New to Site. Need RSD help.
 

My neurologist wants me to see an RSD specialist in NYC, as my appointment with Dr. Robert Schwatzman is not until November of 2011. He has recommended either Dr. Richman from The Hospital of Special Surgeries or Dr. Ronny Hertz from St. Lukes. I am leaning toward Dr. Richman, as my RSD began after an arthroscopy of my right knee January 27, 2009.
I am very anxious about seeing anyone new, as like most RSD sufferers, I do not trust many medical providers at the moment. I am very comfortable with my PCP, Neurologist and Psychologist, and RSD Support Group at the moment. I am deathly afraid of Ketamine and am hoping that they may have an alternative treatment for me.
Any suggestions, advice, experiences, etc. would be greatly appreciated!
I am a nurse, so don't be afraid of using medical terms.
:confused:

greetings Deidre..
 

Hello Deidre...

Iam Kathy and I would love to help you!! Iam sorry your are dealing with our three letter friend..

Funny, but my RSD began in 2007 on my 45th bday..oh humm.., we surmise, with a right knee arthroscopy surgery also.. but my RSD is now whole body.. although looking back I had some quirky things happening prior to 2007.....

I worked in research so the medical stuff is warm and fuzzy for me also... Dr. S is a great Dr. and as you see his waithing list shows it.. but as I read your thread it seems you have your ducks lined up..Seeing a Pain management Dr. is very important but having comfort with knowledgeable RSD Dr.'s is essential... along with someome to talk with..a counselor and us now..is big!!

My one thought is asking what does your physicians currently have in place for you?? Are you planning or have done any blocks, pain meds or pT?? See with RSD it is so important to begin interventions, trying each one early on in our game in order to possibly hit some type of remission.. there is a long list of possibilites and sadly each of us resond differently to each one..even spinal cord stimulators, which or may be a condsideration later on down the road..I have a SCS unit but that for me was not a positive in my care..I, too see Dr. S..yearly.... he is very, very knowledgeable but the $ means are big for what it takes in our care once too much time has passed...

It has been great meeting you...Stay with us here..lots of great people..those who I am honored to introduce to you as my family... allow us to help you and plz. ask any questions that you have.. we'll see this thru together..:grouphug:


Hugz, Kathy:hug:

Thank you!
 

Kathy,
Thank you for the warm welcome. My RSD started in my right knee and has now spread to my right arm. I have pain in both legs and both arms, so basically my RSD is now in all four extremities, although the right side is worse, burning type pain has been wosening in my left leg as well. That type of pain began within 4 months of my symptoms of RSD and is now getting progressively worse. The left leg pain began in my left foot after my LSB series. (beginning in my left foot, but now spreading up into my thigh and hip area). I received 5 Lumbar Sympathetic Nerve Blocks 4 months after my arthroscopy. I responded with initial relief of pain for 24hours and then the relief ranged from none to 1 1/2 days. Not good, as I just KNEW those blocks were going to put me into remission! I did physical therapy before the blocks, post operatively, and continue to do all of my exercises on a daily basis, in addition to light weight workouts (none aerobic) 3-4 days per week. (I had always been quite the fitness buff!) I am going to attempt an 8 week yoga and pilates class, beginning with yoga tonight and pilates on Thursdays. We will see how that goes. Should be interesting.:rolleyes:
My neurologist is wonderful and actually well versed in RSD. He actually knows Dr. Schwartzman and I believe they have sat on Neurology Boards together. I actually refused all meds, other than prn percocet for 15 months, as I believed that with my PT and exercise routine, RSD support group, psychotherapy sessions (which taught me meditation, cognitive imaging and deep breathing exercises), a good diet free from processed foods, a good attitude and dietary supplements, I could beat this thing! Talk about "bargaining!":o
Anyway, I am currently taking, Oxycontin 30mg. every 12 hours, Percocet twice a day as needed for breakthrough pain, Xanax 0.25mg-0.5 mg. at bedtime, Zoloft 100 mg. daily, along with Multivitamins, Omega-3's, Vitamins C and B-Complex, Vit. D3 and Calcium.
Yesterday, my neurologist increased my Oxycontin 30mg. to every 8 hours (3 times/day), Percocet once a day as needed and the xanax at bedtime as needed. He is hoping to manage my pain with just the Oxycontin, eventually.
I now have to decide which NY physician to see. I guess I'll call each of them and weigh the pros and cons of each.
I have been denied SS Disability twice and now have an attorney. We are awaiting a hearing before a judge to plead my case. The hearing must be "in the works" as there has been a lot recent medical record requests in the past month or so, requested by the Disability Adjunicator. Hopefully, they will listen this time. I would like nothing better than to return to some type of work, but honestly can't! I have accepted the fact that I cannot nurse after 28 years, but am just "teetering" on the brink of accepting RSD into my life.
Having a "whoa is me" type of day!:(
Thanks again and feel free to give me any feedback, positive or negative. I can take it!:winky:

