DocBabs 1) Are you still having site trouble posting a reply?
2) Though I can't use it, GOOGLE THIS FOLKS: DocBabs has continued success with 3M silk tape, which can be ordered online!
scrap2book How horrible for you! And, yes, we have to be on the alert and be sure our special needs are respected.
Be prepared: even when cordially reminded about my allergy to tape, I have had staff look me at me with bored eyes and coldly state "What kind of tape do you want?" as a way of wiping their hands of responsibility.
Come May, I will try to construct a list of what tapes have been referred to on this thread. Do you have the name of the tape you referred to which isn't paper tape?
So far, I have had no response from CVS Pharmacy re TAPE using the same adhesive as their Hydrocolloid Dressing which has been my only successful adhesive. I will try again.
EVERYONE: Any suggestions how I can get doctors or nurses to write to CVS Pharmacy about the adhesive which has proven non-allergic to me?
1) *** NEWS FLASH everyone: I received a FIRST company response to my inquiries. The rep was super nice when I followed up her invite to chat.
2) *** Here's a link to the company which will not only provide info on their specialized product but contact info for further info. I may try their highly specialized product, which actually involves two specialized products. However, yesterday I also found out about a different kind of product which I will first try before trying Mastisol and its necessary remover Detachol.
http://www.eloquesthealthcare.com/ = super nice and understanding rep
http://www.eloquesthealthcare.com/products/literature.aspx#Mastisol
3) *** Please see my separate reply beginning with the words BARRIER PRODUCTS.
BARRIER PRODUCTS
??? Has anyone tried any of these kind of products? I am going to try the following BARRIER wipes
This BARRIER PRODUCT is not able to take the place of an adhesive but it places a barrier layer which may inhibit a reaction to the tapes we are asked to use but to which many of us have an allergic reaction. Looks as if this product has other related uses which can make a big difference for patients.
>>> I have learned that HIGHLY trained NURSES with degrees specializing in wound care may be more able/willing than doctors to provide some alternative solutions regarding the use of tapes. I for one intend to ask my Primary Care Physician how I might arrange a consultation with such a nurse. Anyone have first hand experience in this regard ????
I too am sensitive to tape and adhesives. And, found out I am allergic to scrub soap - not sure of exact spelling, but Septosol comes to mind. So far no latex allergy or iodine.
The tegaderm they used when I had a port was like having sandpaper and steel wool rubbed over my skin and hurt a lot. Steri strips work better than a full fledged dressing and for my 6 cm incision for lumpectomy, the surgeon used dermaplast - a paint on clear liquid dressing and it was marvelous.
Funny in a way that I should find this while surfing around the site. Next week I have cataract surgery and at appt I brought stickers with all my sllergies listed. Doctor was impressed with the stickers ( self made on computer ) and said something like Dare I even touch you? At least it got his attention and now to see how the surgery center acts once I get there...
Add to it the lympadema risk on the one arm - which I wear a neon pink glove and alert bracelet for no bp, sticks or iv's on that arm. I am very curious to find a real bandaid type dressing for things like blood draw and minor cuts. Keep up the good work and thanks for sharing.
Nancy
I have learned that the type of nurses I referred to are Wound Ostomy Continence Nurses (or WOCNs for short). Just wanted to get this info out so everyone could run with it as I was told it there is a question about skin these nurses usually provide amazing things.
Sorry, gotta' go. I have to catch public transport to work and am running late.
Sorry, I will not be able to update until later this week.
I have never heard of docs requiring patients to provide their own tape and gloves...thats disgraceful in my humble opinion. I would think that would raise sanitary issues. Would they really use tape that we brought from home and put it over fresh surgical areas? Our hospital and clinics have latex free supplies such as gloves. The paper tape is ok if dont leave it on too long. I do as Hopeful does and I take it off as soon as I can and just use gauze and a bra.
I am also allergic to latex, tapes & even the paper tape. When I had my lumpectomy, after surgery they wrapped a large stretch bandage around me. When I took it off at home the next day, OMG, I was so blistered where the rubber on the bandage (that helps it from slipping) had majorly burned my skin & blistered so bad, I had to use neosporin & gauze pads on it for several days; even had scarring for a while. I had to care for that area more than the lumpectomy/SNB site.
Thanks for posting this thread, Trickling. I will try the suggestions so that I will have the information for the future. I have wondered what I would do if the situation arose again where I would need something that would not blister me. I don't have a problem with steri strips & my doctors provide latex gloves & always read it off my chart to me before I have a chance to tell them, even my ob-gyn.
