HeadLines

Kirklin Clinic Head & Neck Cancer Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

October 2005

 

Preparations for a Secure Hands Free Seal

By Richard Crum

I am not a speech pathologist or a doctor, just a fellow laryngectomee. My surgery was in July of 1988 and, in 1992, I went to work as a laryngectomee consultant for InHealth Technologies®. During that time, I have talked with many people about their problems using a hands free system for speech. I have used the hands free valve from InHealth since my surgery and have put on the housing to hold my hands free valve over 5,500 times. Since 1999 I have used the TruSeal™ housing which I put on in the morning and take off before going to bed. I very rarely break a seal and I work every day.

While I still think that back pressure is a major cause for the seal to fail, I have started to realize that improper skin prep and the method used to attach the housing is also a problem. I would like to review how I prepare my skin and how I attach the housing.

The first thing that I do is to make sure the prosthesis is clean and free of any mucus build up over the night. I am currently wearing a 10mm Advantage™ Prosthesis from InHealth. I clean it with the brush provided and then flush it at least 6 times with a flushing pipette.

After I shave I use the wet soapy wash cloth and thoroughly clean the area around my stoma. I then dry my skin with a fresh dry towel. Using a large alcohol pad, I thoroughly wipe the area around the stoma. It is very important to remove the natural oil that all of us have on our skin. I dry the area again with a dry cloth.

I apply a coat of ShieldSkin® skin prep on the skin around my stoma. I personally prefer ShieldSkin®; however Skin Prep™ will work as well. I dry the area where ShieldSkin is applied using my hair dryer. It is very important that this product is thoroughly dry. The ShieldSkin acts as a plastic wrap for the skin. It does two things. First it fills in the valleys of the skin to make the skin very smooth. It also protects the skin from the adhesive on the housing. After the ShieldSkin is dry, I apply a thin layer of Silicone Adhesive. I usually put on one brush full around one side of my stoma and then another brush full around the other side of my stoma. I then use my hair dryer again to dry the Silicone Adhesive. After it is thoroughly dry, I apply a TruSeal housing.

With my left hand I stretch the skin so it is as smooth as possible. Holding the TruSeal by the center ring, I carefully apply the TruSeal with my right hand; then, very carefully smooth the TruSeal. After that, I am ready to go to work. This works just as well if you are using the Tracheostoma Valve housing and an adhesive discs. When I was using this system I used the heavy duty tape discs.

I cannot stress enough the importance of proper skin preparation when using a hands free system. It is very important to thoroughly dry between applying the Shield Skin or Skin Prep, the silicone adhesive, and applying the housing. I choose to do it with my hair dryer to cut down on the time it takes. If you do not use a hair dryer, wait at least 5 minutes between each step. Another reason I like to use a hair dryer is to avoid coughing and getting phlegm on my skin which would cause me to start over or not keep a seal.

I never use any type of adhesive remover. These products tend to do their job very well but seem to have a residual effect. I have found that using this type of product makes it difficult to keep a seal because the adhesive remover will work to break down the adhesive. I have found also that alcohol and a wet washrag will get most of the adhesive off of my skin.

While it is very important to apply the housing properly, you will continue to have problems keeping a seal if you have a back pressure problem. Back pressure is created when you take air from your lungs and direct it to the prosthesis. The prosthesis is a very small tube that lets air pass from your trachea (air passage) into your esophagus (food passage). The prosthesis can only accept a small amount of air. The remainder of the air in your stoma will push from the inside against the housing. If this pressure is too great, it will force the housing to loosen and finally break. This will allow air to leak out of the housing and not go through your prosthesis.

To correct this problem it is important to understand what is going on inside your stoma. I have described it as getting inside your stoma. When you start using a hands free device you need to be aware of how much pressure is inside your stoma. When you feel like you have too much pressure, you need to back off and lower your volume. When you learned to ride a bike you would fall off over and over and then one day you would learn to keep you balance. This is the same process that you will need to use when you start using a hands free device. You probably will not be able to use it right the first time you use it. You will need to practice until you get the feel of it.

Using a hands free system is a two step process. If the skin is not prepared properly you will not be able to keep a seal and if you have too much back pressure you will not be able to keep a seal. I have been doing this for a long time and have done a lot of trial and error. The system that I have just described works well for me. I hope that this will help if you are learning how to use a hands free system.

 

Richard Crum, Consultant for InHealth Technologies, September 14, 2005

 

This is the follow up to Dutch’s article about swallowing problems with details of what had to be done after his dilations.  Even after putting that first article in the WW list, we had more downloads in the following weeks from the HeadLines Index site http://www.webwhispers.org/pages/Headlines/HLIndex.htm than we have ever had for any other issue of HeadLines. So, as Dutch says, Part Deux.

