Do we stay local or go to House???

[nipanddale]

Hi everyone,

My husband and I are not sure what to do. We've already posted on the forum about his 3.5cm AN that will require a translab. We also shared that Dr. Babu from Michigan Ear Institute and Dr. Pieper from Providence Hospital are scheduled to do the surgery, BUT I can't shake a slight bit of discomfort with one of the doctors and it's probably nothing but a style issue and the bedside manner could be improved. So today I decided to find out if House was covered under my insurance and it seems that Dr. Brackman and St. Vincents are covered. I haven't checked out the neuro surgeon but I will on Monday. My husband and I aren't sure what to do, do we travel from Michigan to LA, incur extra costs and spend all the time away from our family, our home and our pets or do we do it locally? How do you know that the extra work is worth it?

Any thoughts?

nip

[Battyp]

What a hard decision.  What does your "gut" tell you?  You can not second guess the what if's.  House is highly reputable, many have had their surgeries there with great outcomes and some not so great outcomes.  Everyone is different.  I was just explaining to my sister in law today that you could take two people the same age, same size tumor, same side tumor, same doctor and have two completely different outcomes.  Which to me makes this whole decision thing a difficult one.  Have you talked to anyone who had surgery with the one's you've consulted with?  How many AN surgeries do they do a year?  Best of luck in your decision..my prayers are with you!

[nipanddale]

Hi Batty and Bruce,

Thanks for writing back. Your right, this decision is so hard, there is no easy answer. My husband would rather stay local so that he can be close to family and friends, but there are so many things to consider. Dr. Babu has mentioned Dale needing two surgeries and according to House they only go in once 95% of the time and supposedly they are the only ones who supposedly can say that. If I knew for sure - I would think that this is enough to travel to LA. The other thing is that people in the local support group that I've spoken to are saying if they could do it over again they would go to House.

I'm sick to my stomach, it feels like I am digesting my heart. I guess the question I can't shake is why wouldn't we go to the best in the world if we could?

Signed Confused a.k.a. Norma

[ppearl214]

Hi Norma:

I think batty and Brucifer really do hit things on the head.  There are some that believe "forget the bedside manner, if they know their stuff and do it great, then heck, I can deal with crappy bedside manner".. as well as keeping family/lifestyle/financial/locality in mind as well.  You know what situation works best for you and Dale's lifestyle situation (ie: do you travel cross country away from family/friends or do we stay local?)  Having faith in your medical team and their experiences and qualifications, to me, are the factors that should be of utmost consideration.

I have faith in you both to take a deep breath, sit back, maybe sit down and write out a Pro/Con's list for for your local team and House Clinic... and maybe that will help with your final decision?  Just a thought....

Please hang in there.. and please give Dale best wishes and huggles as well.

Phyl

[Lisa Peele]

I know many people wrestle with this same decision.  We did...and at first I was much more comfortable staying local and being near my family than making the long trip to CA and spending 2 1/2 weeks away from the kids.  My husband, however, was not willing to take the risk of staying in town and having surgery with someone who only sees 10-12 of these a year (even though she's considered one of the best neurosurgeons in town).  It was a decison, he said, that could impact me for the rest of my life.  He felt strongly that we had one shot to get the tumor out without damaging me, and the best chance at that was through being treated by doctors who specialize in AN.  He researched and sent my MRI films out for consult without me knowing.  I actually scheduled my surgery in town and that night found notes on his desk with complication rates and outcomes from other facilities.  At first I was confused and frustrated.  I had just come to terms with the fact that I had the tumor and would be having brain surgery...and he wanted to throw travel into the mix...and doctors we had never met. 

