ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: dufreyne on September 29, 2008, 06:09:46 pm
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I would like to share some of my story for those inclined to read.
Like many, my story had an unusual series of events that led to the diagnosis of a right sided, 5 x 6 x 9 mm Acoustic Neuroma on February 13th, 2008(Valentine's Day has taken on a new, special meaning!). Initially, it was not 100% certain that it was, in fact, an acoustic neuroma. There was a slight possibility of 'inflammation' instead of tumor. The MRI was repeated on August 13th and it had grown slightly and continued to appear consistent with an acoustic neuroma. During the preceeding 6 months, I did my homework. Despite the fact that I am a practicing M.D., I really had very little knowledge of the details of this diagnosis nor the treatment options available (I'm embarrased to say). I've read post after post of individuals who are frustrated by the lack of real guidance given the 3 main treatment arms as well as the sub-arms. I found myself equally frustrated. I have read hundreds of papers and abstracts (many of which contradict each other) and it can be overwhelming. After going to 3 places (House--Schwartz +Slattery; Univ. of Washington--Sekhar; Stanford--Jackler + Harsh), ultimately I decided on Stanford with Jackler. Although, admittedly, all 3 seemed like very good choices. It is scheduled for the end of October. If anyone has had experience with Jackler + Harsh I would appreciate your point of view--especiall for intra-canicular tumors with good hearing. Also, anyone who has any words of wisdom at 3 weeks pre-op, it would very much be appreciated.
If anyone is interested in the story that led to the diagnosis, I would be happy to relate it on the next post (it included a bad sore throat, a tonsillectomy, the loss of taste and lots of other fun events :).
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Hi, Dufreyne and welcome ;D
By all means, give us the details leading up to your diagnosis; we love to share our AN stories here.
I don't think that most practicing MDs - unless they are specifically practicing on ears or brains - are "up" on Acoustic Neuromas, their diagnosis, or their treatment. I've found that my ENT was even freaked out by the "growth" in my inner ear canal and couldn't hand me off to a neurotologist fast enough :D The number of AN patients on this forum who were misdiagnosed for years used to amaze me, but now I've come to realize just how common it is. Afterall, we're a rare bunch ;)
I've also found that most MDs don't have a clue as to what a BAHA is. Do you?
I've heard good things on this forum about Dr. Jacker and Stanford; you're in good hands.
Words of wisdom - don't sweat the side-effects until they happen to you. Yes, there are many, but you may never encounter most of them. Don't overdo it post op - the fatigue is phenomenal; lots of patience is required. Have complete and utter faith in your treatment decision and absolute confidence in your doctors.
BTW, we have another MD on this forum who had an AN (Sam Rush). Sam had the unique experience of diagnosing one of his patients with an AN just this past year.
You don't mention your surgery date, but we like to keep track of such things so we can wish our fellow forumites well. You can find the AN calendar link at http://www.my.calendars.net/AN_Treatments
Good luck,
Jan
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Hello and Welcome!
Thanks for sharing with us part of your story. I know that you said that you are an MD so I know that you probably look at this with different eyes than the rest of us (except maybe Sam), but you won't find a better, more caring group of people. And the best thing...we have all experience the EXACT same things you have/will. I am VERY interested in your story of discovery...I have a little story about reoccuring strep throat before I had surgery (& have not had it ONCE since) so I am very curious - I haven't ever heard of anyone else with sore throats! Please don't be a stranger - you are not in this alone!! Feel free to contact me with a PM or I can call you if you would like to chat!
K
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Big thanks to Leapyrtwins (there has to be a good story behind that name!) and Kaybo for replying with encouraging words of wisdom. I can't tell you how much that means right now. I am a practicing ER physician and i've spent the last ten years taking care of patients and walking around 'landmines' and now i've tripped one myself. It's almost surreal. Although, I must confess, that it hasn't all been bad. In fact, there has been a fair amount of positive that has come out of this whole ordeal. More on that later...
My diagnosis was truly wacky. I'm a healthy 42 year old male who woke up christmas morning 2007 with a wicked sore throat. Prior to that I would get 1 or 2 strep infections per year and my tonsill were mildly enlarged. At first, I thought it was a viral infection, but it was much bigger on the left side with pus (sorry for the graphic picture that just entered your brain!). I made it through christmas present opening and then had to work the next day. I was given an injection of long-acting Penicillin and thought it would be better in a day or 2. No luck. 2 days later, it was significantly worse. I started some different antibiotics (thinking I had a resistant strep infection) and tried to give this a few days to have effect. Still no better. I saw an ENT who thought, perhaps, I had a peri-tonsillar abscess. He took a spinal needle attached to a syringe and poked it 5 times! into the back of my throat adjacent to the left sided, large tonsil. No pus, no luck. He started me on yet a 3rd antibiotic and steroids. I did my best to muddle along until a week later. I saw another ENT who was concerned about the possibilty of tonsillar cancer (given the fact that it was unilateral and not responding to antibiotics or steroids). He recommended a tonsillectomy and said he could do it 2 hours from then. I was not quite prepared for that, and reluctantly agreed. They wheeled me in (at the hospital where I work). Everyone was asking what it was like to be on the "other side." The OR staff asked me what music I wanted to hear prior to being put to sleep--I was a bit somber and requested peace and quiet. They said OK and then put me to sleep--I'm sure they were cranking Def Leppard while I was out! When I woke up I came to complete consciousness quickly. I looked in the mirror and was amazed at the crevices he had carved out of the back of my throat. I had seen many post-tonsillectomy patients, but was still amazed at the size of the craters he left. Over then next few weeks it filled in nicely and now looks normal. I was discharged the next day and went back to work 6 days later. About a week after surgery I noticed that sweets tasted bitter and I couldn't taste things well at all. I brought this to the attention of my ENT who didn't have an explanation. That lasted 2 months and finally came back. As I get older, a good meal means more and more! The pathology came back as no cancer, but multiple mini abscesses and one large abscess on the left side. Also, a viral culture done at the beginning came back for 'Adenovirus'.
4 weeks after surgery I was working and had a sharp pain in my right throat. It lasted all day as I was seeing patients. I looked in the mirror and couldn't see anything out of the ordinary. Then, I was walking in to see a patient when I noticed sudden onset of hearing loss and a high pitched noise in my right ear with vertigo. I sat down in the patient's room. Fortunately, she was quite verbose and had a non-emergent condition which allowed me the luxury of sitting until the vertigo improved and the buzzing eased. I saw a different ENT who ordered a hearing test right then. It showed a 'low frequency' hearing loss at 500Hz. She prescribed prednisone X 5 days. My hearing seemed better by the time I got home. I took the prednisone anyway. Two weeks later, I went in for follow up with my normal ENT. He thought it was a viral labrynthitis. I questioned the utility of an MRI. He agreed that it would put the issue of tumor to rest. I went for the MRI a few days later. When I finished the MRI, the Technician was gone (now I realize that she didn't want me to show her the images and put her on the spot). The next morning my ENT called and he sounded nervous (not his normal tone).He simply said "I'm glad we got the MRI--you do have a tumor, it's an acoustic neuroma." I drove to his office to have him prove this to me. It didn't make sense. How could this be the cause of my symptoms afte the infection, adenovirus, tonsillectomy. Surely, I thought, this must be inflammation. I looked it up and sure enough, there are a number of AN mimickers--including mononeuritis (inflammation of the nerve). I was convinced that this must be the case. I decided to be patient (best I could) and repeat the MRI in 6 months. In the meantime, I researched options. I traveled to Seattle (Sekhar), House (Schwartz and Slattery) and Stanford (Jackler, Harsh). I read WAY TOO MUCH about this. It can drive you crazy! After weighing the options, I've chosen Stanford and now I'm waiting for the surgery to take place. I'm donating autologous blood this week and filling out the insurance paperwork as well as my medical leave of absence paperwork. Still seems surreal...
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Dufreyne~
First, explain that screen name, please!! It's a lot to type! Sounds like you have been thru the ringer with your throat! AN's can change your life, but that is not all bad and everyone has VERY different outcomes! Check out my blog to see what life is like for me 12 years out! The address is below in my signature line!
K ;D
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First, "Dufreyne" comes from one of my all time favorite movies entitled "Shawshank Redemption". But, I spelled it wrong the first time I used it and it stuck. It's french and I think it's supposed to be spelled Dufresne.
Second, Kaybo, I really enjoyed your blogsite. You have a beautiful family and those girls look like they keep you quite busy! You should be very proud.
