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  • I am Back! to Warn about the danger of the Fentanyl Patches

    I don't remember where I left off. Then came my great University of California - San Diego system of absolutely the best specialist I have found in my life.

    I spent 2013-14 with 9 months of treatments in El Centro from digestive problems to diarrhea for a month until I was sent to the UC Sand Diego system as a referral. My esonophil levels were so high both in upper and lower GI tracts that Dr Savides (UCSD)thought it was Crohn's to Cronkhite–Canada to several others diseases until Dr W. Sandborn tried a medication that helped. I was on Prenidsone which Dr Bridwell was against due to preventing fusion but Dr Savides said I will die if you I do not go on it. It was all caused by the stress to my system possibly the 11 hours surgery and recovery. So, after that, I concentrated on pain.

    I went to see UC San Diego Dr. Garfin who had determined in one session using the old fashion xrays machine that my SI joints fusion needs to be taken out and he would review the states of the fusion from L10-L11 down. I had a scheduled date for revison but as it become closer I panic. He wanted to remove or replace my SI joints mechanisms and wait until he opened up to see a) to top fractured disc b) what had to be replaced and added. It was too iffy for me to accept, logical but scary.

    I was not ready to thru another long surgery and recovery again specially when living in a small community in Baja California, Mexico with no hospital, clinics, nor reliable ambulance service 2.5 hours from the eastern border on the California border. I was going to work with a pain doctor as per Dr Bridwell (ST Louis Barnes-Jewish).

    In El Centro, Ca (pop. of about 45k and eastern most city of California with border of Arizona and Calexico Mexico). I found one pain office with a practicing Anesthesiology whom I never saw but in charge was his Nurse practitioner, a retired colonel with the personality of a pencil. On the first day, my husband and I went to see him and asked about pain control. So he wrote a presciption for Fentanyl patch to try. I was amazed that he offered opioids first but now I understand that since it is a controlled substance I would be returning every month and his business would be secured. It was good and after a few months of adjustments we found the right dosis. At the same time, I was getting slightly depressed and started seeing a local psychiatrist who would see me for 10-15 minutes on the first visit then would send me off with a trust me. My depression was getting worse so I went to my primary physician who accepted to help but made sure I understood he was not a specialist. We played around with some antidepressant.

    I asked him if by chance it would be the patches as the depression started at the same time. He totally said NO and his physician assistance told me he had used it in the operations room with no problems. Asked the pain clinic nurse and he said no complaints at all. I had to see him monthly due to Fentanyl being a controlled substance. My depression got worse after 6 months that my daughter suggested I log my moods on a daily chart.

    I barely was living with lots of suicidal thoughts. Been isolated, my niece from California came for 4 days visit in tried to get me involved in painting (hobby) but all I did was sit and watch. I would not talk. I started staying at home. Leaving the house to visit I would feared for car breakdowns. Then, fear of being alone in the house to a point that required me to go or have a neighbor come to sit with me when my husband had to go to meetings. I would have constant anxiety attacks. Would not even drive out the house and cut off any social activities.

    My husband do not understand about depression nor health issues and was in a panic. I would wake up with a stomach pain of dread until going to sleep but then darkness was OK while my husband slept I read. TV shows with some killing or tragic moments would upset me to no end. Finally, we opted to go to UC San Diego a 4+ hours drive to see a psych however I could not get an appointment for 6 months but my great physician who cured my GI problems, Dr Savides, helped shorten the wait by 1 month.

    I went to see DR. Papp, psychiatrist, who after a couple of sessions was scratching his head and as last resort he suggested a DNA test that he had in the bottom of his shelves. Both my husband and I said "oh well". It cost $300 but Medicare would cover it but we were not on Medicare for another month or so. The results came back attesting that the FENTANYL was adverse to my genetic compostition. It was causing all my depressions for the past 10 months. Very scary!!

    Dr Papp immediately wrote a letter to Dr Stevens and told us to insist he read it. Of course the DR was not available and we saw his nurse asst. In the letter, DR Papp explained and suggested alternative. This guy lood at us and said: so you want what this dr suggested? and proceded to wirte a RX for it (I am in Brutans Patches). The reason to keep going to Dr Steven's nurse in El Centro was because of distance matters and I can't stand 4 hours+ sitting in the car. Plus, I am still very independent and did not want my husband to be driving. Now the Butrans patches are giving me less relief but terrible allergic itch under the patch.

    So, I have decided to move on to UC San Diego to their Pain Clinic which required me to have a primary physician in the same network as their database is outstanding. I am giving up my mediocre primary physician who requires me to see him and have blood tests every quarter which is fine but they want me to take many stupid tests on different days in order to be able to charge insurance. I liked the convenience of having a primary close by in case of little ailments. But, driving 4+ hours to real world care is more important.

