[jcrewrockstar]

This information, I came across this morning, when reading, and wanted to share. While everyone has to consider all treatment options presented, look at the potential benefits, as well as consequences, we, as patients, sometimes, aren't as informed as we should be or could be when it comes to information/data involved in making an "INFORMED DECISION."

The following information comes from Dr. H. Hooshman; known to be a pioneer in the filed of RSD. He founded the RSD Foundation, has since retired, but has 40 years of experience not only in the medical field itself, his specialities include(ed): Specialization in Intractable Pain, special interest/MANY published papers on Complications of CRPS/RSD and Neuroinflammation. You can google his name and find a variety of information; he even has his own EXTENSIVE website where he fields 146 questions about a variety of complications and myths regarding RSD The following is quoted directly from his own website in specific regards to the STELLATE GANGLION BLOCK:

"A stellate ganglion blocj is mainly a traumatic diagnostic procedure, not considered to be therapeutic because it tends not to last longer than hours to a few days post-proceedure.
When performing an epidural nerve block, you do not stick the needle into the nerve cells themselves, as you would with a stellate ganglion block. When an epidural block is performed instead of the SGb, with local anesthetic such as Depro-Medrol, in the back of the neck, it lasts,on average, 2-3 months.
The SGB is a complicated and highly specialized proceedure because of the anatomical variations simply from person to person. Not to mention, the block itself, can cause further trauma and damage to nerve cells, vocal chords (resulting in difficult speaking which may be permanent), and, can also rupture the blood vessels in the same or surrounding areas, causing the RSD itself to spread to other areas of the body.
According to the well-known, and established, not to mention, thought to be the best pain management doctor in the world), the SGB has a 25% failure rate and has significant and potentially life-altering/dangerous side effects/consequences for those who fall within that 25%."

jcrewrockstar

[puckster5]

i have been receiving guethedine nerve blocks in my hand for a year and a half. they usually give some relief for about 3-4 days. i get them once a week. my pain doc suggested the stellite block as an option. i was very hesitant as i have a fear of needles. mine was in the front of my neck around the vocal cord. i tried it 3 times once each week for 3 weeks. it made my voice hoarse for a day, my 1 eye droop and i was very sleepy that day.
i got no relief whatsoever. i would get the burning pain the very same day. as i said before, iwent back to the guethedine blocks, and i am still about 3-4 days with less pain. also, i take lyrica 1 pill at bedtime. i also use tylenol 3's as needed.
hope this might help.

[jcrewrockstar]

pucksters5,

I too, like you, had 3 SGB blocks done; one week apart. Mine too was done in the same area of the neck as yours as well. In different parts of US they use different meds during this proceedure, I am not sure if you were all the way under, or "consciously sedated." I was the latter of the two; things were kind of just "a little off" with my senses it felt like while under that anesthesia. The first block, I never felt the needle, but the IV spot was sore..I had pain relief for maybe 2 days. The second time, I had the droopy eye too (you feel like Chunk from Goonies a little), but for about 4 hours afterward, my whole right arm was completely numb. When you are right-handed, with a limp arm, you tend to forget and try to use it anyway; the strangest thing ever. I did manage to throw a Sprite in my own face...b/c I couldn't control my hand. I was glad when it regained complete feeling. Again, I had pain reduction for about 2 days. The third block, which is why I am biased a little, and or want people to be as well-informed as possible on the topic, is because the third block put me in that 25% failure rate. The doctor "missed the target", shall we say, and punctured a vein in my neck, I was left with a quarter-dollar sized bruise the next day, and more pain that I had ever dreamed I could endure. Within a month, post-proceedure, I had full-body RSD. This is a frightening reality that can happen and I just feel passionate about informing people; I wish I had been more informed myself back then, who knows what choice I would have made.

[puckster5]

