I have severe chronic pain in my back, hip, right buttock, thigh, knee, calf, foot. Much like Siatica but much worse as all nerves below injury site in mid to lower back are effected. For example,in my right thigh both the outer cystic nerve & the inner nerve that runs just under your carotid artery to the inner side of your knee are both equally severely painful. I have had a myriad of major surgeries, none least ng less than 7 1/2 hours & the 1st over 13 hours with 2 neurosurgeons working. It was in this surgery that I actually woke up, eyes were taped, on stomach, rear end in air, unabated, I just remember hearing the Anesthesiologist yelling oh s**" he's awake, I was screaming in unbelievable pain & trying yo pull out the tube that felt like it was chocking me, I did pull out my blood pressure vein implant, and broke out most of my fro t teeth while cracking my molars, I now have to have a full mouth extraction & all on 4 put in. (Thank God they now have the All on 4 implant style, I have I molar left to eat with. I had to laugh at myself the other day, 20 years of hell & I forgot for a minute that I have nothing but numbness on my front bottom & 1 white front tooth, & another that looks like a dizzy vampire tooth...and I picked up a piece of pizza, put it into my mouth, and tried to bite it in half and with my mouth closed I pulled the piece back out whole...Anyway, tried everything, was misdiagnosed for 2 years as a torn muscle that will heal up in a year, it had already been one, but, heal in a year with PT & Pain meds to manage pain. Well later found that I had torn/ripped 6-7 discs & injured permanently my sacroiliac joint, and my final diagnosis from my lead neuro/ortho-Surgeon: "Permanent Severe Nerve Damage, especially in, but not limited to, the sacroiliac area. Also, Failed surgery, & no surgical solution" Although, in all of my surgeries they found holes leaking spinal fluid, which they sealed, large bone spurs, etc...one they found in my final surgery that didn't turn up on x-ray; MRI's & CT Scans, that my surgeon called the biggest he or his college had ever seen, even in photos, wish I had it, but they had to remove it in sections turning a 1q 2/2 hour surgery unto over 8+ hours. On this surgery they tried to open all nerve pathways, found & fixed 2 more holes leaking spinal fluid. Why did I text all that, for this. All my life, before injury, I've been opiate resistant. Even as a 8 year old getting a small filing taken care of I bit (no blood) the dentist, he yelled at me font to that & I said I didn't mean to it hurts too much, to which he looked wide eyed & asked, "You can feel it?" I of course said "Yes", he gave me 6 more shots told my mom & me that's all he could risk, so I dug in my nails in the chair & he drilled & filled as fast as he could.
Ever since, as he told me to do. I've always told my Dr.s that I am very opiate resistant. I've had of around 9 Drs. Maybe 1 believed me, no, They thought I was just an addict wanting more & higher doses. Why? I hate his opiates me feel- Terrible & that don't help the pain or its very little. I'll cut this short. The only thing that seemed to help very the years was either or both Fentanyl & or Buprenorphine in huge dosages. Anyway, my surgeon had trued a catheter to my spinal canal on my final surgery, continually dripping 90% Fentanyl, & a few other pain meds, & it helped, the first & only surgery I woke up from, not screaming my head off. I still had pain, but more in the 4-5 range not the 9-10+ I was chronically at. I had to have the catheter removed before I left the hospital. I cried, begging my surgeon leave it in. But, the FDA at that time only allowed Fentanyl intracatherally if you where continually monitored in the hospital. So, no taking it home. They put 2 100 MCG patches on, gave me a bottle of Norco/hydrocodone 10/325 2x 4-6 hrs. Soma 1-2 x 6 hrs. Xanax 1 mg x 6 hrs (new to my usual bag of meds & it did seem to help some, although the withdrawals sent me with seizures to the Emergency room, worst hell I've ever been through). Anyway, I told my present pain mgt. Dr when he asked, "What seems to have worked for you in the past?" "I told him Fentanyl at high doses for pain & soma for muscle spasms. This was after 1 1/2 yr.s of him finding out I have to have a lot higher dosage fit the same effect of a normal person. Still had to go thru all the evaluations, finally after almost a year if failures, he allowed me to try Sufentanil (Sufenta brand name), Just got a fill up & turn up from 25 MCG to 42 MCG, the most the pump specialist could do, its barely beginning to help, supposed to be 500 tines stronger than morphine, I can eat & drink morphine, does nothing. Just wondering if anyone else out there using Sufentanil in a continual drip thru a pain pump for severe nerve pain? How much does it take to really help. My pump specialist says, you can't miss it, when we get you there it will be dramatic. Nothing from PRIALT to Dilaudid did anything but make me sick (PRIALT, non-opiate). Anyhow, any comments on Sufentanil or even Fentanyl patches, still wearing a 50, leaving old 50 on. Change every 48 hours, works a little for about 24-32 hours then off the cliff into pain & withdrawals...Thanks.
Is anyone taking this ziconotide ? What side effects do you have? ## Hello, Lucille! How are you? What side effects are ...1 REPLY
My dr changed my intrathecal pump med from fentanil to sufentanil 5 days ago. The change hit my system on Thursday morni...2 REPLIES
Has anyone had their pain pump changed from moriphine to fentynal? I had a medibalic pump implant done may of 2013, afte...3 REPLIES
what does anyone know of pain pumps and what drs in new jersey use them ## There is no listing of doctors that use them....2 REPLIES
I would like to talk to anyone who has a pain pump with Dilaudid. My mother has a pain pump and I am worried she will be...74 REPLIES
I want the pump taken out and to be put back on oral meds... Can they fill me with saline and wean me down orally? I don...5 REPLIES
Hi everyone, My mom has a dilaudid pump thing. I really don't know much about it in terms of dosage or anything. She...2 REPLIES
Has anyone out there come off of fentanyl delivered thru a pain pump?? I've gone from 1.9 mcg/day to .385. At what p...1 REPLY
hello can some one help me please I was on oral meds had pump implanted on me the doctor has it set at 0.5401 with a 0.0...
Here is a link to help find local pain management Doctors.... medtronic.com/patients/chronic-pain/living-with/index.htm ...7 REPLIES