I know several years ago (when we were getting more aware of latex glove allergies), I heard of a patient who was so allergic to latex, she couldn't have it in ANYTHING. She was going to have a C-section. The patient even had problems when the female nurses used shower-bonnet type head coverings in surgery - when you stretched the bonnet it released latex from the elastic into the air. The patient had anaphylactic-type allergy to even air-borne latex.
There was one nurse in charge of getting everything latex free. Unfortunately, when the nurse called each company to see if they had latex in them, many companies did not refer her to the technical people, but to their LEGAL department. Of course, lawyers in general do not know much about science or what is in their product. Many companies refused to give any information whatsoever because its a proprietary secret what was in their product!
Another problem is that what does not give allergies in one person will give allergies in another. As far as I know, it is theoretically possible to be allergic to 'anything'. Some people say they are allergic to things that are made by their own body, such as hydrocortisone. The speed and route of exposure may make a difference.
Sometimes allergies can come and go. I used to get an allergy, and for several years had to wear a camisole beneath all my underwear because I'd get hives from the elastic. I suspect this was latex. That allergy came and went about every 5 years, and I haven't had problems in the last decade.
I work in a hospital, and we routinely now use latex-free gloves. There are different brands and types. The type we now use (as opposed to previous latex-free gloves) fits much more tightly and are much easier to don and use.
So allergies can be very weird, and can come and go. It can be hard to find out what exactly you are allergic to, and it can be hard to find out if a particular product contains that ingredient, even if you know what it is.
I never knew I had an allergy to the adhesive in tape/stickers until I had radiation. I am still scarred from the stickers they used almost a year ago! After my exchange surgery I woke up with tape and didn't think anything of it until I started itching (where I could feel it) and sure enough the little blisters were forming under the tape! I had never heard of this but now I know! I am in need of revision work and will now say "no tape"! My ps did use the surgical glue over my incision and that worked very well.
GramE I am working on making a table of the things mentioned in this thread. I just finished looking up the Tegaderm you with which you had a terrible experience. For what it is worth this link mentioned one of the more common reasons for patients having such a reaction as being improper application of the product.
http://en.wikipedia.org/wiki/Tegaderm
Sorry all you grand folks, I have to stop working on my table of what you all have shared until the weekend.
OOPS! I just realized I do not know how I will be able to share my table with you. Anyone know how to do this? Maybe I will simply have to have people send me a private e-mail so I can attach the table in my reply????
Today, I am meeting with a WOCN and am going to 1) ask her to write to CVS Pharmacy as to whether they offer a TAPE with the only adhesive to which I have not had a reaction, the adhesive on their over the counter Hydrocolloid Advanced Care dressing. and 2) see if she can give me the following as a test sample. It is not an adhesive but placed between adhesive and skin and may prevent allergic reaction or reduce reaction
3) I will mention your suggestions including the suggestion to contact the federal oversight agency for medical products.
leaf and others
When I did my feeble research re latex, I stumbled upon SPANDEX. As I recall, SPANDEX itself is not allergy producing and is carefully regulated due to its composition; HOWEVER, some companies use chemicals with SPANDEX that can cause a range of allergic reactions in some people, including some people allergic to latex. Exceptions - always exceptions. :-)
I would love a copy of your table - After cataract surgery, on May 2, they put paper tape over the clear eye shield and told me keep it on for 24 hours. After removing it, my face was quite red and inflammed, but no broken skin. Since I am due to have the other eye done in 6 weeks or so, any helpful info is appreciated.
Speaking of spandex and allergies - I know some bicycle enthusiasts wear special "pants" to avoid chafing. Perhaps part of that has to do with perspiration... Not that I am going to go out and buy a bicycle any time soon.
GramE Until something surfaces, if you can get to a CVS Pharmacy, why not get their over the counter dressing I refer to in the introduction to this thread? In the future, I have every intention of using the CVS Hydrocolloid dressing as a substitute for the elusive non-allergenic tape whenever I can get away with it. I don't think it gives off any fumes, etc. so I think your eye area would be safe. Of course, I know you'll check with your doctor before using, anything especially on your eyes.
I am really going to do all I can to convince the WOCN to assist me in tracking down the adhesive used on the CVS product.
Are you able to meet with a WOCN?
I am so sorry about the use of paper on your eye.