sorry for your bad luck and having the rsd spread. its not something id wish on anyone. i too was semi conscious, but still scared as hell. i guess thats why they make you sign a waiver before the procedure. in a way, im glad it didnt work. the stress of the needle in the neck was killing me. i hate any needle and still have to look away when they put the iv in my hand for guethedine block. i just pray mine dosent spread. so far so good.
how did you get rsd? i amputated 2 fingers when the snowblower started on its own. since then ive had rsd. i live in oshawa,ontario canada. my plastic surgeon was the best in my area. i was sent for a bone scan real early, it confirmed the rsd. right away she sent me to physio and set me up with a pain doc. im grateful even though i got rsd from it. it could have been worse, from some of the stories i read here. e.g. the non diagnosis, not knowing, and some of the other docs out there. i go to the oshawa pain clinic, at lakeridge hospital in oshawa. so far they have been good. like i said it hasent spread yet(fingers crossed). the docs there are wonderful, and listen to what you have to say. example when i said the stellite didnt seem to be working, he agreed and went back to the guethdine blockks. all he said was at least we tried. its a strange disease, and he seems to be trying his best. the original blocks give some relief, if only for 3-4 days. also, i have a great family doc, who is trying his best with different meds to see if any work. both docs seem to be working together to give me more relief.
at least ive been covered through insurance at work. at first they tried the usual, give you so many forms and crap to try and not cover you. i always had the plastic surgeon fill out all the forms, which she did without question. remember she was the best around, so they couldnt dispute her findings. and theres noone better to dispute her claims. so it forced the insurance company to comply. i didnt even have to talk to a lawyer. recently, they sent me a letter, saying im covered until im 65 and go on agovt and company pension. im 42 now. it gives some relief knowing you can pay the bills. not get rich just pay the bills. i have restrictions for the rgt hand(no use of hand at work) so they have no job ican do. i work at chrysler and even if they go bankkrupt ill still be covered.
anyway enough about me. hope to hear back soon about your story.

dave

[jcrewrockstar]

dave,

Thank you for sharing your story. IT is always most interesting to me when people are willing to share their personal experiences, that, each, are unique, and what we all can potentially learn from the support and experiences of one another. So, I thank you for sharing your story. I am sorry to hear about your accident; I couldn't imagine. Talk about pain, I cannot conceive of how much pain the initial injury must have caused you!

I too hate needles. I remember taking a job, several years ago, and, as part of the training process, they had to take a couple of viles of blood (to test Hepatitis levels and such), and swear I started freaking out and almost quit then! I am terrified of them. I actually had one very insensitive doctor (the doc who did the last block actually), who was, without any respect or consideration to my fears of needles, which I informed him of, was cleaning the needles right in my only line of sight (which as you know with the SGB is limited). He was so rude and insensitive. Despite my telling him it was frightening for me to be there, to have the procedure done, fear of needles, he continued to stand where all I could see were his "tools of the trade"..it was horrifying. And, then, add to that, the spread of RSD thanks to his missing "the target"; it doesn't make me a big fan of him. But, I am almost positive that our countries are much, much different when it comes to healthcare and choices; I had few. Hopefully, the US has some reform on the way in terms of it's pitiful, ridiculous healthcare system.

My RSD started with something quite simple; a pulled muscle in my right shoulder. I was, at the time, working at a group home for teenage boys (ages 5-18) who were removed from their homes for many reasons: truancy, violence, had been arrested multiple times, were removed due to neglect or abuse, etc. But, many of these boys, from the youngest, all the way up to the oldest, were VERY violence prone. They had never been taught any other way to manage or express their feelings. So, for me, my entire 10.5 hour shift consisted of a lot of "therapeutic holds" done on these residents to keep the staff safe from whichever boy was acting out and or keep the other peers of that resident safe when they were assaulting/acting out aggressively. So, the holds were a very routine for me, and I actually was in great shape and quite strong at the time I was injured; at age 30. But, for whatever reason, after one particular hold, in August of 2007, my arm/shoulder area felt "not right" afterwards. I had, up until that point in my life, played basketball and soccer since I was quite young/had a soccer scholarship that paid for my education, and I was familiar with what fractures, and pulled muscles/whatnot felt like. This pain, this feeling was very unfamiliar. "Not right" is how I remember thinking about it at the time.

For two weeks I had the generic daignosis of just a sprained shoulder, but the pain was getting worse and worse by the day, despite me complying with the docs and just resting and taking NSAIDS. Finally, I went to specialist #1; a Cervical Spine Specialist. They thought, perhaps, the spine could be causing the pain I was feeling. Got the MRI results back, and, as it turned out, I had a couple of slipped discs in my cervical spine, but it was located on the left side. I had no pain on my left side; it was ALL on my right side. He said that what the MRI found could not explain the injury to my shoulder and or be responsible for the pain. So, I was referred to Specialist #2; an Orthopedic Shoulder Specialist. She sent me for a battery of tests: EMG, NVG, arthrogram with dye, triple phase bone scan. They all turned up nothing despite the pain growing more and more painful. I was scared and confused. All that I had was pain, which could not be seen, nor measured by any test. But, luckily for me, at the time anyway, this ortho BELIEVED that there was something going on, despite all the test results and wasn't ready to give up. She scheduled me to start PTherapy and come back in a month for a check-up. By the time, I had been having what I know now are flares in my right hand; despite the original injury being to the shouder. I explained it to the specialist as "the flood gates opening" as all my veins, from my forearm down, would pop out, all the way to my knuckles, and that burning, gasoline, burning feeling would present itself along with it turning bright red and hot. It was then she told me that I had, potentially, RSD. She referred me on to someone who had some experience in that department.

