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  • Getting Botox TODAY!

    Hello IC friends,
    I am getting botox today! It will be followed by physical therapy on a regular schedule. I am not scared; I am hopeful. I love my new doctor, a urogynecologist, and their physical therapist is one of the best in the country. This is a long time coming, and I have been through a lot to get here. I have had IC for 14 years now, and have also been diagnosed with PFD and pudendal neuralgia. Through the years I have traveled to many IC doctors, had two hydrodistentions and tried all the standard treatments and countless holistic therapies (from acupuncture to aloe vera, you name it) to no avail..... I was on Elmiron for 7 years and kept getting worse, I did instills of DMSO and heparin. I have had nerve blocks, and I tried the Headache in the Pelvis protocol (went to the 6-day clinic and followed up with physical therapy and relaxation sessions). I follow the IC diet very carefully - if I eat anything outside of it, I pay with a big flare.

    I know botox can take a while to take effect, but I will come back and post once I know if it is helping -- or not. The information posted by other IC-ers on this board has helped me tremendously and I want to give back by posting my own experiences as well.

    We are all so different, though; I have learned that what works for one of us does not work for another. All I can do is try. My dream is to be able to return to working again and feeling productive instead of being homebound with my best friends - a heating pad, ice packs and warm baths.

    Here's to hope!
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  • #2
    I hope this helps you.
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      So far so good!

      Update: Yesterday I had botox injected into the muscles of my pelvic floor that are the most spastic and painful. My doctor really LISTENED and found the epicenter of my pain. I have never felt so heard, and cared about. She palpated the muscle groups inside me, checking each one, told me their names, and even drew a diagram for me afterwards showing which muscles she injected. (I'll get to that) During the injections she was gentle and reminded me to breathe and relax as much as possible to reduce resistance as the botox was going into the muscle fibres. I could FEEL it hitting the right spots that have hurt me for years! I am so hopeful.
      After the injections, she just had me lay there and rest -- and the most amazing thing happened outside the window. There was a tall tree with a nest of baby birds and a mom and dad bird kept coming and going and feeding them. I was just laying there, marveling at this circumstance.
      After a while I was moved to another room where I had physical therapy, the best PT I have ever had. She assessed me first, and I found out I am hypermobile! Which means some of my pelvic joints are loose, and the muscles have tightened to compensate! Who knew?!!! She did external therapy first, then internal, and went right to the areas that have been locked in pain for so long, and started to ease them, getting the blood flow going. I felt so comfortable I never wanted it to end! She and my doctor are also very insistent that I get back to exercising, which I stopped about 8 months ago when the pain got so bad. With their encouragement, I am going to start exercising at a warm water arthritis pool where I live. There are classes for all levels, and I am really looking forward to it.

      Anyway -- the muscles I had injected were the ileocococcogeus, pubococcygeus, obturator internus, puborectalis, and -- so important to me - I told her I had pain close to the surface on the left side, where it all started, and she LISTENED and changed to a smaller gage needle and injected the superficial and deep transverse perineal muscles on the left side. It was a good pain, like when you have a toothache and they get the stuff right into the painful area.
      I won't know for about 2 weeks how well the botox works for me, but I already feel so hopeful. I am getting set up for regular PT appointments too. They also give use trigger point injections for really stubborn trigger points (the doctor comes in the room with the physical therapist to do the injections as needed) so that is exciting to me too. I have hope of real pain reduction, which I have never had before.
      Oh -- I am also supposed to avoid sitting as much as possible, unless I have a really good perineal cushion -- AND, they encouraged me to find a warm water pool to exercise in. I found out there is an arthritis association pool with classes not far from my home! I will be starting asap, and am very excited about it! I used to exercise all the time before it got too painful, so this will be a relief.
      I will post again as I start to feel some progress! I hope this is helping someone -- by reading your posts it has helped me seek better treatment and has given me hope and courage to keep going.
      [SIZE="2"][FONT="Lucida Console"]
      My blog: http://icandpne.wordpress.com
      1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
      Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
      Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

      Comment


      • #4
        Good luck! Hope you get relief!!!


