Know I had an XXL tumor and not a lot of treatment options. In responding here I do NOT know the size of your tumor or what your options are.
If your tumor is smaller you have several options, which I would implore you to explore.I was on my way to have the translab at House. I actually went there for a consult and found Dr. Brackman to be a very spry man and most personable. He was #1 on my list at
that date…
That date…I had this VERY egocentric neurosurgeon in Oregon call me on my cell phone, as I was in a taxi leaving HEI, convince me that my tumor may not be an acoustic neuroma but most likely a meninginoma. He explained that that by having the translab I could be sacrificing my hearing
for nothing. "Dr. Ego" of Oregon claimed my “hearing could be saved� with the retrosygmoid if it was not an AN tumor. SO then I went searching for surgeons who did the retrosygmoid with more experience than the Oregon surgeons (who I actually found he and his partner had malpractice suits on their files- when going to
www.healthgrades.com- the California surgeons all had
immaculate records and higher number of surgeries under their experience belts)
So we did the retrosygmoid in California … and yes it was an acoustic neuroma and not a menginoma. (Just as Dr. Brackmann predicted.) My hearing was lost and I came in that 2% higher risk and the facial nerve was also damaged. (Just as Dr. Brackmann had warned me
) I did get 60 % movement regain in my face however now I have synkenisis and hyperacusis.
If I was to turn the clock back (which I can’t) I would do the translab with Dr. Brackmann @ House for an XXL sized tumor.
Even though the accommodations @ House are not as luxurious as Stanford (nor the hospital) know that all the nursing staff etc are very versed @ HEI on what to look for with post- op complications with ACOUSTIC NEUROMA patients
specifically. I was in a hospital with
many other neurosurgery patients with various issues and when I had complications the staff was not as quick to indentify these- as I had hoped. It was also hard for my husband to be alone out-of-state while watching his wife in the condition she was- with no support. I think if we had stayed at Seton House @ HEI he would have found tremendous support from other fellow AN patient caregivers.
I literally have had to
bend-over-backwards to get post-op care referrals (vestibular therapy, neuro-muscular facial retrain therapy etc) where other patients here on the forum, which went to HEI, have gotten their referrals
immediately. HEI just does more AN tumors than any other institution (in the world) so there you get many experienced staff (including those running the facial monitor at the time of surgery. …Instead of so many students who are learning on the job)
My California surgeons did an excellent job of dissecting a massive and very vascular adhesive tumor. However my main surgeon is also a department chair, professor and an International public speaker. He seems to not be interested or have time to follow-up with me. He delegated much of the follow-up care to subordinates… that had me having to jump
too many hoops to get referrals for therapy etc. Not only is it important that you seek an experienced surgeon (which mine actually is and Brackmann trained him years ago… they have even written texts together) ….but one who ALSO provides
continuous follow-up care with their patients… even
after the surgery. I know from support group meetings testimonies that Dr. Brackmann actually phones his out-of-state patients: to check up on them, see how they are doing, and to reminder them to do their follow up MRI’s.
You need to know that Dr. Hitzleberger, Dr. Brackmann’s old neurosurgery partner, is around age 79 and is
retired now. Dr. Brackman is about age 72… but let-me-tell -you he is
very spry and sharp as a whistle
… still doing
successful surgeries. He now works with
young Dr. Swartz (just a kid) as his partner neurosurgeon (who ironically was trained by “Dr. Ego� in Oregon). I have heard very positive reports about Dr. Swartz –(and NO he does not have the ego problems his former Oregon trainer has -that phones people and makes wild claims such as
“I can save your hearing!� .I actually have a recording of this on my voice mail - to which we burned onto a CD)
With Dr. Brackman you will get a very personable and capable man. My own surgeon, to which he trained, is also a very personable and capable man- just too busy to follow-up with his patient whose surgery outcome was less than perfect… (to which some days I think he is in denial of…
)
Dr. Brackmann has
many awards on his wall from Canada, Britain … and other countries. If you have an opportunity to have him as a surgeon, before he too retires, -
jump on it! Know that Dr. Brackmann has also received awards from the ANA (and NO the ANA does not endorse medical practioners) but I am, as a PATIENT postie, just letting you know this information. (You can always google "Dr. Derald Brackmann Awards") He also has committed much of his life to help
patients… and he is one of the few I know of whose research is still trying to find "the cause" of AN tumors beside the already know genetics of NF2. (I make sure our corporate employee match donation goes to his research- specifically.)
So obviously you can see that even though Dr. Brackman was not my surgeon (he was on my interview list however) I think
very highly of him and I know he has a fantastic reputation with his
patients… because I personally keep hearing the testimonies from patients- first hand.
Trust me Dr. Brackmann is a gem!
Daisy Head Mazie
