Announcement

Collapse
No announcement yet.

Have 2 Interstims, now can work 90 mins. a day

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Kara
    replied
    Susan,

    I would love to be a phone buddy as well as in person. You can try to email me but it does not always work. My email is [email protected] If you want to catch me online my AOL instant messenger name is karacoon76 and my Yahoo Instant Messenger name is kara_reese

    I have another appointment with Dr. M on the 12th. He's not familiar with the surgery I had done on me as he does his neobladders in a different fashion. This is why he is having trouble helping me. He sees 100+ patients a week, I feel like just a number at this point.

    It was hard for me to leave my surgeon whom I saw for 3 and 1/2 years. He removed my bladder and then I had to move back to this area 3 months after. We talk on the phone about my treatment but it differs somewhat from Dr. M. I am stuck between a rock and a hard place as to how to proceed with my health. I need TOP quality care and I believe Dr. M may have it but I don't know him yet and he doesn't know me either. My uro/surgeon Dr. Friedman in Natick, MA was like a father to me. When I was in trouble he would always be there for me. Dr. M does not know me like this.

    I am scared, sad, and depressed.

    Sorry to unload..........

    Kara in NY [img]frown.gif[/img] [img]frown.gif[/img] [img]frown.gif[/img]

    Leave a comment:


  • SusanC
    replied
    Thanks to all who replied! To Teri and others with interstim site pain....it may be worth a try for the foam trick. I told how we did it in my letter above...but forgot to say that the foam was cut in a 7inch by 4 inch size...we just made an indent the size of my "bump" in the center....then we left the center thick and slanted the sides of the total piece of foam. That way the thick foam in the center protects, while the slanted parts prevent that "squared-off" look at the top of my butt. My underwear holds it in place. Oh, and every so often I have to make new ones, since my body weight (I would NOT be without them when lying down on my back to read, rest or watch TV) really compacts them after a while.

    Hey, you laugh....but these hunks of foam really protect the site from chair backs, clothing pushing on it, and even when leaning against something.

    Kara,
    I don't know what to say!?! Dr. Mayer is and has been the most compassionate doctor I have ever dealt with. He keeps up on the latest treatments and research and is really willing to work as a partner with me. Please let me know if you would like to get together or if I can help in any other way....for example, being a phone buddy.

    Best wishes to all,

    Leave a comment:


  • deborah b.
    Guest replied
    I have one interstim in and is turned off and I am getting pain in back of my IPG site. Plus I have gooten shocked a couple times behind my IPG site. I think there is something wrong with the device!!!!

    Leave a comment:


  • Kara
    replied
    Susan,

    I just moved back to the Rochester area and I'm NOT happy with my new Doctor. Dr. Mayer at Strong. Who are you seeing and are you happy with it?

    Kara, back in Rochester.
    [img]frown.gif[/img]

    Leave a comment:


  • Teri
    replied
    When I tell my uro I still have pain at the site where the test wire came out he just stares at me [img]confused.gif[/img] Well, I've lived with this fanny a long time and I know that's a new pain [img]biggrin.gif[/img] It sure will be nice when the first uro gets an implant so that they know exactly what we feel like. ESPECIALLY at this time of the year with the weather changing every 20 minutes!!!!! My butt cheek talks to me more than anyone else does [img]wink.gif[/img]

    Leave a comment:


  • ICNNINA
    replied
    How funny! Good idea tho. I have pain at my site and often have the clothing problem, as if IC belly isnt enough to deal with! heh!
    You may be onto something! You will all love that my doc says I shouldnt have any discomfort there now! Baaaaaahhhhh ! what a joke! LOL
    Hugs , ICNNINA

    Leave a comment:


  • Teri
    replied
    Susan~sounds like you guys have invented a fanny bra <img src="graemlins/eek.gif" border="0" alt="[eek]" /> <img src="graemlins/eek.gif" border="0" alt="[eek]" /> <img src="graemlins/eek.gif" border="0" alt="[eek]" />

    Leave a comment:


  • Amanda
    replied
    Susan,

    I am so happy this opprutinity has come into your life!

    Amanda
    (a single interStimer)

    Leave a comment:


  • mary a
    replied
    I'm very very lucky not to have pain on the interstim sites!!!!!!!!!!!!!!!!!

