Undecided; Need Feedback Please!

[Jessie127]

Hi Everyone,

  I'm 26 years old and live in Miami, Fl.  I was diagnosed with a 1.2cm acoustic neuroma and I'm currently scheduled to have surgery at the House Ear Clinic in CA in 3 weeks but now while still doing some research found the Skull Base Institute also in CA.  I've been to a few local neurosurgeon's but like I said liked the doctor in CA. 

  Has anyone had surgery in either place and if so what were the outcomes/were you happy with it?

Thanks,
Jessie

[Jsoule]

Hi Jessie, You will be in wonderful hands at the House Ear Clinic. I had my 1.7cm AN removed 10 months ago and doing wonderful. I didn't have any facial issues, just mild dry eye. Balance needed to be challenged after surgery and I feel I'm close to 100% now and doing everything as before. I had the translab approach and as expected lost the hearing on the operative side. This has been something that was harder to get used to that I first thought. If you want to talk more in detail, feel free to e-mail me at Makooda@comcast.net...Sincerely, Julie

[Jeff]

Hi Jessie,

I had surgery at House Ear Clinic in Dec. 2003. This was a total removal of a tumor the had been previously debulked at another facility. I won't say it was easy, but I am very happy with my outcome. There was a lot of scar tissue for the surgeon to pick through due to the previous surgery. Dr. Hitselberger did a great job. I have no facail  nerve damage at all. They even used the same incision as my previous surgery so I only have one scar. I was one of the very small percentage of patients who develop a spinal fluid leak, but that was a small setback. The doctors are great, very personable and accessible. They came to see me every day that I was in the hospital. Dr. Hitselberger even came to see me on Saturday and Sunday! Dr. Friedman called me each day of the weekend because he had to go out of town. I am very happy with the treatment I recieved there. In fact, because I am one of the unlucky who have NF2, I will go back to have my other AN removed when necessary. If I can be of any help, please let me know.

Jeff

[Jessie127]

Thanks,

   It's just as you all probably know and feel I'm an emotional wreck and this decision process isn't easy

[alibauer]

Hi Jessie,

Going through the same thing now, tumor is about the same size as well. Should I stick to my ENT and his Neurologist or go to Memorial Sloan-Kettering? It's difficult to make these decisions and a devastating time.

I'm so sorry you're going through this. Stay tough! It's the only way to beat this thing and recover.

AB

[wanderer]

I saw several surgeons  and asked them about the skull based approach.  they all were very concerned about that approach.  They said they could all do the procedure as they do it commonly on cadavers.   the concern was if they hit a major artery that there was no way to get the skull open fast enough to ensure the patient didn't have a stroke or die.   

[russ]

Hi
  Skull base and minimally invasive surgery are but experimental and under a 1000 of these have been performed since the inception of Skull Bases dept. of which Dr Shahinian is known for some 'shinanigans' in performing the very first endoscopic procedures w/o being a licensed neurosurgeon. In fact, he was a maxiofacial, plastic surgeon.
  Upon the depts. inception there was arguement between he and a licensed neurosurgeon upon Shahinians qualifications to head that dept. Shahinian took the matter to court and somehow won his right to subject pts. to potential disaster and possible death by bleeding out. There may have been pt. litigation against Shahinian by some for post surg. problems.  House Ear Institute rejects this mode of surgery for AN as does nearly every surgical center in the USA with the exception of another newer unit in CA. In short, if so successful, the idea and procedure has not caught on and i have read negative pt. stories of horror in recovery from this which extended in time well beyond the usual for traditional neurosurgical approaches.
  Best stick with HEI. There are always a couple radicals out there. Lederman in NYC, formerly of Staten Island University Hospital is a radio-oncologist radical; of course in my and others opinions.
  Russ
   

[sgrady]

