So, I just saw the show, and leave it to Bush to cut our one moment for awareness short.   :-/   I did see Jennifer's story in the hawaii article and thought it was a very uplifting story, and that more of it should have been shown.  At least more of the story is on the website.

Overall, I appreciated the little they showed.  However, I have mixed feelings because I thought Jennifer's end reaction, that she was cured, is misleading.  I am not trying to be a downer...believe me, I think surgery as treatment has done wonders for me.  But I still get the occasional TIA, which doesn't make a stroke any less possible.  

Given the presumed rarity of this disease, surgery as treatment is widely accepted but not a cure and I think the show should have reflected that.  If there is a cure, there is a presumption of no need for research.  

Of course the show would have done best by showing Stanford's own Dr. McDreamy -- the ratings would have been sky high, I say.  ;)

Anyway, just my 2 cents...other thoughts?

Trina

I agree.  I was hoping that more would have been shown - especially with Dr. Steinberg.  It was a good chance reach a lot of people and I don't think they really did that with this piece.  Don't get me wrong.  I think any exposure helps, but I also felt her statement about a cure is extremely misleading (I was talking back to the TV when she said it - what??? There's not a cure!!!)  I think it's really important for people to be informed about their own health and having that statement out there as if it is fact is disturbing to me.

I watch it in an hour... Is it worth watching?  

Hi ya Apu,

Well, I for one sure was tickled to see the main man, Dr. Steinberg. No better person in the world to be first to air information about moyamoya on a primetime major network!! For that reason alone it was outstanding, IMO.

If just one young girl or boy saw the show and says, "hey, my hand gets numb and maybe it shouldn’t be fluffed off just because I’m young. (Like in Mandy’s case) Well, we couldn’t ask for more really. It’s what we hoped and prayed for and what it’s all about. I’m so tickled I can’t stand it. It’s getting out there slowly but surely.

I did however get a few calls asking if Mandy was cured and I had to say that wasn’t the case, but it’s a start. They’re talking about moyamoya on primetime TV, so I’m thrilled.

Mar

Hey I agree with Mar.
We haven't had the show down under yet and don't really know if we will for that matter, but isn't it a damn good start to get the word out there? What more can you actually ask for, when 5 years ago no-one actually knew what it was. At least now a few more people know and that's where the chain reaction comes in - more and more people will find out until there is more knowledge in the medical field!!


I also agree to disagree on this issue: I don't look at myself as "cured" but I would rather go through life not having to dwell on the fact that this might eventually kill me. Hey I also might get hit by a bus tomorrow but that's life. You can't go through life with a downer attitude - you just have to stay aware of your symptoms and be proactive that you have this rare disease and look out for things that aren't right - only you will know that. I refuse to roll over and die because I have this rare disease. I live everyday to the fullest and I get so much out of my life: I am fitter than I ever have been (even thinking of becoming a personal trainer), had a baby since, go motorcycling with my husband and don't think "Oh I shouldn't be wearing a helmet, it may cause me brain damage!!" I also couldn't think of anything worse than being wrapped in cottonwool for the next 40 or so years. You don't know what is going to happen from one day to the next so why waste your time worrying about MM? What's to say that it is MM that will ultimately be your downfall? Wouldn't you be really p'd off if you spent the next 20 years worrying about MM killing you and then a plane drops on your house and all that worrying and living cautiously will have been for nothing!! Nothing annoys me more than the lacadasical attitude that "I can't do that because I have this or that" Just go out and LIVE!!!
It's a beautiful world - you just have to NOTICE IT.
(Oh and my shoulders are braced for the fallout!!)

Living my life EXACTLY how I want to do it
Moira

Moira:

I don't think I'm disagreeing with you or Mar.  I think we're in agreement, we're just saying things differently.  

I absolutely agree with Mar that some awareness is better than nothing.  I was thrilled to see Dr. Steinberg on TV.  And thrilled that right after this show, there were about 25 guests on this website.  So obviously it helped a lot!