        Diagnosed February 2007
        Have had symptoms since age 11
        Other conditions - endometriosis, eczema, migraines, epilepsy, diabetes, asthma, PTSD, chronic joint degen., ewings sarcoma, etc.
        Current meds - neurontin (2000 mg), zyrtec (20 mg), prelief (with questionable foods or when flaring), zoloft (200 mg), Elmiron (600 mg), AZO (up to 3x day), Enablex (15mg).

        "EVERY day we are stronger because of the people around us who lend their strength. May I only be so blessed as to lend that strength in return when my time comes" ~my grandmother

        Comment


        • #5
          It all sounds very promising. I hope the best for you.
          Sharon

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.



          Link to the ICN Patient Handbook:
          http://www.ic-network.com/handbook/

          Link to the IC Diet:
          http://www.ic-network.com/diet/


          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            botox update 2 weeks out

            well, the crazy making part of this disease strikes again. The last 3 days have been flare hell. Today is the 2-week point where I was supposed to notice some positive change. I felt better a week ago, and so hopeful. Today I am soooo discouraged.
            I have an appointment today but had to cancel because I cannot make the drive - at least 3 hours depending on traffic in L.A. I am either in bed or on the couch with the burning, searing pain in my bladder / abdomen and knives returning between my legs.
            I know everything we try takes time and I am not saying I'm giving up because there is no choice. I try to do one day at a time but I must say it is wearing me down. I was saying this same thing a year ago, and the year before that. Sometimes I just break down and cry.
            I was so hopeful that maybe I was getting part of my life back. I have had this for 14 years now and was functional until the last 2 years.

            If you have any encouragement at this point I could sure use it. Thanks.
            hope I have some improvement to report next time I post.
            -Sharon
            [SIZE="2"][FONT="Lucida Console"]
            My blog: http://icandpne.wordpress.com
            1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
            Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
            Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

            Comment


            • #7
              Botox this friday

              I am end stage IC. My bladder only holds 150 cc when distended. I take Avinza (morphine) for pain from the pain clinic. I also have had an interstim device for 5 years. I am getting botox on friday the 24th, all I have heard about is urinary retention and having to cath myself which is extremely painful for me. Plus I work full time and would have to do this at work, luckilly I work in a doctors office so they all understand. Is this what is happening to everyone? My doctor told me to prepare for that the most. I would also like to take a break from the morphine, I have been on it for 2 years. Does anyone who has done the botox think the pain is much improved after the injections?:angel
              Thanks,
              Lisa
              Pain started 12/23/1989, diagnosed 1990
              I am considered severe endstage

              Current meds:
              Avinza (pain clinic)
              Vyvanse (ADD)
              Zoloft (depression/anxiety)
              Vivelle patch (hormones)
              Relpax (migraines)

              Other problems: ADD,PTSD(from years of pain),Possible Behcet's disease,migraines

              Current treatments: Botox injections every 6 months, have had 4 and it changed my life . Hospital based pain medicine doctor, pain therapist



              Things that didn't work: Almost everything: Elmiron,DMSO,diet

              Comment


              • #8
                1 week update

                I don't want to discourage you or anything, just an update. I got botoxed one week ago. To ease your first fear, I have not had any problems whatsoever with urinating. I was given percocet for pain and a stool softener to take for 2 weeks. Unfortunately I became constipated from the pain meds, despite the stool softner. I took a couple doses of exlax over the weekend and now the pendulum has swung the other way - diarehha. I think the worst of that is over! I just had to get the blockage out of the way. My only real complaint is that I wasn't really informed about the pain afterwards. I had to get botox under anestesia for insurance to cover it. So I was only knocked out for about 10 minutes. I was able to pee shortly after waking up and allowed to go home. The first two days weren't bad. When I woke up the third day the pain in my pelvis/vagina was very bad. I checked below and my left labia was black due to bruising. I have had to recline alot with an ice pack between the legs. Standing and laying down aren't too bad. Sitting is almost impossible. At the one week point the bruising is starting to go away and I am able to sit for short periods. I just started to drive again. I have stopped all pain meds because I don't want to get constipated again. I think the worse is over for now. I couldn't get an appt. with a pelvic physical therapist until the third week of may. I think my doctor wanted me to start sooner to work the meds into my muscles but I don't have a choice in that. I hope you have success. It's still a little early for me, but once the pain settles down I hope to start excersizing again. Good luck to you.

