Skull Base Institute - experience w/ Dr. Shahinian?

[Judy and Gib]

I have been diagnosed with a grade 4 3.1 cm AN. I am considering doctors and approaches. My initial consult w/ a local neurosurgeon (Todd Vitaz, in L'ville, KY) suggests a sub-occipital approach.

I had a second consult w/ Dr. Shahinian of the SBI. He presented very well, and other threads here I've read here suggest that his approach is OK.

Has anyone had more recent experience w/ SBI and Shahinian or Vitaz? Any thoughts on one approach versus the other? We have also scheduled a consult w/ Dr. Jho in Pittsburgh. Does anyone have experience with him?

Thanks, and best wishes to all the folks who visit here, whether diagnosed or peripherally impacted by an AN.

[jerseygirl]

Hi, Judy and Gib,

I had surgery for right sided AN on 6/27 at SBI with Dr. Shahinian. Yes, his approach is very good and he has done a few hundred ANs. I had a regrowth all at the brainstem and that makes it difficult to operate and difficult to recover from but it is still A LOT easier than the first time (see my posts). Dr. Shahinian is a professional and he seems to know everything - what side efects you experience and why and  your previous history ( I have a rich one).

I have absolutely no idea about the KY doctor but do know that some doctors still do the old-fashioned suboccipital approach while some call retrosigmoid approach ( which really was invented after suboccipital) suboccipital. You really have to ask where the scar is going to be, how long it is going to be and how much bone has to be replaced. Also, ask how long the surgery is going to be because the risk of stroke, death as well as anaesthesia complications increases as the length of the surgery increases. Another thing to ask about is the hospital stay because as it increases, the chance of MRSA, staph and medical errors also increase.

I said that I had a horrible first time with steroids and the second time I got only two days worth. I did not even feel them at all. I had absolutely no pain anywhere and took one pill of Percocet just to sleep at the hospital. I liked Brotman thousand times better than NYU because there was a private room in ICU at Brotman and with that come privacy and dignity. Surgery is just that - surgery. Shorter surgery is easier to go through than the long one in my experience.

Dr. Shahinian uses something called DuraPair - a collagen product - to seal the meninges. There are some people who are allergic to anything made of collagen or any bovine products. If you are, bring it up before you sign up for surgery and ask what the replacement is going to be.

I am not sure what you know but if you have any questions, please, e-mail me or ask them here.

             Eve

[ixta]

You have probably seen my thread on shahinian experience last year.
it is fairly comprehensive . http://anausa.org/forum/index.php?topic=2336.0
I did talk To Dr. Jho and wish I did have more time to get my MRI silms to him, but I did not have much time
(pushing on the cerebelum and compressing central canal), so I jumped into skull base.
Fortunately, my insurance was able to cover the surgery.

[Judy and Gib]

Thanks for the replies and advice.   We have had our initial consult with Shahinian, done by phone – he’s very impressive and seems to be very knowledgeable and has an excellent “bedsideâ€? manner.  We sent film and have requested a consult with Dr. Jho and hope to have a consult next week.  We also sent film to House and are waiting to hear from them.  We are considering them as experienced, but from what we have heard so far, we are leaning towards a minimally invasive approach. 
From what we have seen on your postings here, you have both had impressive strength throughout your ordeals. 

I’ve been advised to schedule my surgery within the next 4 to 6 weeks, so I’m trying to learn as much as possible to make an informed decision.  If there is anything in particular you recommend we ask please let me know. 

By the way, did either of you meet with Shahinian prior to surgery being scheduled?

Thanks for your generous offers of assistance and support!

[Obita]

Hi Judy and Gib:

Chopper had surgery at SBI about a year ago and had no complications.  I know he will write back if you send him a pm.  He works up on Greenland but checks in once in a while.   

Good luck, Kathy

[jerseygirl]

Judy and Gib,

I met with Dr. Shahinian right before surgery because he was in surgery the day before while I was going through pre-surgical testing. I hoped I would not forget genetic testing as well as estrogen and progesterone receptors the hour before surgery! I did not, of course. There were no surprises as to how he does the surgery because I researched it very well before. I was nerveous though and it was hard to sleep the night before.

Incidentally, my husband photographed the incision and we sent it to MAtt who showed it to the Doc the same day- it looked good. I also spoke with Dr. Shahinian on the phone around 3 months time regarding my slight pooling around the incison. He said it will reabsorb eventually and it did. It had to do with going through the same surgery twice as well as him going through the metal. In additon, I have a shunt from the first surgery which nobody knows whether or not it works. So, don't think you won't get any attention after surgery even thousands of miles away!