Now that I'm "off the sidelines" and starting to post a little, I'm trying to figure out a few details. My current challenge is how to post a picture and how to post my specs at the bottom of each post (as I've seen others do). Future posts will be a testament as to whether I'm successful or not!
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Welcome Dr. dufreyne!
Sorry you are joining our ranks, and I have to say, your story is different from any others that I've read. But, we all have a little different story to tell on our AN journey. At least you have the medical knowledge to help you along. Most of us never have even heard of such a thing before. I'm not even sure my ENT had heard of such a thing before, as he didn't diagnose me at all. It took another symptom of facial numbness and then and only then did I rate an MRI. And of course, a diagnosis was made and I finally found out that I wasn't crazy, that I did have something wrong with me! But, that was partially my fault for not throwing a tizzy fit in the ENT's office. >:( I should have been more aggressive. Live and learn, I guess.
You have a small AN, and as you know, you can pick and choose a little bit on your treatment. I do wish you the best and hope your treatment and recovery go smoothly. I'm also rather pleased that a doctor chose to come on a patient support forum with his story, because my doctor warned me away from this site, and other's have said that too. They are afraid that only the ones with bad outcomes are on here spreading gloom and doom. Such is not the case. We support the patients right to his or her choice of treatment and then cheer them on through treatment and beyond. There are some very knowledgeable people on here and I think you'd be impressed with their understanding of this medical condition and treatment options. I know I am. ;)
Wishing you all the best,
Sue in Vancouver WA USA
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Just returned from a week-long vacation??? babysitting my one-year old grandchild and your post caught me by surprise! An MD with an AN--hmmmmm and seems you have been through what we all have in regards to too much reading--info overload. It makes me feel better to know someone "in the know" reacts the same.
Very sorry to read of your diagnosis and sorry you had to go through much before you got there. It took 12 years before I got my dx with alot of embarrasing moments with specialists (?) of all kinds and I know I'm not alone as many of us have a similar story here.
I'm glad you came forward to tell your story and glad you have chosen your tx and team. Hope you continue to stay with us during your journey as someone above me mentioned we are not all doom and gloom and no you will not "pick up any symptoms" by reading about someone else's problems! ;)
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Welcome to our elite group Doc....We are a family here and a great source of info and suppport. Sorry you had to go thru so much to find your AN.
As for the picture, well that is problematic...took me hours of playing around with Flickr, Frappr, and websites to no avail. Then Joef on here did it for me. Thanx again Joef..
As for the signature, go to ur profile....
JO
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Dr, as far as the photo goes, I posted my picture on Photo Bucket, then they have tags on there that you can copy. You want the one that says Direct Link. At least that's the one I used. Then you go to your profile forum information and you can see at the top of the page that there is a place where you can paste that information. You want to say that yes you have your own picture. Then at the bottom be sure to click on the change profile button. That should do it. It did take me a few tries to choose the right choice on Photo Bucket, but finally figured it out. Hope this helps. And if anyone sees that I've not said it right, please correct me!
Sue in Vancouver, USA
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Thank you all for the kind welcome to this community.
I've followed, without posting for quite some time. I've heard similar comments about this site, but have found this to be far from the truth. From all accounts, this site appears to be an online network of individuals traveling down a similar, difficult road. It only makes sense that this type of site would form as a support to those navigating this journey. Frankly, how could medical practitioners not expect such an online network, when patients are given such confusing information? First, you're told you have a brain tumor, but wait...it's benign. Next you're told there are 3 main treatment options: do nothing, radiation, or surgery. Then, your given the side effects of all 3 choices which appear both random and potentially serious. This site simply allows for the free flow of information between patients who are experiencing the same tumor (although the details may be dissimilar). In other areas of medicine this is, in fact, encouraged. For example, Congestive Heart Failure patients often meet with the physician as a group. This generates healthy discussions and often great questiions. This type of networking should be encouraged. This site is important and I'm so glad it exists.
With respect to treatment options, I wholeheartedly support those who opt for other choices. Clearly, there is no true consensus at this point and therefore, you have to choose what you think is right for your situation. I often wish I had a medical condition that simply had one treatment option. Then you could simply find out who is good at that particular treatment and you could move forward. Those of us diagnosed with Acoustic Neuroma are subject to a more complex algorithm. It seems to test our intellect as well as our emotional fortitude like nothing I've experienced before. I have to think that walking this path will cause me to grow in ways that I didn't think were possible. I have found myself living in the moment and truly enjoying that moment like I never have before. I've also re-learned the concept of gratitude. These are all good things that I most certainly would not have experienced without this tumor.
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Dufreyne first I want to welcome you to the best brain tumor forum on the web. I believe most Drs are talking about the other brain tumor sites I have been on. There are alot of crackpots which I do not find here and they are agressive and do tend to attack people for their beliefs on treatments. Here you will find great support and knowledge without all the negative. This is a patient to patient support group period. Of course family members are welcome and you do not even need to have an AN to join. Oh and of course Drs can join to.
As many of you are aware my son does not have an AN and had brain surgery and suffered a severe stroke at 16. A very rare complication and unusual circumstances where at play also. If you would like more info to put your mind at ease just pm me and I would be happy to tell you more. I joined this support group with questions the Drs could not answer and the journeys were infact similar. I want to say that the doom and gloomers are from what I have experienced on this website upbeat and positive and helping others with complications that can change you life in an instant only willing to help others reach the place we are in. I know that despite what has happened in our lives since surgery has been a blessing in disguise and my son is doing so well and we of course are so proud of him. This will make you a better person in the long run and also a better Dr. Just remember in the tough times ahead we are here for you to make this just a little easier. Many kisses to your forhead OMG16 or maybe it should be 20 now :-* :-* :-*
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Hi, dufreyne:
Allow me to extend yet another welcome to the site/forums as well as my regret that you're a member of this relatively unique 'club'.
I'm very pleased to read your analysis of the intent and scope of the ANA message boards, which I find both astute and correct. :)
We don't have many physicians posting here, although the ANA does have many doctors as members, advisor's, etc. The gifted neurosurgeon that performed my retrosigmoid approach surgery has been a member of the ANA since it's inception. Its' always interesting to get a doctors perspective when he (or she) becomes a patient. The confusion and contradictory information, as well as the negative aspects of surgery and radiation can, as you noted, drive one a bit crazy. Sometimes I suspect that having medical training and education can exacerbate the situation because you 'know' too much, when the reality is that with acoustic neuromas, there are no hard-and-fast 'rules' and thus, no absolutes to lean on. This can be threatening and frustrating for the ordinary patient and likely even worse for an experienced physician, like you.
Your 'story' was compelling and definitely unique, although the long and winding road to an MRI and a definite diagnosis is all-too familiar. I was somewhat fortunate in that I (foolishly) ignored my symptoms and they intensified rather quickly. That triggered a (rare) trip to my PCP, a blood test based on a false guess on his part (hypothyroidism) and then, an MRI scan, intended to look for a 'sinus problem' but instead finding a large AN pressing hard against my brainstem. From there, a rejection of the neurosurgeon I was initally referred to (clearly intimidated by the size of the tumor and too light on AN surgery expertise) followed by the serendipitous referral to a partner of my wife's neurosurgeon (she has undergone extensive spinal surgeries) who was the resident expert in acoustic neuroma removals (30+ years experience) and even instructed medical students at nearby Yale university. We hit it off immediately (he's around my age). This doctor was alarmed at the size and location of the AN and scheduled surgery within a week, the time it took to get his hand-picked team together; no residents or interns. As he put it: "An acoustic neuroma surgery OR is no place for amateurs". I liked his attitude. During our initial consultation (50 minutes with absolutely no interruptions) I made it crystal clear that, along with ridding myself of the tumor, avoiding facial paralysis was a primary concern. He understood and set out a plan of 'attack' on my AN. First, a 'de-bulking' of the AN. He termed it 'hollowing it out' Then, after a 90-day 'rest period', FSR treatments, carefully calibrated with a radiation oncologist my neurosurgeon liked to work with. I ended up with 26 FSR treatments - with no ill effects, except to the tumor. :) The AN surgery went well and I never experienced facial paralysis. I was driving again within two weeks of the surgery, with my surgeon's approval, of course. I had a few inconsequential after-effects from the surgery but they either resolved quickly or are insignificant and have no real bearing on my quality of life. As you would expect, my neurosurgeon is elated with my outcome. I thank God for putting this fine doctor in my life at a time when I needed him. I'm also grateful to have avoided, by sheer chance, the misdiagnosis runaround that so many AN patients suffer through, as you did.
