Okay, for all of those following my lovely little case, I finally had appt with endoscopic surgeon in Orlando Fl..with a Dr. Melvin Fields and his ENT associate Dr Brian Spector....I cannot say enough good things. First off, both Drs spent more than enough time with me..as most neurosugeons realize that having anything inside your head can be somewhat unsettling they tend to spend a little more time than the average appt but both doctors had actually scheduled me for at least an hour appt.
Dr. Fields was extremely knowleagable, polite, very cautious, made sure to address all the risk associated even if they were minute in nature, explained using real live hold in your hand models..finally, I can see where my little tumor sits. For once I actually waited less than 10minutes to see the Dr. and had an hour and a half appt...not the other way around. At first, I was not so sure, office staff is pretty typical, fill out your paperwork, stand in line etc...but no sooner had I sat down, I was called back into the patient rooms...there I waited for maybe 5 minutes....
Dr. Fields is young, but has assisted in over 800+ surgeries at Pittsburgh as well as performed them up there, he then opened his practice here in FL and has performed over 200 skull base tumor removals on top of other types of brain surgery. He is the director of the Gamma knife Center there, so he is skilled in both proceedures which makes him a little less biased at least in my opinion as far as surgery over GK or CK...He stated that yes, normally I would be a candidate for either GK or CK...I had stated that I would prefer CK with Dr. SPunberg, and he was totally like, no problem, they are both effective and if I am comfortable with Dr. S, then good for me....( I was really suprised at this), anyway......
He stated that in my particular case, he would not recommend just going for the Gk or CK as I could have a particular type of tumor that if radiated would cause big problems, and he did not like even taking that chance...he advised that I at least get a biopsy before proceeding with anything. He mentioned types of tumors that NOOOOOO one else has even vaguely hinted at...I ask him about this, and although he felt, the chances were slim....unless you were a doctor whom dealt specifically with skull base tumors on a regular basis, these types of growths (meaning mine) would not ordinarily come to mind....he on the other hand really specializes in just brain injuries and brain tumors particularly in the skull base region....
My risk of surgery itself,,,are exceedingly small, when compared to the risk of making tumor worse...I would take a 2 to 5% risk of surgery over even a .5% percent chance of radiating the wrong thing....soooo that being said, he convinced me.
Down to the specifics....how many surgeries has he performed here? slightly over 200. How many patients have experience problems? ( I man not be exact, but I am not off on the numbers by more than one).......3 patients have experienced facial numbness..not droopy, just numbness as their tumor sat on facial nerve. 1 patient has had CSF leak..by the way, the technique Dr Shinanihian at SBI uses this technique. Dr. Fields and Dr. Kasam? at pittsburgh innovated the technique and this is what Dr. S uses now as well...., 1 patient had temporary and I mean by 3 weeks, double vision.. LETS SEE...does that make 5??, I may be missing one, or confusing the facial numbness with something else...but I am correct in the csf leak and double vision parts....
Now for all you ANers...not all this will apply to you, as it of course as I am sure you have allll heard before, it all depends on your tumor and where it sits.
SECOND APPT with Dr. Spector....first off, he looks like Opie, and all of twelve, very very and I mean very soft spoken. BUT, extremely confidant in his ability to accomplish the task...not egotistical, not over confidant, just a quite reserve of , oh, well, lets see here,,,,,hhmmm..if I take this approach here,,see it on the films? this is your so and so, I can manuever the endo instrument through here, creating this opening next to the other natural one....and this is the bone..see how I can avoid your carotid..of course, we will not know until we are actually performing the surgery, but it appears your carotid is on the back side, but of course, I will be monitoring the entire surgery,,we take about 3 hrs, just to make sure we are making the hole properly, really visualizing everything before we proceed.....it was a problem in Pittsburgh, where they did not take the time to properly visualize things and we don't like to do it that way.....etc etc etc........really went over EVERYTHING with me..explaing my films, what bone was what etc....extremely nice and not over confidant, just the right way a doctor whom you are trusting your life should be. He also.......actually called me back today, as I had a question about what drugs, I might be on after surgery as well as if I will be able to bend over after surgery and will I ever be able to scuba dive again.......he called within the hour of my phone call...impressive.
answers by the way are......minor pain killer, antibiotics and steroird only for two or so days...pain killers as needed, antibiotics for about a week.
No I cant bend over, need to squat for probably at least 2 weeks but may take up to 4 ( they were both very conservative in the amount of time needed for recovery, but I will get to that later), and yes, the opening will heal sufficiently for me to scuba dive in about 3 months although he said he would never recommend deep diving again.which is okay cause alll the good stuff is in shallow water anyway...
SO OVERALL OUTCOME
surgery is scheduled tentavely April 19th, with Dr. Spunbergs blessings, it was his gut feeling to really get a biopsy to begin with, he was sort of uncomfortable to perform ck without it due to location, as it is making it really hard to identify...not always the case, remember,,,I IS SPECIAL...
The Risk of anything including, CSF leak, double vision and or facial numbness is less than 5%. Could I die, well yeah....anyone can have a reaction to anesthia..but I am not counting this factor in....Risk of DRY EYE permanant around 20% due to location of my tumor.
Possibilty of removing all of tumor..around 60-70%....but can change to zero or 100%, no way to tell, till they are there and see consistancy, and whether or not it is sticking to stuff...they had their own special piece of equipment manufactured which is sort of like a sand blaster, rather than use the scoop style I had seen on medline plus video....they did not like the idea of tugging and or pulling on anything and your veins as well as nerves tolerate the sand blast technique better......
Recovery time......I may be out of Hospital in one day, but more than likely two seeing that I am from out of town...he does not want to take any chances.....Normal recovery is a week to two weeks and includes feeling like you sort of have the flu and or cold....head stuffiness etc and tired...some people he says recover right away others longer..depends on overall health etc.....as with any type of surgery so I consider this typical...I had knee surgery where I was down for the count for a month..Shoulder surgery I was fine in like three day....all depends etc.
Insurance......I have BCBS of FLorida and the hospital they use is not under my plan..the office is working with my insurance to get an exception which they have never had denied, as well as pathology etc......easy to work with so far as it was a big thing for me..out of network can be very very expensive....and if by the way, you are cash paying you get a discount.....
and last but not least to DEREK......
Here is the name of a surgeon whom was just here in the US for a class being taught by Dr. Fields in regards to endo etc...but I do believe the guy is already and endo surgeon..not just starting out.....THe class had people from all over the world including Russia....and my films were apparently a big hit....
Here is the info and good luck...make sure to tell the Doctor that Dr. Fields recommended him....it is Salis Nair the Annexe, Melchet Park farm....it may be pork farm...this is Dr.s handwriting..auughh....Sherfield English Hampshire 50516f5....or s0516Fs...you would probably know how this works??/ 0044...country code? 7730506042phone number...good luck and let me know....
Now I finally have a plan, have Dr. Spunbergs blessings, Hope for total resection so that I may simply take Dr. S out for dinner and not need his services..but at least if I do, will know what the heck I am treating and possible it will be debulked and will be easier to treat.....
Love to all
Ceecee