In addition, I don't live my life, nor do I feel anyone should live their life thinking they are going to die tomorrow, or worrying about a stroke.  I don't think I said or indicated as such.  Believe me, after what I've been through, it's the last thing that concerns me these days.  

I'm simply saying that the segment was a bit misleading regarding cures.  There is no cure for this disease (YET!).  I would hate for anyone to have false hope.  I've battled even my family since my surgeries because they don't know why I get so tired still, why I get the occasional TIA, why I have headaches once in awhile.  They thought I was 'cured'.  Some may not have those symptoms, as we know all of us with moyamoya are different, but I think this is still valid for many patients, even post-surgery.  

That being said, I am so happy for you that you are living your life exactly how you want to.  We should all be so fortunate (once I quit this job and get that business going, I'll be there hopefully!  ;) ).  

Hugs,
Trina

(Mar, glad to see you posting after so long!  Was wondering what happened to ya!  Apu)

I have to agree with Trina.  Happy that it's on a primetime national network show, but a bit disappointed that it was a bit misleading.  I had hoped they would have gone a little bit more into the statistics as well as not left it on such a misleading end note.  But that said, I am very happy it's out there!

-Shari

Oh - a post note!  Oddly enough, with the first story about primordial dwarfs, the Dr. Charles Scott they showed is someone who I used to see at Dupont Hospital in Delaware...he's such a wonderful and brilliant doctor (he's a geneticist).  When I was first diagnosed with MM I actually emailed him to see what he knew about MM and if it was related to another condition I had.  He said it wasn't but amazingly he remembered both me and my brother and we hadn't even seen or talked to him in about 15 years!

Hello All -- New member here.  I do not have the symptoms of Moyamoya Syndrome but I believe my Mother does.     One of my good friends saw the Prime Time episode last night over Moyamoya and called me to tell me about it.  I missed the program, but started researching it as soon as I got to work this morning.  And thats how I got here.  

 Mom recently has been having a numbness in her right hand, and sometimes it even crawls up her arm and her entire arm is numb.  Then a really bad headache follows.  Also when she is having these episodes she cant communicate and its very hard for her to talk.  She has found its best to just go to bed when this happens.  Also, not during her episodes, but almost all the time, one of her eyes is very bloodshot.  

    The first time this happened we took her to the hospital and she stayed there for a week.  Test after test was ran and nothing was ever found to be "wrong" with her.  

     So anyways I guess the reason for my posting is that the very small clip on PrimeTime has done some good, because I know she will be talking to her Doctor about this Syndrome very soon!  

     Also I would like some feedback on her eyes being bloodshot -- is this something that happens with this syndrome as well, or should we not be worried about it?   Any help is so appreciated!!  

Thanks

Matt  

Please don't misunderstand.  I am in no way making a statement about how anyone should live thier life - with or without an MM dx.  
My problem is strictly in that a statement was made that is false and was left out there for the general public as fact.  Surgery was wonderful for me.  It saved my life.  Dr. Steinberg is an incredible doctor and an amazing man to whom I will be forever indebted, but what he did for me was treat my disease not cure me and that is an important distinction.
I am thrilled to have awareness of MM be raised in any way.  However, having said that, because so little is known by doctors and the general public, I think it is doubly important that any information that is disseminated be accurate and factual.  I was disappointed that this was not the case in the Primetime piece.
I am not advocating living life in a bubble - only with eyes wide open - educated and fully aware.

 First of all Matt that's fantastic that this has lead you to research this disease.This is a wonderful group here and will certainly help you  in this journey.That's exactly what getting the word out is all about. That being said I have to agree with some you who were bothered by the FALSE statement that there is a cure.I Cringed when she said she was CURED! IN fact she said it twice! But that's just my 2 cents and it comes from the fustration In trying to explain to people for the past 5 yrs especially those who are with Kathleen everyday at school, that she isn't cured. She has been successfully treated but the moyamoya is still there.Kathleen hasn't had any strokes since surgery but she does have good days and not so good days.She gets exhausted very easily,and it affects her work at school sometimes.She still needs to take precautions that they need to be aware, and she will takes asprin for the rest of her life.If it was cured she wouldn't need to do all this and we wouldn't need to watch for any signs of strokes TIA's or seizures.We try not to dwell on the fact that she isn't cured BUT that IS the fact and I hope it doesn't cause confusion for others too.Don't these shows check to be sure what they are airing when it comes to medial issues that they are only representing the FACTS? I'm rather surprised.
Mary Grace

Welcome Matt To The MM Family!