At the time I received the blocks, my right arm had "declared itself" and was likely, in that area, irreversible...something I dealt with everyday without fail. But, after that third block, things went downhill very quickly. I remember the day that my left hand first mimicked, to the tee, the "flood gates opening" in my right hand. I cried watching my body fall apart in front of my eyes; as the insurance company denied claims and delayed responding. As I said, within a month, I had RSD in my left arm/hand, and in biliateral feet. My feet, ironically, give me the most trouble these days.
For me, it's about, at this point, as the legal case moves forward, trying to maintain and manage my pain as best i can, stay active, mobile, and positive. I realize that my life is different, and sometimes, I desperately want to be normal; or be "who I was before." But, after truly accepting the reality that is, which isn't the prettiest thing to acknowledge, it has made it easier for me to keep on keepin on and look to the future......crossing fingers that justice, in the end, will prevail.

jcrewrockstar

[puckster5]

jcrewrockstar

thanks for replying. i too like to hear of other peoples stories. keeps the mind active.
the funny thing is, when it happened i had gloves on. i didnt feel a thing, i just thought maybe i should remove my gloves to see if i cut my hand. thats when i saw my fingers missing and my hand mangled. but still, no pain weird eh(sorry canadian....lol). fortunately, my neighbor was just pulling in to her driveway. i asked her to call 911, at first she thought i was joking. not until i raised my hand and the blood was going everywhere she realized i was hurt. she works in a hospital. she immediately called 911 and gave me a towel to wrap my hand, not realizing her baby was still in the car. i still thank her immensely. shes with the 911 operator on the phone and they are telling her to make sit still, raise my hand etc. shes still amazed at the fact that i told her i had to go inside and turn off the stove, as i had chilli simmering. also, i had to find my dog which was still outside and get her in the house(german sheppard). yet i still had to lock the front door etc etc. all the while shes frantite with the 911 operator. saying you have to sit down etc. unfortunately, i smoke and said ok ill sit when i get a smoke. i still sat in the hospital for 8hrs waiting for the surgeon. not her fault i kept getting bumped for more important surgeries. anyway, back to the pain, it never hurt for 3 days. weird eh. after the 3rd day the pain was immense. thats when the burning, ice cold etc set in. then the rest you know.

i hope you all the best with the legal stuff.
i too would like to be normal again. i relate to you because i have friends who work in group homes here in canada. i actually helped a friend turn a house into a group home for teens. everything from drywalling, emergency exits, bedrooms, firecodes etc. i was once a jack of all trades master of none....lol. many people used to call me for their drywalling, electrical, plumbing, decks, fences, renos, whatever. i was actually quite good at it. people would call and say they wanted my workmanship. gave me a sense of pride in my work. all the while holding a full time job 10 hrs a day. now my tools just sit there, as the pain from using them is too much.
talking with you has been great.
hope to hear from you soon.
dave

[jcrewrockstar]

