Skull Base Surgery - Input and Advice on Doctors and Hospitals

• By Nan77
• Reply 2974178
• April 9, 2012 at 9:18 am
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My search is for fully endoscopic neurosurgery.
My 24 year old son has a pineal lesion.

Mayo told me they don't do that. (MN)

This is what I have so far...


Skull Base Institute, Dr. Hrayr Shahinian, LA California www.skullbaseinstitute.com


CAROLINA NEUROSCIENCE INSTITUTE Dr. Fukushima, North Carolina
http://www.carolinaneuroscience.com/history.htm

And I'm in the process of getting more information on
Johns Hopkins in Maryland.

• By PDJ62
• Reply 2978422
• April 10, 2012 at 8:20 pm
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I have a rare rather large trigeminal schwannona treated by Dr. Michael Link and others at Mayo July 2008 with Gamma knife stereotactic surgery. So far, no further growth! Just set up yearly follow up MRI for end of June. I also got a second opinion at johns Hopkins and neurosurgeon and radiation oncologist agreed they would have done exact sam thing Mayo Docs did. Hope this helps you. Best wishes for a great outcome!

• By pothyme
• Reply 2979339
• April 11, 2012 at 8:50 am
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I have a meningioma compressing the brainstem. I am in watch and wait mode with a neurogeon at John Hopkins, Baltimore, MD. They are number 1 in Neurology/Neorosurgery. I realize, where each person goes depends on where they live. Good luck with your search, and best wishes for a good outcome.

• By scoobydoo123
• Reply 2982219 · In reply to 2979339 by pothyme
• April 12, 2012 at 9:14 am
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I also am in wait and watch mode at Johns Hopkins for a pilocytic astrocytoma. Not real happy with Hopkins though. They did not tell me all of my options prior to my surgery. They went ahead and recommended a crainiotomy which was not successful due to the location and scar tissue (from a previous crainiotomy) getting the the way. I just got the feeling that since they are a teaching facility that they wanted a patient to do a surgery on for the benefit of training. Another surgeon that I had spoken too told me that endocscopic surgery probably would had been the way to go and Hopkins does have that type of surgery but they never gave me that as an option!

• By gloria23
• Reply 2982416
• April 12, 2012 at 10:18 am
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Sorry to hear about your situation.

We had an appointment at Johns Hopkins but canceled it because their Skull Based Surgeon only had 5 years experience (practicing) and was not yet board certified.

Good Luck

• By scoobydoo123
• Reply 2982541 · In reply to 2982416 by gloria23
• April 12, 2012 at 10:57 am
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I don't blame you for cancelling. You want someone that has alot of experience for this type of situation! I just printed out something on Carolina Neuroscience Institute (Takanori Fukushima, MD.) Looks like he specializes in skull base surgery and has lots of experience....www.carolinaneuroscience.com

• By gloria23
• Reply 2982801
• April 12, 2012 at 12:25 pm
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Status to date
Cleveland Clinic - very poor assessment and recommendation
Mass. General Hospital in Boston - looks very good.

Next up
MD Anderson Houston
Mayo Clinic MN

• By OliverKid
• Reply 2983221
• April 12, 2012 at 2:42 pm
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I have a preliminary diagnosis of a benign meningioma of the left temporal lobe, above and a little behind the ear. Consulting at Mayo Clinic's neuro-oncology on May 1. I read somewhere that every brain tumor has to be removed yet I have heard people are watching and waiting. Anyone care to comment on what they KNOW about this? Anyone else with a meningioma?

• By OliverKid
• Reply 2983278
• April 12, 2012 at 3:02 pm
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After my diagnosis, I went online and started researching neurology and brain tumors in Minnesota and Mayo was number one. On other sites where I read scholarly articles, I found most of the articles to have their origins at Mayo. I am very fortunate to be only 115 miles from Rochester, Minnesota. My primary physician told me, we have two very good neurologists on staff. I told him, "Mayo has 80 physicians who specialize in brain tumors, and I would like a referral to Mayo Clinic."

