HELP! “Translab (T/L) or Retro-sigmoid (R/S- i.e. sub-occipital) for a 4cm?�

[4cm in Pacific Northwest]

HELP! “Translab (T/L) or Retro-sigmoid (R/S- i.e. sub-occipital) for a 4cm?�

I have a 4cm atypical AN (60% chance it is an AN- 40% something else e.g. meningioma etc).

I have received 8 opinions in the USA: 4 votes for the T/L and 4 for votes the R/S. One reputable Canadian surgeon broke the tie with a R/S vote.

(I will not even start on the out-of pocket costs I have incurred with flights, research, www.healthgrades.com reports, courier fees for to send out MRI Cd’s etc. Nada Nada naa…However I am determined to choose THE best and most qualified surgeon team, for my case, given the large post-complications risk if I choose and inexperienced and less capable one.)

My pendulum keeps swinging: “R/S or T/L?�. I would really like to hear some testimonies from other 4cm (or close size) ANer's that have had this done “personally�. (Unlike the surgeons- who have not had this done to themselves). So far I have yet to hear of a 4cm R/S that did not have post op complications (facial palsy, eye, etc).

If I have a T/L and this is NOT an AN - I may regret not giving hearing preservation a chance. (I.e. I will be kicking myself for sacrificing my hearing through a T/L when there was a remote chance of preservation.) However the T/L proponents are saying that with removing a 4cm meningioma I probably will have little hearing preservation with the R/S approach anyway. If it is an AN the R/S will not give me any hearing preservation (all 9 actually  agree on that point)

The R/S voters disagree. They also advocate that the R/S is not riskier if you have a skilled surgeon.

I am the patient in the middle- who although not from the field of medicine - do have a University research background.

My value priorities are
1) Life preservation
2) Facial nerve preservation
3) Hearing preservation the least priority of the 3

It is amazing that so many top notch world renowned surgeons have such varying opinions- from each other. I think, at this point, I would like to hear from some experienced PATIENTS (who actually have gone through this- themselves with a “giant� like mine).



Does anyone out there in our big AN world (which I realized is small) have some testimonies they can share- or experienced ‘insight and wisdom’ to impart with me?

4cm in the PNW

P.S. I have already met with the most world renown expert, Dr. Derald Brackmann (wonderful man- now age 70) of House, and read his research papers. He is not the only world renowned “surgeon� I spoke with. I am realizing there is a “newer school� and an “older school� approach to AN Microsurgery. However I want to hear from “Patients� and their perspective… The ones who live, daily, with their microsurgery choice... Help! (Please)

[Zanybrainy]

Hi!  So glad to be on the otherside of AN surgery.  I too had a 4 cm and had the same debate.  After much research and second opinions, I went with Retro Sigmoid.  I decided for sure on a Friday and my surgery was Monday.  My surgeon wanted to go translab but by the time of surgery and weighting my feelings and the statistics he was willing to go either way.  With a tumor that size he felt the outcome would be pretty similar.  My reason for going RS was slight chance of perserving some hearing.  Another deciding factor was the surgery was 2 1/2 hours shorter.  My hearing was actually perfect so we decided that was a sign that I should atleast try. My brainstem was actually compressed and had an S shape to it.  The surgery was about 12 hours. I lost my hearing and had a full facial paralysis for about 6 months.  Slowly, it has come back to about 90% (now people ask me which side it is).  I had no complications (headaches, Csf leaks).  I was realy scared about the pain after, but I did not have even one headache.  A complication of RS is headaches,  my doctors said they are caused by bone chips from cutting. They did something to help  eliviate that problem. My tumor was very attached (sticky) so it took extra time to remove.  They debulked it rather than remove it completely.  My doctor helped develope this technic at the University of San Francisco.  The purpose was to improve quality of life. Two and a half years later and my life is pretty much normal. I sometimes have balance issues, but actually less than before surgery.  Total hearing loss on the rightside,  which is annoying but manageable.  If I was working or had to be out in the world alot, I would get a BAHA. I can honestly say, I would not have done anything different (except pay attention to what my body was telling me and have surgery 10 years earlier)and I feel all things considered, I had a very good outcome.  Blessings, Cath

[Zanybrainy]

I feel very lucky to not need GK so far.  My tunor has not grown and may even be shrinking, so far so good.  I think it depends if they can get the blood supply.
Blessings, Cath

[jimmy r]

I had my first AN 20 years ago. A family friend who is an ear surgeon and one of the best in the world at what he does insisted that I go to House ear Institute as they were the best in the world. My options were a long operation at mass general using the retro approach and try to save my hearing or a short operation at HEI by Dr House using the translab approach and lose my hearing. It was an easy decision at the time as to me I was willing to lose my hearing and decrease my odds of other complications. My AN was 3 cm. The tumor was thought to be totally removed, I had no negative outcomes other than losing my hearing. Surgery was 3.5 hours and I was back to work in abouit a month ( I was 30 years old).

I discovered an 2.8cm tumor in Dec of 06.I was the 10th recurence at House out of about 5000 surgeries. Once again my friend the ear surgeon recomended i go to House and have Dr Brackamnn perform the sugery. Brackmann and Schwartz were recommemding translab.
My insurance company at the last minute declined my coverage at HEI and said i would have to go to Boston. OF my options Dr Mekena and Dr Barker were consdered the most skilled and experienced and in fact do possibly the second most AN surgeries in the country. The fact is that if I felt that i had to pay to go to HEI I would have, but i felt very confiedent that I was in good hands. Barker and mekena were recomending retro surgery becasue they didn't like the idea of the scar tissue from my last surgery. Brackmann still felt that translab was thge best approach. It was quite the dilema for me - 2 renowned surgeons recommending different approaches. The length of surgery estimate were 4 to 6 hrs at HEI and 8 to 12 hours at Boston. I was already deaf in 1 ear so that wasn't an issue.

