Our guest chat hosts tonight, April 9, 2001, are Speech-Language
Pathologists Mary Pat Henke and Antje Hinrichs.  Both Mary Pat and Antje
are involved with the Institute for Rehabilitation of Laryngectomees (IRL),
a private foundation developed by SLPs To create, develop, encourage, promote,
and distribute educational resources that enhance the opportunity for Laryngectomees
to maximize their rehabilitation after treatment. The foundation conducts
training to SLPs and graduate students specifically in the area of speech
rehabilitation of Laryngectomees.  IRL also provides learning experiences and
opportunities to Laryngectomees and their families designed to improve speech
rehabilitation and to assist with better intergration into family and career.
Our guest hosts will be chatting about speech rehabilitation of Laryngectomees.


<Robin> Meet Antje and Mary Pat, our guest hosts!
<Robin> Hello 1464...we will be chatting about  Speech Rehabilitation of
    Laryngectomees
<Anonymous1464> I am new here in this chat room-what is the topic tonight?
<Robin> Speech Rehabilitation of Laryngectomees with SLPs Mary Pat Henke and
    Antje Hinrichs
<Anonymous1464> hi I am a bilingual slp in  NM
<Antje/Mary Pat> 1464, do you see any laryngectomee patients?
<Anonymous1464> no
<Robin> well, has any one in this chat room had experience with Laryngectomees,
    whether in observation or in therapy?
<Anonymous3131> I had taken a class, but I didn't have a patient in laryngectomy.
<Antje/Mary Pat> 3131, what facility do you work in, or are you a student?
<Anonymous3131> yes, I am Shinfan. I am from Taiwan and speak Mandarin, Taiwanese,
    and English.
<Adrienne> wow Shinfan!
<Antje/Mary Pat> 9140, do you have any laryngecotmee experience or interest?
<Anonymous3131> I am at WIU. I speak English with a slight accent.
<Antje/Mary Pat> We are getting quite international tonight.
<Adrienne> I am impressed
<Anonymous3131> Thanks Adrienne. Where are you at?
<Adrienne> Florida State U
<Robin> Mary Pat and Antje are very experienced with laryngectomee rehabilitation,
    so please feel free to ask them questions
<Adrienne> How did the Institute for Rehabilitation of Laryngectomees (IRL)
    get started?
<Antje/Mary Pat> The institute originally was founded in Cologne, Germany
    11 years ago. In 1998 some Speech Paths came to visit the IRL in Germany to
    discuss the idea of developing an IRL -USA.
<Lynne> Hi, I am an audiology student and a member of NSSLHA
<Robin> welcome Lynne!
<Antje/Mary Pat> The IRL-USA was established last November. Our headquarters
    are in Chicago but we travel a lot.
<Adrienne> there are national chapters?
<Antje/Mary Pat> The IRL recognized the need for further education of SLPs
    in laryngectomee rehab.
<Alan> What is the biggest obstacle facing laryngectomee patients?
<Antje/Mary Pat> Finding the right voice method for themselves, Alan. Also
    get professional support from SLPs.
<Antje/Mary Pat> Adrienne: There are not national chapters yet.
<shinfan> Do you treat swallowing problems for the laryngectomee patient?
    Hope this is not a stupid question.
<Antje/Mary Pat> Swallowing can be a problem when the CP segment is constricted,
    or the TEP leaks, or a fistula is present after surgery, Shinfan
<shinfan> I took voice disorders last semester, and we covered laryngectomy.
    This semester, I am taking swallowing disorders, and I saw that in my book.
<shinfan> what is CP segment?
<Antje/Mary Pat> First, if there is a fistula after surgery, there can be
    risks of aspiration
<Adrienne> can someone remind me what fistula is?
<Antje/Mary Pat> Shinfan, the CP segment is the cricopharyngeal segment
    at the base of the pharynx
<shinfan> I have to review my anatomy. We talked about the PE segment a
    lot in our class. Thanks.
<Antje/Mary Pat> A fistula is a whole.  A whole in the neck, or a whole
    between the trachea and the esophagous.  It can develop when the surgery is
    very extensive. Diabetics also do not heal well, and may develop a fistula
<Antje/Mary Pat> PE segment and the CP segment - same terminology Shinfan
<Adrienne> thanks!
<shinfan> I got it. Thank you.
<shinfan> There are so many terms to mean the same thing, and it gets confusing.
