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Old 07-17-2009, 09:58 AM
 
9 posts, read 23,420 times
Reputation: 11

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i know somethings an everyone is different, but i've had this burning since 2002, am now using zanaflex which maintains the burning, i now just try to keep moving, pretty much don't sit still till time for bed, make sure an call right away, for his appointment list is long,
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Old 07-17-2009, 10:32 AM
 
9 posts, read 23,420 times
Reputation: 11
Default just venting

so tired of taking them, still every time i go to the doctor, don't care how long its been, you still have to prove to them that you are not there just for pills, how about giving me some help instead of me having to hear about you an your liscense, prior to me getting hurt,never wanted them, had no use for them, now, can't get out of bed without them, they pretty much dictate your life, for, theres' good days and plenty of bad ones, summer, what summer, i still have to wear winter clothes all year round, how about the doctors offices how the air is so cold. i dress sometimes double layers when attending,truely have lost all my respect for certain doctors who to this day are still being praised, an still billing.
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Old 07-17-2009, 03:01 PM
 
8 posts, read 53,787 times
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I totally understand & btw venting is good.Most of my friends don't understand RSD & I'm sure they think I'm faking.But I have more bad days than good.I went back to work in a very limited capacity a few months back & am finding it extremely difficult as my foot is paralyzed..well restriction of movement I call it as unfortunately I have the feeling of pain. I'm a person that rarely calls out sick unless I'm in the hospital..& here I sit writing this on a sick call..have been for over a week.It sux.Only 2 close friends understand as they have seen me at my worst.I met an older lady recently who has suffered from RSD for over 10 years & she told me to join a support group & I laughed.But then she told me that if anything it was good as people would understand & mainly that you might possibly find out info on good doctors etc.I'm googling to try & find a place.My theory is you never know?Every avenue is worth researching.I know that I can't go on living in this much pain & that if these horrendous doctors I've seen to date can't help me...then there's only one solution-I have to keep trying til I find someone that understadns & looks beyond textbook answers. If I find any useful info I will post it.
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Old 09-24-2009, 09:17 AM
 
9 posts, read 23,420 times
Reputation: 11
hello, its' been awhile, i can truely tell you,that if it was'nt for me being a vet, boy would i be in trouble, truely was kicked to the curb, an very well being black balled by doctors in the area, everyone looks at my file an see how thick it is an turns me away, oh sorry you've already had everything we would do, how about that for treatment, 3 dorsal stimulators implanted, all 3 got infected an had to come out,i get the oh sorry routine after doing all the paperwork,an all the other motions,just to get i can't help you,im in a state that if it was'nt for my family,i don't think i can say what i would do,i no two wrongs don't make right,but revenge would be nice,just to let them no what its like to suffer 24 7 a day, still movin on not letting them stop me, in the mean time its' self medication,..........green is good, but dose'nt stop the burning,mironol is also great, at least you have the munchies, in a good mood, horny,an you eat great, weight dose'nt go up an down
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Old 11-19-2010, 06:25 PM
 
1 posts, read 2,065 times
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Default RSD doctor

Hi LoisLane,

In response to your search for a doctor who understands and treats Rsd,I too have been in a similar situation as yourself...Following what I believed was a simple knee surgery,I started to experience horrifying pain from my knee all the way up to my hip...went back to ortho dr., had emgs, sympathetic nerve blocks and so on...I was referred to drs. who just wanted to keep me on strong pain meds indefinitely( which is not for me)..After a year,I finally found a dr. who not only understood the disease fully,he is also a teacher of methods of controlling the pain...He is compassionate,and will spend a lengthy amount of time with you in the office,actully listening (Unfortunately I found out many drs do not do)...His name is Linqui Zhou he is Located in Woodbury N.J.,at Woodbury Spine and Pain Management -845-0707...I was completley frustrated and at the end of my rope with this disease,and how it has diminished my life in so many aspects..He is the one that listened,understood and is now trying to aggresively treat and manage my pain without massive amounts of narcotics , I am currently awaiting a surgery from Dr Zhou for a spinal Cord stimulator to manage my pain...I completley trust and believe that I have finally found the right dr. for my needs..I hope this helps you..
Take Care,and good luck to you...
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Old 11-20-2010, 01:30 PM
 
Location: Hunterdon County, NJ
75 posts, read 187,518 times
Reputation: 29
First of all Iam very sorry for all the pain you RSD sufferers are going through. My SIL has a very bad case of it, brought on years ago by Lyme Disease. She was on massive doses of antibiotics for lyme arthritis and the RSD took hold from there. Her legs are swollen and her feet are very mis shapen. She became addicted to Vicoden and has had numerous surgeries on her legs. She is disabled from her RSD and still on a cocktail of many meds. I don't know all of her doctors names..she has gone to so many in search of a correct balance of meds and care in general. It seems to be a very misunderstood and under researched disease/disorder.
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Old 11-22-2010, 12:11 PM
 