                Comment


                • #9
                  Lisa-botox

                  Hi Lisa,
                  As far as urinary retention and having to cath yourself after botox, I think it depends on where they put the botox. Mine was in the muscles of my pelvic floor that were the most painful for me, and that the doctor could also palpate and feel were very tight - hypertonic I think is the term when muscles get that tight. I already have some retention and have to really relax to release sometimes, but the botox did not have any effect on me that way. I do think it has softened up my muscles, but I have ended up in a bladder flare 2 weeks out for some reason - could be unrelated.
                  I have heard of others getting botox in the bladder itself and I don't know anything about that. Or if it is near the urethra sphincter it seems like it could cause either retention or incontinence. I am not a medical professional though! So ask your doctor where he/she is injecting you.
                  Also - you might get more responses by starting a new thread with your questions, just a suggestion.
                  Feel free to PM me and I will tell you anything you would like to know about my experience.
                  I am impressed that you are still working too!
                  It is so good that people are posting their experiences -- it is how we can all help each other. I am so thankful for this board.
                  - Sharon aka ICsmiles
                  [SIZE="2"][FONT="Lucida Console"]
                  My blog: http://icandpne.wordpress.com
                  1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                  Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                  Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                  Comment


                  • #10
                    Elamar - botox

                    I am really impressed that you are able to get off pain meds. I am on a Fentanyl pain patch and before that was taking hydrocodone (Norco, which is like Vicodan) for several years. I would be crying without pain medication.
                    But yes, the way it affects your bowels is a real drawback. I am always having to watch for that and use Miralax. I have a friend with IC who takes a tablespoon or two of mineral oil every night. I've tried that too. These are better methods that harsh laxatives and you can do them on a more regular basis. But it is no fun.
                    I am so glad your bruising is going down - that must have been a shock. You will know a lot more when you start PT too.
                    I am hopeful that my own flare, which started two weeks out from the botox and may be totally unrelated, goes away soon. I need to get out of bed and off the couch and start moving around and exercising again, but for now that is impossible. So is sitting. Hopefully I will be posting some improvement soon.
                    Thank you for posting your experience and keep us updated.
                    - Sharon aka ICsmiles
                    [SIZE="2"][FONT="Lucida Console"]
                    My blog: http://icandpne.wordpress.com
                    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                    Comment


                    • #11
                      Amount of Botox

                      Hi, I am having my first Botox treatment into the bladder - 20 to 25 injections under IV sedation and pain meds. I had it injected into the vagina twice before four months apart with nothing, nada, not even an aspirin!! It was the worst experience of my life. I tell people I am not sure what was worse - that or the birth of my children! But this time this urologist assures me that her patients are comfortable under the sedation and pain meds.

                      Could I ask how much of the Botox you had injected? My doctor first mentioned about 100 units (I am not sure what the right description is.) then she wants me to get 200. I feel I would rather have a smaller amount injected the first time because I have a problem with medications and retention. My date is May 22 so I don't have much longer to wait.

                      Thanks for any further info.

                      Louise

                      Comment


                      • #12
                        Louise-Amount of botox

                        Louis,
                        sorry to say I do not know how much was injected, but I will ask my doctor when I see her this week. This was into the muscles of my pelvic floor, not into my bladder itself.
                        Also, I reported here that I have flared since then. Well, we found out I have a bona fide UTI - bladder infection. So I am on antibiotics for that and starting to feel better. I swear, this is the only disease where we are GLAD when we find out we have a bladder infection!!!! Because at least that is fixable!

