Author Topic: Info on Dr. Roberson and Dr. Jackler  (Read 3476 times)

derekQ

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Info on Dr. Roberson and Dr. Jackler
« on: March 07, 2008, 11:55:34 am »
I was diagnosed with an acoustic neuroma (1.8cm X 8mm X 6mm) in my left ear last month. I'm living in San Francisco Bay Area. I went to see Dr. Joseph Roberson at California Ear Institute last week and he recommended me to go with middle fossa approach to preserve my current hearing as i only have slight hearing loss in my left ear. I'm planning to see Dr. Robert Jackler at Stanford in two weeks.

Reading through this Forum, i know that picking up a right doctor and his team with lots, lots of experiences on AN surgery will be a very important step. Dr. Roberson seems to have quite experience on middle fossa surgery. Also, I was told that Dr. Jackler works with Dr. Griffith R. Harsh (neurosurgeon) at Stanford.

My question is that if I am going with middle fossa surgery, which doctor has more recent surgery experiences on this specific approach with good outcomes. Also, I didn't get much info on Dr. Harsh and his experience. Any feedback or recommendations on these doctors will be appreciated.

Thanks a lot to ANA and I gain a lot of good information and also great encouragement by reading through your web.

Mark

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #1 on: March 07, 2008, 12:39:48 pm »
Derek,

Both Jackler and Roberson are top AN guys and Grif Harsh is a world class neurosurgeon. I am more familiar with jackler as I consulted with him in my own decision process and would have been very comfortable having him do the surgery if I had opted that way. I'm not sure if you are "locked in" to pursuing surgery or are also looking at radiosurgery, but since you are already involved with Stanford docs you might consider consulting with Steven Chang. I know he also assists Jackler in surgery, but he also directs the CK program as well. As some others here who used him would I'm sure agree, he is very unbiased in his recommendations since he does both options. Roberson and Jackler tend to be biased solely towards the surgical option becuase that's how they were trained. Your size AN is well within radiosurgery treatment limits , so it really becomes what you are most comfortable doing. Any of the docs you are considering would be considered top notch for AN's though

Good luck

mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

matti

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #2 on: March 07, 2008, 09:58:59 pm »
Derek - Dr. Roberson did my surgery in 1998. There are several other forum members who also went to him, I hope they chime in as well. I can't say enough wonderful things about Dr. Roberson, from the moment I met with him, he immediately put me at ease. He is very compassionate and will take as much time as you need during an appointment. He likes questions, so ask away.  I had a couple of issues with nurses during my hospital stay and he took care of the situation right away. His staff is great to deal with as well.

I had middle fossa in order to save my hearing nerve (my hearing was perfect), but ended up losing it in order to save the facial nerve. MRI's don't always show the whole picture.

At the time of my diagnosis Dr. Jackler was not at Stanford, so I do not know him personally, but have heard many wonderful things about him and also Chang. Either way you are in excellent hands.

I still see Dr. Roberson for my yearly MRI's and will be seeing him on the 19th for a hearing test in my good ear. I will be 10 years post op in July and doing great.

Please feel free to e-mail me if you have questions.

Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

derekQ

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #3 on: March 12, 2008, 10:30:00 pm »
Hi Mark and Matti,

Thanks a lot for your informed responses. We took Mark's advice and my wife and I met Dr. Steven Chang at Stanford this afternoon. Before today, we have almost made our mind that the microsurgery would be the best in my situation (age, the tumor size, getting the tumor out of my head...) based on the info we got from internet and from our meeting with Dr. Roberson. I also got a phone consultation with Dr. Joe Fayad from House Ear Institute a few days ago and he also preferred the microsurgery. Dr. Chang reviewed my MRI film and audiogram and told us that the Cyberknife will be a better choice to me with a better chance to preserve my current hearing and less chance to damage the facial nerve and also less complications and side-effect compared to the microsurgery.

Mark: could you share more on your decision going with CK approach instead of the microsurgery? When did you get your CK treatment and how was your outcome so far? At this point, i still have many concerns on the radiosurgery treatment such as the tumor may be swollen up to 6 to 18 months after the treatment, potential for malignant change, induction of other tumors due to the surrounding nerves get irradiated too, no long-term outcome statistics yet, and also a tumor which has been irradiated and grows may be difficult to remove later.

Any comments and advises are welcome. Thanks again

Mark

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #4 on: March 12, 2008, 11:38:40 pm »
Derek,

Glad to hear you had an opportunity to talk with Dr. Chang. I have always found him to be a very approachable and upfront doctor who is as concerned with the procedure outcome on a patients quality of life as he is with effectively treating the AN. As I mentioned in my previous post, he is the first doctor of those you listed that practices and has expertise in both options. Roberson and Jackler are both surgeons and while I'm not familiar with Fayad, anyone associated with HEI will have a surgical bias. Thus, none of them are very good sources for a fair appraisal of both options.