                                                               Eve

[Judy and Gib]

So, it sounds like you did not make a trip to CA to consult with Shahinian prior to scheduling surgery.  We thought about it, but we are running out of time.

Wondering about physical therapy post-op.  Neurosurgeon in Louisville mentioned, but no other consult has.  What about hearing?  Has anyone had experience with BAHA or Cochlear?  House mentioned, but no details.  And, we meet with a local ENT this week, who works with Cochlear. 

I am a little worried about attention after surgery, so thanks for letting me know it works.

Obita, I'll pm Chopper.

We hope to consult with Jho and House next week.

[jerseygirl]

Judy and Gib,

You should definitely get many opinions and consider all approaches in your decison.

To answer your question, I DID NOT go to LA to consult with House and Dr. Shahinian. I relied on their expertise (this forum is a testament to that), my previous experience as well as my study of their techniques. All consults were done over the phone.Originally, I wanted to go to LA to meet all of them but finally decided it was expensive and unnecessary.

Dr. Shahinian believes in physical therapy. He orders it in the hospital if necessary, and it is called vestibular retraining. Your PCP can order it as well as MRI w/without contrast when you get back. It would be nice if you found the place as well as the therapist  that does it. It woud really help if it was close to home because, remember, you might not feel like driving long distances and your spouse might be busy. Some PTs work with groups of patients and some work one on one. PTs that work one on one are better because you simply get more done and get your money's worth. Keep this in mind.

I do not have BAHA but will try Transear in a couple of months. I am not sure about Cochlear; I know that technology is ever evolving and cochlear implants just might become feasible for AN patients. They were not in 1988 when I had my first surgery. It would be great if you post your discussion with ENT in Hearing Issues. One thing that would worry me is the use of MRIs. Is it possible with Cochlear? I know it is possible with BAHA because the rod is tatanium. Transear is completely removable, so that is not an issue.

I have SSD for 19+ years and while it is no picnic, it has not stopped me from doing anything I want.

Best of luck in your search and let us know how it works out.

      Eve

[Judy and Gib]

Thank you for PT advice.  Will add this to list of ?'s for PCP.

Will plan to post our discussion with ENT.  We see him Friday PM.

Judy and Gib

[ceeceek]

Hey Judy,,,,
 I have a somewhat unusuall condition..initially thought it was an AN which is how I wound up on this board...I had transphenoidal endoscopic approach at Fl Hospital in Orlando with Dr Melvin Fields at Orlando Neurosurgery...he worked previously with Dr Jho..speaking of which,,I never heard back from him.....I live iin FL and traveling to CA and insurance etc it was much easier to deal with the east coast here etc. I was quite impressed with Dr. Fields and the hospital etc. My insurance has covered everthing and although I have still had to follow up with CK...a whole different experience,,I would highly recommmend Dr Fields..you can find his website at orlando neurosurgery .com...
I was in hospital two days,,due to an occulusion test the day before and then surgery..then home...not bad overall and recovery was around 4 weeks....great compared to other approaches no matter whom you go with..try endoscopic..much less invasive.
In the interim..you may also be a candidate for radiosurgery..there are several types..fractionated, non fractionated etc so be sure and review those post on this board also and you may be able avoid actual surgery all the way around......
Good luck and if you have any questions please feel free to email..
by the way Eve,,nice to see you post
Ceeceek

[Judy and Gib]

Thanks for the advice Ceeceek.  I have looked at Dr. Fields' website and will given him consideration.  While I know that I can't avoid surgery, it would certainly make my life a little easier if I could stay closer to home.  We had spoken to a neurosurgeon in Florida who is the friend of a family member and he did not mention Dr. Fields, but did recommend Dr. Jho. 

We met with the ENT on Friday who would assist our local neurosurgeon.  Even though hearing in my left ear was not as good as in my right ear (which I knew), it is very servicable and it is difficult to accept that I should just "forget about it" as suggested by the ENT.  He suggests that Translab is the only realistic approach.  We asked him about endoscopic.  He was not critical, but also didn't really want to discuss it with us.

We are still pursuing options.

Judy and Gib

[sahar32]

You have probably seen my thread on shahinian experience last year.
it is fairly comprehensive . http://anausa.org/forum/index.php?topic=2336.0
I did talk To Dr. Jho and wish I did have more time to get my MRI silms to him, but I did not have much time
(pushing on the cerebelum and compressing central canal), so I jumped into skull base.
Fortunately, my insurance was able to cover the surgery.

Hi, Can you tell me how do you feel now. How about SBI any problems?

Sahar