In order to be seen at Mayo in MN, you can fill out the form online at MayoClinic.com or your doctor can give you a referral by going online into their system. Mayo then calls you to get your insurance information (and they take almost everything). You will then fax everything you have about your condition. I faxed all the paper relative to the tumor and my primary MD faxed the rest of my medical history (tons!) on Friday, and they called me with a patient number that day. I was told that they are extremely busy in that department and the wait could be long. They told me they have a triage doctor who reviews the case and determines 1) Should you be seen? 2) How soon should you be seen?

I was called before the end of the day on Monday (last) with an appointment for May 1.
You are given an appointment with a doctor (mine is a neuro-oncologist) who then manages your case, coordinating referrals and tests. They told me to expect to be there as long as 5 to 7 working days. They do have facilities for people who can't afford an hotel for that long of a period. I don't know anything about costs.

For other medical conditions, I have heard they plan all appointments, referrals, and tests practically back to back so you can get out of there and not have to come back for further testing. In this case, the doctor won't see my CDs of film from my CT and MRI until I get down there.

Meanwhile, i am trying to maintain my calm because I have insufficient data for freaking out. I do have sufficient data for being shocked though. I was pretty shocked. I may freak out when I am given more data, but not yet.

• By OliverKid
• Reply 2983283
• April 12, 2012 at 3:03 pm
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What does everyone mean by skull-base?

• By Nan77
• Reply 2983628 · In reply to 2974178 by Nan77
• April 12, 2012 at 5:40 pm
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Skull Base Surgery is a neurosurgery specialty,
and refers to areas of the brain near the top of the brain stem,
and areas around it, from my understanding.

• By PDJ62
• Reply 2983787 · In reply to 2974178 by Nan77
• April 12, 2012 at 7:06 pm
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Olive Kid - Sorry to hear about your diagnosis. I called Mayo myself after the largest teaching hospital in Milwaukee's neurosurgery dept told me truthfully that they had never dealt with my type of tumor (trigeminal schwannoma). I got an appt about 2 weeks away. The first time I went, they also told me to plan on being there up to 5-7 days. That way, if the decision is to proceed with surgery, you will be able to stay. All the hotels have discount rates for Mayo patients. I like the Extended Stay South - it's like an efficiency apt - kitchen w/refrig, stove top, sink, stove top; extra room and no more $$ than other hotels. I have also stayed at the Econo Lodge and liked it. I wanted to be close to St. Mary's where the Gamma knife is done and stayed at the StayBridge Suites across the street - I do not recommend it as it was very expensive and not worth the $$. It seems some of the hotels actually want to capitalize on our ill health!

Back to the Mayo, the first day, I saw about 5 different doctors, including the Chair of the Dept. to the neurosurgeon that would conduct the Gamma knife radiation on my tumor, Dr. Michael Link. I was there only 2 days and had the Gamma knife scheduled for two weeks later. Since then, every time I have gone for a follow up MRI, I have the MRI either in the afternoon before or early the morning of the meeting with Dr. Link and the neurologist who specializes in headaches. The system is able to have an MRI early am and have the radiologist read it and get it to your doctor as soon as 7 hours later. The only time I stayed more than 2 nights was when I attended the Pain Rehab Clinic for 3 weeks.

I hope this information helps you not to freak out too much. It's a normal reaction to being told you have a brain tumor that requires immediate attention. I had the concentrated radiation about 4 years ago and, so far, so good - no further growth! Though I would much prefer it was actually causing the tumor to lose mass and "shrink" in on itself, I'll take no further growth!

• By Nan77
• Reply 2984156 · In reply to 2974178 by Nan77
• April 12, 2012 at 10:03 pm
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My son's surgeon is at the Skull Base Institute in LA. Dr. Shahinian.

I'm having to explore possible alternatives because our healthcare insurance
refuses to pre-authorize coverage for brain surgery with Dr. Shahinian.
"out of network" and "new procedures that have to go into review"

they say "we'll let you know after we receive the bill if it's covered, and at how much".

Problem is, brain surgery isn't cheap, nor is the travel expenses to go and stay there....

My son's got a 1.4 CM neoplasm of the pineal gland.

