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  • Opinions Please Please ?

    Hi guys. I went to a pain clinic yesterday for the first time. I'm set to start the TENS on May 3 and also get a nerve block the same day. I'm not nervous about the TENS as I work in rehab and have hooked myself up to it on my arms just to see what it feels like. But I am nervous about the nerve block.

    Needles and shots don't scare me. But I've read some of the threads and it sounds like people have more complaints than praise when it comes to these. I'm scared of doing something that could cause retention b/c a few people said that. That's the worst!! Nothing hurts me more than retention. My biggest concern is that I'll make myself worse instead of better.

    Even worse, I started BAWLING in the doctor's office and I think he thought it was b/c I was nervous about the spinal. Whatever, I'm not. I'm nervous it'll cause side effects that I seriously regret. Plus I seriously hate getting undressed in front of a room full of people. [yes I'm 30 and have never had kids, I guess I need to get over it]. I'm very embarrassed that I started crying. Whenever I talk about having IC I seem to start crying. If I don't talk about it, I don't get emotional. I felt really stupid. He thought I was afraid of needles but I'm not....I'm afraid of awful side effects. I even told him and he said, "You ARE scared of the needles." But anyway....

    Is there someone out there who can describe to me how this all goes down? Like I know about the IV but can someone tell me what position I'll be in---on my side, sitting up, or laying on my belly? He said that it would be done in X-Ray. Also, how low down exactly do they place the needle? Like in my butt crack or in my lower back? Sorry, I just want to be able to prepare myself. He showed me on the model but I don't know where that corresponds in real life. Which I should as I am a therapist and work in rehab. But I don't deal with the spine in this type of manner.

    Also please tell me your opinions on whether or not I should go ahead with this, especially if you have a had a nerve block yourself.

    I am struggling with whether or not to go through with it.

    I made the appointment thinking I could cancel it if I changed my mind. I def plan on doing the TENS.

    Thanks everybody!
    Lee Ann
    Current Rx Meds:
    Atarax, Ditropan, Elmiron
    Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
    Hooray for babies!
    Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
    Didn't work for me:
    Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
    IC (Mod-Severe) since 1996

    UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


    My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

  • #2
    Hi! I am probobly not the best one to answer this, since I think I am probobly one of the "bad results" stories you have read, but I will take a shot at it, since there arent any replies so far.

    I do go to a pain clinic, and yes, I have had 2 nerve blocks. I posted about them, and it may have been my post you read about it causing me retention. However, I do want to say that I am here everyday on the ICN and I have only read of this happening with a few people. For all the ICers that have tried nerve blocks, there arent a high percentage that have retention as an outcome. But it is a possibility.

    There are different kinds of nerve blocks, and the location of needle entry depends on the type you are having. I had a Hypogastric Plexis nerve block. For this, I had to lay on my stomach and the inserted the needle at the bottom of my back on one side, kind of near my bottom, only a tad higher. For me, it felt like a normal shot and was not that painful, though this seems to vary from person to person.

    They used a machine to guide them to make sure they got the right nerves. They put in an IV first, then they gave me something in the IV to make me relax, plus Zofran. (I am not sure what else was in there.) Once they got me back in the room, it only took about 10 min. Then, I had to wait about 45 afterwards before they'd let me leave. They also make sure you have a driver.

    For me, I had some pain relief right away. (Not complete, but it brought down my pain a few degrees.) But, the problem for me is I went into complete retention after about 3 days. I couldnt go at all! This was before I was doing the instills at home, so I didnt have caths there. I had to go to the ER. They cathed me, but they thought it was just a one time thing, so they didnt send me home with caths. So, several hours later, I had to go back. This time, they gave me caths.

    I had to self cath for about 10 days. I couldnt go at all w/o cathing. It was scary. The pain clinic said they'd never heard of anyone having retention from a block and said it "must be some IC thing". My IC Dr. said that HE had heard of them causing retention in some patients.

    Well, the real problem was the clinic had me scheduled for ANOTHER one 2weeks from my 1st and WOULD NOT cancel it after I had that reaction! They said that it must have just been a coincidence and "an IC thing", and reiterated that they had never seen that happen with anyone but me! They had me over a barrel b/c they were going to drop me if I didnt do another one, and I desparately needed pain meds. So, I thought if I could go thru that torture again for another 10 days, at least then they couldnt say it was a fluke!

    So, that's what I did. And yes, it happened again. Same thing all over again. And yes, they wanted to say the 2nd time was a fluke too, and actually tried to make me do a 3rd one! The only way I got out of it was I had to have my IC Dr. fax a letter to the pain clinic telling them that he was strongly advising me not to do that again as it was worsening my condition and putting my health in jeapordy.

    Thank God, that did the trick!