jesse, you have got to listen to me.  something made me get on this website for the first time in 5 years tonight, when i was going through the same thing that you are.  i was diagnosed with a 1 cm. acoustic neuroma, and i was absolutley terrified, to say the least.  with a one year old and a three year old at the time, i researched the whole thing almost obsessively.  i went to surgeons, and was scheduled for surgery twice.  i can't remember the surgeon's name right now off hand but he was in nashville, tn. and was about as renowned as the house ear clinic in ca.  as i researched farther, i postoned my surgery twice, and ultimately decided to go the gamma knife radiation route with Dr. Dade Lunsford in piittsburgh.  he brought the whole prodecure to the united states.  he is the only one to go to, i'm telling you.  i came so close to having surgery it scares me looking back to think how much my life would have changed by doing so.  i know somebody who was diagnosed just prior to my diagnosis who decided to be brave and just jumped into surgery at the house ear clinic, and is now so sorry that he never looked into the gamma knife.  my life is 100% normal.  i never realized that life would ever return to normal after living with the fear that you are going through now.  my friend's life is ok, however, he falls over when playing basketball, or even on a run.  he so regrets that he never researched the gamma knife radiation.  i am so thankful everyday that i did.   my life could have been so different had i not.  but if you do do this, do not go to anyone but the best.  they do this treatment in lots of hospitals, but i totally believe that you should go to Dr. dade lunsford, universiy of pittsburgh.  he is the best in the country, and i think that that is key.   something made me get on this website tonight, for the first time since i was going through this terror myself.  i have almost wanted to block it from my memory since it all happened to me.  however, tonight i was just remembering all of that, and thought how lucky i am that my life is so wonderfully normal, that i decided to get on here again.  i hope by doing so, i can help you.  if you want to call me my number is 252-523-2405 home, 252-727-0717 beach or email rgrady@icomnet.com.  wish you the best. you WILL be ok.  susan grady

[kristin]

hey jessie! i would like to put in my two cents here! i'm now 14 weeks post op to middle fossa with dr brackmann and dr hitselberger from the House Ear Clinic. i am 100% back to normal and beyond! i had a small, 8x5mm left AN that was totally removed w/out any hearing loss or facial nerve problems. i have talked w/ at least 4 others in private email who have had the same surgery with the same outcomes by the same physicians at House.

i drove at 3 weeks post op, started work at 6 weeks (really could have started at 4, but since i had the time off anyway...... i played softball at 6 weeks (ok, this is still pretty interesting...running and trying to find the ball can get a little scary!). i now run 3 miles on the treadmill 2-3 times a week. i really believe that has helped me with my balance.

who is your physician at House? i know first hand that you will be in good hands there. please go read the information under micro-surgical options about the House Ear Institute if you have any more questions. feel free to email me as well (i know a lot of people have offered) krisnsyd@cyberport.net

kristin

[wanderer]

Sgrady,

I have a question for you.   If your tumor begins to grow again.  (it has been known to happen, recently many people have been on the site saying that is exactly what is happening to them right now)   who would you go to?

I for one knew I would not be able to live with the tumor still in there.  Every head ache would be the tumor, every odd twitch would be the tumor, every time I tripped it would be the tumor.     


I was out of the hospital in 2 days felt great,  I have a few other problems such as a staph infection but all in all I have felt fine.  I've been doing what I always have.   I did not have the opportunity to go to house.  But when I was having the staph problem I contacted them.  Dr Brackman said I am one of the 1 in 10,000 and it just takes longer for everything to heal up.

For the last year I have seen nothing but good things for house.   I have not seen many good stories from SBI. 

Too me it was the almost too good to be true thing with SBI.   it's barely surgery.    Then I learned how dangerous it was.

[russ]

Hi Wanderer
  You wrote: "I have a question for you.   If your tumor begins to grow again.  (it has been known to happen, recently many people have been on the site saying that is exactly what is happening to them right now)   who would you go to?

  It is common to follow surgical regrowth with Gamma Knife radiation and post radiation regrowth with surgery.
  At the moment it does sesm more who have had surgery and suffer regrowth are operated on again. With irradiation, repeat treatment is not for a long time after initial Tx. Besides, if it failed the 1st time, why repeat radiation?
  If surgery fails, possibly they left in even a few schwann cells, performed just a debulking, or the mechanism for producing the schwannoma still exists.
  Best wishes for staying AN free!
  Russ

[GM]

I think somehow we all will partly have "was it my AN" flash through our minds whenever we have a strange sound, pain, itch, headache, or whatever in the future.  Even if we had surgery or radiation.  We would never truely know without a follow up MRI.  I think it's something we'll have to try to deal with.  For me it's been over 2 years and some days are more trying than others.  Some days I'm the supporter, and others the supportee.

Gary

[Jessie127]

Hello everyone,

Thanks for all of your comments..............Like I said I'm scheduled for the House Ear Institute but now found the Skull Base and just wanted to hear different feedbacks....It's 6am and I can't sleep I've been up since about 5am researching........I'm an emotional wreck......This process is horrible and at least I feel some comfort talking here with people who understand...........Luckily my boyfriend and family have been great support too but I just don't like them seeing me like this.

Jessica

[GM]

Jessica,

I'm happy that you have loved ones to be with you through this, some people who post here live by themselves and have no one significant in their lives.  Also...don't forget that your human OK?  Somedays are harder than others...some are worse.  It's OK to let some of that pent up emotion out.  Remember even bolders can moved by storms. 

Gary