But, I was not the one doing the research.  What he found was that House does over 300 AN removals per year with 50 of those on tumors the size of mine or larger.  He asked specifically for outcomes on tumors similar to the size of mine and found that the complication rate at House was hugely reduced compared to what the neurosurgeon quoted here.  I thought, "He's shopping my surgery!"  It was like getting a quote on a car you'd like to purchase.  But Dr. Friedman was so confident that they could handle my case (even with the significant brainstem involvement) and get me back to my life...and we did not hear that when we met with the doctor in town.  She was straightforward and blunt when she described that I could be in surgery 8-18 hours with 5 days to 2 weeks in the hospital afterward.  Then there could be effects from the surgery for which I would require physical therapy.  There was a good chance I could have facial paralysis and swallowing difficulties.  A CSF leak was a real possiblity given the size of my tumor.  All this in addition to guaranteed deafness.  She showed us a model of the brain and where all of the cranial nerves come together, and why extracting these tumors can be so difficult.  She said she felt badly that I could come out of the surgery with so many issues considering I was sitting at her appointment looking and feeling very much myself (no issues other than hearing loss in the right ear).   She said she usually felt like she was helping people by taking out ANs.  With a tumor the size of mine, patients would often come to her with severe diziness, headaches, facial issues, trouble walking, etc.  She made it clear that the priority was to get the tumor out. 

Dr. Friedman (at House) told my husband that his ultimate goal was to get as much of the tumor out as possible without adjacent nerve damage.  He quoted 6 hours in surgery (it ended up taking only 3 1/2 hours from start to finish).  I made it through with no other complications and was only in the hospital 4 days (one day in ICU and 3 in a regular room).

If things did not turn out as well as they did, at least I would have known that I had every opportunity for the best outcome.  A huge weight lifted off my shoulders when I realized that this experienced team of doctors (who had seen every contingency that could possibly happen during the course of surgery) was operating on me.  My husband and I both had such a relaxed, positive frame of mind heading into surgery...and that helped immensely.  Only you know how comfortable you are with the options presented to you.  Know that you do have a choice and a say, and know that the rest of us will be pulling for you and wishing you the best!

Please let me know if I can help in any way!

[nipanddale]

Lisa-
could you tell us about your post-op experiences? Did you (or do you still) experience anyt side effects? I swear- if I still have tinnitus after the operation, I'm going to be very annoyed! I can't imagine having tinnitus in an ear you're deaf in! I have heard from some that this is a possibilty. Also, did you have headaches? facial weakness? anything?

Your post makes me feel better, but I'm still worried and afraid. Thank the Good Lord I have a wife who, like your husband, is taking care of all the research, arrangements, and putting up with my fragile sensibilities throughout this process.

Dale

[Battyp]

Dale unf. the tinnitus will not go away after surgery even if you have translab and they remove all the nerves in your ear...you have a whoshing sound.  It's something you'll learn to live with and curse daily!  I have it in my good ear since surgery but it's not as loud as the bad ear so it's hardly noticeable....sorry to be the bearer of bad news...

[Lisa Peele]

I have also heard that some people have tinnitus even after surgery, and I don't know why that happens sometimes and not others.  I can tell you about my experience, though...

I have no facial paralysis, no headaches, no balance issues, and no ringing in the ears.  I was walking by myself the day after surgery, and was sitting by the pool at the Westin St. Bonaventure (in LA, just a few minutes from the hospital) 3 days later.  My husband and I actually had an amazing time in Southern California, and made the most of the trip (spending time in San Diego, Santa Monica, Malibu, Santa Barbara).  I felt good enough the week after surgery to be at the beach, shopping and going to dinner.

By the time I got home from California (2 1/2 weeks after my surgery), no one could tell I'd even had surgery.  I don't know if you've read any of my other posts, but I just celebrated the two year anniversary of my surgery (June 14).  Today, I'm happy and healthy and am expecting my 5th child in August.  I've had a follow-up MRI which shows that the tumor is completely gone.  You can view my profile and scroll down to read my previous posts for more of my story.  I am also glad to email you with any other information you feel would be helpful.

My situation before surgery was quite precarious, even though I was not exhibiting symptoms other than the hearing deficit.  My tumor was severly displacing my brainstem (photo at left) and lower brain structures.  It was amazing to me that I made it through the surgery without complications.  I can tell you that I was overwhelmed by the quality of care I received at House/St. Vincents.  My experience far exceeded any hopes or expectations I had.

