New to forum, NOT new to pain!!

Home Page Forums Welcome to The Pain Community New to forum, NOT new to pain!!

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    • #438521

      Hi everyone,
      I am joining this forum to find others with similar stories as my own.
      In Dec.2007 I was told I need surgery to fuse my L4 and L5 together due to a herniated disc. I was told that the surgeon would need to go in through my stomach due to my situation.
      Day of my surgery comes and my surgeon informs me that we have had a change of plans and are going to be doing a newer, less evasive surgery called an axialift. At the time I heard less evasive and I was all for it. What I did not hear was the ” new” part. Later I found out that my surgeon had not done this procedure prior to my surgery, and did not perform it correctly on me.
      Needless to say, surgery did not go so well. My surgeon was able to fuse the two vertebrae with a steel rod, however while doing so through this tiny hole in my tailbone he proceeded to push a portion of my herniated disk straight into one of my spinal nerve roots. (This was something I learned later). After surgery I was out on the regular recovery dose of pain meds and 8 weeks later found I was still in pain. In fact the pain now was WORSE than prior to surgery. My surgeon did another MRI and tells me that part of my disc is in my nerve root and a second surgery is needed to remove it.
      Feb. 2008 I have a second surgery, which was much more evasive. Upon entry my surgeon discovered that the nerve root has begun growing around the disc and it would be dangerous to remove at the time because of a great chance of paralysis. Instead he performs a laminectomy(spelling?) and removes the bones around this area to alleviate pressure on the disc. He then installs a cage of steel along with several screws to keep my spine together. This, however did nothing to alleviate the pain.
      Fast forward 12 years of pain management, starting out with Percocet only, then going through many others like Opana, Fentanyl patches, Oxycontin, ect. Then the state of Tennessee cracked down on opioids, and put a maximum dose Drs can prescribe monthly. I was WAY over that limit. My pain management Dr.told me the only way to get around the limits are through a pain pump being installed in my body and the medicine going into my spinal membrane.
      I had the pump put in about 4 years ago, and it was rough going from day one. They started with Morphine, it did not even cut a quarter of my pain and I gain a very substantial amount of weight. They then went to Dilaudid and I turned purple everywhere. If I would not have been in so much pain, it would have been hilarious. We then went to Fentanyl, since the patches worked for me, we thought the pump would too. I finally am getting about 50% of my pain relieved. With Percocet at the state level limits on top of my pump I am a functional human being. I am able to work full time ( however at times it gets tough if I have to sit or stand too long at a time). We continue to adjust my Fentanyl levels trying to maximize it’s role in my treatment. Ideally I would love to eliminate oral meds all together, but we have not gotten there yet, and I am unsure we ever will.
      However my story is not to discourage anyone, only to inform others that there are many treatments available for pain. We moved to 7 different states in the past 12 years, so it has been difficult getting good pain management Drs who believe your pain is real and is willing to help. I have had a few quacks over my time, and have been gone into withdrawal a couple times because of those doctors. I had one Dr in Alabama who refused to give me my meds ( prior to pump) unless I had useless procedures ( epidurals, ect) done monthly. They never helped, but the Dr needed to pad his bill. I reported him to the insurance company and was referred elsewhere.
      The fight is real my friends!! I have gone to Drs and pharmacies where they treat you like a junky, because even though they got into their professions to help, they really do not understand. Not to mention all the idiots making it impossible to get the proper dosages and treatments because they decided to sell their meds or abuse them. I hate that!!!
      Stay strong everyone,

    • #438549

      Heather, I am so sorry to hear about your struggle. I am also in a similar situation with my pain and have been through doctors, PT, hypnosis, CBD, tried smoking, etc. My nightmare was having my PMP calling me, asking weird sexual questions late at night, and I politely refused his questions just evaded so I could still be on my meds. I finally left PM a few years ago and have been in agony ever since. I moved ( divorced) and have not yet found a good doctors where I live.
      It is horrible living in pain… I feel yours! I’m sorry I didn’t have any advice but just wanted you to know that there are others suffering with you. Good wishes sent to you.

    • #439157

      God, this is terrible. I am very sorry. I do not have any advice for you , I have never struggled with such serious pain, I’m really sorry :((

    • #439851

      I am so sorry.

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