He got sick suddenly, when he was 20 years old and living in an apartment at college.

That was nearly four years ago.

Nobody seems to be able to confirm that his illness is caused by his brain cyst.
We are told surgery will be as diagnostic as it is a hope for relief.

no promises.

so my son's twisting in the wind.

No one will validate his debilitating symptoms because they have no diagnosis to prove what's causing it.

we applied for, and were denied social security disability under my husband's benefits.
We appealed and just learned he's getting a hearing on May 2

All I can do is tell the judge that my son got suddenly so sick, he couldn't move for weeks,
and he's never recovered from that.

it's such a long, dark night of the Soul, this entire time, not knowing....

and now

we know.. but no one else really knows....
and that sucks.

I know from the research I've been doing that there's something very fishy about all of this.
very fishy.

What is it about the Pineal Gland Cyst that causes neurosurgeons to declare they don't cause problems?

if you got problems, and you got something in your brain that doesn't belong there,
and a dozen other specialists rake you over the coals to find NOTHING causing the illness...

I'm mad as hell to realize that any neurosurgeon would dare to claim no symptoms in the presence of symptoms.

I really don't get it.

And I feel like I been stepping over the sick and injured all over the internet who, like my son,
have been suffering long and hard without benefit of any medical intervention...

what really burns me is that the top endocrinologists and neurologist and neurosurgeon
have the "stones" to admit they know absolutely NOTHING about the Pineal Gland, or how it functions in our body,
or how this cyst may be altering my son's brain function.
"we do not know".

Okay. So how do you freakin' know the cyst isn't causing problems?!

And how does a person explain to a benefit hearing judge what he cannot get anyone else to prove for him
unless and until he gets the surgery?

and without benefits, it's unlikely we'll have the money to get him to the surgery.

such a black dark hole my son seems to be caught up in,
and i'm so exhausted with all these "experts" who don't know that they just don't know.

I know that Dr. Shahinian is watching over my son while we sort out all this insurance mess.
I also know that if anything changes in his symptoms, and he looks like he's turning "critical"
this doctor will help my son even if we don't have the money.

In the meantime, I was doing my best to find someone nearer to home who does have the same experience,
and success, and the same compassionate care my son's received from Dr. Shahinian and his staff.

what a mess.
There really is something very strange about these neurosurgeon's declaring "incidental and asymptomatic"
every time they see a pineal cyst.

very strange, indeed.

• By TheWellnessCoach
• Reply 3002355
• April 20, 2012 at 6:57 am
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Good morning! I have to be honest, I have not read all of the comments above ... but I am stopping for a moment, as I was in search of the information posted above for the Skull Base Institute. A good friend had surgery performed there 15 months ago. It saved her life. The affiliated surgeon has been researching his technique, has developed his technique, procedures, and tools for the type of surgery he performs & with his kind, considerate, excellent team changes peoples lives one at a time. At 46, she is happy to be home with her husband and two daughters without brain damage or deleterious side effects.

My friend flew out on a Monday and back the following Tuesday. I saw her on her arrival home. She had an incision in the back of her skull about 3 inches, which her hair covered. Of course, was tired after brain surgery and a flight across the country. She wasn't to bend over for 6 weeks, so her kids helped mom with her shoes. She has recovered nicely. The photos taken during the surgery clearly show the journey thru her brain, the tumor that was growing across the aquaduct, backing up her spinal fluid, and that would have killed her in a few short months had she left it up to the doctors in our area that had refused to even perform an MRI.

Skull Base did all their presurgery consultation work over the phone with both her and her husband. The staff handled all of the insurance issues proactively, kindly, and with true heart.

When we were researching techniques ... this was the most viable, safe, and non-invasive surgery available today. It has a better outcome and with less damage.

Of course, the choice is where you are most most comfortable ... but, if it was my decision ... the Skull Base Institute would be at the top of my list.

And ... every surgery and every surgeon starts somewhere ... don't think that Mayo, Johns Hopkins, Cleveland Clinic aren't teaching new surgeons ... also, remember that alopathic medicine doesn't embrace change ... and in the world of "sue sue sue" a new technique is often not embraced by "old team" ... but lets face it DOS was great but WINDOWS is better ...