14,781 posts, read 41,653,295 times
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I know this was a blast from the past thread, but my wife's aunt has suffered with RSD for many years following a botched foot surgery. She went through all the various narcotics and they would either just knock her out or the pain would still persist. She found a doctor who treats RSD in Marlton, NJ. His name is Phillip Getson, D.O. and he has practices in Marlton and Cherry Hill. He started her on a round of ketamine therapy and she has seen a dramatic improvement in her symptoms and QOL. Maybe worth a shot for those suffering.
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Old 11-26-2010, 12:21 PM
 
Location: NJ
22,498 posts, read 30,064,115 times
Reputation: 27353
Quote:
Originally Posted by rmaiuro View Post
Hi LoisLane,

In response to your search for a doctor who understands and treats Rsd,I too have been in a similar situation as yourself...Following what I believed was a simple knee surgery,I started to experience horrifying pain from my knee all the way up to my hip...went back to ortho dr., had emgs, sympathetic nerve blocks and so on...I was referred to drs. who just wanted to keep me on strong pain meds indefinitely( which is not for me)..After a year,I finally found a dr. who not only understood the disease fully,he is also a teacher of methods of controlling the pain...He is compassionate,and will spend a lengthy amount of time with you in the office,actully listening (Unfortunately I found out many drs do not do)...His name is Linqui Zhou he is Located in Woodbury N.J.,at Woodbury Spine and Pain Management -845-0707...I was completley frustrated and at the end of my rope with this disease,and how it has diminished my life in so many aspects..He is the one that listened,understood and is now trying to aggresively treat and manage my pain without massive amounts of narcotics , I am currently awaiting a surgery from Dr Zhou for a spinal Cord stimulator to manage my pain...I completley trust and believe that I have finally found the right dr. for my needs..I hope this helps you..
Take Care,and good luck to you...
He's supposed to be pretty good- I hear his name mentioned a lot.

Now, if you want to try another route before the stim; I just found a chiro that also does physical therapy- I've seen him 3 times so far- I'm hopeless- lots of metal in my spine- he's the 1st one to actually test how many of my muscles are not working right- I've lost function in a lot of my muscles. So far I like him- there is no adjustments- nothing to adjust in my low spine cause of rods. He's in Williamstown & has another office elsewhere in South Jersey. message me if you want his info
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Old 02-18-2011, 08:53 AM
 
4 posts, read 14,347 times
Reputation: 10
I'm not in NJ, and noticed this thread is old but thought I'd chime in. My name is Patti, and I live in Michigan. I too am a victim of RSD due to an auto accident in 2007. I suffered from a Lis Franc injury that took a while to be diagnosed by the doctors (a bone scan finally revealed it about a month after the accident). My knee cap was also dislocated, but was also not completed diagnosed until a failed arthroscopic surgery to repair a meniscus tear. I have had 2 surgeries on my right foot - three toes fused together and a bone chip removed as well as a repair to the tendon. After 5 months, I had to have the screws removed, as I discovered the stainless steel screws were causing an allergic reaction. I have had 4 surgeries on my knee, an arthroscopic to repair my meniscus and debride my patella, a surgery to move my knee cap back in place, a surgery to remove the screws (the screws in my knee actually caused the bone to dissolve and he had to put in bone putty), and another surgery in 2010 to once again repair a meniscus tear. I also had physical therapy for about 2 years (I joke that I built his new office, which honestly might be true).

I have been seeing a pain management doctor (well, 4 in the same office) for almost 2 years now. I went through all the blocks and injections. I went through the spinal implant trial, approved by the shrink, had the metal allergy testing done. I had one good day of the trial (out of 7), coverage was good, but I had problems with lead migrations. The doctors scheduled for a permanent implant.

First surgery was done on 09/21/10. Instead of surgically implanted the leads (even though they knew after the trial that they should), they just used the wires. The doctor placed the battery in my side, slightly above my hip. A few days after the surgery, the battery started moving. I was extremely faithful in wearing the belly band to try to prevent this, but the doctor should not have placed it in the spot he chose. He actually put it on a stretch mark (damn kids, pregnancy ruins a body) and it was too weak of an area. I kept pointing it out to him and rep from Medtronics. The MedTronics rep was concerned, but the doctor said it's fine. It was still able to communicate with my remote at that time.

After about 3 to 4 weeks, the stim was turned on for the first time. It was horrific! The very next day, I was taken by ambulance to the hospital and admitted. The hospital wasn't very familiar with the stim, even though this was the hospital for my surgery had been done. I kept telling them it was my stim, and even had to show them by having my husband turn it on in their presence. They did insist on a stress test that was scheduled the next day. The stim doctor did not check in on me, I did speak to the Medtronics rep on the phone.

I passed the stress test and was released. I was told to leave the stim off (duh) and follow up with pain management doctor. At that appointment, they tried to reprogram me and said try that. I had to be reprogramed what seemed like a million times before the doctor said that I would have to undergo another surgery. At this time, my battery had also moved into a position where I could no longer communicate with the remote or charger. I also was unable to move, walk or breath with the stim on as the jolts were too great and intense. They advised to just leave the stim off until the surgery.

