I am putting this on the web in the hope that it will help others with this problem.  If you have any questions you are welcome to contact me at:  tony@lekas.org

There are two web sites containing information on rrp.  See:
RRP Foundation
The RRP Web Site

I first noticed a problem with my voice late spring 2001.  It gradually grew worse and I went to see my primary care doctor who referred me to a local ENT.  The ENT said that I had polyps and that they might be due to acid reflux.  He put me on Prilosec for a month.  This did not help.  He then scheduled me for surgery.  At this point I knew nothing about rrp and the ENT said that sometimes these polyps just happen.  I had my first surgery 1/3/2002.  I do not know what he used to remove the polyps.  I was only told to rest my voice for a few days.  My voice got somewhat better and then quickly back to where it was.  I went back for a checkup after 2 weeks.  The doctor told me that he had not been able to remove all of the polyps without risking damage to my vocal cords.  He had left a thin layer.  He referred me to Dr Zeitels at Mass Eye & Ear Infirmary in Boston.  I had a fight with my insurance company to get an out of network referral.  Eventually I did get it.  I will have different insurance starting January.

This is an image from my first examination with Dr Zeitels on 3/20/2002.  Note the papilloma on my left vocal fold.  Also note that it is spreading down towards where the vocal folds join.  Dr Zeitels said that he was almost certain it was rrp.  He explained the disease and referred me to the RRP Foundation at http://www.rrpf.org/  He recommended surgery.  After another insurance fight I got it scheduled.

I had a checkup about two weeks later and was told that I was completely clear of papilloma.  This exam was done with a flexible scope through the nose and no pictures were taken.  I had several sessions with a speech therapist and my voice ended sounding the same as it did before this whole thing started!  The only difference I noticed was that I could not yell as loud as I used to.  Of course I was told that yelling was not a good thing to do.  I am sometimes in situations where I have to communicate with someone when there is high background noise.

I went for a checkup on 11/6/2002.  This was somewhat later than planned due to Dr Zeitels schedule.  He told me that the papilloma had returned and that I needed to have it removed again.  This was about 15 weeks since the last surgery.

This time Dr Zeitels recommended that I have the papilloma removed using just the Tuned Pulse Dye Laser (PDL) under local anesthesia.  He referred me to Dr Franco to have this done.  Dr Franco works with Dr Zeitels at Mass Eye & Ear Infirmary and has been doing this procedure for 2-3 years.  I went in to see Dr Franco on 11/19/2002.  He explained that the PDL was tuned to a wavelength that is preferentially absorbed by blood.  It is used to coagulate the blood supply to the papilloma.  They then slough off of the vocal cords.  It cannot be used if the papilloma is too large because it can only penetrate so far.  Here is the before image on 11/19/2002.  The resolution is not as good as the previous images because this one was taken with a flexible scope through the nose rather than a rigid one through the mouth.

PDL Procedure

-I was seated in an exam chair.

-First he sprayed an anesthetic and decongestant through my right nostril.  He also sprayed the same anesthetic that is used for the rigid scope down my throat.  This was followed by spraying lidocane down my throat while I was told to pant quickly.  I have a very active gag reflex and I kept gagging as the lidocane was sprayed.  This probably led to some later problems.

-A thin tube connected to suction was run down my other nostril.  I was given goggles to protect my eyes.

-A flexible scope was run down my right nostril.  It was somewhat thicker then the ones normally used for exams.  It had an opening down the middle.  A suction tube was connected near the part the doctor held, with a valve that he controlled.  A thin, clear optical fiber was also run into the handle area of the scope.  He pushed it into the scope and could control the amount that extended beyond the end of the scope.

-He would then manipulate the scope and fiber to aim it at the papillomas.  When in place he used, I believe, a foot pedal to turn it on.  I could hear it pulse between 1-2 times per second and I could see the pulses in the fiber.  The light appeared to be a pinkish color.  During this I was told to breath in and out.  There was some smell of burning but it was not too bad.

-At times I did have some problems with pain, at one point bad enough that he had to stop and spray more lidocane in.  Even after that I had some significant pain.  After the procedure we "discussed" this.  If I have to have this done again I will probably get a lot more of the initial spray down the throat and then wait a while before trying the lidocane.  This helped with the rigid scope in the past.  The gagging probably prevented the lidocane from getting everywhere it needed to.

-He needed to use about 725 pulses.  He had told me before he started that the length of voice rest would depend on how many pulses were used.  The laser causes bruising in the vocal cords.  I was told not to speak at all for 7 days.  If I had had less papilloma and only about 100 pulses were required the voice rest would have been 2-3 days.