    I did see a UCSD Pain doctor who gave me 2 shots in the hip joint area which lasted about 3-4 months. They also suggested Marijuana but becuase of COPD I can't smoke it.

    I saw Dr. Bridwell in St Louis last September for my last check up becuase our daughter graduated from school with top honors and has joined UC San Diego in a lab that trains PhD doctors in having their own labs. Dr Bridwell took many xrays and found several problems. My top fusion above L10 is not fused, the crack, and my upper curve has been increasing. He would not operate again on my because the past operation was long and he did not think I would survive another one. However: if an Angel from Heaven came down and asked to him to do something he would answer: fix the lower curve. We left it at that.

    I have started last week with the Pain doctor at UCSD who deals with the medicine side of pain without other intervention with shots or other instrumentations. I am on Gabatin 300mg and am taking Vicoden 10/325mg as needed. I am so scared of becoming an addict so I watch what I take. Hopefully, I will stop the opioids and deal with some other meds before going to the extreme.

    Please: anyone using FENTANYL to be aware of it causing DEPRESSION!

    I welcome individual emails if anyone needs any clarifications. Sorry for the length of this summary. Hello Ed and Linda!

    May 2017 be a better year to all.

    Gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  • #2
    Wow Gardinia, you have been busy with the doctor tour and the med tour.....Have you thought about moving to San Diego to be closer?

    Many meds cause depression, Fentanyl being one of the strongest. It did kill Prince through abuse....I can imagine it just stopped his breathing.

    Dr Bridwell found a fracture above your fusion mass at T10. What did he say about the rest of your fusion and SI joints? You say he found several problems. Do you have any non-unions in your fusion mass? Does a revision surgery have to be such a massive undertaking, cant he do just one level?

    I am not understanding why Dr Garfin?, and also what he intended to do to your SI joints?

    Another thing about California, you could get a medical marijuana card, and try edibles for anxiety.(and pain) You don’t have to smoke it, you can eat it in a candy.

    I just looked at your signature, and didn’t realize you had a 89 degree lumbar curve....I am so sorry all of this has happened.

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

    Comment


    • #3
      Gardenia,

      If you are having itching under the patch, that's most likely an adhesive sensitivity. You'll have varying degree of it depending on the composition of the adhesive, which differs from brand to brand.

      What a pharmacist suggested for my mom was to use a nasal steroid spray (like flonase) spray onto the skin where the patch will go, let dry completely and put the patch on. The steroid will reduce the mast cell reaction that causes the itching. Hope it helps! It worked wonderfully for her -- along with switching to a different of patch. In her case it was a fentanyl patch and only brand that was on the low allergic side was because it was dry matrix vs. reservoir delivery was mallinckrodt brand.

      It might be worth for you to look into which butrans patch has lower skin reaction. Dry matrix patch tends to have less skin reaction causing adhesive on it.
      30 something y.o.

      2003 - T45, L???
      2005 - T50, L31
      bunch of measurements between...

      2011 - T60, L32
      2013 - T68, L?

      Posterior Fusion Sept 2014 -- T3 - L3
      Post - op curve ~35


      Comment


      • #4
        Watch the Fentanyl patch

        It is not the adhesive green m&m because after I take off the patch, I have a rectangular area in bright red which is the medication portion. I change every 8 days and each time is another place. I have visible the last 4 patches varying in intensity in red. The are itches while the patch is on so I apply cortisone cream 2.5% that I got in Mexico around the outside of the skin. It might help a little. I am hoping that my new pain doctor in San Diego will eventually wean me off using the patch and opioids.

        Thanks for your suggestions. I use flonase for my nose allergies. I will try it.
        Gardenia

        Originally posted by green m&m View Post
        Gardenia,

        If you are having itching under the patch, that's most likely an adhesive sensitivity. You'll have varying degree of it depending on the composition of the adhesive, which differs from brand to brand.

        What a pharmacist suggested for my mom was to use a nasal steroid spray (like flonase) spray onto the skin where the patch will go, let dry completely and put the patch on. The steroid will reduce the mast cell reaction that causes the itching. Hope it helps! It worked wonderfully for her -- along with switching to a different of patch. In her case it was a fentanyl patch and only brand that was on the low allergic side was because it was dry matrix vs. reservoir delivery was mallinckrodt brand.