Sorry you are having a bad day. Been there, done that. RSD can be really tough.

You don't say why you are afraid of the ketamine? Any particular reason? I've have 25 low dose infusions since April 19th and I'm in remission (but not perfect). I was able to return to work FT after a one year LOA because of my RSD in June. I hurt myself in 11/2006 and was diagnosed in 6/2008.

Dr. Philip Getson started me on the 10 day out patient protocol and will always be special in my heart - he is just awesome. Getson is located in Marlton, NJ, only 15 minutes outside of Philly and worked with Schwartzman for many years. It is a MUCH shorter wait to get into his clinic than into Philly; however, he only offers low dose outpatient infusions, not the 5 day inpatient treatments.

In my quest for treatment, I also met Dr. Ronny Hertz at St. Luke's in NYC. He is truly a very nice doc and seemed very knowledgeable. And I tried to get an appt with Richman or his partner - they are reputed to be EXCELLENT. They wouldn't accept my insurance so I couldn't get into the Hospital for Special Surgery in NYC even for a consult.

I would encourage you to try to get yourself in front of the best of the best ASAP. The sooner you are treated the better your chances for remission.

Any questions, please let me know, the best of luck to you, Sandy

Ketamine
 

Thanks Sandy. I guess the reason I'm afraid of Ketamine is my somewhat lack of knowledge of the drug. I don't like the fact that it is abused as a street drug called, "Special K." I realize that I shouldn't feeel that way, as all of the perscription drugs I am currently taking are indeed, "abused on the street."
I am also afraid of potential hallucinations and other adverse reactions to the drug. You have to remember that I wouldn't take anything for pain for 15 months after I developed RSD. I think that confirms my reluctance to even accept the diagnosis and the changes and losses it has forced upon the lives of me and my family. Nurses sure are bad patients!
I am also concerned about the financial aspect of seeing these Drs.. I am hearing that insurance won't pay for Ketamine infusions. I know I shouldn't worry about these things before I know for sure what will be covered and what won't. I have not worked since my surgery in January of 2009 and feel tremendous guilt about that. I honestly have not even attempted to return to work, as trying to take care of myself and family is impossible many days. I have been a nurse for 28 years and have never been let go of a job. I loved my career and loved my job. Nursing is a big part of me and it is who I am! I know that I am not reliable, as doing anything for more than 2-2 1/2 hours sets me into a pain flare. I also wouldn't want a nurse on narcotics caring for me. I seem to have more bad days then good. Trust me, I live my life and don't stay holed up unless I absolutely have too, but I am feeling so discouraged with this monster of a condition. I hate the emotional rollercoaster it plays. For instance, I may have a few good days and think to myself, "Wow, this may be going away" :D and then BAM! It's back and full blown!:(
So sorry to rant and I'm sure most RSD sufferers can relate to what I'm saying, but I am just reluctant to trust anyone new with my care. I have seen so many Dr's that just care about lining their pockets and I feel very comfortable with my present Dr's. I'm just anxious about the whole thing!:confused:

Dear D~

And you have every right to be anixous about 'new' Dr.s..As our RSD condition is not black and white and at times..it is not easy to accept new care..but if you can look at it as just enhancing your current care, new set of eyes to join the RSD party..Just allow it to blend cuz when the day is done and the race is over, you still have the ultiamte choice on how things should and will go...