In terms of some of your questions:

could you share more on your decision going with CK approach instead of the microsurgery? When did you get your CK treatment and how was your outcome so far? 

Actually, Reading your post brought back memories of my journey as I went through 3 surgical consults ( Kaiser, Jackler and Larry Schuer who is chief of neurosurgery at Stanford) and was ready to decide between Schuer and Jackler who was at UCSF at the time and Schuer asked me why I hadn't considered radiosurgery. I gave some of the reasons you listed and he suggested I was misinformed and brought Chang into the consult. I should also mention that because I work in the medical supply business I do have some good friends highly placed in the Stanford administration and one ran into Schuer in the hallway and asked him how his meeting with me went and he said "if it was me, I would do the radiosurgery" which was a pretty good endorsement coming from a surgeon in my mind. At any rate, the story of my journey is posted on the CK support group site at http://www.cyberknifesupport.org/mark.html. Let me know if you have any questions after you read that, but in short I'm 6 plus years past treatment with hearing levels and facial nerve function unchanged.

concerns on the radiosurgery treatment such as the tumor may be swollen up to 6 to 18 months after the treatment, potential for malignant change, induction of other tumors due to the surrounding nerves get irradiated too, no long-term outcome statistics yet, and also a tumor which has been irradiated and grows may be difficult to remove later.

Generally an AN will not swell past a six month window, but you certainly can have radiation treatment effects for up to 18 months but these are usually radiation or tumor necrosis reactions. In almost all cases they are temporary and easily controlled by short doses of steroids where the symptoms indicate.

Malignant change is one of the great myths in this subject. To date the documented studies suggest a handful of cases in total which oddly enough is the same number that has occurred following surgical removal. So I always find it interesting that no one talks about malignant transformation for surgery. Statistically, the chances of it occurring are about 1 /100,000.

Radiosurgery involves hundreds of very low dose non intersecting Xrays that pass through healthy tissue and layer a lethal dose on the tumor. the accuracy of CK is such that very little of the healthy tissue adjacent to the AN gets a toxic dose.

No long term results is a misleading statement and usually based on the view point of US based studies which followed th first use of the Gamma Knife at places like Pittsburgh and UVA in the mid 80's, so the long term US data is about 20 years. While it surprises some  :o medical research is practiced elsewhere in the world and the GK was invented and first used on AN's around 1969, so you are really approaching 40 years of study's worldwide  ;). Medicine is always evolving and in fairness advanced microsurgery techniques are less than 20 years old, so really what does have long term results?

Surgical removal following radiation is a more difficult question to answer for a couple of reasons. AN tumor control success is roughly 97-98%, so how much do you want to worry about the possibility of a 2-3% event occurring to begin with? Surgical removal actually has a regrowth rate in studies that range from the low 90's to around 97% in the hands of the top surgeons such as at HEI, Jackler , Roberson, etc. The conventional wisdom is that the irradiated tumor will be more sticky and difficult to remove but there are studies where doctors have been surveyed and have said everything to it is more difficult , the  same , or even easier. The wild card is that there is no way to control in those studies for the quality of the surgeon who did the procedure. Also keep in mind for those who have a second AN surgery because of regrowth, the scar tissue can create similar surgical challenges to what an irradiated tumor poses. At the end of the discussion it is hard to say with certainty.

Hope that helps, If at some point you'd like to talk by phone let me know, I live in Danville

Best wishes

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

4cm in Pacific Northwest

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #5 on: March 13, 2008, 09:21:02 pm »
Derek,

Dr. Jackler has great people skills and is very personable. He always gets back to me with regards to my questions (e-mail or phone call). My only regret is that I do not live in the same state that he practices in – as follow up care has been a challenge for me being that I am out-of-state.  Because you already live in the Bay Area this will not be an issue for you. His support staffs are excellent and were much more helpful and efficient than the university hospital in my own state… thus I went to Stanford. My experience with the Otolaryngology Dept, specifically, at Stanford was they were all very professional and courteous (unlike other experiences I had elsewhere.) Dr Jackler is internationally recognized as a leader in his field… and for many good reasons.

My AN was a large and sticky tumor that required an 11+ hour surgery… and a blood transfusion (I donated my own blood – prior.)  I now have NO balance problems and NO headaches post op. My facial nerve did come back as he predicated it would -at 6 months. I have 60% regained facial movement however I am dealing with some synkinesis. Dr. Jackler is referring me to a neuro-muscular facial retraining therapist. I will be going out-of-state for this also. Other AN patients, in my own State, received no referrals to facial therapists or even vestibular therapists from their surgeons. I have jumped some real hurdles the past six months- and after jumping many of them – I still have to say I like Dr Jackler very much - and I continue to hold him in high regard. (I did not see eye-to-eye with the assigned follow-up physician, back in my own state ,however- I realize that his philosophy and views did not reflect Dr. Jackler’s views, even if he trained under him.)

