Hi all,
First off, a big THANK YOU to this forum for the invaluable information that helped me and my wife get through some of the most stressful times of our life, especially after first hearing about my condition. My first reaction was "thats It. I am a dead man walking", but then you come here to anausa and read read about the condition and realize its not all that bad after all.
I had a 3.6x3.3x3.2 cm AN on right side, which was operated on a few weeks ago by Dr(s) Brackmann & Schwartz, with my post-case being provided by Dr. Stefan (more on him later).
Outcome: Unfortunately, the tumor was too involved with the facial nerve to get all of it out. a "microscopic scrap" had to be left behind on the facial name as going any further would have caused facial paralysis on one side. Dr. Brackmann has been using this "leave scrap behind" technique for 10 years, more commonly over the last 5 years and instances of re-growth are very rare. In his own words ".. we believe the tumor looses its blood-supply and just folds in on itself..". So I am hopeful. I also have partial dry eye in the eye on the side of the tumor. Brackmann believes this is temporary.
Its interesting how they decide which tumors to go after a full removal and which ones they decide to back-away from. I am sure most of it has to do with how the tumor is intertwined with the facial nerve and your age. I am
38. Overall I am very happy with a "1" for facial nerve function on the House scale. It doesn't matter now, but should one be leaving them an Advanced Directive not to cut the facial nerve no matter how much tumor has to be left behind ? something to think about for others.
Balance nerve was cut. - As Brackmann has predicted, with large tumors the other balance nerve had most likely already compensated even prior to surgery. I had ZERO diziness the day after surgery. I was able to walk without assistance and climb stairs (the staircase right by the 6th floor recovery rooms at St. Vincent's) on day 2 post ICU!! 2 weeks post surgery I am now walking 2 miles a day at normal speed. I had also measured my balance using the Nintendo Wii Fit Game so I have something to compare pre and post sugery and there is no change. The Wii Fit with the Balance board I think is a good investment if you find yourself in this situation. It just gives you the added re-assurance that "I can really do the same things I did before even with 1 balance nerve". Ofcourse I know there will be limitations, but I have yet to encounter them.
Hearing nerve was cut - I got the Ponto Pro and had to pay USD 10,400 for the device and USD 3800 for the surgery since CIGNA doesn't cover it. I tried to negotiate the price with St. V's but they wouldn't budge.
St. Vincent's Tips - After the ICU you will be put in a room on the 6th floor West of St. Vincent's which is the Orthopedic Ward. Most patients in this ward are a "Fall Risk" due to the nature of their ailments and thats why the AN patients like me end up here. There are a few things everyone should know about St. Vicent's as it could make your stay and recovery a lot more tolerable.
1. In general I feel that the Nurse's station is understaffed. It takes quite a few minutes when you press the call button before someone turns up. The level of understaffing is more acute towards the early part of the week Mon, Tues when HEC does all their surgeries and new patients appear at a more rapid rate. Its get better towards the end of the week as no surgeries (except emergencies) are done on Sat/Sun.
2. You will be assigned a Nurse and a Nurse Assistant.
The Nurse Assistant is supposed to change your bedding and offer you fresh clothes EVERY day. For me that didn't happen on 2 out of the 6 days and I was pretty annoyed. I was told towards the end of my stay that if you find that it hasn't been changed by mid-day.. ASK. Trust me, you feel much better with fresh linen. The pain medication, specially the stuff they give you for the Level-6 and above pain, causes a lot of sweating and its important to at least keep the pillow case spotless to avoid infection.
3. Don't feel shy to ask for a sponge bath - I've heard mixed opinions on this from a couple of nurses. One said "you on your own.. we want to see how much you can do by yourself". A few others gave me a sponge down. Its VERY IMPORTANT you stay as clean as possible since there are a lot of "strange germs" floating about (so said a nurse).
4. DO NOT step on the floor even for a second without the socks that they give you. They protect you from germs getting on your feet and prevent slips since those socks are especially rubberized.
5. The food.. I am sure there is worse. All I can say, I didn't like it, I lost 10% of my body weight in 6 days even though I have a near ideal BMI. This severely contributes towards the feeling of weakness. On day 5, I started eating food from the cafetaria which is a tad better. I suspect that the longer I stayed there, the longer I would have taken to recover.
6.