I try to encourage the newly diagnosed, like you, that all is not 'gloom-and-doom' with an acoustic neuroma diagnosis. I think your medical education and experience tells you that. This website and the forums are definitely supportive and informative, filled with good folks who, as you noted, are all having the same experience with a myriad of manifestations. They try to share their hard-won experience with others in the same situation, when there is little practical information available, even now. Here, there is.
I'm pleased you've found us and trust that you'll be a frequent visitor and valued contributor. I hope we can help you, too.
Jim
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So good to hear from you OMG16, you've been missed :-*
Welcome to the forum Dr. Just wish it was for medical research!
Good luck,
Anne Marie
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Welcome to the zoo, dufreyne!
I have to admit it does cheer me up to read that a dr. is just as befuddled by the process as the rest of us mere mortals ;). It can all be so overwhelming. This is the best place to be. Everyone has a story to tell, advice to give, and loads of encouragement to spread around. You can't go wrong hanging around here. Sorry the price of admission is so high, though!
Maggie
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I am consistently impressed with the quality of posts on this site. This site and group should be a model for other groups of patients with a rare disease. I need to pass this along to other physicians whether they treat AN or not.
With respect to the surgery, now that I've made my decision, I find myself wanting to move time forward and simply be on the other side of this surgery. I'm trying to be patient, but it doesn't come naturally in this situation!
I'm trying to keep busy with work and that seems to help a lot. It forces me to think about other things beyond oneself. That's always a good thing...
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It is so very normal to have those feelings and if you keep busy time will pass quickly and you to will be a postie. The day before surgery don't forget to pamper yourself and make sure you are in a good emotional state because as you know that can affect your immune system. Also don't forget to wash with your antiseptic soap to minimize the risk of MRSE take it from one who knows it is no fun to have as I am sure you are very aware of. Don't forget that how trivial you think a question might be we have all asked it or thought it ourselves so please feel free to ask us anything that comes to mind. Drs are just normal people with the same feelings as the rest of us and I think sometimes the lay person can forget that. :-* OMG
Lori glad to be back!
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dufreyne -
thanks for sharing your diagnosis story in detail; very interesting. I've never read anything quite like this on the forum. So, I have to ask, are you telling us that your tonsillectomy wasn't necessary after all ??? Forgive me if that's a dumb question, but I'm an accountant and not well-versed in medical stuff ::)
It would be wonderful if you told all the medical personnel you know what a great patient resource this forum is. I've told my neurotologist this so many times, he's probably ready to throw something at me :D I found this site after my retrosigmoid surgery, but I've often wished I found it right after my diagnosis when things were really scary. This forum has been a Godsend to me in more ways than one - and in addition the humor here makes me feel right at home ;D As others have said, we truly are a family.
One of the things that makes me proudest to be a member of this forum, is that we support each other unconditionally. We recognize that everyone is different and everyone's AN journey is different. We also like to stress that treatment choice is a personal choice. Thankfully my neurotologist stressed that to me long before I found the ANA, but I'm still somewhat surprised to hear from time to time that other doctors try to "push" their choice on patients.
In a perfect world, all AN patients would find this forum and the ANA immediately after their diagnosis.
So, you didn't tell me, do you know what a BAHA is?
I hate to belabor the point, but I'm curious since not one doctor I've met - other than my neurotologist who implanted mine - has known what a BAHA is and I think it's definitely something that people (especially doctors) should be educated about.
Jan
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So Maggie since we are at the "zoo" I am wondering what animal I would choose most to represent me...... :)
Dufreyne I have always wondered if there will ever come the day during med school they (professors) will change the name of "acoustic" to it's proper term "vestibular" neuroma. Reason being, it was balance I was noticing first but was poo pooed as "aging", I was 40 at the time. My hearing could have been saved as the tumor would have been smaller then--perhaps?
Funny it was an ER trained physician that suspected I had a brain tumor originally in 1991. My "red- flag moment" was I didn't recognize my surroundings, and failed his " starting with 100, count backwards by three" test, but because he didn't order MR w/contrast, it never showed. Anyway, I've always wanted to contact him as he's moved to another city to let him know how right on his dx was.
I am hoping with more and more doctors passing out information from the ANA (mine being one) maybe the correct terminology will be used in med schools in the near future.
In regards to the internet and information on medical sights, I was talking with my SIL (medic serving and working clinic in the Army) about why doctors "bristle" when patients offer up their diagnosis as so many of us have gone years before diagnosis, being seen by many physicians not able or willing to look deeper into their patients complaints. The patient, not finding relief, decides they can do a better job and so begins their search on the medical highway.
My SIL went through a scenario he frequently sees with his patients relaying how frustrating it is when the patient comes in telling him what they fell is wrong before he has a chance to offer up his diagnosis. I suggested he change his approach by allowing the patient to offer up their diagnosis, acknowledge this, telling the patient he/she might be right, but your not sure as "you" need to evaluate them and will then discuss together, what your findings are. He listened to my suggestion and will now use this approach with his patients.
I don't think this problem will go away for physicians and better to have a different approach as the old days of doctors knows all is no longer. The patient probably will be wrong with the diagnosis, but they aren't wrong in knowing something is not right with them.
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Arushi, my doctor called it a Vestibular Schwannoma, which I believe is the preferred medical terminology. I'm not sure why the term Acoustic Neuroma came into use, but I guess that figures, doesn't it? Two different methods of killing it, two different names to identify it. Just something else to add to the confusion of this disease/ condition/illness. See I don't even know what to call it! I think of a disease as something you "catch".
So Dr. dufreyne, what do you call it? That we can print in a family forum, that is! ;D
Thanks for the kind words about this forum. That is going to please everyone who takes part in this site and I hope they all see your post. We have great Moderators on here who are friendly, smart, caring and really have done a lot of research about this stupid AN thing that we all share. That's how I refer to my tumor - stupid AN thing. Mainly because I hate the word tumor. And even though people will refer to this as a "brain tumor", most of us know that it is more properly a "skull based tumor" because the AN is not growing on or in the brain. Thank God.
Don't let our delight at having a real MD to ask questions of scare you away, please! We all would enjoy reading about your insights and your views on this from your unique perspective as doctor and patient.
I am most interested in your opinion on the "cause" of such a thing. I favor something to do with genes gone bad. Others look for an environmental or outside factor. Some just call it bad luck. Mostly the jury is still out on that one, officially anyway, but I'd still be curious as to your opinion.
I also hope you contact Scott, who is working on an AN book. I'm sure your story would be most welcome. There is a topic for that in the AN Community and you can easily find that.
Take care of yourself and let us know how things are progressing for you. You saw all the West Coast doctors. Do you live around here too? (We're a curious bunch... ;))
Sue in Vancouver, USA
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We have great Moderators on here who are friendly, smart, caring and really have done a lot of research about this stupid AN thing that we all share.
You're obviously not talking about me in the above comment! ;) :-*
hello dufreyne and welcome. Good to see you here. Well, I see everyone is giving you proper hellos (not that I would expect anything less of them.....) I'm glad that you are finding the site/discussion forums helpful...
In one regard, I'm sorry to see you join our ranks... but, since you are a doc, on the other hand, I am thrilled that by you (unfortunately) joining our ranks, it helps to truly give a different perspective and I, for one, am thrilled that, although we hate going through this journey, it can help give better insight first hand... for a doc to truly understand is difficult unless they walk a mile in our shoes. I understand its difficult for a doc to be the patient, but what it can do for the compassion a doc shows to their patients is truly amazing.
The wording didn't really come out right/smoothly in what I just wrote... but I think you got the gist of it.
As I'm sure you know, Stanford and Jackler offer some of the best in AN treatments. I do know of a patient here (matti) who had her surgery there approx 8-10 yrs ago... she is a terrific patient resource if needed.
Welcome to the site... glad to have you participating...... and truly sending you wellness wishes...... I'm kinda famous for my healing huggles. Hang tough.
Phyl
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Of course I was talking about you Phyl!! You are the Sweet Heart of ANU (Acoustic Neuroma University), our Dorm Mother, Head Cheer Leader, Class President and Prom Queen, all rolled into one. ;)
Sue in Vancouver USA
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Dufreyne
Im' sorry you have been diagnosed with the AN; I really am. I was amazed with the range of emotions that I have been experiencing; but I am coming to terms with it by arming myself with as much knowledge as possible. I like to make informed decisions, I read the forum often but I don't post much as I am in W&W and I don't believe I can offer much advice like others but I do enjoy reading about everybody else.
