NY Times Christine Ebersole

[vcschaub]

I thought the following would be of interest:

Today's New York Times Magazine section has an article on the actress, Christine Ebersole. It is mainly about her amazing performance in "Grey Gardens" on Broadway. The article contains information on her family and states that her husband was a drummer and that he had been diagnosed with an acoustic neuroma after 3 years of marriage or 1991. Unfortunately, surgery left him deaf in his left ear, the left side of his face and body partly paralyzed. It mentions depression post surgery as well. I just wondered where he had his surgery.

Here is a link to the article: http://www.nytimes.com/2007/06/03/magazine/03ebersole-t.html?pagewanted=2

[vcschaub]

My intent was not to scare anyone. I had middle fossa surgery in 2005 with great success and no residual problems. I thought it interesting that the article mentioned her husband's situation and acoustic neuroma.

[Jim Scott]

vcschaub:

No problem.

I note that, in the NY Times article, it also states: These days Moloney, 57, a kindhearted man who adores his wife (“We’re still on the honeymoon,� he told me), is recovered enough to work as a real estate agent and stay-at-home parent for the five nights and three matinees each week that Ebersole is onstage.

I think the salient points for the AN patient to take from this article are: (a) Mr. Moloroney had his AN surgery in 1991, 16 years ago when AN surgery was far less advanced than it is now and, (b) the man would seem to have recovered fairly well and today, he has a good life, even after suffering fairly severe post-op complications.  I'm sure he had his wife's total support and the best care possible. 

Although its always interesting to read about someone else, even an actresses husband, who had an acoustic neuroma tumor removed, we have to look at that information in context and also realize that newspaper reporters don't know anything about this problem (acoustic neuroma) and simply repeat whatever their subject tells them.  In this case, we received a very brief overview of this actresses husband's AN experience but with little more than the bare facts, as the article obviously wasn't about him, but his wife.  I'm pleased to read that former AN patient Bill Moloney is doing well after all these years.  Clearly, there really is 'life after an AN diagnosis'.

Jim

[vcschaub]

You are absolutely right. Mr. Moloney seems to have gone on with his life very well. Thanks for taking the time to clarify that.

[Crazycat]