 

“Oh, My God!!  I Can’t Swallow! (Part Deux)”
By David L. “Dutch” Helms

     “Part One” of this saga was published in the August 2005 HeadLines and concluded with my fourth esophageal dilation over three months and its aftermath … at that time my esophagus was again “open”, I could swallow almost normally, and I still had not recovered my “TEP/prosthesis voice” due to the effects the dilations had had on my TE segment.

     After doing a fifth dilation and evaluation on 11 August, my medical team requested a follow-on meeting with me on 12 August.  At that meeting, they went through the case history and noted their strong conviction that while the stricture was of some concern, the real problem, they felt, was the ongoing Barrett's Esophagus and the tissue "changes" they were observing.  Apparently, after years of taking anti-GERD medications (Aciphex, Nexium, Prilosec, etc.), the condition had worsened dramatically.  To a person they recommended priority surgical intervention and cautioned me NOT to wait until after IAL 2005 and the follow-on WW Cruise.  To me, it was just common sense to concur with their recommendations. 

     I immediately notified all the WebWhispers officers of the situation and its ramifications so that plans could be made to allow the WebWhispers web site, MailLists, and annual Reception and Dinner to seamlessly function in my absence.  Then, Saturday 20 August, I went in for some pre-op photodynamic red laser light therapy (PDT) preparation and counseling and on the evening of Sunday 21 August, I checked into the hospital, so they could effectively monitor my immediate pre-op intake.  I was operated on in the early AM of Monday 22 August, primarily to address the GERD/Barrett's Esophagus issues.  As I recall, I was rolled down to surgery around 05:30 on the 22nd and found myself “alive, conscious, and functional” at around 11:30 AM – back in my room and feeling relatively fine.  They told me that they had repaired a small hiatal hernia, did a laparoscopic fundoplication surgery, treated two small tissue areas in the lower esophagus with low dose photodynamic laser light therapy and also redilated the upper esophageal stricture.  All the procedures were deemed successful. 

     For those not familiar with a “fundoplication” procedure, suffice it to say that it is an anti-GERD measure.  During the fundoplication procedure, the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured (sewn) around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called “placation”.) This procedure increases the pressure at the lower end of the esophagus and thereby reduces acid reflux.  A good explanation of the entire procedure can be found online on WebMD:  http://my.webmd.com/hw/heartburn/hw95701.asp .   For those not familiar with PDT, Photodynamic Laser Therapy, here is how it works.  Patients are given an injection of a photosensitizing drug called porfimer sodium (Photofrin).  Cells in the body absorb this drug.  Normal cells get rid of it, but the drug tends to collect in premalignant and malignant cells.  Two days after the injection of Photofrin, physicians insert an endoscope into the sedated patient’s esophagus. An endoscope is a thin, flexible tube with a miniature camera on its tip.  Physicians deliver a specific wavelength of red laser light (not heat) through the endoscope to the targeted cells. The laser light destroys the Photofrin-containing cells. Normal esophageal cells grow back in their place.

     The “in-hospital” recovery period was short and routine.  I had awakened to discover a flexible tube inserted into my nose and routed down into the stomach … this was to hold the passage open during the fundoplication procedure and for a short time post-op.  This tube was removed shortly after I returned to my room and with an absolute minimum of discomfort.  The most significant “recovery pain” I experienced came from the five small laparoscopic incisions in my abdomen.  I joked that it felt like five small 22 caliber bullets had been shot into my gut!!  They did, however, have me up and walking around later that first night and moreso each day afterwards.  It was really not “pain” but was more accurately moderate then slight “discomfort”. 

     Post-op I was initially on some IV’s and given only small amounts of water to drink.  By the end of Day Three, the IV’s had been pulled and I was on a liquid diet of Ensure and a couple of cans of “smuggled SlimFast” … all of which went down fairly easily and stayed down well.  I was kept for a few days of “observation” and then was discharged in the early AM of Thursday 25 August … at which time I returned home with a minor “sore throat” and a tender abdomen, but generally just fine.  I was provided with the services of a Home Health Nurse who checked in on me every day for the following week, but all was routine and no notable problems arose.

     I maintained a liquid-only diet for about 10 days post-op … water, mineral water, Ensure, SlimFast, and other such dietary supplements.  I was then authorized to move up to “soft foods” … such as thick soups, mashed potatoes, “creamed” items, soggy cereals, puddings, etc.  On 12 September my medical folks authorized me to move up again to “chewy foods”, such as casseroles, well-cooked rice and veggies, baked potatoes, tender fish, well-chewed chicken, etc.   I was again cautioned to continue to avoid highly-seasoned and spicy foods (so much for my Taco Bell favorites), as well as tough to chew items such as steaks, fried chicken, pork chops, roasts, etc.  While somewhat “boring”, this transition back into “normal eating habits” was tolerable and made a lot of sense.  I had been warned that I might experience some discomforting side-effects from the fundoplication surgery such as: (1) difficulty passing swallowed food into the stomach because the stomach was wrapped too high on the lower esophagus or was wrapped too tightly, (2) the heartburn comes back, or (3) bloating and discomfort from gas buildup because I would not be able to burp.  In my case, however, none of these post-op problems occurred.