                        Best wishes on your botox treatment and please post how it works for you. I am curious as to why some people get it in their bladder and others into the pelvic floor muscles.

                        When you post your experience, it might be better to start a new thread so we are sure to see it. I read everything in this botox section and I am sure others are too, now that more and more of us are having botox! Thank you!

                        - Sharon aka ICsmiles
                        [SIZE="2"][FONT="Lucida Console"]
                        My blog: http://icandpne.wordpress.com
                        1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                        Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                        Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                        Comment


                        • #13
                          ICSmiles

                          Thank you for your post! Sorry about the UTI, but at least as you say it explains your symptoms. After what I went through a few years ago with the Botox, I am not too concerned about this treatment with having sedation and pain medication. I am putting so much hope in this treatment as the last thirty years plus have really taken their toll on my husband and I looking for at least some relief from this severe constant pain. Today I hope to see my doctor for an injection of Morphine to give me a little respite from the pain.

                          I will take your advice when I post after I have the Botox on May 22 and will start a new thread. By the way, I am partial to your name! Louise is my middle name.

                          Sincere thanks,

                          Louise

                          Comment


                          • #14
                            almost two weeks out

                            I just wanted to post a quick update. The last week was pretty much hell! I spent one day vomiting which was awful. I just have bad vaginal pain. I have to agree with what someone said earlier - I think recovering from childbirth even with episiotome was less painful than this! I also suspsected a uti or yeast infection. Sometimes they are so close it can be hard to tell. I live too far away from the doctor to go it, so they did give me a five day dose of levaquin to try. So I took that and diflucan, and injected with zazole yeast cream. Just basically bombarded it all! Today wasn't too bad! The burning bladder and urethra I was having have calmed down alot. I still have some generalized bladder burning but not so bad. I was even able to take a good walk today during my daughter's soccer game. When I was walking I was having some intense urge to pee, but just pushed myself to keep going. I finally reached a bathroom and peed out a good amount of urine. I then walked a second lap, again fighting urge all the way, and when I reached the bathrooms again, peed out a good amount of urine. So I am hoping to keep up the walking on a daily basis hoping the urge will subside. Overall, I don't have any major improvements in my conditon, but am hoping things will change in the long run. I have my first follow up with the doctor on May 5. I honestly don't know how much botox I was injected with. I was not injected in the bladder - Along the left side of my vagianl wall and across my back on the left side and into the pudenul nerve group in the middle of my back. The back pain has been very mild, it just the vaginal pain killing me. But it is starting to subside. I hated giving up the pain meds, but I can't risk the constipation coming back. I'm slowly getting back into life, just wish I would have been better informed about recovery time. I'll post again after my follow up because I know alot of you have asked about how much botox was used. Have a good day.

                            Comment


                            • #15
                              ICSmiles

                              Thank you very much for the PM. I was sorry to read you have a UTI but as you say at least it gives a reason for the pain to be so much worse and hopefully once you have been on the antibiotics for a few days you will begin to feel better. What warped minds we have when we are actually happy to find out we have a UTI!!

                              If you would like to e-mail me anytime, I would really appreciate that since I am having my first Botox injections into the bladder on May 22 and would benefit from your experience even if the place of injection is different. As I mentioned earlier about four years ago I had Botox injected into the vagina twice four months apart but it didn't help me. So I am hopeful I will get more pain relief with the injections going right into the bladder.

                              My address is: [email protected]

                              I see you are in the LA; as you can see I am in Canada - Edmonton, Alberta where it is only 4 degrees C with light snow. At this rate summer will come in June!! Many thanks for your support and understanding - 30+ years coping with this miserable disease has been very difficult and if it were not for my wonderful husband and family and friends I don't know how I would manage.

                              Louise

                              Comment

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