Yes,
   I can relate to Mr. Moloney's situation somewhat. I too, am a musician yet have miraculously survived the AN debacle I was hit with. I'm deaf as a post in my left ear with rip-roaring tinnitus, double vision, facial numbness, equilibrium issues, a borg-like shunt permanently installed on the top of my cranium with subtle, yet gradually improving left-side difficulties, i.e.: impaired handwriting. Yet, I'm still playing music and playing it well. I'm back to jogging 5 miles every day with weight training and generally feel so good that I feel naturally high. I have boundless energy. I haven't taken so much as an aspirin in months! I sleep soundly at night.
   All my life I've been lean and well-toned with a high metabolism. I've never had to work at staying thin yet I always have exercised religiously.
I'm now 50 years old.
  I remember, in 1983 when I was 26, getting a physical at a company I was working at. I was in great shape. The doctor looked at me and asked, "You a track man?" To which I answered, "No,"( I didn't start jogging until I was 42 in 1999)I'm just naturally like this". He quipped, "Well, that will all change in about another 15 years when your metabolism starts to slow down". Well, I got some extra mileage out of it because I stayed pretty much the same size and weight up until my AN surgeries in 2005, age 48. While in the hospital, I lost a lot of weight - mostly muscle mass. During my recovery, my girlfriend and I went out to eat constantly. I never frequented more restaurants in my life as I did since my release from the hospital. In horror, I began to realize that I was gaining weight around my mid-section, developing a gut for the first time in my life. I no longer could fit into my 31" waist pants. My waist size went up to as much as 34". I was running and working out the whole time! I stopped eating out as much but still couldn't lose the weight. My weight increased from 155 to 182 or so; my blood pressure and cholesterol also went up but not to the point of having to take medication. Having long since established an exercise regimen and having a proclivity toward enjoying truly good and nutritious food, I knew that I could get things back under control without prescription medication.
  This year, we spent the entire winter down in Florida. I went running every night through January, February and March, drenched in sweat at 1-2am with a tank top and shorts on( too hot during the mid-day). I'd weigh myself every day. Still, no change.
  It wasn't until I came back home in April and simply cut out sugar for the first time. I lost 15 pounds in less than two weeks!! Even though I knew of the evils of sugar and listened to people lecture me about it, I would still cheat here and there: a little in my coffee mixed with the Splendor or a Mounds bar at night before jogging. It took an entire year for me to implement
a real dietary change in my lifestyle. Old habits die hard. I've learned that sugar, in certain respects, is actually worse than fat!
  Avoid everything that has "high fructose corn syrup" or anything "hydrogenated". That stuff is virtually poisonous and contains transfat which
is the worst. Avoid the poison elixers that they pass off to us as "soft drinks" and flavored juices. This stuff is loaded with chemicals and sugar.
Drink spring water, vegetable and tomato juice; orange juice or any "real" juice without that high fructose crap in it. When you're hungry, eat, but eat the right stuff : fruits, veggies and whole grains. Avoid sugar as if it was the plague. If you do this and exercise in conjunction with it all, you cannot lose anything but weight!!
  I'm very fortunate to live down the street from a chocolatier that has invented the first dark chocolate to taste good with a natural, non sugar sweetener. The sweetener is "stevia", a natural sweetener from the stevia plant. The chocolate is good for cholesterol health, high in antioxidants and promotes blood flow. His product costs a little more but so what? I just have a little every day and that's all I need. Besides, there's no sugar.
  I haven't been contributing much lately because I've been feeling really good - even in spite of the AN related hindrances that we all experience. I realized though that this being a support group, it is my obligation to report any development I may experience on to my fellow AN patients, to advise, help or even inspire in any way I can. I've been reading the posts and threads here and my heart goes out to everyone.
 After reading that link to Mr Moloney's situation, I realized how fortunate I am to have come through this as well as I did. I got hit just about as bad as you can from an Acoustic Neuroma with a huge tumor and hydrocephalus. How I got through that surgery without facial paralysis or any of the other more serious, customary maladies I don't know. I had some of the most experienced and skilled doctors in the business for one thing at Mass General; I know that certainly helped! I also know that I had a lot of people praying for me!
   Take care, Paul

[Windsong]

Paul how wonderful your news is and I am so happy to see your post.

( as an aside here I also want to add that I became aware of sugar in my own health eating journey since january when i read labels even more closely than i had been all my life..... I had never thought of myself as eating sugar much as I buy a little bag maybe every 5-6 yrs and keep it mostly for guests... but reading labels more closely really opened my eyes.... even skim milk has sugar added and so much else too it's astonishing....)

Thumbs up for you too!!!

W.

[Palace]

Welcome back Paul!  How have you been?

It sounds like you are doing better than all of us on this forum.   

We should all go out and get Shotakovich's 10th Symphony and celebrate excellent recovery, together!



Many accolades to you,



Palace

[Crazycat]

Viki,

  I've just now become aware of what happened to your son, Coleman, having been away from the forum for so long. I wanted to express my shock and sadness to you as well as my bewilderment. I'm so sorry you've had to endure so much, and especially, so much all at once. Situations like this could easily overwhelm most of us. I salute you for your strength and courage.

        Paul

[Jim Scott]

Yes, I can relate to Mr. Moloney's situation somewhat. I too, am a musician yet have miraculously survived the AN debacle I was hit with. I'm deaf as a post in my left ear with rip-roaring tinnitus, double vision, facial numbness, equilibrium issues, a borg-like shunt permanently installed on the top of my cranium with subtle, yet gradually improving left-side difficulties, i.e.: impaired handwriting.  Yet, I'm still playing music and playing it well. I'm back to jogging 5 miles every day with weight training and generally feel so good that I feel naturally high.  I have boundless energy.  I haven't taken so much as an aspirin in months! I sleep soundly at night.