My interpretation of the forum is that it is a place we come to because we need knowledge, support, advice, we have a need to express ourselves; the forum talks about the 'REAL" of our situations and not just facts. You read about peoples' feelings particularly the fear or confusion in the newly diagnosed but then somebody willl come forth who has travelled that road before and offer support and comforting words; how wonderful is that. The forum offers humor in sometimes difficult situations, it gives advice; I particularely liked the advice given "what to take to hospital". The ideas that are suggested on the forum come from the experiential learning of others - where else would we have such a collection of information.
I think it is wonderful that you have shared with the forum that you are a Dr, I imagine some of your colleagues would not support you visiting site like this; you have a valuable insight into the medical world through AN eyes. I have a past life in the medical profession and I struggled with friends suggesting that it is not good to 'know too much' or to read too much information on the internet it will only upset you. I believe I would feel a lot worse waking from surgery potentially with a variety of symtoms that without prior knowledge would freak out the best of us.
Look forward to hearing more of your story.
Kimbo.
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Hi Doc and welcome!
This site has been an amazing source of support and information and I am grateful to be a part of the group.
You have quite a story, thanks for sharing. I was basically asymptomatic except for facial pain last January and for a few days again in April. Mentioned it to my PCP and she ordered an MRI. I had no hearing issues (I'm a musician) or balance issues. One minute you're healthy, the next you're not. A real shocker to a healthy and active 48 year-old. Right up until the day before surgery I was running 4 or 5 miles a day.
I'm now 10 weeks post-op and doing really well. I'm back to work full-time (I'm a dean of students), back to running, and starting to feel more and more like myself. Because my schwannoma originated from the trigeminal nerve, it's not officially an AN but they let me hang out here anyway. Surgery was relatively short (5 hours) and complication-free and I was home in short order. I have lingering side-effects, some of which may not resolve, but I can live with that. The third branch of the trigeminal was the most insulted so I have numbness, tingling, pins and needles and at times, pain. I think it is getting better every day but the progress is so slow (and I'm so impatient) that it's hard to know.
I have a hearing test next week but I expect it will show very little hearing loss. My facial nerve was moved just a little so I have slight facial weakness. This is only noticeable to me but I am annoyed that I can't whistle.
Most of us do quite well, with varying degrees of complications and side effects. I'm sorry any of us have to go through this but the experience has given me a fresh outlook on life and for that I am grateful.
I will send good thoughts your way. Is it true that doctors make the worst patients? ;)
Best,
Marci
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Marci, men in general make the worst patients, followed by doctors and nurses, equally!! ;D
Dr. D -
Welcome! I'm a little late, sorry... I see you've already gotten lots of welcomes and good advice (which is odd for a doctor to have to take our advice, isn't it?). As you've probably already found out, it's a lot different being the one diagnosed with it than the one doing the diagnosing.
Glad you found us! You'll find that Maggie's zoo analogy can be quite accurate at times! :D We may not be able to cure you, but we can make you smile in the mean time, right?
Lori
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Many thanks for a strong welcome to a warm community of friends--it is very much appreciated.
I'd like to answer a few posts:
1 Jan: With respect to the BAHA device, I must confess that prior to my diagnosis, I was unaware of the specifics other than to know that it was a hearing aid device when the cochlea was no longer functional. It seems to have several advantages over the CROS in a head to head matchup. I found an interesting journal article on this topic that directly compares both devices. You can copy and paste the link below to check out the abstract. http://www.ncbi.nlm.nih.gov/pubmed/12544032?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed
Also, thanks for the tip about the calender.
With respect to the tonsillectomy, in hindsight, I do think my ENT jumped the gun. However, if he hadn't performed the tonsillectomy, then I probably wouldn't have pursued the diagnosis of AN. You see, it was about 4 weeks after the tonsillectomy that I experienced the vertigo and hearing loss (but it only lasted a short while). I was convinced that it was a complication from the surgery, which is the only reason I contacted the ENT. I know myself, I would most certainly have blown it off if I didn't think the two were connected. I am now, in hindsight, grateful as this was caught while still small.
2. Sue in Vancouver: I live in southern Oregon. A medium sized town called Medford. It's about half way between Portland and San Francisco. Nice place to live, but it is growing too fast. Thanks for the tips about the photos, I'll check it out. With respect to the nomenclature of "Acoustic Neuroma" vs. "Vestibular Schwannoma" it is annoying. I tend to use the more customary name, Acoustic Neuroma, but I cringe a little while saying it.
3. OMG16: Sounds like it was a rough road for quite a while. I would be interested in the details of your story, if it's not too personal. I love your positive attitude.
4. Jim: You have quite a story and series of events that led to your luck. You know what they say, "it's better to be lucky than good," at least in Blackjack. Sounds like you had a great team of doctors and nurses working on your behalf to deliver a comprehensive treatment to your situation. We're very lucky that some individuals have devoted so much time and effort to deal with our diagnosis. By the way, you have a knack for writing. Ever given it any thought?
5. Arushi: With respect to physicians and their thought process about making a diagnosis, there are a few things to bear in mind. In medical school and residency, physicians are taught to look for patterns and to try to have all of the patient's symptoms fit neatly into one single diagnosis. They actually have a name for this it is called "Ockham's Razor". In reality, what occurs is one of two things. Patient's either neatly fit into a certain diagnostic pattern or they fall out. Physicians, like all people, vary in their ability to deal with the unknown, as it is uncomfortable. You will find docs who enjoy the challenge of a diagnositic dilemma and those who are put off by it. In my own practice, I look at it as a puzzle. Sometimes all the pieces come together nicely and sometimes they don't--those are the cases that ultimately are the most satisfying as it challenges your abilities and forces you to dig deeper. With respect to our particular diagnosis of Acoustic Neuroma, this is one of the most difficult diagnosis for multiple reasons. First, for every case of AN that a doctor diagnoses, he has seen hundreds of patients with vertigo, headache, dysequilibrium and hearing loss. Until our medical system allows for an MRI for all patient's who have any or all of the clinical signs of AN, we are stuck in the current algorithm. The diagnostic clue that gets the attention of docs most is unilateral hearing loss of sensorineural origin. Until that happens, you are misdiagnosed with 'labrynthitis' or 'benign positional vetigo' or 'otosclerosis' or a 'middle ear infection' or 'mastoiditis'. I'm hopeful that with the advent of more and more MRI centers, this diagnosis will be made earlier and earlier. Most experts note that they are seeing cases of smaller AN's. I hope this trend continues.
6. Phyl: Thanks for the "wellness wishes". It is appreciated.
7. Kimbo: You're right about the humor aspect of all this. It truly keeps us sane while facing down some difficult circumstances. I also think it sets a good example for our friends and family who are watching us go through this. Someday, they will likely be experiencing a significant medical diagnosis-one way or another. It is then that they will remember how you got through your difficult diagnosis.
8. Marci: You're right about the "fresh outlook on life". I've found myself enjoying every waking (and sleeping!) moment. I'm 42 and figure, with good odds, I'm about half way through life. I've done some things well and other things, not so well. I have made good choices and some bad ones. For the second half, I'd like to work on making better choices. After the diagnosis sunk in, I had this moment of clarity like nothing I've experienced before. I found myself knowing, with certainty, what was important in my life and what was simply window-dressing. There was no grey zone--simply important or not. The important things were all the classic ones, family, friends, relationships. But I really knew it. Things that lost all importance included material items, money issues and inconsequential bad feelings. It was so strange, generally I tend to see shades of grey, but this time it was instantaneously clear. That's gotta be positive...
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Welcome, Doc - sorry you have to join us, but glad you found us. I found this site (well, actually my hubby found it) the night I got my diagnosis. I read into the wee hours of the morning - some of what I read scared me, but most of what I read was comforting. And, this forum helped me to put a human face on a terribly frightening diagnosis. I've made some good friends here, and continue to stay active because I know from personal experience how helpful it is to hear from people who are "on the other side."
As an aside, I used photobucket to upload my picture to this site. And, you can update your "signature" info from your own profile pate (click on Profile above).
Debbi, sending you good wishes from New Jersey - the Right coast... ;)
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Debbi:
Thanks for the well wishes. Sounds like you had a few bumps in the road, but are perservering very well. I hope to maintain the same positive attitude. I'm headed for surgery later this month. I'm working a fair amouint--trying to stay busy.