        It might be worth for you to look into which butrans patch has lower skin reaction. Dry matrix patch tends to have less skin reaction causing adhesive on it.
        Gardenia
        Baja California, Mexico & El Centro, Ca
        pre-surgery 75° and 89° - post ?
        Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
        T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

        Comment


        • #5
          Gardenia, missed you and so-o-o sorry about all that has happened to you. Have you thought about a consult at UCSF or Dr. Hu at Stanford?

          Hugs, Susan
          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
          2018: Removal L4,5 screw
          2021: Removal T1 screw & rod

          Comment


          • #6
            Originally posted by gardenia View Post
            It is not the adhesive green m&m because after I take off the patch, I have a rectangular area in bright red which is the medication portion. I change every 8 days and each time is another place. I have visible the last 4 patches varying in intensity in red. The are itches while the patch is on so I apply cortisone cream 2.5% that I got in Mexico around the outside of the skin. It might help a little. I am hoping that my new pain doctor in San Diego will eventually wean me off using the patch and opioids.

            Thanks for your suggestions. I use flonase for my nose allergies. I will try it.
            Gardenia

            Hi Gardenia,

            Your description matches what my mom had (and I've read of other folks). The reaction may not be to the adhesive per se, but definitely due to compounds found on the surface of the patch that isn't the medication. The medication is in between layers of the patch mechanism membrane and it slowly diffuses out. The reaction is usually called an adhesive reaction so I call it that as well but it may not be your standard adhesive reaction that also cause reaction with medical tape/bandaids.

            The reservoir type patches have more gooey portion and that seems to elicit more reaction in people and longer use will cause increase frequency and intensity of the reaction, same as repeated exposure to medical tape.
            30 something y.o.

            2003 - T45, L???
            2005 - T50, L31
            bunch of measurements between...

            2011 - T60, L32
            2013 - T68, L?

            Posterior Fusion Sept 2014 -- T3 - L3
            Post - op curve ~35


            Comment


            • #7
              Love to move to San Diego but...

              Originally posted by titaniumed View Post
              Wow Gardinia, you have been busy with the doctor tour and the med tour.....Have you thought about moving to San Diego to be closer?

              Many meds cause depression, Fentanyl being one of the strongest. It did kill Prince through abuse....I can imagine it just stopped his breathing.

              Dr Bridwell found a fracture above your fusion mass at T10. What did he say about the rest of your fusion and SI joints? You say he found several problems. Do you have any non-unions in your fusion mass? Does a revision surgery have to be such a massive undertaking, cant he do just one level?

              I am not understanding why Dr Garfin?, and also what he intended to do to your SI joints?

              Another thing about California, you could get a medical marijuana card, and try edibles for anxiety.(and pain) You don’t have to smoke it, you can eat it in a candy.

              I just looked at your signature, and didn’t realize you had a 89 degree lumbar curve....I am so sorry all of this has happened.

              Ed
              Originally posted by gardenia View Post
              It is not the adhesive green m&m because after I take off the patch, I have a rectangular area in bright red which is the medication portion. I change every 8 days and each time is another place. I have visible the last 4 patches varying in intensity in red. The are itches while the patch is on so I apply cortisone cream 2.5% that I got in Mexico around the outside of the skin. It might help a little. I am hoping that my new pain doctor in San Diego will eventually wean me off using the patch and opioids.

              Thanks for your suggestions. I use flonase for my nose allergies. I will try it.
              Gardenia
              Hello Dear Ed,
              Sorry but somehow I couldn't respond sooner. Here are my answer. Yes, the initial plan was to move from Belmont, Ca (Mid peninsula between San Francisco and San Jose) to Baja California, Mexico after building a house and getting a condo in San Diego. However, it was at the time of the market crash so we stuck to moving after selling our house low in the market. One of our daughters since got her PhD and retuned to do a post-doc with UC San Diego and wanted us to co-share a place. Problem is that her boyfriend relationship is serious and who knows where she will be headed in 3 years. Our house in San Felipe was built with American products and is about 6,000 sq ft.

              Fentanyl patches was super toxic in my body. I felt trapped like someone perhaps in a comma. My exterior reflected the deep depression worsen each day. My brain was telling me something was wrong and I need to climb back out, but felt tied down unable to fight it. A classic double personality acting at the same time. (too much TV)

              These 2nd batch of patches BUTRAN, is leaving rectangular high itching red to brown after 6 weeks and they are now all over my upper body. I am determined to look for alternatives with a pain medicine doctor at UC San Diego to stop opioids. She added GABAPENTIN 300mg.

              Dr. Bridwell found the top T10/T11 not completely fused, saw the small fracture but concentrated mostly on the top curve starting to collapse. I don't recall much as it was one appointment with my husband and daughter listening. He recapped saying that my surgery was longer than expected and another one would risk my life. It was quite an impacting session. Then, Dr B, said: if an angel came down and asked him what he would do and have to do one thing, then he would say fused the top curve.