    Leave a comment:


  • SusanC
    replied
    Teri and Mary,
    Thanks for your replies. Teri "double butter" is such a clever way to describe having the 2 implants. Believe me, I am NOT without pain, or, most of the day even lower than a 6. Oh, back to the "double butter"...to prevent pain from my clothes pushing against the implants (especially the last one) I have to wear pieces of hollowed out foam over the implants. <img src="graemlins/eek.gif" border="0" alt="[eek]" />

    The left is a thicker piece than the right....So, of course, I have these HUGE bumps on my butt. Ah, well, I just figure the large bumps at the top of my butt help to balance out the droopy part of my lower butt. LOL


    But the foam really does help a lot! My Dad designed them after my husband's idea...we just cut up an "old" (read "squished") IC pillow. He used an electric saw-toothed knife to cut the foam. Hey, maybe we can sell these on the ICN!

    So, thank you, Teri "single butter" and Mary "another double butter" for your replies. Hope that other Interstim patients can get some ideas from these posts and realize that humor really does help!

    Hey, who wants some foam "booty pillows"???
    <img src="graemlins/jester.gif" border="0" alt="[jester]" />

    Leave a comment:


  • mary a
    replied
    I'm very happy too that you have this wonderful job and some relief with the 2 interstims and pain meds.
    I also have 2 interstims, the first one was implanted on october 2001 and the other one on this september. Finally my frequency is much better with 2, I did not found relief with just one, and after a test in the other side I had a good relief. At the same time of my surgery, my doctor revised the first one because it made my leg move a lot when I was lying down.
    I am very happy, and I don't have any pain or movement in my legs. I hope eveything continues as now for a long time. The only thing that my doctor is trying to help me is with my urgency, I started taking Detrol XL to see if I get better, because is so strong that I have incontinence. If I don't get relief he wants me to try biofeedback so that I can control my pelvic muscles and prevent the incontinence. Has someone tried biofeedback? what is it like?

    Leave a comment:


  • Teri
    replied
    Susan! I'm soooooooooooo glad that you can now participate for a few hours each day in the REAL world [img]biggrin.gif[/img] I have had to bury that dream or it was going to bury me.

    I ain't lettin' nobody slice open the other cheek <img src="graemlins/eek.gif" border="0" alt="[eek]" /> and this last surgery has left me with more pain than what I started with so it makes me so happy to hear when even the tiniest of good has come to someone [img]biggrin.gif[/img]

    tons and tons of hugs you double butter [img]wink.gif[/img]

    Leave a comment:


  • SusanC
    started a topic Have 2 Interstims, now can work 90 mins. a day

    Have 2 Interstims, now can work 90 mins. a day

    My doc put in one on the left and one on the right after we had tried every oral med, DMSO, heparin/lidocaine, and marcaine instillations. Had the right installed in October 2001, and the other in April 2002. Tests done in fall 2001 and spring 2002 showed that I would have near;y complete removal of pelvic pain, the main symptom.

    Well, you guessed it....the 2nd interstim gave some relief of pain, as long as I take the same pain meds...Elmiron, Vioxx, Neurontin (3200mg per day) and Ultracet. I still do 2 marcaine instills each day.

    Is it enough pain relief for me?? I wish, in a better world, that it was more like the tests, so I could give up at least some of the pain meds, but it's not to be. However, I can now sit and stand, as long as I alternate positions often, without as much pain until about 3 PM.

    By some divine intervention, a teaching job opened up which allows me to work from 1 to 2:15 PM. I am so blessed...the school district told me that there has NEVER been a job with such hours before this year. The school is just 7 mins. drive for me, which is good, since pelvic pain comes with a vengeance if I drive more that 10 mins. I'm using my special ed certification (used to teach 8th grade science) to teach reading and writing to 4th and 5th grade students with learning disabilities. By the time I get home I MUST lie down to relieve the pain. In fact, it's a joke around here that about every penny from this little job is being used for take-out food....but my wonderful hubby doesn't care.

    The good thing is that I will not lose disability, since they subtract all the pain meds and equipment you use in everyday life from what you make. In my case the co-pays for drugs, etc. are $300 a month.

    I am so happy....seems like all of the studying I did during the 2 1/2 years I was out on medical leave had a purpose. It helped to keep my sanity, even though at times I had to reread things 4 or 5 times 'cause of what the meds and pain did to my memory.

    The point of this letter is to let you know that it may take time, but with lots of support and prayers, you may find the combination of therapies that at least works well enough so you can get back some of your life. In my case, it seems that many factors helped to allow me to return to my love...teaching kids. Hang in there...life is beautiful, as long as I'm careful to take care of myself.
Working...
X