ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: jerseygirl on April 27, 2007, 01:12:40 pm
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Hello,
I have not been contributing much in April because I had a vacation for the first two weeks (what a great idea it was!) and then was busy with some family issues. I finally scheduled my surgery at SBI that I was planning to have at the end of June. June 27th is the date! My deposit of $11K is due May 14th; all pre-op testing will be done the day before, they don't allow me to use my doctor in NJ.
I am excited and scared at the same time as well as a host of other emotions. I will keep everybody updated as much as possible. I am not aware of anybody on the board who has a recurrence done at SBI or endoscopically anywhere else. So, hopefully, my experience will be useful. It is kind of uncharted teriitory (in terms of operating on a recurrence) but I feel it is worth the risk. I am really keeping my fingers crossed that everything will work out.
Eve
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Hey EVE, congrats on the schedule..if you would like a clue of what to expect feel free to call me..I think my number is on the board, but if not just email me ceeceek2000@yahoo.com and I will give it to you...
WHat did Dr. Fields say anyway? and what type of endo are they going to do at SBI...translab? there is someone here in FL whom had that done endo and I have his email.....
I hope all goes well and this will be the last time you need to deal with it...dont feel left all alone,,,I am the official wierdo of the group..I have a vidian nerve schwanomma...one of I think 6 ever diagnosed in US, plus fibrous tissue..which they really know very little about....could not have just a normal schwanomma or meningioma in a normal spot..nOOooooI had to have a skull base tumor that even now they arent really sure what the heck it is other than hard as heck.....oh well,,,I wanted to take Dr. spunberg out to dinner anyway....lol
Ceeceek
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Hi, CeeCee,
The most important think for you is that your tumor is benign and you can radiate it so it does not give you any more trouble. You needed a biopsy, too. Congrats!
Dr. Field called me twice while I was on vacation and left a message saying that he will send me a letter with his recommendations but I did not receive it so far. I would call the office but lost my voice due to laryngitis, so maybe I will do it next week. It is amazing that of all the doctors he guessed right what the tumor was.
To answer your question, as far as I know, they do not do translab endoscopically at SBI, they do retrosigmoid (go in from the back of the head). Translab for me would not be very efficient because my tumor grew downwards away from the facial nerve (thank God!) and now is touching the vagus nerve (not a good thing). In addition, it is nowhere near the ear canal, it is recurring at the brainstem. So, during the translab, they would have to reach further and downwards to get to the tumor while with retrosigmoid, it is right there. This is true whether or not the method is traditional or endoscopic. I presume it is less of an issue with the endoscopic approach.
My previous surgery was suboccipital which is basically a very widened retrosigmoid opening-wise (I do not know how else to put it), so he would have to go through the original opening and the scar tissue there to get inside and that would be the challenge.
Eve
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hi jersey girl! sounds as if you have made a committment to the procedure which i think is great! wishing you well! all the best! neal
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Hi, Neal,
Thanks for the good wishes. My surgery date is rapidly approaching. I will keep everybody posted. Good luck to you in your search.
Eve
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See, learn something new everyday......there is a guy here in Naples that had same surgery as what you are having...I have his email if you are intersted....nice guy..
Hang in there, I know due to your past experience you must be nervous, but remember technology has come a long way and I am sure you will have better luck this time....
Ceecee
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good luck to ya Jersey, tell your family to go shopping on 3rd street promenade in Santa Monica while you are "out", The waiting room at the Brotman Sucks!
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good luck Eve, hope this time its rapidly recovery...
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Thanks everybody for good wishes! i really hope everything will go smoothly this time. The insurance gave their approval two days ago and it turns out that they already dealt with SBI so it is not new to them at all. So, I am all set.
Eve
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JERSEY GIRL WHERE R U? DID YOU WAKE UP????!!!! Sorry, I didnt read the title of your post, your surgery is in 2 days. you probably are in LA now and had the pre op with Shahinian. Fancy but small office! Drop us aline when you can to tell us how it went.
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Jersey Girl,
I am saying a prayer for you and I hope to hear good news soon.
Take care,
Lynn
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Jersey Where Are you! Hope you are sleeping well and not too dizzy.Have a family member type if need.