Sorry it under these conditions.
There is a wealth of information here and great people to help.
Start at(Diagnostic Procedures and Questions to ask the surgeon,page 1)You will find it at the top of Moyamoya Related Information and Support.

Be sure that the Doctor KNOWS what moyamoya Is!!!

Hope that helps

Kevin

I, too, am thrilled that this aired last night and on national television.  However, I was a little miffed that they had to cut the show down to a half an hour to accomodate the president.  :)   After watching the show, I felt like they left out so much!  But that's what happens when you get down to editing these shows for length purposes.  

As far as the incorrect statement, well...she said it and it's out there.  Now it's up to us and the doctors to help set the facts straight.  I can't tell you how many articles I've read about the disease where false statements were made.  

I'm going to see if I can get a tape or copy of the full episode.  I'm almost positive this was originally an hour program and they would have to have the full hour of it still.  I'll let you all know what I come up with.  

Michelle

PS....Matt - I'm glad that you found us and I hope that you are able to get some answers.  Welcome to our family and please don't hesitate to ask any questions.  Unfortunately, I've never heard of people having bloodshot eyes from this disease, but then I'm not a doctor and it certainly wouldn't be unheard of.  Each person is different in how they experience symptoms with moyamoya.  Good luck to you and your mom.  

I know exactly what you guys are saying. It would have been great to have had alot more said, but I’d just like to reiterate. One of the major problems we face with MMD is the lack of knowledge in the medical community. We see all too often so many misdiagnoses. We constantly hear DOCTORS stating all kinds of incorrect statements and opinions when patients come to them with MM symptoms. The statement that MM can be cured wasn’t as much of a major concern with me because we’re so use to false information out there, but getting MMD mentioned to perhaps millions was the most important and thrilling part I focused on. It's a start. The most important thing IMO was, it may open eyes and minds to MMD. Physicians or concerned people involved who encounter atypical stroke presentations may now look further into MM disease and incorporate MMD in the differential diagnosis, and in that process they will find that MM cannot be cured, but it IS a successfully treated disease in most cases. Good example, Matt’s post. There's the joy I found in the program.

Hi Matt, welcome to our MM family. I hope and pray your mom gets some answers. If it is MMD, please tell your mom not to hesitate getting to a doctor who’s experienced with MM ASAP. Delay could allow unnecessary progression of this disease and she’s at risk for a stroke. If you or your mom has any questions, please don’t hesitate to ask. You'll be in my thoughts and prayers.

Mar

Ditto Trina and Shari for me.  Mar, I, too, am glad that anything is shown about MM to gain awareness for this disease.  Nevertheless, I am sorry that the "cured" misinformation was included.  I had a number of calls last night and this morning from friends and relatives asking if Kate was completely cured now.  After experiencing two TIA's since surgery, we cannot let go of our diligence in taking care of ourselves and watching out for this disease.  

Kate certainly is living her life to the fullest a day at a time, but she knows if she forgets to stay hydrated, gets stressed or exhausted, for example, she will pay a price.  Doesn't keep her from having fun, though.

The other major stations ran programs delayed but complete last night.  Why did ABC cut Primetime short by nearly 30 minutes, rather than delaying the news?  This is really too bad.

Nevertheless, I thought it was great that 39% of the people that voted on what they thought was wrong with Jennifer said "stroke."  At least this hopefully means that more people are becoming aware, do you think?

Cass and Kate in Dallas

Hi Matt and welcome to the family!

I am very concerned about your mother and the symptoms you are describing.