VERY IMPORTANT: If there is one thing you can take away from this posting, its this.. the Nurses at St. Vincents at least to me, were over-aggressive about making sure you get a bowel movement before you leave the hospital. I actually spent a couple of days extra just because of that. Get this.. the reason they do this is because a lot of patients complain that they haven't had one towards the end of their 6-day stay and hence they try to attack the problem aggressively from the start. They will give you all kinds of stool softeners and laxatives to ease the process. This results in a big problem that you need to watch out for: in my case I felt under constant "peer pressure" :-) to "go". This resulted in me "trying too hard" while on the toilet. With all the pain medication, know this.. You are
pushing much harder than you think because you can't feel any pain. This resulted in HUGE HEMMOROIDS which 2 weeks post surgery are still very painful and I am still recovering from. Ironically, those have been the most painful part of this whole experience. And worse of all, depending on their size and other factors, you might require surgery to remove them.. and ofcourse the last thing you want is end up back at St. Vincents for more surgery. So, whatever you do, DO NOT try to force a BM, try and eat as best you can and let nature take its course. Also to make matter worse, on the 5th day of my stay, I ended up with the opposite problem.. diarrhoea. So, listen to your body and have every right to tell the nurses to stop giving you those little bright Red pills. If you dont have discomfort from lack of a BM, make sure that the nurses are aware of this and to back off from the laxatives.
Dr. Stefan - Dr. Stefan, who gets little mention here, is the one that must clear you for surgery and is also responsible for your recovery. At least at HEC there are very clear division of labor. Everything head-related is Brackmann/Schwartz, mostly Brackmann. Everything non-head-related, its Dr. Stefan. He is fantastic. Prior to surgery they diagnozed me with a rare very-very-mild blood clotting disorder, something that surprised me since like most people, I have gotten my fair share of cuts and bruises and had my side-impacted wisdom teeth surgically removed and never once felt wounds healed slowed than expected. YET, this is not "toe surgery" as he put it, so the numbers have to be spot on before they will agree to operate. The first time I was actually admitted, was all strapped down and ready to go up to 6th floor OR when they found the issue.
My surgery was postponed for a month because of this. So for those that are not local, make sure that Dr. Stefan checks out and signs off on all your blood-work before you come down for surgery. It all turned out ok, I was given medication via IV for 6 days for whats medically referred to as a Factor-7 deficiency, after surgery to take care of the issue. But one can only imagine what might have happened had they non caught a blood clot issue before a brain surgery.
Dr. Schwartz - the Neurosurgeon that teams up with Dr. Brackmann. A man of few words but a fantastic surgeon. They tell me that they work from opposite sides of the tumor. Schwartz works on the part away from the Facial/Hearing/Balance nerve, Brackmann works on the part that is impacting those nerve. You never quite know who does what in the OR, but in my case, it was a very long 7-hr procedure and both of them came out exhausted, so I am glad there are two surgeons involved.
The facial nerve specialist - When you go up to the OR, you will meet with a lady (I believe her name was Danielle), whose sole job is to monitor the facial nerve, constantly stimulating it and providing feedback to the neurosurgeons so they dont get too close. Trust me, its very re-assuring to know that they have a dedicated person for this since this is the most critical part of the entire surgery and causes outcomes so varied from complete paralysis to a complete recovery. Very happy about this.
The anesthesiologist - Didn't catch his name, an Asian guy with a heavy accent. He used the A-line technique for monitoring my blood-pressure during the surgery. you can read about this here
http://en.wikipedia.org/wiki/Arterial_catheter. My left hand was black and blue after I came out of surgery and still healing 2 weeks later. I see lots of needle puncture marks near that wrist. Not sure what went on that cause that during surgery. But in the grand scheme of things, this was minor so didn't ask about it.
Fat Harvesting - With my translab surgery, they remove the mastoid and that has to be closed up with your own fat. Since I had such little body fat to begin with, I end with with a fairly large incision in the abdomen, its about 3 inches, so they could get enough fat to use. Be prepared for this if you are on the leaner side. The wound healed completely in 8 days, though it still feels very hard.
Is it hereditary - In my case, my mother had the exact same condition though on a different ear and was operated for it 10 years ago. Dr. Brackmann says he has seen 5 cases where a parent/child pair had this condition. Coincidence ? I dont think so. So for those of you that have been treated for this, it would be wise to stay on top of periodic hearing tests for your kids. It never hurts to be too safe.