After the procedure he showed me parts of the video on the computer.  If you look at the upper part of the left vocal cord in the image above (the one to the right in the image) you will see a distinct lump.  After using the laser on the base of it he was able to use the scope to push it off.  He then had me cough it up so I could swallow.

The picture below was taken at the end of the procedure.  As you can see the lump mentioned above is gone.  There is a white area where it was.  However the more spread out papilloma is a bruised mess that is still attached.  It is hard to imagine that the result will be a clean vocal cord but that is what is supposed to happen.  I will go back in 2-3 weeks and will see how it turned out.

The reason for doing this under local is because of the risk of repeated general anesthesia.  Also the entire procedure took around 15 minutes after things were setup.  Afterwards I just left and got a ride home.  All I had was a sore throat that almost entirely went away by the next day.  If this works well and my voice comes back it will be a great improvement over surgery.
Surgeries Under General Anesthesia: 3
Surgeries Under Local Anesthesia: 1
Interval Since Last Surgery: 17 Weeks

I went back for a checkup on 12/13/02, after the PDL treatment.  My voice had not come back as well as I had hoped.  I also had a bit of a sore throat almost up to the date of my checkup.  Dr Franco said that the PDL treatment causes some blood vessel damage in the vocal fold.  If I am rough on the vocal fold it is more likely that there will be bleeding inside of the vocal fold that will cause swelling.  The day after the 7 days of voice rest I was visiting with friends over Thanksgiving.  Over the 4-5 days I was probably taking much more than I should have.  In large groups I was trying to speak louder than I should.  This may have delayed the healing.  Dr Franco said that the lump at the upper right in the photo appears to be a granuloma that may be caused by irritation that resulted from overusing my voice.  He also said that in the future it would be better to get me in for the PDL treatment before there was as much re-growth.  When there are fewer laser pulses used the recovery is quicker and there is less chance of problems such as this.

He also commented that the fold was redder and more swollen than he expected.  I then told him that I had inhaled a bit of food that morning and had to cough repeatedly and vigorously to get it up.  He said that could have been the cause.  I am supposed to not speak any louder than I can comfortably.  I will have another checkup in about 6 weeks.

Towards the end of December 2002 my voice almost returned to normal.  I was pleasantly surprised.  After seeing the pictures during surgery and after my slow recovery I was somewhat skeptical about my voice recovering.  The pulsed dye laser works!

I went in for another checkup on 1/27/03.  The picture below was taken at that visit.  I had significant re-growth of the papilloma.  Much of my left vocal fold, on the right in the picture, is completely covered with a smooth layer of papilloma.  There is a small lump towards the bottom and larger ones near the top.

I was also disturbed to see a small pap on my right vocal fold.  It showed up better on the screen than in this scan of the photo.  This is the first time that the right one has been involved.

At this point the effect on my voice was minor.  The part of the vocal fold furthest away from where the folds join has less effect on the voice.  The other parts have a fairly smooth layer.

I am scheduled to go back on 2/6/03.  Dr Franco plans to do Cidofovir injections in all of the places where I have papillomas.  He will then use the pulse dye laser to remove the papillomas.  This will all be done under local anesthesia.

On 2/6/03 I went in again for treatment.  No pictures this time.  First under local anesthesia I was given Cidofovir injections.  This was done with a large curved needle through my mouth guided by a flexible scope through my nose.  These injections were done through the papillomas into my vocal folds.  After this the papilloma were treated with the Pulse Dye Laser.  I am on voice rest till 2/12 and I have a checkup schedule for 2/28.

I still had difficulties with the effectiveness of the local anesthetic.  During some of the injections and some portions of the laser treatment I experienced significant pain.  The problem was not just the pain but my inability to control my gag reflex when experiencing it.  I will discuss how to deal with this in the future with the doctor when I have the checkup.
Surgeries Under General Anesthesia: 3
Surgeries Under Local Anesthesia: 2
Interval Since Last Surgery: 11 Weeks

On 2/28/03 I went back in for a checkup.  This was about 3 weeks after I was treated with Cidofovir injections and with the PDL.  As you can see, my left vocal fold is covered with papilloma.  The doctor said that this is new growth since the treatment!  We discussed what to do about this.  One option would be to go in for surgery with general anesthesia.  This would allow the doctor to do a better job of cleaning all of the papilloma off.  The other option would be to go in again for another series of Cidofovir injections and another treatment with the PDL under local anesthesia.  His recommendation was to try the PDL again.  He said that sometimes it takes a few treatments before the rate of reoccurrence goes down when using the PDL.  He did not know why that was.  I decided to try the PDL with local anesthesia and I am scheduled for that treatment on 3/6/03.