I am not a doctor however I do recognize the signs of a stroke whether ischemic or otherwise and your mother is experienceing stroke symptoms with the arm numbness and inability to communicate.

Bloodshot eyes can be any number of things but they can also be associated with a stroke.

PLEASE DON'T DISMISS OR IGNORE YOUR MOTHER'S STROKE WARNINGS EVEN IF THEY GO AWAY.

Any signs of stroke require immediate medical attention. Please tell me you are seeking immediate medical attention for your mother.

Hugs,

Lore

Yes, it's good news to hear that others will find out about the disease and maybe come to conclusion about what's going on.  

As for me, I'm still far from cured and this time I hope my surgeon listens when I need to talk.  Otherwise, I'm calling Stanford and going down there.  

Oh no we are not ignoring these signs.  She has talked to her doctor about these very often and he has referred her to a Nourogolist (sp?).  She will have this appointment very soon, but until the show last night we had never even heard of this.  I am glad that my friend saw it on TV and called me.  Maybe this will help her doctors find out what is going on with her.  

       Thanks everyone for your answers and concern.  Its nice that I have found a place such as this that I can ask questions while we go through this process.  I'll keep in touch!

Matt

Hi Matt,

Glad to hear your mother has an appointment with a Neurologist - very soon.

Keep in mind that you can send your mother's films to Dr. Steinberg at Stanford.  He is considered the leading MoyaMoya specialist in the United States and he will render an opinion at no cost. His information is on the board in several places including the front page via the Stanford Link and under surgeons with MoyaMoya experience.

Being misdiagnosed and/or undiagnosed can be frustrating not to mention the probability of devastating consequences if MoyaMoya is the true culprit and not acknowledged or treated properly and in a timely fashion simply because the disease is progressive and requires surgery to put the patient on a level playing ground.

My brother Cubbie has MoyaMoya and went misdiagnosed for four years. He had two strokes and a dissected upper carotid artery, TIA's and a hemmorrage.  It wasn't until we found this site and Dr. Steinberg that Cubbie received a confirmed diagnosis of MoyaMoya and had two direct bypasses (STA-MCA) at Stanford by Dr. Steinberg in May of 2005.  What a difference! I am still in awe of it all and only wish we had found Dr. Steinberg sooner.

Today, Kevin is doing well given all he has endured. I share this with you mainly because it is so very important to have a doctor who is familiar with MoyaMoya. They know what to look for and can determine the proper treatment in a timely fashion. Kevin may very well have been spared multiple strokes, multiple TIA's etc had he been diagnosed properly early on. Even when Kevin's local doctor, who perfomred an angiogram and had performed over 15,000 angiograms, saw the collateral vessels (puff of smoke) said he had never seen anything like it and had no idea what it was.

My intent is not to scare you with all this information but rather, to spare you and your mother from all that can come from being misdiagnosed or undiagnosed and especially if it is confirmed your mother has MoyaMoya.

Please know that we are here for you and your mother and please ask any questions. This is a great group of people who have been down this road one way or another and are very helpful and knowledgeable.

Please keep us posted on your mother's neurological visit.

Hugs,

Lore  

Matt,

Welcome to our family!  You've received some great advice here, and I too hope you get the answers you need regarding your mom.

Getting back to the original topic posted here . . .  Include me in with those of you with "mixed emotions".  I wish the coverage had been longer and more detailed.  Unfortunately, as Michelle said, you never know what you'll get when dealing with the media.  I remain grateful that ABC expressed interest though, and my gosh, even a minute of prime time coverage is awesome!!!!  I'm with you Mar - if even one person learns from what was shown (or even what wasn't shown, maybe from talking with one of the media people who were involved) we've accomplished something.  I'm pleased with what we could get.

Also important is that we thank Jennifer and Chad.  They were willing to take part in this whole thing "live"as they were heading in to the surgery experience.  That they were selfless enough to participate, while at the same time dealing with their own fears, anticipation, and gamut of emotions coming with the territory, is remarkable.  I think they've given us all a wonderful gift.  Jennifer and Chad - thank you!