All my best wishes for your success!

• By rdf
• Reply 3010441 · In reply to 2983221 by OliverKid
• April 23, 2012 at 4:34 pm
• Report post

Olive Kid and Gloria 23.
I live 1.5 hours from Rochester MN Mayo. I have had 2 surgeries performed by Dr Link(neuro surgeon)/Dr Driscoll (ENT surgeon) working as a team in 2005 and again Dr Driscoll in the AM followed by Link in the PM in Feb 2012. The surgery in 2005 and 2012 removed a number of Schwanomma tumors compressing the right ear canal. Both procedures 05/2012 restored hearing. It's unfortunate new tumors grew back requiring the second procedure. A number of other Schwanommas remain deeper in the right ear and because of their location and risk we are in a wait mode until further surgery is required. The other surgery conducted on the same day in 2012 was to remove a left temporal Meningioma. I was told to estimate 3 to 5 days in the hospital for the Feb procedures. While I could have stayed the 5th day, I left the afternoon of the 4th.
I have now had 3 surgeries on the right ear first of which was conducted in 1986. I first went to Mayo in 2000. After much consultation we all agreed to wait until pain or other symptoms mandated surgery. I returned to Mayo last Nov because my right ear was again closing.They recommended I have the right ear surgery again and to also remove the Meningioma (even tho I had no noticeable symptoms) because it was growing in size.I continue to recover satisfactorily at home. My 90 day follow up is scheduled May 29th. I believe Mayo (while a huge facility) is one of the best in the world. They do a great deal to manage risk ie.making it low as possible regarding complications. I wish you all the best.......

• By Airracy
• Reply 3017100
• April 25, 2012 at 9:31 pm
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Do check out Dr. Edward Laws at Harvard/ Brigham & Women's hospital. Google him. He did my surgery while at Stanford med ctr. A brilliant surgeon and a great guy. Good luck!

• By Laverne1962
• Reply 3024698 · In reply to 2984156 by Nan77
• April 28, 2012 at 4:08 pm
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For Nan77. Hello, I can completely understand everything you are going through and how you feel. My 24 Yr Old Son has a 1.1 x 1 cm pineal cyst. He became ill approx 3 1/2 yrs ago. First started with headache. Said Mom, I've been having bad headaches for about 2 wks now and can't seem to shake it. (That was 3 yrs ago) Have seen doctor after doctor. Specialist after specialist and get told same thing. Not related to cyst. So he has this cyst in his head that is growing and no it's not from that. This really sickens me. What my son experiences daily is absolutely horrific. Watching him suffer like this breaks my heart. He suffers with sleep problems. basically can go long periods of time with no sleep because he just can't. Severe headaches. Some nausia and vomiting. Sinuitis. Has gotten some dizzy spells and has seen floaters on few occassions. He is light sensitive. Also there are a few other things that are odd. We live in Canada and the Neurosurgens that we have seen here say that no doctor will remove it because it is way to dangerous to do. His last MRI/MRA which was done on March 14, 2012 states that this cyst is stable, but yet it has grown again by 1mm. Also shows that it has changed in appearance and has become more complicated but yet the report says it is stable. I just don't get it. His regular Neurologist says that if this cyst was located on the outer part of the brain it would probably be out already, but because of where it is located (In the Pineal Region) no one wants to remove it because of how dangerous the operation is. Well you know what. I don't want my son to have brain surgery but I want my son to have a life. To be able to get married, have children, and to be able to grow old. He didn't ask for this to happen to him. He used to be such an outgoing, funloving young man. Was always on the go. Used to be very active. And now he is on disability. He is depressed, as if he is spirit broken. He hates going to the doctors or hospitals because every time we go, it's the same thing. They look at you with blank stares. They can't say that his symptoms are related to this cyst. They can't even say if it is a cyst or a tumor or what type because there are several different kinds that grow in this region. I have contacted the skull base institute and they said a phone consult can be done. So my husband and myself are trying to come up with the funds to have this done. I truely believe that Dr. Shainian will be the one that will say yes this is the problem or no this is not the problem. But my gut says Yes it is the problem. Just really ticks me off that we have all these learned doctors that we are suppose to trust and have faith in that basically just don't seem to give a s__t!. Another thing is my son has constipation problems and has had racing heartbeat. Could these things be related? Boy Nan, we really are in a situation aren't we.