Dufreyne
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Hi Again Dufreyne,
Medford is a nice town. I went to school for one year at, what was then, SOC. Ashland was a pretty little town. I even took a Shakespeare class and had Dr. Angus Bowman as our teacher. That was a real fun treat. Every town seems to be growing. We drove through Grants Pass a year or so ago, and I'd lived there as a child. It's so different! If you went to high school in Medford, then, of course, we are bitter rivals, as I went to Roseburg High School! ;) ;D My neighbor two doors up went to South Eugene High. We had to give each other a bad time about that, when we found out! :)
Anyway, it sounds like you are doing okay.
Sue in Vancouver, USA
RHS Class of '64
SOC - '64-'65
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Welcome Dr. Dufreyne!
I am also a big fan of The Shawshank Redemption. As the one moderator on the west coast, I can extend you a special welcome to our forum. I have just returned from a visit to Ashland, where my father was having a new hip installed. For all I know, you may be the urologist he sees in Medford.
I live in Portland, and another member, who posts as 4cm in Pacific Northwest, but now goes by Daisy Head Mazey, also lives in this area, and had surgery with Dr. Jackler at Stanford about a year ago. You might try to contact her if you are interested in her perspective. We also have a Portland ANA chapter that meets every few months, you are welcome to come up and join us if you have the time. DHM is now co-chair of the group, and has arranged for a facial retraining specialist to give us a presentation December 6th.
http://anausa.org/forum/index.php?topic=7537.msg79500#msg79500
Maybe you could claim the trip as a professional expense, in which case you could buy us all a latte! ;)
I really appreciate your remarks about the diagnostic process as it relates to acoustic neuromas. I had a friend in college who went on to medical school, and told me that they summed it up in the adage "when you hear hoof beats, think horses, not zebras." I am afraid that we are the zebras, and that acoustic neuroma (or vestibular schwannoma) will always be fairly far down the list of diagnoses to be considered. Perhaps one day, though, an MRI around age 50 will become as common as a colonoscopy, as a suggested screening for what seems to be a pretty wide range of things that can go wrong in the noggin.
Thanks for joining us, and I hope your upcoming surgery goes flawlessly.
Steve
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Steve:
Thank you very much for the info re: the portland ANA chapter and '4cm in Pac Northwest'. I went ahead and contacted her.
I will try to attend the December chapter meeting--I'll be about 6 weeks post op and will likely benefit from getting out of the house.
Thanks again.
D--
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D -
if you don't get out of the house earlier than six weeks post op, you'll be absolutely stir crazy by then :D
Steve -
hope your dad's hip replacement went well. My dad's had both hips replaced - one of them twice - and it's made a world of difference for him.
I also like your suggestion about a routine MRI around age 50; great idea.
Jan
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D,
Having just re-read your first post, I think I should add that to me, for an intra-canicular tumor less than 1 cm in size, with good hearing worth preserving, doing Cyberknife with Dr. Chang at Stanford is a treatment option worth considering. If you want more info on that, just ask. It is what I did.
Steve
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Steve:
I appreciate the thoughts on CK. I looked into Gamma Knife, Cyber Knife and FSR extensively. I strongly support those who choose that option, but it just wasn't for me. Someday, this whole diagnosis and it's treatment options will be completely worked out and there will be a simple algorithm that doctors will follow based on hard science. Although, I am grateful that I live in 2008 when the treatment options have gotten so much better than before.
Thanks again.
D--
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Hi Dr D again,
It will be a wonderful day when AN's and other such brain boogers can have a very specific method of treatment that doesn't make the patients looney tunes in trying to figure out which way to jump. I don't know, maybe AN's or VS's is the only BB (brain booger) that presents this confusion of options. In the meantime, I will console myself in the knowledge that one day soon, I shall probably wake up with some kind of super power that my radiation has given me. I mean, besides healed, I'm sure there must be some wonderous thing to come out of this! Well, there is delusional, but I like to think I can find humor in the tumor. ;) ;D
Sue in Vancouver, USA
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Super Sue:
I agree. We need to find the humor in the tumor!
To my knowledge, this is the only brain tumor that poses so many options to the patient--which drives us all crazy. The vast majority of brain tumors have a single treatment pathway that the patient may or may not choose. However, we are the lucky ones. Some folks have only one treatment option, but also have malignant tumors. We are the lucky ones...
D--
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I'm donating autologous blood this week and filling out the insurance paperwork as well as my medical leave of absence paperwork.
D -
I meant to ask you the other day, what is your reasoning for donating autologous blood?
I hope you don't mind me asking :-[
I was told by my neurotologist that this wasn't necessary since AN surgery isn't usually a "bloody" surgery - and in my case, that was absolutely true.
But now that I see you are doing this, and you're a doctor, I guess I'm looking for a second opinion ;)
I also hope you don't charge me for this second opinion :D
Jan
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Jan~
I gave a pint & my BIL gave a pint - they said that they NEVER use this - that it is just precautionary. In my case, they used BOTH pints...
K
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Jan:
You're right that most of the time it is not necessary. However, whenever you are operating near or around the brain, there is tremendous vasculature at risk. The surgeons doing this procedure know where everything is "supposed" to be, but there is a certain amount of anatomic variation between patients and sometimes an artery or vein gets traumatized. In most cases they can use something called "surgicel" to stop the bleeding (a small pad with coagulant properties) or simply ligate (tie off) the cut artery or vein. Hopefully, that same artery or vein would not be too big! Also, depending on a number of factors (including age) some individual's arteries and veins are more friable (fragile) than others.
We have a saying in Emergency Medicine--"Hope for the best, prepare for the worst". In practicality, the more I prepare, the less I need it! So, hopefully, the same will apply here...
D--
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D -
thanks for the medical explanation - as an accountant I always find this kind of thing somewhat confusing, but totally fascinating.
Being a regular blood donor, I was aware of autologous donation so I knew enough to ask my doc about it. And even though I was confident that he wasn't "leading me astray", I have heard others on this forum mention that they donated their own blood so I wondered about it.
Guess as K proved, it's not a bad idea.
Jan
PS - I'm right there with you on the "hoping for the best".
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Donnalynn: Thank you for welcoming me to this forum. It is appreciated. I see that you had Middle Fossa surgery this year. How did it go? Anything unexpected? Any words of advice that perhaps weren't conveyed to you pre-op? My surgery is scheduled for a couple of weeks from now. Thanks.
Jan: Sounds like your surgery went great and you had no need for any extraneous blood products. I am very happy that your surgery went well--it always pays to have experienced people doing what they do best.
D--
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Donnalynn:
Thank you for that thoughtful preview of what to expect. It is exactly the type of information that I've been trying to get. You put some things in perspective that I frankly had taken for granted. I hope to be better prepared.
I do have one question that I forgot to ask that might seem silly: how do they repair the hole in your skull? Do they put the piece back or simply cover it up with something? I just figured that they probably put the piece back and use a small plate to secure it back to the rest of the skull, but I really don't know. Your thoughts?
Also, have you noticed any cognitive deficits? Do you find any difficulties thinking clearly? I'm expecting to be fuzzy for a few months, with gradual improvement back to my baseline--is that realistic?
Dufreyne
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Don't know what your docs will be using, but mine used some sort of (can't remember name of product) putty. I know others replace the patients bone with plates and screws. There is controversy regarding what is used in causing headaches post treatment, but don't think there is anything definitive here.
I certainly had difficulty multitasking, but no longer. Also remember having difficulty with math, much improved. Short-term memory problems come and go. I do know with SSDness and not hearing clearly can make you think your having cognitive difficulties, but once you "hear" all you realise you are "okay". I remember my surgeon, Dr. Antonelli, telling me he would choose surgery if it were him (yes, I know he's a surgeon and all) as he would be concerned with cognitive issues using radiation treatment. Having said this, I don't know if either treatment is worse or better in that regard.
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Dufreyne:
My neurosurgeon inserted titanium mesh held by tiny screws to cover the bone removed during the surgery. It healed well (some feelings of 'tightening') and has not been a problem in any way. I would prefer this to using belly fat as a filler which is the 'traditional' method, but of course, this is an issue to be discussed and decided between you and the surgeon.