Warmly,
Jill
   

I feel the same way I'm glad its out on national T.V. but wish it was in it was fully shown and that she didn't say she was cured. I don't remember did they lead you to believe everyone is just fine afterwords, meaning after the strokes not the surgery? (Or both actually) I was drifting off during the late showing I was up at 4:00 a.m. for work. Thats what I would be upset about.
                                          Nancy

To Jennifer and Chad~ :)

Thank you for opening your lives to the public during a tremedously fearful, stressful time.
I was delighted to see more information about MM in the media.
Am sorry the piece you did was cut short.But, it DID bring awareness and alerts to people like Matt and others. Many of my friends saw it and are now even more attentive to signs and symptoms of mm. That's how people's lives can be changed!

Hope you're doing well. :)

Thank you,
Linda A.

Hello everyone,
 I also had mixed feelings about the show.I wish it hadn't been cut short but it was a great feeling seeing something about it on TV.To think in early 2005,I had never even heard of this disease and now we are seeing it on national tv.I too was shocked when I heard her say that surgery was a cure but at the same time,I can understand.There are so many misconceptions about MM.I agree with Jill.I couldn't imagine letting strangers film us when Paige went through either of her surgeries.There were so many mixed emotions that we felt and the anxiety was terrible.I really admire them for being able to do what they did to help others.Thank you.
About the show,hopefully ABC will decide to reair the full show.

Jennifer(mom to Paige)

Wow!  :D So many of my favorite MM'ers all on the same post. Nice to see you all here...and for such a momentous occasion.

My son came to me the next morning...and said "hey mom....I was watching the medical mystery show on Prime Time...and guess what it turned out to be? Moyamoya!"

I was watching it upstairs, while unbenounced to me....he was watching it in the basement....it was precious!

I too cringed.....when I heard "cured"...as my own family has already forgotten that I "don't" have the energy to do everything that this household demands.

I could use a little more help from my "lotsofkids and husband" as I still get exhausted and have wobbly legs almost daily. Yes, my headaches are greatly reduced....and so too is my dizzyness....but I am far from the oodles of energy that I would like to have.

I am so greatful for having my surgery. It gives me peace of mind that I have reduced my stroke risk, but with having MM, I will always have risk factors that "others" do not carry. I need to listen to my body and care for it with the utmost respect....if I plan on a long future.

I too, don't want to restrict the quality or content of my life in any way...and I plan on living "normally"....but with a hightened awareness not to push myself past my body signals.

AND MATT: I hope your mom will be OK and that you get a proper diagnosis soon...so treatment can begin. Just a thought tho....ask your family doctor if a daily asprin should be included in her routine....if she is at risk of a stroke...then an asprin could be helpful.

Smiles to ya....Diane : )

  I thought it was a bit misleading.  It certainly is a rare condition.  How would anyone guess the diagnosis.  But you have to start somewhere.  And as is the case with anything that is rare and not thoroughly understood it takes time.  Although, I have to give the media credit for giving MM some airtime.  They too probably don't really understand the extent of MM.  You can only understand it if you are close to it.  As time goes by it will be recognized and understood more and more.
 But no one better than Dr. Steinberg to do the interview.

Ron
 

Hello to all.
I am Jennifer's older sister.   As you may recall,  Jennifer is the patient in the ABC Prime Time's segment.  I am also a physician.
I have read all of the postings and your feedbacks, opinions.
Jennifer does not mean to offend anyone regarding her comment about the "Cure" word.    Due to her MMD and several infarcts in her speech areas, she has troubles finding the words.     A slip of tongue?   However, if you had seen her lack of blood flow to her brain before the surgery, you would have seen a death sentence above her head.  So the STA-MCA did save her.   In a way I can understand why she feels like she is "cured".   We all know that the condition is progressive, but please be optimistic and enjoy the extra time given.    