My conclusion was after consulting with other surgeons that the most important issue was confidence in your surgeon. Whatever approach the surgeon you picked recomended was the approach to take. I had my retro surgery on 6/19. Only half of the tumor was removed as  the facial nerve was wrapped around it. Surgery was 7 hours. i have had no negative outcomes. I will now have radiation to kill what is left and once again have to evaluate ther best approach and the best radiation team. . I hope i have helped you. It really is a tough decsion when you have different highly respected surgeons telling you different things.

[Windsong]

Hi Jimmy,

I'm so happy to hear you have had positive outcomes from your second surgery. That is such good news!

I'm sorry you had to go through a second op but your sharing your experience will help others, I know. There are no guarantees of 100% when we go in for treatment regardless of what it is that we choose, and though you are one of the rare ones with a recurrance from your first one it is very uplifting to know that you came out of this one so well.

The intricacies of our Ans are specific to our individual cases I know, and having the ability to have the best  in your care is marvellous.

I'm wishing you all of the best in your continued wellness!

windsong

[Mark]

4CM

In response to Bruce's post, I think a couple of other "Mark's" have participated in the board recently , so he may be thinking of one of them. But as the original Mark  , my AN was only 2 cm and I was treated solely by CK.

I just got back from 2 weeks in the UK and did get your PM last night. I would be happy to talk to you about any AN or Stanford issues, but in reading some of the previous responses here I think you've gotten some good information.

Dr. Jackler and Griff Harsh are a pair of world class surgeons who I would feel very comfortable with if faced with surgery. Contrary to another post, I would not go to UCSF since Jackler has moved to Stanford. While they are a top 20 center of excellence for neurosurgery as is Stanford, I am not aware of anyone there who specializes in AN's like Jackler.

In terms of your goal of hearing preservation, From my perspective, The only option would be to do the retro sig approach as a debulking stage, leaving tumor around the facial and hearing nerve and then treating with CK or GK. This would also be your best option for minimizing facial nerve damage as well. Issue with the retro approach is that the route typically goes through more muscle tissue and is associated with more post surgical headaches than translab.

If you don't want to do the debulk / radiation approach, then my non medical  opinion would be to go with the translab approach to give better odds for the facial nerve. The odds of saving usable hearing with surgery drop dramatically with larger sizes. My odds with nearly 100% speech recognition at the time of treatment were quoted as 20% with a 2 cm AN. From my perspective, total removal surgically with retro for a 4.5 cm would have almost no chance of saving hearing, so the translab makes more sense to me given the facial nerve function is so critical.

I don't know what Jackler's approach would be on doing the debulk and CK option, so while you are there I might suggest getting a second opinion with Steven Chang. He was my doctor for CK and I know he has done debulk surgery's on AN's before. He does work with Jackler on occasion, but it might be best to talk with both to determine which option you are most comfortable with.

of Course, all of the above assumes that you have an AN, If it is a meningioma, then the removal process and location changes somewhat I believe.

I also would suggest contacting Jim Scott who posts here often and had a very successful experience with the debulk / radiate approach. I think he could give you some excellent perspective.

Good luck

Mark

[4cm in Pacific Northwest]

Bruce,

When you refer to "Jim" - do mean Jim Scott? If yes- his success story IS encourgaing. Or is there another Jim?



"4"

[bellezza67]

I know you posted your question 4 months ago but I figured I'd add my two cents anyway .... I had the Retro/Sig procedure done 5 years agowhen I was 35 on a 3 cm AN. My hearing was not preserved, not even a little. Upon my 1st MRI following surgery the tumor was gone and 1 year later they started to see small images of what may or may not be a recurring tumor. As of today I am planning a date for another surgery as the AN has recurred and is now 9.8 mm. Since preserving my hearing is not an option they are going to perform the Translab procedure which is said to get rid of the AN (again). I was contemplating GK for a bit but from what I hear at my age there are only studies for a good 15 years with GK and I'm not willing to take the risks of malignancies forming and possibly needing surgery anyway if that doesn't do the trick.

Since you can never look back and change anything I am not going to dwell on it but if I could know then what I know now ... I would have opted to lose the hearing since I am told the translab approach gives your surgeon a complete view of the area and the RS approach is slightly obstructed.

If you've already had your procedure I hope all went well it looks like you got a lot of good feedback.

Denise

[Mark]

Denise,

Just to offer another perspective on GK studies ( aka radiosurgery). It was introduced into the US approximately 20 years ago in the late 1980s and  the first installation was the Univ of Pittsburgh. So, I believe the 15 years you are referencing is including only US based studies. However, GK was developed in 1969 in sweden  and used on AN's shortly after that in Europe  so the time period to consider is really closer to 40 years currently and according to what I read from the docs over on the CPSG site there are only a handful of malignant transformations relating to an AN in all the literature which is oddly enough about the same number that have occurred following surgery.

Best

Mark

[sahar32]

Gees that is excatly what mine was...I had my surgery few weeks ago at Skull Base......I am fine and my values were just like yours and I am doing fine with grace of GOD. You can write me if you like and we can share stories. Sahar04@aol.com
Sahar