After surgery I experienced very minor balance re-adjustments for a few weeks (putting on pants, or walking in the dark for example), but it came back quickly.  At first, I felt tentative about moving in tight spaces or being around lots of people. 

My eyes tired easily for the first few weeks, and I was sensitive to bright lights, especially the headlights on cars at night.  I was able to work on the computer for long stretches by the second week.  I had no double vision.  My right eye was slightly dry for the first few months after surgery, and I used drops a few times a day when I felt I needed them. 

As far as headaches and other discomfort, they gave me morphine in ICU.  Then, I took Tylenol for the first 2 weeks only about once a day. I had a prescription for Darvocet--I only used it twice. 

I had slight nausea and dizziness right after surgery (for the first 24 hrs.), but that wasn't a big issue either.  I had a bit of right-sided facial weakness due to swelling, so my smile was a little crooked and I couldn't open my mouth all the way...which lasted for a few weeks.  I noticed improvements literally on an hourly basis.  By a month out, I was just dealing with the fatigue you would expect after major surgery, but I was able to care for my family by then and to handle all my regular responsibilities (I just took it a little slower than ususal and didn't push myself).

As far as hearing loss, my hearing was garbled before surgery.  Honestly, once the swelling subsided(a couple of weeks after surgery), it was a benefit to not hear all of the "noise" that I had in the AN ear (it was like a crackle).   I actually think I have some hearing in my right ear still although they tell me it's impossible.  Regardless, I am no worse off than I was before surgery!

I had some "whooshing" & "thumping" noises before surgery and had just started to experience other "head noise" just before the tumor was removed.  Today, I have absolutely no "head noise" of any kind .

I am more than happy to email you more specific information about what I experienced when I came out of surgery, or about our trip to CA (or anything else you want to know for that matter).  Just let me know...

[Jeff]

Hello,

I have NF2 and have had 2 surgeries on my right side, none on the left yet. I live in Wyoming, so I have to travel to get anywhere!  That said, I chose to have my second surgery at House performed by Dr. Friedman and Dr. Hitselberger. My experience is very similar to Lisa's although I had already lost most of my hearing as a result of the first surgery. I was one iof the unfortunate few who developed a CSF leak after surgery, so I got to "enjoy" a few extra days in the hospital. Also, I have tinnitus, which I have gotten used to. I decided right away that I wouldn't pay attention to it. I have no facial problems, just a dry eye that is easily cared for.

Surgery is tough, regardless of  where you have it done. I think that you need to consider the fact that House quotes shorter lenghth of time for surgery, rarely need top perform a second surgery, and are very experienced. The way I see it, my choice of surgeons affects far more than a few weeks. The inconvenience of travel is now a passing memory, but the resuts of the skilled surgeons is with me every day.

Certainly, everyone has personal considerations to make. My wife and  have had to leave my daughter with family twiice for periods of about 3 weeks before she was 5 years old so that I could have surgery. That was tough, but we survived. I am glad that we did it though, so I could have what I viewed as the best chance for a great outcome. Please notice that I said chance. I think we understand that there are no guarantees.

I wish the best for you and your husband,

Jeff

[Captain Deb]

Just responding to the question very simply: Go to House Ear Clinic. Period, end of sentence. You will never have to second guess yourself as to whether you made the choice for the best surgeons or facility. Look at the long run and the big picture--immediate comfort or long term results.
Captain Deb

[russ]

Hi Nip!

  Of course HEI has a great reputation but one might consider Mayo Clinic, Rochester, MN if they are seeking Translab. It has become quite a common procedural type, though HEI did perfect it years ago, probally by Drs. Slaherty or Dr House.
  I see Drs Driscoll ( Otologist ) and Link ( Neuro/GK surgeon ) at Mayo and am quite confident in the number of surgeries and expertice the dept. has. There are others who do AN work there also. Both seem to have good manners, to me.
  The clinic, as a whole, impresses me as to their pt. service and caring attitudes.
  Best wishes for your best choice!

