This is my first post ever! I have utilized the board on and off for a few years and wanted to 'pay it forward' with my own personal insights.
I had two surgeries to remove my insanely large AN (5.1..I know...soo large how did I live?). The first surgery was an emergency since it was not diagnosed prior and the second was to have full removal (my choice/request). I can honestly say I talked to all the top doctors in the USA from east to west coast (8 neurosurgeon consults, 3 ENT consults, and 3 radiation oncologist consults) and I can offer anyone that is in need of neurosurgery info that piece via my notes etc... I deliberately knew that I was going to have facial paralysis on the second surgery since I had scar tissue from the first surgery and had a few days paralysis after having 40% remain (I was told it lasted around 5 days). I was in ICU for over 3 weeks so, I have no recollection of what that paralysis looked like (fortunately). I chose Dr. Jackler at Stanford because he trained at House but he was younger and not throwing all kinds of sales pitchy antics at me. NO other surgeons would give me a promise to remove the tumor in its' entirety. The result is that I have a slight deficit in the upper lip (left) and can still feel nerve tingling (WITHOUT FACIAL SURGERY) so, perhaps that final piece will correct in a few more months since I am only around 15 mo post surgery and I could not talk (major improvement from the onset). I am impatient having waited soo long but my recovery looked hopeless in earlier months and saw the most improvement in the months after the first year, so, I would hang on if you had any improvement at all during the first year. I know it is very hard to look funky but I promise that if I can recover from serious paralysis....so can you (hopefully).
I do two hours of cardio daily (one in the morning and one in the evening because circulation and metabolism are the only known ways to regenerate nerves. I also incorporate sauna for 10 min each day and every week steam for around 10 minutes (all about giving the face that added heat element). I also drink a lot of water and I did the B12 lozenges the first year (the kind that dissolve under the tongue as regular vitamins are harder on the system). I have compiled my photos and video and will be posting that in a few more months when I hope to have most of my recovery complete (whatever that is). I know looking at Jean (some lady that was on here a few years ago) the red headed lady posted photos 1, 2, 3, and 4 years. It was the most helpful visual of any because it gave me hope that someone can recover against the odds with time and it is ok not to look 90% healed at one year. She looks like she had plastic surgery into her second year and yet it was all natural healing.
I did no EMG because those tests are not definitive and rather uncomfortable to the patient. A lot of plastic surgeons (even reanimation specialists) are more than happy to start cutting rather quickly after surgery (I started looking into surgery a few months after the onset of my paralysis) and I was 'freaked' about how unethical that was. I specifically stated I wanted to find a surgeon to FOLLOW my recovery and at a time after 18 months I would consider surgery if needed. This is still not out of the question but I would not need major grafting surgeries and this would not have been the case if I followed some of these 'knife happy' surgeons in the earlier days. I strongly recommend you make a list of questions and interview any surgeon as you would someone you were hiring for the job of your life (because....in essence... you are). It is the surgeons responsibility to sell you through their experience, outcomes, statistics, (videos not photos in the case of reanimation) etc.
One final note: I know a lot of people swear by some the more 'popular doctors' but I urge you to seek many opinions before embarking on any surgery. One of the HEI doctors has an official record of patient loss (yes, patient that has died). This is public knowledge and very important for any patient to make an informed decision. The problem is if you do not probe these doctors, they will not share this freely and willingly. They are bound by law to relate this information. Keep in mind that this is very rare, however, not impossible. Brain surgery is (obviously) a major risk as is any surgery. You get cut, you get scarred, you are open to complications, etc.. My point is to advise and not scare you. I simply want everyone to be aware of everything they can BEFORE embarking on this or any surgery. Until you are under anesthesia, the choice is yours and you should have a full picture of what to expect and anything that may be awaiting you down the road.
I have heard and seen many stories in my information seeking mission (groups, brain tumor groups (not just ANA but cancer groups etc...) and I urge you to do the same. Radiation is not as simple as many oncologist and neurosurgeons would allow you to believe. Also check for CONSISTENCY in when you meet them and the actual course of surgery they decide to take. I had one surgeon change his mind after I had my insurance carrier ok the procedure etc... I had (in my mind) done enough research to know what was the best procedure for me and when a surgeons changes his mind, I lost confidence. My personal advice is find the ENT to do to the surgery at a very sterile hospital (some hospitals have a high Staph infection level). You need that piece of the surgical puzzle to get the best outcome (believe it or not, there are neurosurgeons that are arrogant enough to say they can do the resection themselves) and I have found the outcomes far less positive. Inquire about the anesthesiologist, make sure no students are performing ANY of your surgical procedures. I have no issue letting any student watch but not touch. This surgery should be performed by the actual highly credentialed doctor. Make sure to clarify no students or residents will be doing any cutting during your surgery. Ask if you can have it filmed should you be in doubt (I know people who have done this). I scrutinized my paperwork before signing (you have to protect yourself from this type of thing).
My first surgery was a partial resection and not a complete which was highly unnecessary and could have been 'one and done' by a competent experienced ENT and neurosurgeon. I was assured a neurosurgeon on the ANA board was going to be present for my surgery (and he supposedly was). However, it was not executed by him and for that I suffered having to deal with a second surgery. Also, please note that statistics about having a 10% remainder of tumor to reduce paralysis is actually a fallacy. Go to Pubmed for detailed surgical analysis on this method of surgery. It actually lessens your chance of a successful outcome by under 20%. Trust me when I say, if you are already risking so much to get a brain surgery, do not leave in extra tumor (if you are under 50 as regrowth is a possibility that grows when you excise tumor (think of it like hurting it and making it angry). The stats for regrowth are around 35% and obviously higher if you are younger (because of your expected life span). You may have less paralysis however, you may not (and then you have paralysis and tumor still remaining). Good luck to everyone undergoing this life changing hell that is an AN surgery but you can come out the other side....different but still alive!