<Robin> how often do these swallowing problems occur?
<shinfan> My teacher mentioned that you do not do much swallowing diagnosis
    for the laryngectomized patient. I am wondering about why.
<Antje/Mary Pat> Swallowing problems also appear when there is a TEP leaking.
    TEP is a tracheo esophageal puncture, like prosthetic vocal cords.
<Adrienne> prosthetic vc???
<shinfan> Thanks for clarifying the terms, it really refreshes my memory:)
<Antje/Mary Pat> OK,shinfan, Do you know about the anatomy after the surgery
    is done?
<shinfan> kind of. The surgeon pulls something to attach the ...vaguely
    remember.
<Antje/Mary Pat> When the larynx is removed they have to separate the esophagus
    and the trachea because the larynx normally is the protector of the trachea
    when you swallow.
<Antje/Mary Pat> What they do is, they create a stoma (hole in the neck)
    where the patient breathes through.
<Antje/Mary Pat> The airway and the esophagus are no longer connected. Therefore
    it's almost impossible for food to enter the airway.
<Robin> are most of these patients seen before surgery by an SLP?  I remember
    seeing a pt. before surgery who really had no idea about the anatomical
    and physiological changes that were going to occur
<Adrienne> that would be a shocker
<Adrienne> after surgery
<Antje/Mary Pat> Unfortunately, Robin, it is not common practice for ENTs
    to refer a patient for pre-operative laryng. counseling.  The IRL hopes to change
    that by educating ENTS and SLPs to obtain the pre-op counseling
<Robin> a very important task....I couldn't believe that this patient was
    not educated by his physician
<Antje/Mary Pat> Unfortunately, there are still some patients who do not
    realize or fully understand they will have NO voice after surgery other
    than with an AL device, esophageal speech or a TEP
<Robin> Will the doctors be receptive to the IRL's education goals?
<Antje/Mary Pat> Robin, we hope the ENTs will be very receptive to the goal
    of the IRL to help educate physicians and all allied professionals how to
    provide the laryngectomee with holistic care.
<Adrienne> How does the IRL communicate with slps?
<Adrienne> do you hold conferences, workshops..?
<Antje/Mary Pat> We attend a lot of conventions like the IAL or ASHA. We
    also work with lost cord clubs, hospitals and universities.
<Antje/Mary Pat> Adrienne, that is our future goal. We just started the Institute.
<Adrienne> can it count for CEUs?
<Antje/Mary Pat> Adrienne, we are hoping to be able to offer CEUs to SLPs
    attending Voice Institutes of the IRL
<Robin> that would be excellent!
<Robin> Antje and Mary Pat, please tell us about  what the communication
    options are for the patient following surgery
<Antje/Mary Pat> Robin, esophageal speech means you produce a sound like
    producing a burb and talking at the same time.
<Robin> how many patients are successful with that?  It isn't so easy to do!
<Antje/Mary Pat> TEP means that there is a prothesis through the trachea
    into the esophagus. The TEP redirects air up to the oral cavity.
<Antje/Mary Pat> AL means artificial larynx or electro larynx. A machine
    that produces a sound. You put it on the neck and the vibrations form
    the sound that goes in the mouth. Your articulators form the speech.
<Adrienne> what does passy muir clasify as? TEP?
<Antje/Mary Pat> Adrienne, the Passy-Muir is a "one way speaking valve',
    not a TEP. 
<Adrienne> ok
<Lynne> This has been very interesting.  Thanks for letting me 'lurk'.
<Adrienne> what kind of speech does Christopher Reeves use?
<Antje/Mary Pat> Adrienne.  Great question! C. Reeves seems to use the Passy-Muir
    speaking valve.  He has a permanent tracheotomy tube to breathe through
    due to his respiratory system being damaged from his accident
<Adrienne> somehow his diphragm is totally fine
<Antje/Mary Pat> Adrienne, C. Reeves still has his larynx.   The neurological
    damage he suffered impaired his involuntary respiratory system
<Adrienne> gotcha
<Alan> As far as you can tell, how receptive are physicians and other professionals
    to the philosophies of the IRL?
<Adrienne> so have you received a lot of cooperation from drs and other
    professionals?
<Antje/Mary Pat> Adrienne, yes we have. Especially SLPs are very interested
    in the IRL as well as ENTs
<Robin> hello Oskar, we are chatting about Speech Rehabilitation of Laryngectomees
    with SLPs Mary Pat Henke and Antje Hinrichs
<Oskar> Hello everyone
<Erika> hello!