     There was, though, another minor side-effect of the procedures.  As a result of the pre-op injection of the photosensitizing drug called porfimer sodium (Photofrin), required for the photodynamic laser procedure, I was warned that my “system” would be very “light-sensitive” for 4 to 6 weeks after the procedure.  I was cautioned to avoid direct sunlight, and, in general, bright lights, and to wear sunglasses when outdoors, etc.  Not being very “outdoorsy” at this stage of my life, this side-effect was, however, minimally intrusive throughout the recovery period and presented me with no major problems.

     After a follow-up exam on September 20th , my medical team determined that the Barrett’s Esophagus problem now appeared under control but recommended that a three to six month period of treatment with 20 mg daily of Omeprazole or Prilosec be maintained to fully suppress GERD production in that area so as to insure the Barrett's tissues are totally gone and replaced by normal squamous epithelium tissues.

 

    They recommended follow-up endoscopies over the next year or so to confirm these findings.  They also again cautioned me to note that the radiation scar tissue induced proximal esophageal stricture (between my TEP site and the base of my tongue) might again try to close up in the future … so future dilatations might well be required.  Keeping the esophagus permanently open via the insertion of a “stent” had to be ruled out because of the stricture’s location – too close to the base of the tongue – if placed there it would significantly interfere with swallowing.  As usual after dilations, my TEP/prosthesis “voice” is still temporarily absent, but should return once the tissues in the TE segment settle back down … at least that is the current hope.

     At the end of the follow-up exam, I was told I could now slowly ease myself back into my “normal” eating habits.   Using the good judgment often exhibited by “Fighter Pilots”, upon returning home I promptly called Pizza Hut and ordered a medium hand-tossed pizza with extra pepperoni, Italian sausage, cheese and sauce.  It was DELICIOUS, went down just fine (though I saved some slices for later), and stayed down as well.  This culinary delight was consumed without problems. This will be followed later by visits to Taco Bell, and the infamous Texas WhatABurger!!  

     So, all in all, the procedures were successful and well tolerated.  The “pain” was absolutely minimal (after the first days … but DRUGS helped a lot), and the “at home” recovery period went just fine.  The major downside to this medical adventure was that I had to miss IAL 2005 in Boston, the annual WebWhispers Reception and Banquet there, and the follow-on WebWhispers Cruise to New England and Canada.  However, as we all know, in life “crap happens” … and compromises must be made on occasion.  As much as I missed all those festivities and missed meeting old and new friends and acquaintances, I feel I made the right decision to proceed with these medical procedures instead.  

    Thanks to all for the notes and Emails of support and good wishes during this period … they were all deeply appreciated.   May I wish continued good health to all and God bless … and I look forward to seeing many of you again next year on the WebWhispers Alaskan Cruise or at IAL 2006!

NOTICES

For your information, the IAL was scheduled for their 2006 meeting in Biloxi, MS and because of Katrina and the ensuing damage, they are looking for a new site.  At this time, no announcement has been made as to location or timing.

WebWhispers was to hold a cruise out of New Orleans to follow the 2006 IAL and that also has been cancelled.  Luckily, WW had scheduled two cruises in 2006 and a cruisetour is scheduled with the pre-cruise tour scheduled from Fairbanks, AK June 1st  2006 traveling down through Denali to Anchorage where the ship leaves on June 5th.  There are still opening for both the cruise and tour at this time but there are not many tours left. Please check the WebWhispers web site at: http://www.webwhispers.org/pages/cruise/WWCruise06_1.htm

Kirklin Clinic Head & Neck Support Group Meetings

No meetings until further notice

In the interim, we suggest that you join WebWhispers if you have an email address. WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines. 

We are also invited to attend an All Cancers group with a luncheon every month, third Tuesday, 11-1. 

Call or email Pat Sanders if interested in any of the above.  (See contact info below)

 

HeadLines Newsletter:

B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com

                                                                                                                                                           

Kirklin Clinic Otolaryngology :        205-801-8456 FAX

Glenn E. Peters, M.D.       Glenn.Peters@ccc.uab.edu

William Carroll, M.D.           william.carroll@ccc.uab.edu

Nancy Lewis McColloch, Speech Pathologist ;  205-801-8460;  nlewis@uabmc.edu

 

For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org

American Cancer Society in Birmingham:   nprice@cancer.org