All of us want the information about MMD to reach the public and especially to the health professionals out there.   How many cases of MMD are missed because the symptoms were brief, mild and resolved and the patient ignored it?   How many physicians sent patients home with normal head CT scans and normal neurological exams?    MMD may be a much more common condition and cause of TIA/strokes/unexplained death than reported.   ABC taped  interviews with numerous doctors:  from the primary physicians, neurologist, and neurosurgeon.    We discussed and provided information on MMD, and also promoted this great web site during our interviews.   I was shocked and disappointed when I saw the final condensed segment.   But please believe me, it is all ABC's media tactic to shrink, spin, mislead and mold the topic to their air time that they need.    ABC could have done a better job of providing more information but they didn't.

Lets all bombard ABC with emails and suggest that they give MMD more respect and better time slot!!!  Tell them to redo the story with more medical information and footages with Dr Steinberg!!!     How many users are on this site?  If we all email ABC, our family and friends email ABC, may be we can get them to redo the piece!!!!    
Bye for now.  Tonnia Tran

Hey Tonnia,

Thanks so much for your post!  

I can't speak for anyone else, but I don't THINK that ANYONE is blaming Jennifer.  I agree with Jill that she and her husband were very brave to do the interviews.

I agree with you, it's the media.  I know how it goes -- I did a video during my surgery for the Stanford video and did about 15 minutes of taping and ended up on the video for what I like to call my 1.8 seconds of fame.  :)  

I truly hope Jennifer does not feel any of us are pointing the finger at her.  It's clearly Primetime that we have issue with (and ABC for airing only part of the show).  Someone said that it was probably edited out of context, and I agree that it probably was.  I'm glad MM got some exposure, as something is better than nothing of course.  That's where I have mixed feelings -- it was just a little disappointing (the editing, not the story).  

I think though it always happens with the media.  Celebrities always complain that they are taken out of context but I wouldn't be surprised if they consistently are.  Also, I remember when my brother was interviewed as a medical student (way back when) and they edited him TOTALLY out of context.  

All that being said, most importantly, I hope Jennifer is doing better and please know that my thoughts are with her.  

Hugs,
Trina

Hello Tonnia and thank you for visiting with us fellow MM'ers! I hope you AND your sister will visit here often.

I don't think anyone really blames Jennifer for the "cured" statement....as it was her emotional response to being out of danger with a successful surgery. I felt that great sense of relief when I completed my own surgeries. I was feeling like the luckiest person in the world....for having a happy ending after such a scary diagnosis.

It was just that we MM'ers put so much efforts to educating those around us....that we were hoping the piece wouldn't be so Hollywood hype and more educational.  But, alas the president had a hand in shortening the segment. What luck! I do think your suggestion of writing them is a worthwhile idea. I will send an email and I hope others will follow.

I do wish this thread will not upset nor scare your sister from coming in here......deep down we are very grateful that she allowed herself to be filmed. And moreso.....we have a deep bonding with anyone who shares our disease. Please tell her there are many open arms waiting to welcome her here. She will be a celebrity of sorts!!!!

warmest wishes....Diane

Hi everyone.

When Dr. Steinberg first asked me about doing the piece on Nov. 6, 2006, I automatically said yes.  I did not even ask my husband...I just wanted people to be aware of moyamoya.  Now, after watching ABC Primetime's piece, I have mix feelings...Was it is a good piece?  Was it long enough?  Did it describe moyamoya?  There are so many questions and opinions about the piece...and I am not sure "ONE" piece would address all the questions.

Now, to my "cure" comment...I am very LUCKY.  I said that purely on a selfish level...disregarding others before me who were not so lucky.  The stroke of Sept. 24th was not much of one...I could not "speak" for an hour or so.  The hand numbness--the week before-- went away before my speech problem.  The symptoms were mild...and I have EXCELLENT doctors that cared for me and help diagnosed and treat moyamoya.  It has been a month now...I am on aspirin, 325 mg a day.  When I forget to take the aspirin...I do get intermittent headaches...when I say intermittent, I mean a second or two.  When I get nervous, my speech gets affected and I begin to cry...so now, I try not to talk.  :)

Thank you Tonnia and to everyone on this post.  I am sorry  for my cure comment and seek your understanding.