Jim
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Hello D,
Hope the next couple of weeks of waiting go well for you. I have only just found this site today - I have just been diagnosed - 2.5cm roughly starting to push on my brain stem, facial numbness, hearing loss. Good times! I'm 31 and noticed the hearing problems a couple of years ago, but my GP wouldn't refer me to an ENT, then I went numb down the right side of my body and face all of a sudden in May this year - turns out there's a cyst inside my tumour and my consultant thinks it grew all of a sudden in May and hit my brain stem which caused the numbness to my body, and stretched out the nerve to my face at the same time. Face still numb, body calmed down. I had a one night stay in hospital to make sure I hadn't had a stroke or anything like that then they sent me off with a CT scan, a lumbar puncture and a ECG under my belt. I had an outpatient MRI a month later and then heard nothing for months and months. I'm in the UK and the way things usually work here is that if they don't find anything wrong, they don't tell you - they only tell you when something is awry. SO I thought (somewhat stupidly), that everything was fine and the numbness (I hadn't twigged that the numbness and hearing loss were related at that stage) was just one of those things. About a month ago I saw an article in the local paper about a woman with breast cancer who had a mammogram and never got her results - assumed she was fine, but lo and behold, 3 years later, she now has the cancer in her bones, is dying and the breast cancer can easily be seen on the original mammogram. So I thought, mmm, that's not very cool, I might chase up my MRI. So I did - and eventually, after trying to get through to several people at the hospital, talked to a lovely secretary in the Neurology department who dug out my records, told me the original doctor I saw back in May had left the hospital and no one thought to tell me my results. She got some advice from the neurologist and referred me to an ENT surgeon, who saw me, told me what was going on, referred me to a neurotologist (at a different hospital now...thank goodness!) and here I am! Sorry, that ended up being a bit of an epic, I just wanted to say hi! I'm scheduled for trans-lab surgery in February here in the UK with a fantastic surgeon who has over 1000 AN operations under his belt - this is my plan B, my surgeon is also writing to doctors in Australia (I am Australian) to see if someone fabulous over there can do it - he advises as I don't have anyone over here, it would be better to be recovering with my family around. So cross fingers someone will operate in Feb! But point being, you asked about closing up the hole - over here, the surgeon I've seen closes the gap using the uppermost layer of muscle from the leg as it is extremely strong apparently. I asked him why he doesn't use abdomen fat like lots of others seem to, but he said it isn't as good - for whatever reason. Anyway, they have a website with questions and answers which may help you before and after your surgery. Sounds like you have done an amazing amount of research, but just in case you need more answers: http://www.addenbrookes.org.uk/serv/clin/surg/neurotol_skullbase/acoustic_faqs1.html
Hope it helps!
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"I do have one question that I forgot to ask that might seem silly: how do they repair the hole in your skull? Do they put the piece back or simply cover it up with something? I just figured that they probably put the piece back and use a small plate to secure it back to the rest of the skull, but I really don't know. Your thoughts?
Also, have you noticed any cognitive deficits? Do you find any difficulties thinking clearly? I'm expecting to be fuzzy for a few months, with gradual improvement back to my baseline--is that realistic?"
Dr. D,
They repaired my "hole in the head" with cranioplasty, which I take to mean some kind of drywall compound. ;) I've had virtually no headaches since after the recovery period (am I still recovering?) but I had a ton of headaches in the years leading up to diagnosis.
Regarding cognitive issues, there is a new category on this forum related to them so you should check it out. I definitely had my problems with this but it has improved to the point where I believe I'm right back where I was to begin with. I'm a dean of students in a busy conservatory with a lot of responsibility so, like you, cognitive impairment for me would mean the end of a career. At 3 months post-op I feel pretty confident that other than my usual spaciness (my natural state) all is well. I'm sure you will recover to that point also. I guess it depends on the person and the individual aspects of the surgery but from what I've gathered, most folks return to their pre-surgery cognitive state.
All best,
Marci
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:)I am new also and was misdiagnosed for over four years. I have a fast growing tumor at 1.7 X 1.9 X 2.0 cm. My surgery is scheduled for Monday morning Oct. 13. I am a science teacher so I have researched until I can read no more. I have one of the greatest surgeons in the country at the University of Iowa Hospitals who assured me his goal was to "save my pretty smile." I am healthy, strong, educated, and full of faith that I can successfully overcome this challenge and help others to face similar adversities in the future. I am so grateful for finding this website and reading the stories that other AN members have shared. It is comforting to know that we are not alone and that there are others who understand this challenge. I hope that I, too, can be of help to others as I overcome this intruder. Bless you for sharing. You will be supported by many. SUE
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Hello. I am also a Univ of Iowa survivor and being found in time to be NF2, have had 4 surgeries there. I am very grateful we do have such a place in the state. I will send you a personal message since have done my story many times here and gets to boring to be read numerous times. Cathy also had surgery there recently and is known as doglover on the forum. I know of others who have come and gone from here also. All did well.
Cheryl R
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HI SUE,
Yep, Cheryl is right. I had a mid fossa with Dr. Gantz at the UIHC on Aug. 21. I am now 7 weeks post-op and returning to work full time next week. (yikes!).
If you have any questions feel free to contact me. :)
Cathy
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Big thanks to Karen(Arushi), Jim, Joe Bloggs, Marci and Sue for your insight on "patching the hole."( It almost sounds surreal).
Marci: I'm happy to hear that your cognitive abilities did come back, albeit slowly. Working as a Dean of Students must be demanding, yet gratifying. Thinking students always keep you on your toes...
JoeBloggs: I can't believe they didn't call your with the MRI result. I know we have different systems (and we have our own breed of problems in the U.S.), but give me a break. Kudos for taking it upon yourself to pursue the MRI results despite the lack of a phone call. With respect to the surgeon, remember you only have one chance at getting this right (or as "right" as possible). No matter which country, pick the best surgeon you have access to. You can always recuperate where you want. That's just my two cents.
Karen(Arushi): Thanks for the tips about 'multi-tasking' and short-term memory. I'm an ER doc, so I suspect that may prove to be my biggest hurdle. It helps to know in advance. With respect to cognition, I hope to do various activities to stimulate my brain. I am fortunate to have a 7 year old math whiz for a son who I've been sort of home schooling. Now it's going to be his turn to teach/quiz me! He's going to love it!
Sue: I admire your positive outlook and take charge demeanor. You've obviously researched this to the point of diminishing returns, and have made a good decision. I am happy that you're moving forward so soon. I'm a week and a half behind you. Perhaps we can share recovery stories. Many good thoughts your way...
I am trying to keep busy ahead of the surgery--mostly working and spending time with family. I do, however, find myself distracted at work. I often see patients with complaints or illness that are significantly less serious than what we have all experienced with AN. I find it difficult to stay focused on the fact that, for them, their problem is a big deal. I have to constantly remind myself not to compare their problem with mine--but it's human nature.
On a lighter note, does anyone know if there is a national ANA symposium? If so, where and when?
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D -
the ANA has a symposium every two years. The last one was in Philadelphia in 2007, the next one is in Chicago (yea!!!) in 2009.
It's in August - I think the 14th through the 16th - at The Drake Hotel and it's being hosted by Dr. Richard Wiet and Northwestern University Medical School.
Dr. Wiet is on the ANA Medical Advisory Board (and is in practice with my neurotologist, Dr. Robert Battista - another yea!!!).
Anyway, I'm definitely looking forward to the symposium - as are many others - in fact, I'm volunteering and I'm also a sponsor. It would be great for all of us to meet you there.
More details will be on this website shortly and there will be registration information in the December issues of Notes (ANA newsletter - if you join, they'll send you one).
Jan
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Dr. D,
These are Oberlin students; they absolutely keep me on my toes!
I am planning on attending the conference next August--it is my 50th birthday (did I really say that?) and I told my husband that was the birthday present I wanted. I'm also dragging him along. I really want to meet (and hug) as many of these fine forum people as I can; they continue to be a lifeline to me (no Tina Fey joke intended) and besides, Chicago is a great city. Ok, it's really the shopping that calls to me...
Did you put your surgery date on our calendar? Will someone post updates about how you are? I know it sounds hokey, but it is a comfort to all of us, pre and posties.
All best,
Marci
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Good point, Marci.
We do worry about our "family" D, so please make sure your big date is on the AN Calendar.
If it's already there, I apologize for the reminder - I haven't had time to check the calendar lately.
I've been relying on LA David to keep me informed.