<Adrienne> Oskar, have you had any experiences with laryngectomy pts?
<Alan> Hello!
<Oskar> No I have not but really want to work with them
<Adrienne> are you currently a student?
<Oskar> I am a Grad. student at Texas A&M-Kingsville in Texas
<Robin> well, the Institute for Rehabilitation of Laryngectomees (IRL),
    can give you a lot of great information
<Erika> I'm sorry, I've missed part of this...can you tell me what IRL stands
    for?
<Robin> the Institute for Rehabilitation of Laryngectomees (IRL) (847-808-2051)
<Erika> I am at Oklahoma State U
<Adrienne> that is a Chicago number Robin?
<Robin> yes it is Adrienne
<Antje/Mary Pat> I just came back from a Texas laryngectomee convention.
    The response to the IRL was great. The IRL has 3 very well known SLPs
    on the board of directors, Dr.Ed Stone from Vanderbilt University,
    Paula Sullivan from Wisconsin University and Jane McDonald
    from Hearing and Speech Center in Oregon.
<Robin> Oskar, The foundation conducts training for SLPs and SLP students
    specifically in the area of speech rehabilitation of Laryngectomees
<Oskar> That is great
<Ariela> I was at the convention and thought that it was amazing!
Oskar> I am a member of the second voice club in CC TX and some members
   were going to the convention
<Oskar> I did not get to attend
<Ariela> Did you attend in previous years?
<Oskar> I want to get some experience at MD Anderson Cancer Center in Houston,
    TX. Has anyone heard any stories about MD Anderson in Houston?   
<Oskar> I have not attended the convention before
<Antje/Mary Pat> Oskar, yes, the MD Anderson Cancer Center has a great head
    and neck cancer program.
<Oskar> Is it very difficult to get a field placement there?
<Antje/Mary Pat> Oskar, we don't know how hard it is to get experience at
    MDA, but you could contact Dr.Jan Lewin, SLP at 713-792-6565 or
    Julie Bishop-Leone at the same number.
<Oskar> Thank you so much
<Oskar> that is very very helpful
<shinfan> Does anyone know anything about St. John's hospital in Springfield?
    Could I get some experience in laryngectomy there?
<Antje/Mary Pat> Shinfan, I have NO clue! Sorry!
<Robin> Antje and Mary Pat, tell us about the electrolarynx option for laryngectomee
    patients
<Antje/Mary Pat> The Number One unit preferred by laryngectomees is the
    Servox. There are other ALs on the market, such as NuVois, Cooper Rand,
    TrueTone, Dendrick etc
<Antje/Mary Pat> But what you always should do is to find out what the patient
    likes most.
<Antje/Mary Pat> Its ideal to have models (demos) of each type
    of AL device in your clinic.  Patients can try the models and decide which
    one they prefer. This helps them make an informed decision.
<shinfan> Thank you so much Antje/Mary Pat.
<Robin> I had one patient who was very quiet before surgery and became quite
    chatty after using his electrolarynx
<Adrienne> well, it's been almost an hour... any final questions for our
    knowledgeable hosts?
<shinfan> That's was a great session. Thanks you all.
<Alan> This hour went real fast.
<Adrienne> yes!
<Oskar> Thank you so much for the info
<shinfan> good night everyone
<Erika> I learned alot!
<Ariela> good night
<Antje/Mary Pat> Everyone, the IAL can be reached by contacting Jack Henslee,
    IAL Exec. Director, at 866-IAL-FORU
<Adrienne> IRL goals sound fabulous!
<Antje/Mary Pat> the IAL phone # again is 866-425-3678 or at their website,
    wwwlarynxlink.com.  A $3 subscription charge
<Antje/Mary Pat> THANK YOU! It was a pleasure and we can't believe that
    the hour is already over. Hope to chat with you again soon!  :-)))
<Robin> thank you very much Antje & Mary Pat
<Antje/Mary Pat> The IRL phone number is 847-808-2051. 
<Adrienne> thanks
for coming on, I know it can be hard to keep up with lots of
    questions at once, you guys were great!
<Antje/Mary Pat> Robin, thank you for providing us with this opportunity!
<Robin> thank you...lets do this again with your board members ! 
<Antje/Mary Pat> GOOD night everybody!