Jen

Hi Jen,

Please don’t apologize for the comment. I know everyone understands. I think it was like your sis said, it WAS a cure for the future you were facing. I think you were amazing for allowing them to tape you through the most difficult time in your life. God love ya!! THANK YOU SO MUCH!!

I think it’s frustrating to so many here that faced the lack of knowledge in the medical community and wanted more info out there and probably always will. I think it’s like you said though, the first mention of MMD on TV would never address everything that needed to be said. But you got it out there girlfriend, WTG! That’s what’s most important, and I know your piece has helped many already. That’s truly amazing. I’ve talked to several people since your piece aired, where they had stroke like symptoms and had CT scans done and was sent home undiagnosed with continued symptoms, but NOW their doctors are ordering more tests because of that airing. That is in of itself remarkable! We have to thank YOU!! (And your hubby) You did your part to help… now stay healthy and enjoy life. Ya did good! [smiley=thumb.gif]

Mar

Hi Jen!
I think it was amazing that you and your husband put yourselves out there at an incredibly difficult time.  It was a very brave and selfless thing to do.  Thank you for allowing yourself to be filmed so that others could learn about this disease.
Please don't take offense to anyone's comments about you saying that you were cured.  No one is upset with you for saying what was in your heart.  You said what you felt and there is nothing wrong with that.
I think most of the people who commented about it (myself included) were just disappointed in how the ABC team handled the editing of the piece.  It's great that MMD was mentioned on TV at all and awareness was raised.  There is just such a lack of information available and a lot of misinformation out there.  I was hoping that the piece would have been longer and contained more helpful information, but let's face it, ABC is a for-profit station.  They are in it for the ratings and aren't in the business of running educational documentaries.  Maybe we can hope for the Discovery Channel down the road.
Jen, when you say your speech is affected, how is it affected?  Are you unable to speak? Do you stutter? Do you have problems finding the right word?  I hate to hear that you try not to talk.  That breaks my heart.  I have speech problems too and depending on what is going on, there are methods you can use to compensate.  Also depending on what it is and how frequently it is happening, it might be something that you would want to tell Theresa about so she can let Dr. Steinberg know.
My best to you.  Thanks again for being so brave.

-Tracey

Ditto to everything Mar and Tracey said.  Jen, you were speaking from your experience, and it was hardly selfish . . . what you've done was absolutely contrary to that!  It breaks my heart to hear that you try not to talk.  My daughter Tara's confidence took a beating when she had speech difficulties, too.  Her speech therapist said the best therapy was to have gab-fests with her girlfriends.  It took a little while for her to once again feel that confidence, but it DID return.  Hopefully, yours will too.

Please don't feel like you should apologize for what you said.  I greatly admire you for what you've done, and trust that your recovery will continue.

Big hugs from up north,
Jill  

Hi Jen!

I think that your comment on being cured is a feeling that a lot of MM'ers have.  Just for the fact that the prognosis for MM'ers without surgery is not very good at all versus the prognosis for MM'ers with surgery is pretty excellent.  I'm not sure of the exact #'s but they must be pretty impressive because after my brother who's a neuroscientist, did some researching, he said that surgery is the only way to go.  

I felt the same way after my daughters surgery.  It's only post-operative that you begin to realize that there are still issues and symptoms to deal with.  But they are easier to deal with knowing that surgery increases your odds many times over on living a healthy life.

Thank you so much for the courage to get the word out.  You're a hero.

Cheri

Hey Jen,

Ditto what all have said already.  Glad to have you on the board, and hope you are doing better!  

Trina

A BIG WARM WELCOME TO YA JEN!

So glad you popped in on the board. Please don't be overwhelmed by this thread. I really feel most here are so grateful to you for doing the piece and YOU ARE a CELEBRITY here!

This is not like other boards....it is VERY supportive and understanding....and with oodles of insights to help you through pre & post surgery issues.

Pull up a chair and stay a while  ;)  

Diane