Jan
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Thanks for your wise words of advice Dufreyne - you are right - I can't just let any random surgeon cut a hole in my head! I need these brains! And yeah, it is a bit slack re: not being told about the AN - just one of those things though, a clerical or whatever error - perhaps if I was in America I could sue them, but not here - it's just not the done thing unless something horrific happens in which case the doctor gets struck off - that's about the extent of it.
Good luck with it all!
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Thanks for the info re: upcoming symposium in August 2009. Chicago is a great city. I'm really looking forward to meeting and spending time with everyone from here. I'd like to make a big vacation out of it and spend some time really getting to know Chicago.
I think I should probably formally join the ANA. I'd like to start receiving the newsletter that Jan described.
D--
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A weekend in Chicago--that's what I'm talking about! :D
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I think I should probably formally join the ANA. I'd like to start receiving the newsletter that Jan described.
Your wish is our command. :) Just go here: https://secure.baxinternet.com/~anausa/membership_donate.html (https://secure.baxinternet.com/~anausa/membership_donate.html).
As a medical professional your annual dues would be $150. Money well spent, in my opinion. The neurosurgeon that performed my AN surgery and partnered with a radiation oncologist to map my FSR treatments - both very successful with absolutely minimal complications - has been a member of ANA since it's inception back in 1981. That impressed me as it demonstrated this doctor was involved with the AN 'community'. Although he was my age and performed spinal surgery as well as skull-based surgery, he was very current on the latest methodology relating to acoustic neuroma. I will always be grateful to him.
I think you'll enjoy the newsletter ('Notes') and may eventually be a contributor as it always has one or two AN-related articles written from a physicians standpoint. As a doctor having AN surgery, your input would be highly valued.
What is the scheduled date for your surgery? I would like to add it to our 'AN Treatment calendar'. http://my.calendars.net/AN_Treatments (http://my.calendars.net/AN_Treatments) unless you would rather keep the date confidential or, perhaps prefer to add it yourself.
Jim
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If a dr is joining because he is an ANer than why wouldn't his ANA membership be the usual $40. Many of us nurses would be considered medical professional and none that I know of had the higher fee. I can see if a dr is joining to give information or professional purposes only but one who is a regular one of us should not be charged the higher fee.
Cheryl R
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If a dr is joining because he is an ANer than why wouldn't his ANA membership be the usual $40. Many of us nurses would be considered medical professional and none that I know of had the higher fee. I can see if a dr is joining to give information or professional purposes only but one who is a regular one of us should not be charged the higher fee.
Jim -
I was wondering this very same thing. Isn't the $150 medical membership for doctors who are neurosurgeons, neurotologists, etc., who actually treat ANs? I'm only a member of the ANA, which translates to "I have no authority at all here" - but I would think that D would be entitled to a $40 membership like the rest of us.
Sam Rush, if you're out there, do you mind telling us how much you paid for dues?
Jan
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I believe it is up to Dufreyne. As Jim said, he can register as a medical professional for $150, or as Cheryl said, he can register as a patient for $40. As far as I know, the ANA doesn't run a background check you.
Hey,finally there is an example of how having an AN can pay off; Dufreyne stands to save $110 on his ANA membership! :D
Steve
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Thanks for the clarification, Steve.
Regarding the background check - probably a good thing for some of us ;) :D LOL
Jan
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What, a background check? Uh-oh, I had no idea....can I return my membership?
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I agree with all of you, I think it best to simply join as a regular member. Despite the unique circumstances, I'm here because I am a patient with an Acoustic Neuroma.
As far as a background check is concerned, I did sleep in a Holiday Inn Express last night. Does that count?
D--
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That would depend on who you were with at the time :D :D !
Mags
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:D :D :D :D :D :D :D
Never, ever, lose your sense of humor Dr. D--it will get you through most everything. ;)
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Great comeback Mags :D :D :D
I agree with Marci, D.
IMO humor is a vital part of dealing with an AN and the after-effects ;D
Jan
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Jan:
What does "IMO" mean? Pardon my ignorance on this one.
D
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Jan:
What does "IMO" mean? Pardon my ignorance on this one.
D
Internet Lingo for "In my opinion".... much like TTYL... "talk to you later", LOL for "laughing out loud", etc. Phyl
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I love it when someone else asks the question you have been wondering about, we might need a glossary because I didn't know any of the acronymes you listed - thanks Phyl. I found a love note in my son's pocket when I was doing the washing and it said LOL I thought it meant Love of my Life.
Kimbo
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Phyl: Thank you! I think we need to create a spreadsheet of internet acronyms! Jan could help us with that given her accounting background. That's the ticket!
Kimbo: Ha! That is funny. My kids are young--not looking forward to dealing with the soap opera drama of the teenage years that some of went through!
D--
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When your kids are teenagers it will make brain surgery feel like a picnic. My son is 20 now and has turned out to be a great guy but for a while there I thought we would be visiting him in jail instead of college.
M
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Phyl: Thank you! I think we need to create a spreadsheet of internet acronyms! Jan could help us with that given her accounting background. That's the ticket!
Kimbo: Ha! That is funny. My kids are young--not looking forward to dealing with the soap opera drama of the teenage years that some of went through!
D--
Here's the list as a reference.
http://www.safesurfingkids.com/chat_room_internet_acronyms.htm
Ok, back on topic gang! :) Phyl
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Has anyone gone through Vestibular Rehab after surgery? Is it worth it?
Should I set that up now? ???
Dufreyne
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Yes, yes, and YES!
See if the facility nearest you has vestibular rehab, ask using the word as the exercises are specific to retraining the brain/eyes/feet, etc. This specific retraining speeds up your loss of balance helping the brain to fully compensate. As part of my re-training I was put into a semi-circular machine where after being strapped in, and the computer program was set, the floor would move, the walls would move away from me, there was a screen on the wall that also had visual effects going on at the same time. This machine I heard is similar to the ones the astronauts use after returning to earth to gain their balance. My course was 6 weeks, with at-home exercises done every hour on the hour into the evening where you can shut off the lights and take advantage of dim lit room. I ended my day after one round in a dim lit room. These took about 20 minutes to perform, so not so time consuming. Your at-home program will be tailored to you and could be different.
I most definately would recommend this if it is available to you, otherwise you can ask for exercises your treating physician has, use the ones the ANA puts out, and collect the ones that have gone around on this site.
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Hi dufreyne, sorry you had to join our happy bunch here, but welcome. :)
I'll second the vestibular rehab as helpful and I haven't even had surgery yet. For the past 18 months when they thought I had Ramsay-Hunt syndrome(which is a weird syndrome that affects your 7th and 8th cranial nerves) I have been getting vestibular rehab, and it did help with the vertigo. Quite a bit initally. But since we now know it's a tumor and not the chicken pox virus attacking some cranial nerves, it makes sense why it hasn't been helping the past year. I did go in for a pre-op talk to my balance therapist who gave me some great ideas and exercises to do both pre and post. And I'll definately be doing them!
I would definately find someone in your area that does this, I think it will help immensely. (just my nonprofessional opinion here). ;D
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D -
no, not sure, maybe.
My neurotologist actually gave me a printed page of vestibular experiences to do pre op and had me continue them post op. He told me that he has patients start doing the exercises pre op because it makes it easier for them to do them post op when their balance is generally much worse. I found this to be very true. The exercises were definitely harder to do post op, but since I was familiar with them, I at least had that in my favor. The exercises really helped me regain my balance.
Post op my doc also gave me the option of being referred to a PT (physical therapist), but I didn't think I needed it so I declined. My balance hasn't been a big issue since a few months post op. I still have a small issue when I'm overtired or stressed; I think I always will.
BTW (by the way), I tend to use IMO a lot - since it says me from having to type the disclaimer "I'm not a doctor, but" or "here's my two cents worth".
Here are two abbreviations you won't see in the link Phyl gave you. SSD (single-sided deaf) and BAHA (bone-attached hearing aid). Sometimes we have a language all our own :D
Jan
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Jan is correct that anything you practice doing pre-surgery will be somewhat easier to do post surgery. I was a menace with my pilates and bosu balls pre surgery - and I do think it made it easier to creep tentatively aboard after I can home from the hospital.
Like Jan, I haven't needed any vestibular rehab. My balance was pretty good even at the hospital. I do get wobbly sometimes, usually when I am tired or, as Jan said, stressed. Otherwise, though, I am fine. Just as an aside, I have given up my dream of walking the high-wire... ;D ;D ;D And I think my balance beam days may be over too! hahaha
Debbi
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Thanks everyone. I called to try to set up the Vestibular rehab now so that it is all set post-op. A couple of physical therapists with my health insurance 'specialize' in vestibular rehab, but I don't think they have anything fancy. I left a message. We'll see.