    Anyway, though my experiace was horrible, at least now that is one more thing I have tried. And most ICers dont have go into retention from them. For most, if they dont do another one, it is b/c it didnt work for them, or the blocks were too expensive, or it was too incovienent to do them or something.

    I also have heard of several people who have gotten relief from them. You really cant tell how you will respond to them until you try them. You never know, you could get alot of relief from them!

    Dont let fear of retention hold you back, it is a pretty rare side effect. If you have read that problem in more than one post, go back and see who wrote about it in each post. More than likely it was me, or maybe one other person. I honestly havent seen that many posts about it, but I have written about it a few times, when someone has asked. But, pls dont go on my experiance!!!

    The other thing is, so many pain clinics will get mad if you dont try non-pharmaceutical things they want you to do, and some end up dropping people. The reason for this is that they make $1400-$1600 on doing a nerve block in 10 min. The Dr. is only making $70 or so on the same 10 min in an office visit. So, they can make a killing on nerve blocks. That is why mine was pushing them so hard on me. Hopefully, most pain clinics are not that unethical, but I know mine is not the only one that is that way...I have read about lots of pts whose pain clincs are that way too. (I am not saying that you should be bullied into doing something you dont want to do, but I am saying that make sure you have a back-up plan going in and can still get the meds you need, if yours does turn out to be this way! It is always best to be prepared!)

    I dont want to make out pain clinics to be the devil. I have been helped alot by mine. I dont know where I'd be w/o my meds. I dont know anyone who isnt being helped alot by their pain clinic. I also dont want to make the nerve blocks out to be bad....as I stated many ICers have gotten alot of relief from them. I was only relaying my own experinace.

    Anyway, I hope this helps. I also hope that someone with a good story about nerve blocks will post it. I wasnt going to respond b/c I think you truly need to hear a good story instead of mine. But, since there werent any other replies yet, I wanted to answer your questions.

    Hope this helps!

    Hugs,
    Amy

    Comment


    • #3
      I think my nerve blk is the kind your having. My Dr called it a sympathetic nerve blk. I didn't get anything to calm my nerves but I did get any IV just in case they needed. I layed on my tummy--didn't even get undressed. I wore loose sweat pants and just pulled them down to expose my bottom--nurse said I had a perfectly heart shaped bottom . They had some kind of ex-ray thing underneath me to see where the needle needed to go. I was numbed first which I didn't like--they were down about 2" into my crack. Then he went after the nerves--thru my tailbone. I could feel the pressure as he pushed thru--a lot of pressure. This part didn't hurt. Then I was done. It didn't take very long. My tailbone hurt for about a week. I had a hard time sitting. After all that I didn't have any improvement. My Dr wanted to do a series of them but he didn't want to treat the daily pain. So I've moved on to a new Dr and she hasn't said anything about nerve blks just more physical therapy--I'm okay with that. Let us know how your procedure turns out.

      Comment


      • #4
        thanks guys

        Thank you guys for replying. Whew...I feel better knowing how this will all go down. Just knowing helps my anxiety level! I *think* I will go ahead with it and hope for a good result. I'll definitely keep you guys posted on how it goes! Thank you soooooo much!!!
        Lee Ann
        Current Rx Meds:
        Atarax, Ditropan, Elmiron
        Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
        Hooray for babies!
        Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
        Didn't work for me:
        Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
        IC (Mod-Severe) since 1996

        UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


        My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

        Comment


        • #5
          I've had so many nerve blocks. I have had several different types. It depends on where they feel they would get the best results. Your questions and concerns are very important in this process. I encourage you to take those same questions and call your doctor with them. It will help to ease your fears and anxiety if you know what will happen. A good Doctor will have no problem answering your questions.

          I will describe my last block to you for an example of how one is done. Needle placement is all dependent upon where your pain is an the preferrable technique of the doctor.

          I go in 2 hours before. They take my medical history. Then they do an IV. The Doctor is notified that I am ready. Then they take me to the guided imagery or cat scan room. They have me lie on my stomach for my blocks (I have Pudendal Nerve Block mostly) Then they put me to sleep with sedation. I wake up in a recovery room in the Radiology Department. The needles are placed in on butt towards the inside. They put band aids on them which is how I know where they have done it. The I stay in recovery for about an hour or so and I go home.

          If you have any more questions, feel free to ask away. I hope your doctor answers your questions in better descriptive terms for you.

          Good Luck with whatever you decide on doing.

          Kara
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

          Comment


          • #6
            I have also had many nerve blocks. At least 9. I never had any problems with them. Some relief at times with the IC but not a lot. I did have them for a herniated disc and they helped a lot. I would try it.

            Every pain management office I have been to always suggest the nerve blocks first.

            Ginny

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