surgical procedure.

I hope some of our members who may have information on doctors in and around Kansas City will respond to your message.  Meanwhile, thanks for joining and posting.  Our collective thoughts and prayers go out to you and your son as he grapples with this vexing medical problem.  Please know that although we're not doctors, we're here to help with information, advice and, most of all, support from those who understand the challenges of an acoustic neuroma diagnosis. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

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Re: Newly Diagnosed
« Reply #3 on: January 18, 2013, 09:06:07 am »
Charles,  You might want to try Univ. of Iowa and Dr Bruce Gantz.     I live in central Iowa and go there for my care.  I have NF2 and have had 3 tumors with surgery.      He is a neurotologist and head of the Otolaryngology dept and which has been very highly rated.    They do around 70 ANs a year and he has been my dr for 12 yrs now.                    Having treatment and recovery time may seem like a long period of time in the moment but in the long haul isn't as long as one thinks.         Making a choice for the right dr is important esp with your sons case.       There have been many who have come from out of state to Iowa City.           I hope we can beof help here for you both.
                                                                                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

bgaard9

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Re: Newly Diagnosed
« Reply #4 on: January 18, 2013, 04:25:03 pm »
Oliver is a little concerned about having a long car ride home (or a flight) after surgery.  We meet with the neurosurgeon here in KC on Monday.  He seems qualified but relatively new, he went to Stanford med school and did a residency in neurosurgery at Mayo, but just finished his fellowship in skull base surgery in Portland Oregon in the past year.  We really look forward to meeting him.  The hospital my wife works at (St. Luke's) just opened a new Neuroscience Center but seems to specialize in everything else but skull base surgery.

kmr1969

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Re: Newly Diagnosed
« Reply #5 on: January 18, 2013, 06:43:22 pm »
Charles,

Tell Oliver not to worry about a long plane ride.  I flew from Maryland to California for my surgery at the House Clinic.  While the trip back home was exhausting, it wasn't painful or anymore difficult than any other redeye flight.  Actually, for the the first time in my life I was able to sleep on a plane.

Do your research and make sure you and Oliver are absolutely confident in your surgical team.  When I was doing my research on this forum, I read a post that said 'there are no do overs' and that stuck with me. 

I had a lot of anxiety, as I think most people do, leading up my surgery date, but I was confident that my wife and I had made the right choice of doctors.  That made all the difference on the day of surgery as I finally felt a sense of peace that I had done all I could and now it was out of my hands.

You can't go wrong by at least sending a copy of the MRI to the House Clinic.  As mentioned, they give you a free phone consultation.

Good luck and I hope everything goes well for Oliver.  It certainly sounds like he is due to catch a break.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

Cheryl R

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Re: Newly Diagnosed
« Reply #6 on: January 19, 2013, 03:33:08 pm »
Hello and if by some chance you ever did want to go to Iowa City for TX, the airport is at Cedar Rapids 16 mi to the north.     I always have had a 2 1/2 hr drive home with no problems.        Just a FYI as where one goes is your choice.         I just hope for the best for Oliver and family!
   Iowa City has several hotels with hospital rates also.                                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: Newly Diagnosed
« Reply #7 on: January 19, 2013, 11:43:11 pm »
I'm one who stayed close to home (Chicago area) and I'm glad I did for numerous reasons.

If you can find someone experienced and qualified close to you there is really no reason to travel a distance.

Best of luck to Oliver on his AN Journey,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

bgaard9

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Re: Newly Diagnosed
« Reply #8 on: January 22, 2013, 05:57:14 pm »
Well, the neurosurgeon we were going to talk to on Monday was unavailable due to an emergency surgery. Appointment is rescheduled for Thurs.

Everyone in the local medical community that we have talked to speaks very highly of the ENT neurotologist that we have seen.  The neurosurgeon seems to come with great credentials but is only a year out of his fellowship.
I would have to say that we are leaning towards doing the trans-lab here locally in the just opened  neuroscience center with 4 ORs and a new 18 bed neuro ICU and 68 dedicated hospital beds. 

I sent the MRI etc. to House but haven't heard back yet. Surgery here is tentatively schedule for Feb.12th.  My son is anxious to get this behind him and return to school as soon as possible or even do some substitute teaching at his old high school before the end of the semester and look for an internship of some sort here in town.

If anyone knows of a great summer opportunity for a 21 yo old college junior who has had calc III, organic chemistry, genetics and a whole slew of other tough courses, he would be interested if his recovery allows. 

He is majoring in nanoscale technology with an emphasis in chemistry and a minor in mathematical sciences.  He says today that he wants to do research on hearing prosthetics but tomorrow it may be who knows what.

It will be a long wait till Thursday afternoon.

Charles

sidecar Kathy

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Re: Newly Diagnosed
« Reply #9 on: January 22, 2013, 09:20:39 pm »
Hi Charles,
I encourage you to post something on the ANA's Facebook as you might find someone in your area that has or had an AN.  I did and I found Kristin here in GA that had Trans Lab surgery by the same doctors that I am going to have.  Meeting someone and talking to them is a great help.  My husband and I met Kristin and her husband and it has helped me out a lot.  I know surgery is in my future and yes its stressful but your son is young and he will heal fast and be back to school in no time.   I wish you and your son all the best. 

I sent my stuff to "House and within 3 days after mailing it I heard from a doctors secretary and a week after that I talked with a doc.  I am sure you will hear from them soon

Kathy

 


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