All my life I've been lean and well-toned with a high metabolism. I've never had to work at staying thin yet I always have exercised religiously.  I'm now 50 years old.
I remember, in 1983 when I was 26, getting a physical at a company I was working at.  I was in great shape. The doctor looked at me and asked, "You a track man?" To which I answered, "No,"( I didn't start jogging until I was 42 in 1999) I'm just naturally like this". He quipped, "Well, that will all change in about another 15 years when your metabolism starts to slow down". Well, I got some extra mileage out of it because I stayed pretty much the same size and weight up until my AN surgeries in 2005, age 48. While in the hospital, I lost a lot of weight - mostly muscle mass.  During my recovery, my girlfriend and I went out to eat constantly.  I never frequented more restaurants in my life as I did since my release from the hospital.  In horror, I began to realize that I was gaining weight around my mid-section, developing a gut for the first time in my life. I no longer could fit into my 31" waist pants. My waist size went up to as much as 34". I was running and working out the whole time! I stopped eating out as much but still couldn't lose the weight. My weight increased from 155 to 182 or so; my blood pressure and cholesterol also went up but not to the point of having to take medication. Having long since established an exercise regimen and having a proclivity toward enjoying truly good and nutritious food, I knew that I could get things back under control without prescription medication.  This year, we spent the entire winter down in Florida.  I went running every night through January, February and March, drenched in sweat at 1-2am with a tank top and shorts on( too hot during the mid-day). I'd weigh myself every day. Still, no change.

It wasn't until I came back home in April and simply cut out sugar for the first time. I lost 15 pounds in less than two weeks!! Even though I knew of the evils of sugar and listened to people lecture me about it, I would still cheat here and there: a little in my coffee mixed with the Splendor or a Mounds bar at night before jogging. It took an entire year for me to implement a real dietary change in my lifestyle. Old habits die hard. I've learned that sugar, in certain respects, is actually worse than fat!
Avoid everything that has "high fructose corn syrup" or anything "hydrogenated". That stuff is virtually poisonous and contains transfat which
is the worst. Avoid the poison elixers that they pass off to us as "soft drinks" and flavored juices. This stuff is loaded with chemicals and sugar.
Drink spring water, vegetable and tomato juice; orange juice or any "real" juice without that high fructose crap in it. When you're hungry, eat, but eat the right stuff : fruits, veggies and whole grains. Avoid sugar as if it was the plague. If you do this and exercise in conjunction with it all, you cannot lose anything but weight!

I'm very fortunate to live down the street from a chocolatier that has invented the first dark chocolate to taste good with a natural, non sugar sweetener. The sweetener is "stevia", a natural sweetener from the stevia plant.  The chocolate is good for cholesterol health, high in antioxidants and promotes blood flow. His product costs a little more but so what? I just have a little every day and that's all I need. Besides, there's no sugar.

I haven't been contributing much lately because I've been feeling really good - even in spite of the AN related hindrances that we all experience. I realized though that this being a support group, it is my obligation to report any development I may experience on to my fellow AN patients, to advise, help or even inspire in any way I can. I've been reading the posts and threads here and my heart goes out to everyone.

After reading that link to Mr Moloney's situation, I realized how fortunate I am to have come through this as well as I did.  I got hit just about as bad as you can from an Acoustic Neuroma with a huge tumor and hydrocephalus.  How I got through that surgery without facial paralysis or any of the other more serious, customary maladies I don't know. I had some of the most experienced and skilled doctors in the business for one thing at Mass General; I know that certainly helped! I also know that I had a lot of people praying for me!

Take care,

 Paul

HI, Paul:

Thanks for the post and the advice on the positive consequences of keeping to a sugar-free diet.  Good to see you're doing so well and able to write and play your music as well as post here.

I had almost the opposite experience regarding weight.  For most of my life, I enjoyed the benefit of a high metabolism rate that allowed me to eat pretty much whatever I wanted without any significent weight gain.  Although I avoided exercise, I had never weighed much above 145 pounds - for decades.   I should mention that I'm 5'6" with a small build.  When I hit age 50, I began to notice that I was putting on some weight and growing a small but noticable 'pot belly'.  This naturally bothered me.  I kept promising myself that I would cut out all the junk food I now ate and lose the gut....tomorrow.  A visit to the doctor's office for a routine physical a few years back was a shock.  My weight checked in at 170 pounds....the highest I had ever weighed in my entire adult life.  My BP was a bit high, too.  I realized that my waistline had grown from 32" to 34"and my 34"-waist pants were getting snug on me.  I was alarmed but not enough to commit to a diet.  A familiar story for many, I'm sure. 