I also discussed the problems I had with the local anesthesia not working.  He said that part of the problem is that the area where the large lump is, near the wide opening, does not get good coverage when the Lidocane is inhaled.  He offered two options.  The first would be to take some Valium an hour before the treatment.  He said that along with the usual local anesthesia it would help me control the gagging.  The second option would be to get an injection in the neck which would completely eliminate all feeling.  That would last for 2-3 hours.  I will try the Valium for the next treatment.

On 3/6/03 I went back in for treatment.  The papilloma were injected with Cidofovir and the PDL was used on them.  I still had problems with the local anesthesia.  The Valium was completely useless.  If anything it made it a little more difficult to intentionally relax and ignore what was going on.  I took 4 mg and I weigh about 245#.  The doctor was able to inject all of the papilloma, including the large lump at the top of my left vocal fold with Cidofovir.  The injections in the lump were painful but I was able to control it.  However, any attempt to use the laser on the lump caused enough pain that I gagged uncontrollably.  The doctor expressed the hope that because he was able to thoroughly inject it the Cidofovir may help.  The problem seems to be that panting while lidocane is being sprayed down my throat does not get to the upper area of the vocal folds.  I am on voice rest for 5 days and I will have a checkup in about 2 weeks.
Surgeries Under General Anesthesia: 3
Surgeries Under Local Anesthesia: 3
Interval Since Last Surgery: 4 Weeks

On 3/21 I went back for a checkup.  The doctor said that the material on my left vocal fold is probably papilloma which is dead but has not yet sloughed off.  It is white and papilloma normally redder because it has lots of capillaries in it.  I have a checkup in another 3 weeks.  My voice is reasonably close to normal.

Dr Franco also said that he met with Dr Rosen and Dr Rosen may be getting PDL equipment for treating rrp.

The obvious advantage of PDL only is there is no general anesthesia.  This is what I have done for the last three treatments.  After the PDL treatments my voice is very good but not quite as good as before rrp.  The advantage of surgery under general is that the doctor can do a much better job of cleaning off the vocal folds.  This is due both to the nature of the PDL only treatment and to the problems I have with the local anesthesia.  Because more of the papilloma will be removed this might result in a longer time before I need treatment again.  Given how erratic this disease is it will be hard to tell unless it comes back soon.  My voice may also be better after surgery.

I decided on surgery under general anesthesia and I am scheduled for 8/13/03.  The last time I had surgery under general they used a different mix and/or timing.  I came out without vomiting and feeling much better.  I hope the results will be the same this time.

I had surgery on 8/13/03 and then a follow-up exam on 8/29/03.  The image above is from that exam.  (The pattern in the lower part is on the photo I scanned.)  The doctor used cold steel along with the 585-nm Pulsed Dye Laser to remove the papilloma.  Again I had no problem with the anesthesia this time.  Prior to surgery I discussed my experience with the anesthesiologist.  He said that the difference between the prior two times was the use of morphine.  When I had morphine I was violently nauseous after surgery.
Surgeries Under General Anesthesia: 4
Surgeries Under Local Anesthesia: 3

I had a checkup on 12/22/03.  The picture quality above makes it hard to see but my left vocal fold, right above, is larger than the right and there are two small bumps of regrowth towards the top.  This is a location which has tended to have growth.  This is two months since my last treatment, there is little regrowth, and my voice works well.  The growth seems to have slowed.  I don't know if this is due to the Cidofovir injections, to taking I3C, or luck.  In any case I am glad to be able to speak!

I had a checkup on 2/9/04.  The doctor said that the large white lump on my left vocal fold is a granuloma.  It is too white to be papilloma.  He said that it was probably caused by irritation at a site where papilloma was removed.  The more or less even layer of papilloma on the left vocal fold is not significantly changed from last time.  It appears that the papilloma is growing little if at all.

My voice is working pretty well.  I only have problems if I have to speak for a long time.  Even then I can manage it by sipping water and taking it a little easy.  As long as it is not significantly interfering with my voice I'll wait to do anything about the granuloma.  The papilloma will almost certainly come back sometime and the granuloma can be dealt with then.

10/15/2008

I have been getting questions about my current status.  I am still in remission.  I have had no further checkups.  I may go sometime soon just to make sure there has been no growth that is not effecting my voice.