On Dec of 2010, I met with an orthopedic surgereon who performed the surgical lead procedure as well as move my battery to a different location. This time, he also implanted a paddle as opposed to just using the wires. They advised me that with a paddle, I wouldn't have the problems with jolts or "charges" going through other parts of my body. The paddle was a more direct method and would only hit the target areas. It would also be turned on immediately as opposed to the 3 to 4 weeks.

Well, this has not worked yet. If anything, it has made things worse, and has now caused me to have numbness, tingles, swelling, the "cold water sensations" in my arms, both legs and entire back. Every time I move, it hurts, it takes a lot of effort. I've become "dumb" in my thoughts and speech. I still can't get the coverage in my leg, I have to move and twist and get into some funky positions for it to work. The swelling in my back is super bad. I can't even hook my bra in my "usual" position. I only get "dressed" when going out or company comes over. A trip to the doctor's office kills me - knocks me completely out for the next few days only to have to make the trip again. The pain management center has finally assigned me one doctor and one office. I have one case nurse and one P.A. Four different doctors, three different "treatment plans". One said just give it time for the swelling to subside - that he didn't feel the RSD had spread, two saying it had and saying I needed epideral blocks to stop it (the ortho surgereon had said this at my two week post-surgery appointment and insisted I needed the epiderals before it got worse which was ignored by the pain management doctor), one doctor wanting to see if it was the meds causing the swelling and possibly reaction to the implant (he switched my vicoprofin to vicondin and wanted to look at my Lyrica next, but he hasn't been available to see me since).

So, I finally had my first epideral almost two weeks ago. This was also horrific. I had opted for the sedative, which they said would "knock me out some" (I had it previously for the other blocks and really didn't have the pain when they did the injections). I screamed so loud my husband and the entire office/nurses heard it. It hurt really bad, and did not improve anything. Two or three days later, I went to get out of bed in the morning and found I couldn't move at all. I have improved slightly, the swelling is still out of control. The numbness is still present, the stim doesn't seem to be helping, it still moves all over. I am scheduled for another epideral on 02/23/11 (doc said it has to be two injections - 2 weeks apart). I am concerned because the first one didn't work, the other injections never worked. It's a cortisone injection, which is the same as the others just "performed differently". I'm at a loss. I feel so alone. I am 41 years old, mother of 5, grandmother of one. I have two kids at home, a 17 year old son that graduates this year and a 16 year old daughter. I can't be with them like I used to. I used to work 40+ hours a week, took care of the kids, house, dogs, cats, rabbits and goats. I am worse now then before. The meds are making a mess of me - I take 90MG Cymbalta, 100 MG Lyrica (2 x a days), 100MG Celebrex, I don't know how many 7.5MG Vicodin a day, Ambien at bedtime (I had taken Remeron for one week, but the side effects were awful! Bad dreams, achy muscles, extreme mood change - became very, very mean) and also high blood pressure medicine (never, never had high blood pressure until the meds and pain got so bad. Doctors all say - even primary care doctor - that pain will cause this, as well as the meds).

Some days I just want to give up. I can't move without pain, I feel the crap in my back and my battery. The coldness in my body is just awful. I can't stand anyone to touch me. A simple, encouraging, loving hug that comes from my husband ends up in tears, screams and shivers. Sex has became a thing of the past. I now know why people are shocked when people on disability end up pregnant (I couldn't even think about doing the "deed" knowing how painful it has become).

I'm at a loss. I want to give up. This just sucks. Life feels over for me. How do you guys cope? I've joked about medical pot, but I wonder... It couldn't hurt me like the meds have. It's natural, the meds aren't. The worse side effect from pot is it burns out your brain cells, well - the meds cause that and even more.

Sorry about the rant, but I don't know where to turn. If I cry to my family all the time, especially with my more "serious whines", they will get scared or tired of me. If I cry to the doctors (more), they might stick me in the looney bin for awhile. I just want some normalcy to my life. Oh yeah, forgot to mention - when my knee was "fixed" (or made worse, depends on how you look at it), the doctor was very, very concerned about soft bones. I told the ortho surgeron, as well as the pain doctors that I was worried about this. I am afraid that when they went into my spine to implant the paddle and had to remove some vertabra, that it might pose problems. I can feel the paddle, I can feel the wires, and the battery. It hurts - going outside in the cold weather makes it worse. I have to "live" on my heating pad until I can warm it up. I just want to be fixed.

It's nice to vent. I hope I don't drive you all crazy. I usually am an easy going, yet passionate person. I have become a monster. I apologize in advance if I offend anyone, sometimes the medicine and pain affect my "manners". I just want help, friendship, a "pity party" from someone who truly, truly understands my pain.
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Old 02-18-2011, 08:54 AM
 
4 posts, read 14,347 times
Reputation: 10
Wow, my post is long. Sorry guys . I'm off to read other posts now and hopefully learn to cope.
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