This may sound funny, but has anyone tried Yoga post-op? I've heard this can be helpful for balance, but have never tried it. Any thoughts?
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Dufreyne~
Arushi did a long, WONDERFUL post on yoga - look it up or ask her. Also, the new Wii Fit works wonders...and the kids like it too!! ;D
K
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D -
Arushi did do a great post on yoga.
Here's the link http://anausa.org/forum/index.php?topic=7668.0
Jan
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Thanks for all the tips about Yoga. Maybe it wasn't such a strange idea afterall. They have a local Yoga studio downtown that I think I'll check out after surgery.
Jan: Thanks for the link--very nice overview. I think I need to read "Yoga for Dummies" first to get up to speed on the lingo.
Kaybo: I do hava a Wii, but haven's seen the Wii Fit game. Sounds like it may be worth checking out. Thanks.
Debbi: It's funny you should mention 'walking the highwire'. I recently took some pics walking on a high metal beam at a local park and balancing well. I figured that this may be the last time I'll try that.
Andrea in SLC: I'm very suprised they misdiagnosed you with Ramsay-Hunt syndrome for so long. That generally manifests itself with vesicles (small, fluid-filled lesions) on the ear canal or eardrum, in addition to a Bell's Palsy type scenario. Especially with the concurrent balance issue, that seems strange. Glad it was finally diagnosed properly.
Arushi: Thanks for the tip about the Vestibular Rehab. I like the sound of your setup. I don't think they have anything that fancy here, but I will now know what to press them about.
D--
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Arushi: Thanks for the tip about the Vestibular Rehab. I like the sound of your setup. I don't think they have anything that fancy here, but I will now know what to press them about.
Anytime!
Regarding Yoga, you don't have to know one little bit of the language, postures, etc. Start in a beginners class, make sure they know you have/had tumor and have balance issues.
I find it difficult to perform yoga in dim light (like most studios around here use) and/or some have carpeting (along with yoga mat on top of that makes for soft surface) more challenging here too. If the studio uses dim light ask that you be placed at the nearest light source or maybe they will turn up the light for you.
If I were teaching a class to you I would put you in bright light, hard floor and not expect you to "learn" to balance in these challenging situations as you are to relax in the posture at the same time holding strong and if you are fighting to keep your balance this can create too much stress.
Hope you find Yoga can help you if not for balance of the bones and muscles then balance of the mind/spirit!
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Hi Dufreyne - they thought it was an atypical presentation of Ramsay-Hunt, and since the idiot radiologist somehow missed the tumor on the MRI, they had no reason to change their mind. Thankfully my ENT went with his gut feeling and had me get another one 18 months after the first one!
Good luck with your surgery and postop recovery! Hope it is as pain/irritation free as possible!
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D,
Wii-fit, yes, definitely, so much fun and good for you too. How many things can you say that about?
M
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Hi Dufreyne,
I'd definitely go the yoga post op if I were you. That's my plan too - I've practiced yoga (off and on) for a few years and it wouldn't surprise me if that is one of the reasons my balance is really good despite the AN. The neurotologist was surprised my balance was so good. I'm not going to hit the yoga for a while after the surgery though, just because some of the postures, particularly the inverted ones, for me put a lot of pressure on my head and I don't want to do that until I'm all healed up!
I'd also recommend a pair of MBT trainers (http://www.swissmasaius.com/). I've had mine for about 6 months and again, I credit these with helping my balance. The soles are curved and so even when you're standing still you're body and muscles are constantly compensating with the unsteadiness. Also they're super comfortable! Of course I'd probably not recommend them when you're just out of surgery because they'll make you even more wobbly - but shortly after that, I think they'd really help.
Good luck with everything
JoeB
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Joe -
a colleague of mine has MBT trainers and, although she doesn't have balance issues, she absolutely loves them.
They're pretty pricey though, aren't they? Do you think they're worth the price?
Just curious because I've been contemplating buying a pair, but I'm not sure I want to put out the money.
Jan
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Hi Jan,
Yeah, they are pretty pricey - I'd still recommend them though. I have to spend a lot of time on my feet at work and I was starting to get knee niggles and back niggles - but since I've got them, nothing...I think I've also got stronger through wearing them. I would say though, definitely try them on and see how you get on - don't just buy a pair on the internet. The fit is slightly different than normal shoes, so best to try them on to get the right size! Or you could try them on then buy a cheaper pair on ebay or something once you know your size! I've just seen they have boots now - mmm....can I save up for them as well as my trainers - that is the question!
JoeB
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JoeB -
thanks for the feedback. Once I'm done paying off my daughter's Uggs, I'll look into a pair of trainers for myself 8)
Jan
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Hi Dufreyne,
Sorry I somehow missed this thread and wanted to welcome you to our group. In checking the AN calendar I noticed you haven't posted your surgery date, so if it hasn't taken place yet you have my best wishes for a wonderful outcome and if it has, I wish you an uneventful and speedy recovery. I hope you will continue to post questions and answers to this forum, since as a doctor and you can provide very unique and nteresting insights to us based on your medical knowledge and of course, we are all here to help and support you.
Best wishes,
Wendy
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Everyone:
I just wanted to take this opportunity to thank you for all of the support and words of wisdom. I have read, and re-read your posts multiple times and it has given me great comfort to know that you all have experienced similar events as my own. Your willingness to share your ups and downs as well as pieces of advice have been greatly appreciated. I will try to remember this as I go through this uncertain time. Thank you again and I'll post again (when I'm able) after the surgery.
Dufreyne--
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Sleepy D (has a nice rhythm)
Wishing you all the best in the upcoming surgery from down under.
Take care, enjoy some family time and I look forward to reading more of your journey when you are a "postie".
Kimbo :D
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Dufreyne~
I don't know about the others, but I really think that it is great the way that you have joined right in with us and are active here. I guess sometimes we think of DOCTORS (& some think of themselves) as someone that is far above us mere "patients." I guess what I am trying to say is that I know you have an AWFUL lot going on and you still take the time for us - it has not gone unnoticed by me that you take the time the to address EACH person in your posts that have responded to you. I certainly don't do that!! ;) I also can tell that you want to help others and I get the feeling that you will hang around as long as you can to do that or will be a medical contact we can get in touch with if there is a question. Anyway, thank YOU for all you are willing to contribute!
K
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All the best DOC,
A successful operation, a speedy but not too speedy recovery and no headaches or facial pain or other lingering reminders.
Many, many well wishes from Southern Ontario,
Anne Marie
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Best of luck, D.
Hope everything turns out exceptionally well for you.
I echo K's sentiments. It's nice to know that someone as busy as you can find the time to participate with us on this forum. Your insight on many matters has been very enlightening.
See you on the "flip side" postie ;D
Jan
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Dufreyne~
I guess I missed the date - when is your surgery? ???
K
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Dufreyene,
I must have missed the date too -- I looked on the AN calendar and didn't see it posted. If your surgery is very soon, and it sounds like it is, you have my best wishes and prayers or a great outcome with no complications. I look forward to hearing how your surgery went and hope someone will be posting for you.
Wendy
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OK...I went back to the first post and it just says "the end of October"...so let's just start praying now, OK??
K
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Hey, Dr. D-
If you play your cards right, you may be able to greet the trick-or-treaters wearing your festive post-surgical head garb! As for me, I'm just going to scare 'em with my pirate smile! Since my "Marty Feldman Eye" is almost normal looking now, I no longer have that in my bag of tricks! ;D
Debbi, getting ready to spook the kids
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OK...I went back to the first post and it just says "the end of October"...so let's just start praying now, OK??
K -
you're right. I never did see D's surgery date put on the calendar. I read in his first post that it's with Dr. Jackler @ Stanford at the end of October.
From his last post I just figured he was saying goodbye prior to surgery - either that or he's taking some time off from the forum to research that burning cancer/cell phone question. As for me, I think I'll work on that whole economy thing ;)
Hope D returns soon, and as you suggest, in the meantime I'll pray for his swift recovery.
Jan
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May your surgical team perform with the utomost of care and perfection to ensure you a positive outcome!
I look forward to when YOU are ready to re-join us as a "postie"!
Rest peacefully dufreyne.
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Hi Doc,
Wishing you best! Is it true Doctors and nurses make the worst patients? ::)
I know you are going to receive excellent care.
Anne Marie