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Old 03-07-2011, 12:52 PM
 
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I also have been diagnosed with RSD. I first got it after a foot surgery, then a hand surgery and now in my other foot due to posterior tibial tendon. I just thought these drs. gave up on me as to what was wrong and decided it was easier to tell me there's nothing that they can do, I have RSD. Finding a doctor is not easy and being put in a coma on ketamine is pretty scarey to me. Can someone please tell me what this therapy is all about?
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Old 03-07-2011, 02:25 PM
 
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Quote:
Originally Posted by Aryanna View Post
I also have been diagnosed with RSD. I first got it after a foot surgery, then a hand surgery and now in my other foot due to posterior tibial tendon. I just thought these drs. gave up on me as to what was wrong and decided it was easier to tell me there's nothing that they can do, I have RSD. Finding a doctor is not easy and being put in a coma on ketamine is pretty scarey to me. Can someone please tell me what this therapy is all about?
I don't have RSD, but my wife's aunt does following a botched surgery on her foot. She suffered for years and then finally was able to begin ketamine treatments about 6 months ago. It took about 2 months for her to really start noticing changes, but then she started noticing major improvement in the 2-4 month time span after beginning treatment. Her pain was greatly reduced and her mobility and stamina greatly increased. She has since regained much of what she lost to RSD and is on monthly treatments to maintain what she has gained back.

The treatment itself is pretty staightforward. She goes in outpatient in the morning and they hook her up to the IV. The ketamine infusion begins and she falls asleep during it. After being woken up to go home, she is very tired and woozy for about 24 hours (she literally just sleeps) and then feels normal again. The most difficult part of the treatment is dedicating the time to having it done. My wife's aunt was fortunate that she no longer works and either does my wife's mother so she was able to accompany her to the treatments.

Of everything she tried, this is the only thing that has worked for her and while scary at first, she actually looks forward to her treatments as she is generally starting to get some symptoms back in the week preceeding her monthly dose. She has said that if it didn't work, she wouldn't do it, but her results have given her a large part of her life back and losing a couple months at the beginning of treatment and one day a month is an easy trade off.
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Old 07-27-2011, 09:42 AM
 
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Default RSD sufferers

RSD has been treated successfully with Calmare therapy. Check ou [URL="http://www.calmarenj.com"]www.calmarenj.com[/URL]
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Old 08-03-2011, 04:34 PM
 
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Patty_Christmas, I read your story last night, it hit home real hard. I went on this site to try to find help. I was diagnosed with RSD in 1995 after my 3rd back operation. We caught it right away. We meaning my pain mngnt Dr and I got lucky after a few months it was put into remission. I was still dealing with a great amount of pain that I was never able to return to work and led to another back operation. Since that last one in 2006 my RSD has been triggered and has been out of control. I am now 43 I have been dealing with back issues since I am 15.

With RSD my feet crack and have gotten infected. You can't let anything touch your leg or foot. The hypersensitivity drives you nuts and it burns. My foot turns deep purple to a blackish blue. The cold hurts to the bone. I now feel like Im walking with a rock in the heel of my shoe. This is anew symptom in the past 8months for me. Plus I feel like my toes a being sliced off. This really stinks I now have a hammer toe on the affected foot. The skin is always peeling. I can't feel parts of my foot so mt balance is way off. I have fallen a few times.

My first surgery was after HS, a year after graduation. I was just 19 paralyzed prior to each operation. The Dr calles it a failed back. I have had my spine fused ,unfused,rods,screws, blocks and everyone is familiar with all the pain medications. I had to have colon rectal surgery. Due to the constipation I ended up with a rectal prolapse, NOT FUN. Then two years later I had a hysterectomy. This was 1 yr after my 4th back surgery, it feels like it never stops. But, the surg. left me numb in my bottom and female parts so if I sneezed, laughed, ect... I wet my pants or the bed. So turned out my bladder, vaginal walls and uterus were all prolapsed. I ofcourse seem to have nothing go easy. I got an infection w/ a fever of 103. Happy to say I do have 2 beautiful daughters and I no longer wet the bed. I also last year had cateract surgery due to all the steroids. The comlication from that was a detacted retina. Now fixed, Thank God.

I was very surprised to see how many people have been enflicted by this horrible disease. I try to smile when I go out but I have to say, the past year or so I think Im starting to give up. I wish there was an easy way out. I have 2 kids Im home with and I try to put up a front. They are 13 and 10 and never get to do the things they would really like to do.