  Russ

Hi everyone,

My husband and I are not sure what to do. We've already posted on the forum about his 3.5cm AN that will require a translab. We also shared that Dr. Babu from Michigan Ear Institute and Dr. Pieper from Providence Hospital are scheduled to do the surgery, BUT I can't shake a slight bit of discomfort with one of the doctors and it's probably nothing but a style issue and the bedside manner could be improved. So today I decided to find out if House was covered under my insurance and it seems that Dr. Brackman and St. Vincents are covered. I haven't checked out the neuro surgeon but I will on Monday. My husband and I aren't sure what to do, do we travel from Michigan to LA, incur extra costs and spend all the time away from our family, our home and our pets or do we do it locally? How do you know that the extra work is worth it?

Any thoughts?

nip

[Sefra22]

Hi Nip,
I can't give the kind of medical advice like some other posters here, as I was only diagnosed a few days ago. However, I strongly agree with Battyprincess to go with your gut. The first ENT I went to gave me an uneasy feeling. I have never had less confidence in a Dr. before. Without even examining me, or giving me a hearing test, he told me my hearing loss was due to my 60 lb.weight loss and recommended surgery on my eustacian tube. Although I found out that this does happen (very rare), it was not MY problem. While in the exam room waiting for him during my second appointment, I had the overwhelming feeling that something wasn't right, and felt like leaving.  A few days later I asked my primary care physician to refer me to another ENT. Within a few days I met with my current ENT, had my MRI, and now know the real reason for my hearing loss. If I hadn't followed through on those feelings, who knows how long it would have taken for a true diagnosis.
Whatever you decide, I hope all goes well for you

[Raydean]

I know that this must be a difficult decision.  But from my perspective, as a ANer with outcomes I would cast my vote is for going with the most experienced medical team, which would be The House Ear Clinic.  That's not to say that you wouldn't have a good outcome with your local doctors, you could have a very positive outcome, but it's a gamble.  You want a medical team that has seen it all, done it all many times over.  It's critical to your having the best posible outcome.

I was treated locally on an emergency basis and wished I'd had the opportunity to be treated by The House Ear Clinic Doctors.  Regardless of who operated there would of been outcomes due to size and location (6 cm  with massive brainstem involvement)  But had The House Doctor's treated me, or an experienced Doctor in our region such as The Seattle Ear Clinic I would of HAD FEWER QUALITY OF LIFE ISSUES.    That's the sum of the equation.

Best to you
Chet

[eyedocjim@gmail.co]

We took our 16 year old son to House in February, after going through the same thing you are. We have a great neuro-otologist here who treated us wonderfully and is a fantastic surgeon, but we knew that House did a lot more of this operation than anyone else. My wife and I flew out to LA to check it out. After talking to Dr. Brackmann for five minutes, our decision was made. As others have said, you have to trust your gut. At HEI you get expertise AND bedside manner.

We brought Brian out there the next week for surgery. Everything you read on these posts is true. They have the most experience in this kind of surgery, although as someone said below, you can have  a less than satisfactory result anywhere.  For the most part the facility was great (we hated his ICU nurse Sue, but everyone else was terrific) and the care he got was top notch. Don't get me wrong, the first couple of days are hard (nausea, dizziness, urinary catheter) but you'll have that anywhere. He has some hearing loss and tinnitus on that side, but his facial nerve is perfect and otherwise he did great.

I spoke to a friend of a friend who trained at HEI and is now a university based neuro-otologist. He told me that we should just go there, because if something happens at home you'll regret it forever. If there's a complication at House, at least you'll know you went for the best. This logic is a little circular, but feels right.

At least send your MRI out there--they will be happy to do a phone consult. You're lucky your insurance works out there.

Good luck with your decision. Our thoughts are with you.