Am now going to get some much overdue ZZZZzzzzzz
After my lumpectomy my surgeon didn't place a tape, said I should be bare. It was very strange for me, but now I presume it was to avoid an allergic reaction. Later was giving steri strips!
Greetings Usha
Ooops! my entry disappeared. So if it somehow shows up again, you will know why the strangeness 
scrap2book (port) and GramE (eye) The WOCN with whom I met, yesterday, stated that they often use the following hydrocolloid product in an alternative manner by CUTTING A HOLE IN THE MIDDLE of it for ports. It is called
>>> DuoDERM Extra Thin (hydrocolloid dressing) manufactured by ConvaTec <<<
It adheres well and helps some people avoid allergic reactions. She gave me a sample (5 inches square ?) which I will test over the weekend as previously posted.
GramE you still have time before your next eye surgery to consult your medical team AND maybe even do a test on yourself! If they can cut a hole for a port maybe they can cut a hole for your clear eye cover!
GOOD LUCK experimenting EVERYONE!
What your doctors are telling you is wrong if you are in the USA, let your insurance know if it is for use in Hospital.
You can try 3M micro foam hypo allergic surgical tape, it can be found at Amazon, The Find.
I am allergic to latex and I found out when I had my mastectomy, all the itching and blistering I had when the dressing was removed.
For my recent Mohs surgery I found in G
Contacting WOCNs - Sniff this out at your locations all you little doggies!
I learned that it is ACCEPTABLE PROCEDURE in some medical settings NOT to go through the usual bureaucratic approval procedures to meet with an WOCN.
I learned this after going through the usual HMO Primary Care Physician circus routine that all I had to have done was to to directly contact the department (in my institution it is called the wound department) and arrange for to meet with a WOCN.
I will ask my eye doctor at my follow up visit next week about the DuoDERM. I am not sure how to get in touch with a WOCN since I am on Medicare and they are pretty stinky, even though I have a supplemental policy. Get this: they paid for the eye surgery, but not the implant. Guess the idea is to remove the old and leave me blind in that eye.... I am fortunate to be able to afford it.
And CVS is convenient to me. have not gotten over there to check out the above mentioned product, which I assume can also have a hole cut for the eye shield. Good info and I will pass along to others who are sensitive.
Nancy
How to contact WOCN (Wound Ostomy Continence Nurse). Be sure to verify that the nurse is degreed for this specific title once you are introduced.
GramE I am only a patient but based on my experience, I suggest going to your medical center that has a surgery department. Ask who is the Wound Ostomy Continence Nurse on duty. Ask if you could see this nurse about your wound. Declare that you are an established patient and that this is not an emergency and you are willing to wait and do not need to see a doctor. I would avoid going into specifics with the receptionist or other personnel.
When you have been introduced and VERIFIED that the person is a WOCN, I would ask something like: "Before we continue, am I correct that I do not need special authorization from my doctor to see you? I am a Medicare patient and wish to ask you a question about my allergic reaction to the tape that has been used on my eye surgery."
Let me share my specific recent experience regarding the bureaucratic end of meeting a WOCN.
When I learned of the existence of WOCNs via an outside source (my posting of April 27), I ASSUMED I would have to receive authorization from my HMO to meet with a WOCN. My past experience with the bureaucratic set up for authorization at my medical center has been "nightmarish", to put it nicely. I think the operative word is systemically flawed.
At any rate, I assumed that I would have to go through channels and did what I later found out was unnecessary and in a way confirmed that bureaucrats may not be the best resources about their bureaucracy.
I called my HMO rep and stated that I would like to meet with a WOCN at my provider hospital and if the HMO required my following any special procedure to set up this meeting. I was informed that I should contact my Primary Care Physician who would follow the same procedure as if I were being referred to a specialist AND that it was the responsibility of my PCP to determine which WOCN I should see.
I informed my PCP of this (fortunately, he accepts e-mails) and made it clear that the nature of the consult would be to see if I might experiment with some products rather than treat an active wound. We are in a university setting and he was able to supply me with the names of more than one WOCN. He then stated that he would submit his request in the usual manner of referring a specialist. On my end, I did my usual submitting of an e-mail to the university's physician group representative that would process my HMO authorization to meet with XYZ, a WOCN requested by my PCP.
PLEASE NOTE: This bureaucratic procedure was never questioned by my PCP nor myself and was the usual procedure for meeting with someone other than my PCP. Also note, that I am an established patient not a first time walk-in.
