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Unread 12-14-2003, 07:45 PM
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Sorry I haven't visited in so long...it's the stubborn side in me showing it's ugly face. Here I am thinking I can get through this alone and that somehow it will eventually go away, but alas, it hasn't. :cry: I've no more surgeries to report, but I've recently found a new Dr. who I'm going to let take over my pain management and who's going to do a nerve block after the holidays. We would have started sooner but I'm going away for a couple of weeks during the holidays and he doesn't want a break in the treatment. So, I feel like this is my last hope and I pray that it will work.

At first I was very afriad about it but after I spoke with this Dr. about it some more I felt much better. He's not the same Doc I saw last year when I first found out about this type of nerve block (the Hypogastric plexus) but he's real good friends with that Doc. I realized I felt very dismissed by that first guy and there was really no way I wanted him working on me. This guy made me feel very comfortable and did well explaining the procedure to me. He also had recommendations regarding my medication etc. But, he flat out told me he's not going to prescribe the level of vicodin I've been getting from the other doctor who's been handling my Rx treatment since I got back from the Mayo Clinic in April. I've been told several times I'm taking lethal doses and I told him it just gets to a point that you don't really care what it's doing to the rest of your body, you just want to be out of pain. So, we'll see what he does to keep me out of pain for the holidays. And I get to play the Rx game through the holidays because I'll need more pills while I'm gone so I'll have to hope the pharmacy will give me refills early. I hate being at someone else's mercy for this stuff. I feel like a total junky.

So, that's where I am. I've met a really nice woman from this site and we keep in touch from time to time via email and I recently sent her one telling her how alone I feel sometimes and how I've lately had suicidal thoughts because I just know I can't live in this amount of pain for the rest of my life. But then I feel bad and selfish because I know there are people out there who are worse off than me. It just gets to be so hard when you're stuck in the middle of it. So, I thought I'd come back for the terriffic support HS has to offer. I know I'm not alone here and I appreciate that!

The tears come so easily anymore. I feel like I've tried so many things and have spent so much money just trying to get better but to no avail. I just hope this nerve block thing works. This Dr. has other recommendations beyond that so at least I know this isn't a last option, but of course each one is more traumatic. This is definitely no fun. It's really just a matter of finding the will each day to get up and keep on keepin' on. It's tough sometimes.

Well enough of that. Here's to having a wonderful holiday season for all of us and a better New Year! I love you all!
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Unread 12-15-2003, 07:30 AM
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Dear Stacey,

I am sorry you are still having pain...

I had my TAH on 8/5/02 and am still having pain too ... lately it has been worse than before the TAH. I saw two Gyns at the Mayo in Scottsdale recently and they seem to think I am still having trouble with endo... I am having surgery (PSN and possible endo stuff) Feb 4th at Mayo. Is that where you went?

I wanted to let you know that I had a series of two superior hypogastric nerve blocks done by a pain management doctor. Both times I had great pain relief but only for the duration of the anesthesia (2 hours were great and then it wore off after that... so by 4-5 hours out I was back to "normal"). He was hoping they would have a longer lasting affect because a doctor I saw before that (A pelvic pain specialist in Denver) had suggested I had neuropathic pain problems.... if that is the case sometimes the nerve blocks can be like "rebooting the PC" and you can have pain relief for days or weeks... not always with the first one apparently so that was why I had the second one.

Since the nerve block worked but only very temporarily it was suggested that I have a presacral neurectomy done... which is what lead me to the Gyn/Onc at Mayo. That doctor is not convinced it will be helpful but since I had good success with the nerve blocks he thought it was definately worth a try.... he also had me see his associate who seemed to think that I still was having endo troubles because all the very bad pain is from areas where I had endo found in the past.... so who knows.

Let me know if you have any questions about the nerve block... I couldn't tell if you had them done before and if they worked or not.

Many s

Unread 12-15-2003, 12:01 PM
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I'm soo sorry things have not improved for you pain wise My Pain Drs attempted the Hyper Gastric Plexus block on me but we encountered some complications & had to stop. I've underwent numerous options at releiving my pain or attempting to..I've had Trigger point injections, epidural injections, Massage therapy, Physical Therapy, Traction, U/S Therapy, 3 diff't types of Nerve Blocks, TENS unit & more meds than I care to remember The only thing that has truly helped has been Narcotic Pain meds. I have been on them continously for the past 4 yrs. The only thing lethal about the Vicoden you are prescribed is the amount of Tylenol you are getting in a days time?!? The limit is 4500 anything over that can cause liver toxicity even using it long term can cause this:-( Narcotics themselves do not cause this problem as a matter of fact, accorrding to many studies they are safer than many OTC pain relievers & carrry no known long-term affects. The prescribing of these in non-malignant chronic pain has become quite a controversary due to the abusers & drug diverters This has caused the DEA to step in and monitor certain Drs prescribing practices & in turn causing Drs to fear using these. Here is some info on Chronic Pain; treatments, options ect..I hope it can be of some help to you:

Coping w/ Pain that wont go away~Invisible Disabilities:

Chronic Pain & relief:

Pain Mgmt:

Tips for Chronic Pain Patients:
  • Inform your doctor or nurse that you are experiencing pain. Don't wait to be asked! Pain should be evaluated at every visit. Inform your doctor or nurse that you are experiencing pain. Don't wait to be asked! Pain should be evaluated at every visit.
  • Keep a diary of your pain – where it is, when it begins, when it peaks, when you take medications, and what helps relieve the pain.
  • Be precise when describing your pain. Use words like sharp, radiating, aching, pounding, prickly, tight, deep, stabbing, dull, pinching, and tingly.
  • Report the severity of your pain. On a scale from 0 to 10, where 0 is no pain and 10 is the worst pain you can imagine, how would you rate it?
  • Take your medication exactly as prescribed. You may be taking several medications. Be sure you understand when and how to take them, and report any side effects – they can be helped.
  • Take medication before pain builds up. Pain control is harder to achieve if it is allowed to build to a severe level.

The Most Important Thing to Remember: Pain Can Be Relieved. There are many options for you and your doctor to choose from when trying to control your pain, such as different dosages, medication combinations, changing medications, or routes of administration.

If one is not working, communicate with your doctor and find about the other choices you have. Remember that you are the expert on your pain, and you have the right to have your pain acknowledged and relieved.
Overcoming obstacles to pain management: www.pain.com

Millions of people world wide seek treatment for chronic pain every year. On occasion certain medications, nerve blocks or physical therapy can make a big difference, however, in most cases a multiple-part approach to ending the downward spiral of chronic pain is required. Reversing this spiral is now commonly referred to as pain management. Pain management includes, not only medication, but also a comprehensive plan of relaxation, exercise and behavioral change. There is no magic bullet for relief of chronic pain. Managing pain is not about making the pain disappear, it is about keeping pain tolerable and there are several ways to accomplish this. Keep a Pain Journal: Record the various activities and therapies that reduce or alleviate your pain. A journal also helps track the ebb and flow of pain, so you are aware of them and know when the pain worsens and how to ease it.
The Necessity for Early Evaluation of the Chronic Pain Patient:

Good Luck in finding some answers & relief..pls remember your not alone in this


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