As a major symptom of my (unknown to me) growing AN tumor, my sense of taste was adversely affected negatively and, between the autumn of 2005 and my AN diagnosis in May, 2006, I had dropped down to 135 pounds because I had little appetite so I was not eating.  Everyone remarked on how thin I looked and I agreed, but couldn't help it.  Even my neurosurgeon told my wife to try and 'fatten me up' before the scheduled surgery.  She's a great cook and tried - but failed.  I simply didn't want to eat.  My waist shrunk back to 32", which I rather liked, truth be told...until I found out that a (benign) tumor was the reason for my lack of appetite based on loss of taste.   

Following the AN surgery (June, 2006) my appetite gradually but steadily returned.  Soon, I was eating just as I had before my AN symptoms appeared (in late 2005).   Oddly enough, I haven't gained weight.  I asked my primary care doctor about this and he said that major surgery sometimes 'messes up the hormones' and can kick-start the metabolism back into 'high gear', where mine had always been, up until my late middle age.  Today, I weigh about 138 - and I'm still 5'6".  My wife - trying to lose 20 pounds - is quietly jealous but says little except that I'm "very fortunate", which is true, I know. I feel fine, my stamina is pretty much the same as always and I eat a solid three meals a day, plus snacks.  FYI: I'm totally 'regular'.  Pre-op CT scans showed nothing abnormal in my digestive system.  My BP is now about 135/78.  I have to assume that my PCP was correct and my metabolism is simply running at high speed again, as it had for most of my life, prior to my AN manifesting itself with a loss of taste and appetite, among other symptoms.  I don't go out of my way to avoid sugar (too much work) but I don't crave sweets or use sugar in my coffee or tea.  I hate carbonated soda.  I prefer iced tea, no sugar, no lemon, thanks.  I hardly ever consume alcoholic beverages.  I also never add salt to anything.  I'm basically a 'bland' meat-and-potato type of eater, and I enjoy ice cream as often as possible.  I still avoid regemented exercise but I do move around as much as possible most of the day.  That includes walking, washing the car, etc.  I feel blessed to have, like you, Paul, come through the 'AN experience' basically 'intact' and, in my case, slimmer than I was before!  I only wish every other AN patient shared the same positive experience. 

Jim

[vcschaub]

Paul,

Thank you for your kind post. The support I received from this forum was incredible. I received many private emails as well as postings. I don't think I will ever get over the loss of our son, Coleman. Each day is a little better, although a "wave" will hit me unexpectedly. Again thanks to you personally and to many on this AN forum who were so warm and sympathetic. Every post and email was greatly appreciated.

with regard,

Viki

[Crazycat]

Jim,

   That was a good and inspiring read! Yes, I believe we share a similar physical and physiological comportment. I'm 5'7"and normally weigh in at 155 to 160 or so. Then again, after years of weight training, a great deal of my added weight is muscle mass making it somewhat difficult to calculate an accurate BMI or body mass index. I just weighed myself again. I'm now down to 159 from 182-83 about three weeks ago. I feel as if I've "cracked the code" with weight loss and it's very exciting to see the results.
  Those surgeries I had really wreak havoc on the body. Between the steroids and anesthesia, it's a miracle we even survive! When I was in for the shunt surgery, I had a bad reaction to the morphine and went into a coma. I had to be given some anti-narcotic drug to bring me out of it.
For the tumor resection, I was in surgery 13.5 hours. Throughout the three weeks in the hospital, I was taking drugs through the I.V. and later by the handful every day. I was constipated for a week. I contracted M.R.S.A. and had to be quarantined in a private room. My blood pressure and heart rate went through the roof. I didn't eat anything for the first week because they didn't trust my swallowing reflexes and survived on the I.V. alone. My biochemistry had been sabotaged.
  Getting back to the weight issue, it's good to see that you eventually stabilzed without having to suffer through the exercise. Your blood pressure looks good too. Another good sign! Mine is under control too - thankfully.

  And to Viki.......You're very much welcome!!

Paul

[Denise]

You sound really great Paul, I am very happy to hear you are well.

Denise

[Crazycat]

Hi Denise!

     How have you been?

                 Paul