Author Topic: Newly Diagnosed - Who Should We Consult With?  (Read 2745 times)

KHC123

  • Newbie
  • *
  • Posts: 1
Newly Diagnosed - Who Should We Consult With?
« on: November 07, 2019, 09:58:41 am »
Hi all, my husband was diagnosed in the last week, and I can't tell you how helpful I am finding all of your posts.  I am taking the lead in terms of gathering information and handling the logistics side of things.  So thank you very much in advance...I am sure I will have a lot of questions!

What I think to be the "fast facts" about my husband's diagnosis are as follows:  He is 34 years old and has been complaining for at least three or four years now about a "full" feeling in his ear, ringing and pain in his ear, and headaches.  He saw an ENT who did a hearing test and discovered hearing loss (we don't have the exact percentage numbers on this until they send us the file, but I do note that he has never complained about hearing issues and we were surprised by that result).  He was referred for an MRI and they found an acoustic neuroma on the left side measuring approximately 24 mm x 16 mm.  Per his MRI report, there is "mild associated mass effect on the adjacent pons", which I understand to mean that his tumor is large enough that it is pressing against his brain. 

Based on my research, it appears likely that both radiation and surgery will be on the table as treatment options.  We want to leave no stone unturned, and we are willing to travel for whatever treatment option is most suitable and will give him the best quality of life.  We are located in Pittsburgh, PA, and I understand that we are lucky enough to have Dr. Dale Lundsford and Dr. Eric Gardner in our backyard (whether they are in-network on our insurance is another issue, but we are definitely consulting with them).

We have an appointment scheduled with Dr. Todd Hillman of Allegheny Health Network next week (this referral came from our ENT).  I have reached out to UPMC and requested that Dr. Lundsford review our records.  Records were sent to the House Ear Clinic in Los Angeles this morning.  Who else am I missing - are there any other groups that are the "must consult" doctors?  I like the idea of groups that do both radiation and surgery, as I understand that there tends to be a bias on treatment options (i.e., the surgeons recommend surgery, etc.).  It seems like outcomes are very closely linked to how often these doctors work on acoustic neuromas in particular, so I am looking for doctors that have a real particular interest in this condition and deep experience.

Any feedback on doctors that we should consult with would be hugely appreciated.  Many thanks!

Greece Lover

  • Full Member
  • ***
  • Posts: 181
Re: Newly Diagnosed - Who Should We Consult With?
« Reply #1 on: November 07, 2019, 11:46:22 am »
Sorry to hear that your husband joined the club, and you too, by extension.  My wife was super helpful to me in the whole process, taking the notes, etc.  It sounds to me like you've really thought of everything.  The one "good" thing about these tumors is that you have time, and so you can gather a few different opinions.  I've heard others talk of the resources in the Pittsburgh area, and of course the House clinic is the best, most experienced place.  The hard thing about these tumors is that there are so many treatment options, so that can be overwhelming.  Take your time to think and discern what seems right for you all.  You'll get a lot of anecdotal advice on these forums, which can be helpful, but should never substitute for the medical advice of a doctor.

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

sg_way

  • New Member
  • *
  • Posts: 11
Re: Newly Diagnosed - Who Should We Consult With?
« Reply #2 on: November 07, 2019, 12:59:08 pm »

 


anything