Dave,

While I hate that eventually you felt pain, that is the strangest thing that, up until three days later, you didn;t; and you didn't when it happened. Did you ever ask any of the doctors why that was? Shock? I know, too, from working at that same group home I described to you, from another experience of violence, worse than what caused my RSD, just how crazy, or hard to wrap your mind around the human body it truly is....
There was one particular boy (I was the only girl who worked in the "dorm" or "cottage" setting with the oldest age group 13-18), who was 15, decent-sized kiddo, after we had our morning group on a Saturday, where we lay out our expectations/plans for the day, kept acting up. He was being redirected by me, and my co-worker every time I turned around. He knew, as we had laid it out in group, you had to be compliant with the expectations we had laid out in group (pretty simple things) if he wanted to go outside when we went outside. It got to the point, where, after double-digit times telling him not to do this, or, not to do that, that I gave him his final warning, telling him if he had to be redirected one more time, he would lose his "outside time" for that shift. I know it sounds funny, but kiddos with their backgrounds need structure all day and all night; something they have never had in their lives (most of them anyway). So, anyway, he continued to bother this kid or that kid, and I told him he wasn't going outside. He lost it. My co-worker, escorted him, arm in arm, to the time out room, to chill for 10 minutes or so. I was the lucky one who had the stand in the doorframe of the time out room and make sure he stayed in there. Of course, all his anger is targeted at me, but I had to keep up a pretty good facade working there, of not being scared; especially because I was the only female....I had a lot to prove in that sense. But, there we are, just he and I, me, standing, in the doorframe....him telling me I am a "B****", everything you can think of. Me responding with how he is responsible for his behavior and the consequences and no one else. Then, he pulls something from his pockets...a homemade "shank". In case you aren't aware of what that is, as a lot of people I know are not, it's mostly a prison term/slang for anything, any item that can be carved and shaped into a blunt, sharp pointed object, much like a knife, but sharper, to stab someone with. He had a pen, that you write with, that had been carved and shaped to quite a sharp point...he then started lounging at me and laughing. I have to admit I encouraged this ibehavior in a way because i wanted him to really think about what he was doing. I told him that he wasn't acting like a man, but, rather, a coward. I asked him, number one, why would you ever want to hurt a girl..how cowardly that was. And, I asked him why he would attack someone (being staff), knowing they cannot fight back. Honestly, of of course, I didn't want to be shanked, but, I wanted him to at least hear what I was saying regardless of what choice he would make. He continued lounging at me, I continued pushing him back into the time out room. Then, in a flash or a blur, he came full steam ahead toward me. All I remember is grabbing the shank with one hand and throwing it; asking one of the other kiddos who was witnessing to pick it up and put it with my stuff, all the while putting this kiddo in a hold until my co-worker returned. It wasn't until my co-worker came that I even realized that, indeed, he had shanked me; I never felt a thing. It has pierced the skin fairly deeply, and there was a very visible puncture mark where it had penetrated the skin. I never though much of it, due to lack of pain, but procedurealy, wrote up and incident report just in case. BOY AM I AM GLAD I DID! The next day, or morning, I should say, I was at a manadatory work training that was academic and interactive in nature. There were about 200 people there. In my group there were about 5. One girl in my group says to me, "OH MY GOD, what happened to your hand?" I looked down, and I swear I never noticed until she pointed it out, that was once just a puncture mark had turned my entire wrist, hand, fingers black blue and green and it was swollen. THen it really looked bad. It freaked me out. Went to doc shortly after and had to wear a splint for about a week (not sure why). But, it looked AWFUl. Yet, I never, not once t/o the whole ordeal felt any pain. I know, for me, I attribute it to adrenaline. Working in psych hospitals and group homes for the better part of 10 years, you become very familiar with adrenaline...you can feel it pumping through your veins. Makes your stronger for sure, and it definitely protects against feeling pain....weird, huh?
Makes me wonder if adrenaline, or shock took over in your situation initially. One hearing your story would think that it would hurt beyond measure.

Sidenote, completely unrelated, but, I used to, more than a decade ago, work at UPS (I am sure you are familiar, as they are quite involved in Canada as they are in the US). The actual "hub", biggest center, is here in Louisville, Kentucky where I live. Anyway, I used to work for them, in my younger years, loading packages to be shipped to Saskatchuwan (sp) Canada. IS that anywhere near you? I always remembered the name of that providence after all these years because it was so unique sounding....

Anyway, it is hard, as you and I both seem to agree, to grieve the old, and accept the new. Do you have any interests and hobbies that you have picked up along the way? What types of things do you do now to distract yourself from the pain and or fill your once 10 plus hour days?

jcrewrockstar (sara)

[puckster5]

hi sara

thanks for sharing your real name. its a little more personal this way. but jcrewrockstar, makes me wonder where you came up with that name for yourself. do you play in a band?

i thought it was strange too, that i didnt feel pain. but, like you said the human body reacts in strange ways. i cant give you a number on how many stitches i had in my hand, i know it was alot. the most painful part was when they dug(i really do mean dug and picked) the stitches out. it was the most pain i have ever felt in my life. i went to see the surgeon for a checkup, and thats when they said well try and remove some of the stitches. they dont warn you before. afterwards i know why. you would never show up for your appointment. i sat there for four hours while they removed the stitches. they dont even freeze your hand. i sat there in so much pain. thankfully, i had my oxycontin in my pocket. i ate 9 oxy pills, dry without water just to try and get thru it. i remember the nurse looking at me and saying you are turning very pale and white and giving me a break. i felt like running for the door. i told her to just keep going and take all possible because now i knew the pain and wasent coming back later. but, i managed and got thru it.

as for saskachewan, its two provinces west of myself, about a 20 hour drive away. in perspective im about 4 hours north east of detriot.

as for now, i still try to help some friends out with their projects. but, i warn them before it will take a little longer than what i used to be able to do. much longer. as sometimes the pain and swelling gets the best of me. if i push to hard, i pay the price for the next few days. so if their in no hurray i help the best i can. also, i took up some gardening as it interested me before. but again it takes sooo long to do anything. i felt so bad for my dog (german sheppard) as i couldnt walk that much at first. now i try and take walks to make up for it. its amazing an animal will know your hurt and not complain, all the while you build so much guilt inside yourself. the rest, i try to cook and clean and just maintain my house the best i can. it seems never ending sometimes. the fatigue i feel most of the time just tires me out. just doing the house work is hard enough, but keeps me busy.
thanks for your story. any new interests or new hobbies that you have taken up since your new life began?
take care
dave