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Hi guys! The surgery itself was a snap- 3.5 vs. 16 hours with hourly updates vs. two updates. Everyting - catheter, second IV - was done while I was under anestesia which was not the case the first time. I did not even ask for Morphine. Now, the rsesults: no facial issues, or very mild ones, barely noticeable, major double vision and balance problems (all improving daily) and trigeminal issues ( 50% of the face somewhat numb, but not completly)giving me a speech impediment. Dr. Shahinian says everything would be resolved in 6 weeks and I will be back to 100%. I hope he is right.
Thanks for keeping a prayer for me. Congrats to those who had surgery this week.
Eve
PS. Remember, my original tumor was 6x3x3 cm completely compressed and distorted the brainstem.
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Way to go Jerseygirl!!!
We have been wondering how everything went at SBI.
Good luck in your recovery, Kathy
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good luck Eve...
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Wonderful, just wonderful news...let's all give a big "HOORAH" for some good news for once.
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Hi guys! The surgery itself was a snap- 3.5 vs. 16 hours with hourly updates vs. two updates. Everyting - catheter, second IV - was done while I was under anestesia which was not the case the first time. I did not even ask for Morphine. Now, the rsesults: no facial issues, or very mild ones, barely noticeable, major double vision and balance problems (all improving daily) and trigeminal issues ( 50% of the face somewhat numb, but not completly)giving me a speech impediment. Dr. Shahinian says everything would be resolved in 6 weeks and I will be back to 100%. I hope he is right.
Thanks for keeping a prayer for me. Congrats to those who had surgery this week.
Eve
PS. Remember, my original tumor was 6x3x3 cm completely compressed and distorted the brainstem.
Great Eve, glad to see you had a good time. shahinian is quite the professional. Did you meet Ghodsian? He did my DC paperwork and prog notes.
call the Brotman and they will send that stuff all upon request. The writeup on the AN resection is quite detailed and interesting.
3.5 hrs how short! mine was 7. Uopdated my family about everyhr by phone. I hated that dizzyness! (still do)
Post some pix or video if you requested from Shahinian.
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The hard part is over! Everything should work itself out in time... 8)
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Hey girl...glad all went well..we were waiting to hear from you..I had appt with Dr Spunberg and we are holding off on the CK till late Sept or so....seeing if acupuncture will work in combo with the initial surgery...so glad yours is out of your head.....hang in there with the trigeminal and if it really bugs you try the acupuncture..so far I have had very good luck with it for that issue...
send me an email
Ceecee
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Hey girl...glad all went well..we were waiting to hear from you..I had appt with Dr Spunberg and we are holding off on the CK till late Sept or so....seeing if acupuncture will work in combo with the initial surgery...so glad yours is out of your head.....hang in there with the trigeminal and if it really bugs you try the acupuncture..so far I have had very good luck with it for that issue...
send me an email
Ceecee
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Hi,
Please tell me how your surgery went, I am not sure if I have posted this message before, but if I have I am sorry to do it again. I am having my surgery at SBI in two weeks, and like to get more information on where to stay, and prices. It seems that when I call the staff at SBI I get the feeling that I am bugging them and they are not happy to hear from me. I even told the girl who answers the phone that I feel ignored, once they got their deposit that was it for me, and she said "oh no, here u go talk to Roxy and once I did, she explained that I am not the only one and they have so many more patients and things to do". I totally understand, but I feel like, when I need to get some information, I should be able to call and get what I need, even if their gonna call me back later, fine do that, but give me the answer. I have so many questions, but no answer. Is this normal feeling or is it all in my head coming from the tumor lol...
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Sahar,
You are not the only one compaining about the staff! I dealt with MAtt and while he was busy, he answered all my questions. He can also tell you how much you will pay based on your insurance coverage. I stayed at Manhattan Beach at Hawthorn Suites. You can walk there and they serve buffet breakfast.
The surgery was very short comparing to the first one 19 years ago. There was never any incison pain or headaches. I am recovering nicely and look forward to compete recovery. You can click on my name and it will show all my posts. You can also go to Post-Treatment and look there. It is my second time, so recovery is painless but not very fast.
Best of luck to you. How big is your tumor and which side is it on?
Eve