The meds have made my brain mush. And anytime I go to the hospital or somewhere new they think I am a drug addict.I constantly get tired of them and tell my dr Im stopping them. And then more pain comes through and I have to get back on the reg dose again. I love my pain magnt dr. he has been with me since the beginning. But I think its time for another oppinion.I am in bed all day and night. I am afraid of anymore surgery. I herniated another disc. Wait for this I did it falling off a raft in a pool. Iam I think at my lowest I have ever been. I have a very high tolerence for pain but enough is enough. I CANT DO IT ANY MORE!!!!

Im sorry I didn't plan on giving my life story or having my own pitty party. I just cried last night while I read your story. I see Me when I read about You...

Last edited by Michelle181; 08-03-2011 at 04:44 PM..
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Old 09-02-2011, 01:32 PM
 
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I was a nurse for 29 years.Believe me I know exactly what you have all been going through.At the age of 34 I was diagnosed with breast cancer.Postop I woke up with the worse pain in my back.I kept saying what did they drop me on the floor.I am very knowledgable in the medical field.My nightmare began.I was about to face the worst pain in my life.When i was finally dignosed with RSD I thought my nightmare was over.Well it just began.Nobody is knowledgable in New Jersey.Besides what needs to be prescribed for the pain is out of the question with most doctors.Sad to say I never even took a tylenol but the only choice I had in this condition was medicine or a gun.Somebody has to speak about this topic.I intend to get our story out there.I would do anything to not need high dose pain medication.I am sick of people looking at me like I am a drug addict.I am sick of fighting every month for my medications.You need to go to Beth Israel Medical Center in New York.Trust me they are extremely knowledgable.They will tell you this is what you need to treat your condition.You are no different than having hypertension or diabetes.These are the medications that will help you to have a life.They gave me my life back .I could never live with the amount of pain I had.It does ot stop the scare I have every time I need to fill my prescriptions.another thing is I expected to not be able to function on what I was given.So not true.They also told me your body adjusts.In 2 days I went from 11 months of torture to running around and planning a birthday party for my daughter. These medications are truely over rated.As a nurse I know how the world thinks and judges patients.I have grown to love the works of a doctor named Russell Portenoy.Even though he has never met me he writes books and trys to educate professionals on this topic.Not everyone is a drug addict.We have such a severe pain syndrome.Does anyone truly think we enjoy this struggle to get the medications we need to function on a monthly basis.I find it to be an extreme nightmare. However,I am so grateful for this hospital and the doctors that treat me. They have been amazing. If you can travel into the city please get there as soon as possible.They will help you believe me.It has been since 2001 for me and I see them every 3 months.Good luck and good health to all!
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Old 08-18-2013, 11:50 AM
 
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Default My name is Kristy and I have RSD with a good doctor

Quote:
Originally Posted by loislane711 View Post
I was diagnosed with RSD (Reflex Sympathetic Dystrophy) recently.It started out with a broken toe which resulted in RSD.I went through steroid injections to the foot,Physical Therapy(which made my condition worse),several Dr's,Pain Management Specialist & a Neurologist who did an EMG on both legs which in turn gave me more pain since.I've been on Percocet, Vicodin. Lidocaine Patches,Cymbalta, Oral Steroids, Lyrica..& several other drugs...Vicodin seems to be the only one that helps to some extent.If anyone knows of any doctors within NJ that are truly knowledgable in RSD,I'd greatly appreciate any information.The doctors I've seen to date all seem to say the same thing 'You're young, it'll get better in no time'..I've been hearing this for 6 months now & I'm 37, healthy & fit.I feel they see me as a healthy person & don't understand it has nothing to do with that but rather the nervous system-very frustrating to say the least.It leads me to believe they're not that knowledgeable & Im going to all the wrong Dr's.I was even referred to a Dr who's supposedly an RSD specialist & there were great reviews about him online..well..he told me that I was young & I'd be back at work in no time & ..Hmm.When I ask questions about RSD or tell Dr's that I've researched it in depth, I get referrals elsewhere or told that my condition is unexplainable.There has to be a doctor in NJ that understands this condition? People around me seem to not understand the pain I go through & that it fluctuates from day to day, I have good days then I have some pretty bad days..Help...Anyone out there that knows of a good doctor..please share information..
Thanks
My doctor is in Atlantic City New Jersey his name is Alan Faustino and he has been wonderful in helping me with my RSD.
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