I initially went to Dr. Jackler mainly just for counsel, on the recommendation of some Canadian Neurotology professors, as to what sort of treatment options I realistically had… as I was an atypical case. I liked him (and his answers) instantly. Later, after much research, I asked him if he would do the surgery. He was willing to do the retrosigmoid or the translab. The retrosigmoid approach was my final choice. Remember you have a small tumor so you have many more options available to you than I had (I had only 2). Dr. Jackler will be able to give you “objective� council on what might be best in your case- and he may even suggest one of his colleagues there at Stanford if you think you would prefer Radiation vs. surgery. (BTW “Dr. Chang� has a great reputation for Cyberknife Radiosurgery)



Dr Harsh is more quiet and reserved. He is very matter-of-fact. I have not had any cognitive issues, post surgery, so I would say he did a good job. I did have CSF leaks immediately after surgery but remember I had a big tumor that was very adhesive.  The CSF leaks cleared up on their own- no brain shunts were needed. I did not really see Dr. Harsh post-op, other than in ICU, but his team checked in on me frequently… and were onto problems immediately. Primarily I was Dr. Jackler’s patient.

Although interns and fellows were involved in the opening (this included the craniotomy) and closing of my surgery- it was Dr. Jackler and Dr. Harsh that did the main brain surgery. The University Hospital, in my own state, would not assure me that students would NOT be involved in the main tumor dissection “brain surgeryâ€? part. Dr. Jackler assured me that the students were only observing from a TV in a separate room. Dr. Jackler assigned me a fellow Canadian (MD), while I was at Stanford, who was his assistant and doing his fellowship year there. This young Canadian doctor was key in my well being and very good at holding my hand through the whole scary process…  (IE The Canadian assistant, doing his fellowship there, Dr. Jackler assigned me while I was in California -was excellent. Dr. Jackler had good people intuition as to who to team me up with.) What I liked about Stanford was the good “team approachâ€? to patient care. There were many checks and balances along the way. While in the hospital I was seen by follow up occupational therapists, dieticians etc… Once in my own private room I had excellent care.

I spoke with 9 surgeons before I selected this team. I also forked out money to http://www.healthgrades.com and paid for various reports. If it gives you peace of mind – when I did my records search, last summer, both Dr. Jackler and Dr. Harsh had “immaculate� records… this was not the case with the others. (Stanford Hospital also had a good rating)

I personally have much trust in Dr. Jackler and I would recommend him to other AN patients.

I hope this helps. Feel free to e-mail me a personal reply if you need to.

Keep moving forward,

4
« Last Edit: March 13, 2008, 09:25:02 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #6 on: March 15, 2008, 12:21:18 pm »
Cheryl,

RE Quoting you
“I had a couple of issues with nurses during my hospital stay and he took care of the situation right away. His staff is great to deal with as well.�

I am curious… The issues you had with the nurses- was this in the ICU or on the floor? My nurses on the floor where my room was were great  :)… however the ICU nurses were a different story  :o … I reported this to my surgeons and  I was promptly moved out of ICU.

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Mark

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #7 on: March 20, 2008, 10:36:39 am »
Rob (headcase2) caught and brought to my attention a poorly worded statement on my part on an earlier post on this thread and I wanted to correct it so there was no misunderstanding of what I intended to highlight.

What I typed ( apparently some time after my brian had moved on to other thoughts  ;)) was:

Surgical removal actually has a regrowth rate in studies that range from the low 90's to around 97% in the hands of the top surgeons such as at HEI, Jackler , Roberson, etc.

I mixed the regrowth thought with the total tumor removal stats. What I meant to say was either a) that successful surgical removal without regrowth occurs in studies anywhere from the low to mid 90% range overall, but is usually much higher with very experienced surgeons ( aka Jackler, HEI, Roberson, etc) more towards the 95-98% range or b) the inverse of tumor regrowth rates with surgery overall can be in the 5-8% range but lower in the 2-5% range with the top practioners.

Sorry for any confusion, and thanks to Rob for correcting me

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

matti

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Re: Info on Dr. Roberson and Dr. Jackler
« Reply #8 on: March 21, 2008, 10:32:17 pm »
4 - I actually had issues with both the ICU and regular room, but ICU was an unforgettable nightmare. The ICU nurse was fired immediately, he was already on warning from a previous incident.

I was in my regular room for 4 days and only had an issue with one nurse who kept me waiting hours for my pain meds.  Thank goodness a family member was with me at all times, wish that was possible in ICU  >:(

Cheryl



3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

 


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