When I phoned the surgery department and asked if I could set up an appointment with the WOCN for whom I had authorization paperwork, I was informed that "we do not make appointments for meeting a WOCN. You just come in and ask to meet with the WOCN on duty."
I took a whole day off of work just to be ready for who knew what. I needed the extra time but will spare you more of the bureaucratic circus that went on after I arrived. The long and short of it is, that my HMO authorization paperwork was totally unnecessary and that I could have arranged for an appointment (although, a patient could come in at any time to have their particularly problematic wound attended to).
The wonderful WOCN with whom I discussed my allergic situation confirmed that the procedure at my medical center did NOT necessitate my getting a PCP referral and that I could have made an appointment.
>>> MY ADVICE: Speak directly with a WOCN about how to arrange your meeting with the WOCN as well as the nature of your consult.
>>> Also note: Maybe the quote below also gives some insight at to why didn't someone on the staff a long time ago bring in a WOCN as a resource when I had blisters many inches in diameter. I found out about existence of WOCNs from an outside source! I share this because if one of us experiences something, you can bet a lot of others do as well. Even knowing this, I felt quite alone until you all shared your experiences.
BTW, I just went to the following site and typed as a search ostomy nurses and found it insightful. The following quote from one of the articles dealing with nurse to nurse attendance may be the same basis for why I actually did not need to get paperwork authorization.
Main URL which I sometimes use instead of GOOGLE because of its user friendly formatting of its results list for what I type in as a search and it often more readily supplies understandable articles.
I typed in ostomy nurse as a search.
>>>QUOTE (nurse to nurse) at http://www.netplaces.com/new-nurse/continuing-your-education/new-treatments-and-new-products.htm >>>
In rare instances, you may have a physician who objects to a wound ostomy nurse evaluating his patient, but the wound ostomy nurse is a nurse, and you don't have to have his orders for another nurse to see a patient. You will have to be diplomatic in making any suggestions or requesting any changes based on her evaluation, but you can always use the resource.<<< (end QUOTE)
accidentally hit incorrect button
Thank you for the very important information. For my cataract surgery and initial appointment to see if and when I was having the surgery, I needed a PCP referral. This is even though my PCP has/had nothing to do with diagnosing cataracts ( eye doctor at annual eye exam told me I have cataracts ) But my PCP is great and faxed it over and all was go from then on.
On another topic, but relating to needing PCP referral - when I was going to need 4 dose dense, then 12 taxol and herceptin, port installed, then herceptin for a year total, my PCP knew of a "catastrophic illness" insurance code so I did not need zillions of referral forms and could get all the chemo and related visits and treatments, including MRI and Cat scans and MUGA scans.
One of my favorite sayings is " you have nothing to lose by asking "... Thanks again, Nancy
Clarification: my doctors who state that I, the patient, am responsible for finding a tape to which I am not allergic include a dermatologist . . . It is not as if I have tried everything on the market or that I know of what/who to ask about all the new products.
I will say it again: patients are forced to do these things, i.e., attempt to search out products in order to survive. In complying we actually support the system that makes us victims but we have no choice.
BTW, when it comes to having to provide LATEX FREE GLOVES, I think that is so out of line that newspapers would carry it as a headline.
You would think, with all the tests that we have to go through before surgery, somebody would do a tape test a week before.
I didn't know I was allergic to tape until I had my lumpectomy re-check. I thought it was the nylon surgical bra that was itchy. Turned out to be the cloth tape they used on my drain. The thick foam tape they used on the wound was less itchy.
I've found through the years, that it matters how long and where the tape is worn. Even those 24-hour heart monitoring thingies, with all of those foam stick-ons cause a rash, especially if worn in an area susceptible to heat and sweat.
Silky ribbon tape: Durapore or Ecopore
Transpore is the clear stuff with little sqaures to make it easier to tear, medipore is the papery one. Mefix (which is also used in mefix and primapore all'in'one dressings) is like a white J-cloth fabric with adhesive and comes in very wide sizes.
Tissue glue: Pmma, Dermabond, Histo-acryl or Blu-Glu.
Blinx You have a great idea: test patients for tape allergies BEFORE surgery. You would think they would at least do such a test on patients with some histories of skin allergies! Alas! They seem to have difficulty respecting the patient's known allergies to tape.
Did you see the descriptive posting by hymil which followed your posting?
Thanks to threads like these we can help each other with knowledge of products and strategies AND sisterly support!