              Actually, it was a no brainer. I would not submit to another surgery nor would be returning to St Louis as my daughter graduated and we sold the condo and he would not perform another one. He never addressed my pains but mentioned that where I lived would depress him as well (showed him several photos).

              Dr Garfin, UCSD, wanted to remove my iliac joints screws. Watch is uTube explanation on a conference he gave. It is 10.27 minutes and it doesn't get intereting until after the introduction first 2 minutes. There are a lot of medical talk but he stated that: "long fusion to the sacrum may develop SI joint pain". It is an old clip from 2012 but I saw him in 2014. https://www.youtube.com/watch?v=FwGNHJbNttY or do a search.

              Dr. Garfin proposed to open and remove the anchor (?) but on the top open to repair T10 area and see what's he needs to replace but now that the top curve is in need then more. I was supposed to ask Dr Bridwell the type of screws used so that Garfin could order the tight 'screwdrivers' to remove however I am a chicken and am afraid that Bridwell would object if I want to take down his work. I feel a like I would be violating a trust. Neither surgeon would communicate with the other, hope at least they would be open to discuss my case but they both feel their work is tops (so who would question it?)

              The passage of marijuana was great in California but I don't really have access to a dispensary and prefer not to smoke it. Eating or applying would be much preferred. Back way back in college, one did not question anything about the purchase. I was amazed at the complexity of strength, types, results wanted etc... Need a phamacyst knowledge.
              Gardenia
              Baja California, Mexico & El Centro, Ca
              pre-surgery 75° and 89° - post ?
              Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
              T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

              Comment


              • #8
                Originally posted by gardenia View Post
                I was supposed to ask Dr Bridwell the type of screws used so that Garfin could order the tight 'screwdrivers' to remove however I am a chicken and am afraid that Bridwell would object if I want to take down his work. I feel a like I would be violating a trust. Neither surgeon would communicate with the other, hope at least they would be open to discuss my case but they both feel their work is tops (so who would question it?)
                That's odd. Unless Bridwell used something rare or experimental, it's relatively easy to identify implants from a plain xray. If/when the UCSF docs have any question, they simply ask the implant reps who always know.

                While no surgery is risk free, what you're describing is a relatively simple surgery. Fixing an area of non-fusion and removing iliac screws are both surgeries with very high success rates.

                --Lida
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                Comment


                • #9
                  Originally posted by gardenia View Post
                  Fentanyl patches was super toxic in my body. I felt trapped like someone perhaps in a comma.
                  Gardinia, this sounds like a bad dream....

                  I am hesitant about taking low dose Bayer, 81 mg!, (you know, for the heart,) but these patches sound pretty bad! My father tried a fentanyl patch with ALS, and of course, didn’t like it at all. Its hard enough to breathe with Lou Gehrig’s let alone exasperate the “respiratory” depression these meds cause.....If you read the fine print, the very first thing they state is “respiratory” depression. When you have to think about breathing, you know your there....I have always associated patches with terminal disease.....

                  I understand about the possibility of your daughter moving. Crystal starts another residency this summer in Phoenix....People that have an interest in medical science, they keep going, it doesn’t end. When she entered med school, I told her that’s it’s a lifetime effort.....you don’t quit. If you need to be in San Diego, rent a place. The beauty of renting is that you can pack up and move on a 30 day notice which makes things easier.

                  I wouldn’t feel bad about continuing with Dr Garfin if travelling to Dr B is out of the question....and like Linda says, removing the screw and repairing your T10 Fracture is an easier surgery.

                  What is Dr Garfin saying about the patch situation and getting some repair work done?

                  6000 sq feet is quite the spread. Your not cleaning this house are you? (smiley face)

                  Ed
                  49 yr old male, now 63, the new 64...
                  Pre surgery curves T70,L70
                  ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                  Dr Brett Menmuir St Marys Hospital Reno,Nevada

                  Bending and twisting pics after full fusion
                  http://www.scoliosis.org/forum/showt...on.&highlight=

                  My x-rays
                  http://www.scoliosis.org/forum/attac...2&d=1228779214

                  http://www.scoliosis.org/forum/attac...3&d=1228779258

                  Comment


                  • #10
                    Thanks, Linda.

                    Originally posted by LindaRacine View Post
                    That's odd. Unless Bridwell used something rare or experimental, it's relatively easy to identify implants from a plain xray. If/when the UCSF docs have any question, they simply ask the implant reps who always know.