• By Nan77
• Reply 3026818 · In reply to 3024698 by Laverne1962
• April 29, 2012 at 4:32 pm
• Report post

Laverne, reading your post was like reading something I could have written myself. Our son's seem to be suffering a great deal of similar torment. My heart goes out to you, and to your son, and your husband. The three of us have been through so much together, it's truly affecting all of us. I'm glad you contacted Dr. Shahinian. I am with you, I have so much frustration with these doctors who claim they don't know, but yet they claim to know it's not causing illness. That's painfully contradictive, and hogwash. I'm bowled over by it. I wouldn't wish this on the worst person on earth, I truly wouldn't. Few people we know really gets this. Thank you for sharing here. I sent you a personal message with my email. I hope you'll drop me a line, or visit me on fb.
Wishing your son, and both of his parents, healing and recovery and happiness.

• By BTSurvr5472
• Reply 3135647
• June 13, 2012 at 6:25 pm
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Hi ,I am a 2 time brain tumor survivor myself and after reading everyones posts,want to share some info which I have learned along the way. I had an acoustic neuroma in 1995 & a meningioma in 1998. Both were removed by surgery and doctors I had or have come in contact may help some of you with concerns or if you are searching for a doctor. Dr Brackmann at House Ear Institute in Los Angeles is a FABULOUS dr for acoustic neuromas (AN) and meningiomas. I haven't looked him up for a while but think he deals with other.tumors as well. He did my meningioma.surgery and has GREAT bedside manner as well as being so knowledegeable on tumors,balance disorders etc. Also had my AN surgery at UCLA by Dr Becker but not sure if he is still there. His bedside manner wasn't all that great but back then he was very knowledgeable. The medical community has come so far in general when it comes to BT's!! I know there are some others but need to look info up-- you can email me if you want more info about drs.Its been a while simce my tumors.lol
My general advice looking back would be to:
*Research a TON! Yes,some info may be way out there,depressing etc BUT my philosophy is always I want to know as much if not more than my drs! Seeking patient info gives you a greater advantage and I have found this with any health issue. Contact organizations,patients stories,Facebk groups,communities like this,support groups in your area, and doctors who deal with your type of tumor--You can contact Drs and organizations to mail you current info you need.
*Seek as many opinions as you can whether its calls,emails,visits. You are your own best advocate and you need to be educated to be the best advocate. Listen to your body and never let drs discount you my friends! I fell into this and wish I knew how to be a better advocate for me.
*Take Notes! "Journaling" if you will your symptoms,questions,drs notes from visits etc in detail will help you when it comes time for visits and just keeping track of how things are going,what you may need to follow up on,who said what etc.
2 other KEY things I recommend are: LISTEN to your body,which taking notes as I mentioned is helpful with regard to this. Take care of your self, give your body what it needs! Who else will,if you don't? Also,may have.said this earlier but worth repeating--dont let drs tell you its all in your head, and such things as someone said they were told their tumor wouldn't cause symptoms etc. Sometimes they don't know it all,and sometimes they are insensitive. I was told I didn't have MS by the first neuro I saw! Intuition is key! You know your body BEST!!
I know there is more but this is stuff that just came to mind on what I've learned along the way. This is a scary time for anyone,knowledeg gives you confidence to make decisions in my opinion.
Simce my BT's, in 2002 I was dxd with Multiple Sclerosis so Ive had much experience figuring this stuff out and am willing to answer questions and/or share my story if anyone wants to email me!
Lisa G OjaiLisaG5472@gmail.com

• By JNAHFR
• Reply 3223676
• July 19, 2012 at 10:21 am
• Report post

Dr. Bruce at Columbia presbeterian in NYC. Specializes in Skull based surgery. He's my doctor.