                    While no surgery is risk free, what you're describing is a relatively simple surgery. Fixing an area of non-fusion and removing iliac screws are both surgeries with very high success rates.

                    --Lida
                    I am hoping that the pain doctor at UCSD will help me with the pain. I am hoping to get off the Butrans as well as quit visiting the Pain doctor in El Centro. This pain clinic is under a anesthesia doctor and it is his nurse practitiones, a retired colonel, who sees patients all day.

                    I am on Gabapentin and doing much better again like when I was on Fentanyl. I do an occassional Vicodin for added control. I have not seen Dr Garfin since early 2014. Too scared. And, I wondered why I had to go ask Dr Bridwell about the type of instrumentation used. Dr Garfin must know that he is placing me in a bad situation. Would have been easier for an admin from his office with my permission to call and get records or make a call, I presume.

                    I trusted Bridwell so much. Will leave it in God's hands to guide me and I am not super religious. I will have to wait and see.

                    Thanks Linda.
                    Gardenia
                    Baja California, Mexico & El Centro, Ca
                    pre-surgery 75° and 89° - post ?
                    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                    Comment


                    • #11
                      Bad Dream for a year ...

                      Hi Ed,

                      Forgive me for not knowing how to reply to your posting. Yes, it was frightening but I am so happy the I was able to surface no thanks to my Primary physician nor my El Centro pain nurse assistant.

                      BTW, the grandmother of my college boyfriend used to call me Gardinia and not sure she liked me. [Gardenia is the name of the
                      problems. I have a small breathing problem specially to house cleaning chemicals. The strong odors take my breath away, but yes I have a pair of ladies that come and clean. Fortunately, after 12 years of taking care of my daughter's cat, I am totally immune to him.

                      We are renting an apt in El Centro which is on the eastern US side of the California Border. It is 2 1/2 hours from San Felipe (in the Sea of Cortez). My sitting in a car tolerance is about that much. San Diego (or La Jolla) is another 2 hours. The thing is I am spoiled now after living in a brand new house with all the luxury that I would not have in San Diego. The house was built with a main house with one bedroom and connected to other quarters by an outside common courtyard. We have a casita with 2 bedrooms, bath and living room which once the girls are not here then it is closed and out of sight i.e. no cleaning.

                      Like Crystal, I assume your daughter, my childhood best friend in sent me her daughter [a medical Dr graduated from Panama] to stay while studying to take an exam in the US that would qualify her to do her medical internship and residency. She did all that and now specializing in plastic surgery [rebuilding very deformed babies]. She will be 39 by the time she is done. Quite beautiful, independent, and single. Like my older daughter hopefully getting her PhD in Greek Archeology this year then looking for a teaching job = no boyfriends.

                      I always dreamed of a close knit family with my girls coming to Sunday dinner with their family. But, I went to college in San Francisco and stayed for 40+ years. Then, packed up with my husband and moved to Baja Mexico. What kind of example have I given them. Worse of all, down here there is zero (good American) medical care. So, who to blame? Of course, I can go and rent in San Diego and if I were smart, get an appointment with Dr Garfin. But, I don't think that he is any different from Bridwell. They are technical spine fixers, body pains outside the spine is really not of their interest.

                      I am adjusting. Both you and Linda are making a lot of sense. Thank you. Gardenia


                      Originally posted by titaniumed View Post
                      Gardinia, this sounds like a bad dream....

                      I am hesitant about taking low dose Bayer, 81 mg!, (you know, for the heart,) but these patches sound pretty bad! My father tried a fentanyl patch with ALS, and of course, didn’t like it at all. Its hard enough to breathe with Lou Gehrig’s let alone exasperate the “respiratory” depression these meds cause.....If you read the fine print, the very first thing they state is “respiratory” depression. When you have to think about breathing, you know your there....I have always associated patches with terminal disease.....

                      I understand about the possibility of your daughter moving. Crystal starts another residency this summer in Phoenix....People that have an interest in medical science, they keep going, it doesn’t end. When she entered med school, I told her that’s it’s a lifetime effort.....you don’t quit. If you need to be in San Diego, rent a place. The beauty of renting is that you can pack up and move on a 30 day notice which makes things easier.

                      I wouldn’t feel bad about continuing with Dr Garfin if travelling to Dr B is out of the question....and like Linda says, removing the screw and repairing your T10 Fracture is an easier surgery.

                      What is Dr Garfin saying about the patch situation and getting some repair work done?

                      6000 sq feet is quite the spread. Your not cleaning this house are you? (smiley face)

                      Ed
                      Gardenia
                      Baja California, Mexico & El Centro, Ca
                      pre-surgery 75° and 89° - post ?
                      Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                      T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                      Comment

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