As I read your response to my note..it made me smile as once again something else we have in commom is the lack of meds we use ..I am cold turkey..notta, med for my RSD.. Some call me strong..I say crazy but I have a terrible tummy and I just hate look at things a second time..so I opt out of meds..tryed em all..

I so aggree with Sandy and see if you can get an appt with her grpou of Dr.s also..I know Sandy has been an awesome sport, our true warrior with her treatment..and again time is of the essence in treatment of your RSD...

Hugz, Kathy:grouphug:

So sorry about your job. Most of us have suffered similar losses and can really relate. With nursing there is no room for error, unlike so many other professions.

I haven't hallucinated yet, or had any problems subsequent to my infusion -ever. The better docs mix meds in with the ketamine to offset the side effects of it. I'm also on a fairly low dose - 200 mg - every 3 or 4 weeks. I do get sick to my stomach and suffer from headaches occasionally while the infusions run at times, I have scripts for meds for that, too.

My parents guaranteed payment of my account so I could get on the waiting list for Dr. Getson's clinic. Then just before I started the 10 day outpatient treatments I got approval from United Healthcare (after numerous appeals). But United NEVER remitted what they promised they would. My injury was a WC injury. After many months a RI judge ordered my WC company to pay Getson's bill in full, and ordered that my treatments be continued here in RI with a doctor that had started to perform them. I was his 2nd ketamine infusion patient.

I had lidocaine infusions - 8 of them - before I tried ketamine. Lidocaine worked to some extent for me, but the impact was nowhere near as profound as ketamine. Each lidocaine infusion I received cost as much as a ketamine infusion and was readily approved by both insurance companies. Go figure....

Jim Broatch at the RSDSA can provide you with an updated list of the ketamine providers. It's also online at FB on "Ketamine Klub." I contacted a number of them and made appointments where I could. The docs' offices will tell you what types of insurance they accept.

Hopefully don't have to give up your favorite doc in exchange for your ketamine doc. One would think that they would be able to work together.

If I can provide you with any info, let me know. XOXOX Sandy

Hello Deidre,
Sorry I'm a bit late to this conversation.
I have another doctor to recomend, but don't know where you live. He doesn't deal with Ketamine, but has a network of doctors he uses, Much like Dr. S. In fact, he was partners with Dr S @ Jefferson, back in 'the day'.
He's in FT Washington, PA now. about 20 minutes West of Phila.
His clinic is K.I.N.D. (Knobler institute of Neurologic Disease.) I've been with him for about 20 years. He's slowed his practice down a bit, after a heart attack a couple years ago. But, I think he still accepts new patients.
He's a straight shooter, and won't lie to you. He's become a good friend to me over the years.

So,
Robert Knobler

215.643.9045

If you'd like any more information, ask. PM me, whatever you choose.

If you were to need help on what Dr to choose, you might even call his office for advise.
Tell them you just met me, Pete Woj. They'll know. (They call me Wojo).

I wish you all the very best in your 'new life', I'm sorry to say but, it's gonna give you a new outlook, and other changes, not all so terrible.
I've had my 'friend' for going on 28 years now....
It doesn't get easier, but you learn how to cope....

Lots of love and hope to you!

Pete

PS don't forget to go to rsdsa.org and join the site, and check out their doctor finder. Lots of info there!

Why did I wait so long to join this forum?
 

Wow! You guys are amazing! I can't believe I've waited so long to join a forum. Thank you all so much for your warm welcome and advice. I promise to check it all out! I've peeked at some forums since I've been diagnosed, but was usually scared away by people's horror stories. As I've mentioned, I am right on the edge of accepting my RSD diagnosis.
I am happy to report that I participated in my first yoga class tonight with one of my girlfriends! I was able to do everything! I had to use a towel under my knees for some of the positions and medicated myself before class. I also had to take a short time out at one point. I arrived at the class a few minutes early to introduce myself to the instructor. I wanted to let her know that I have a chronic pain condition that affects my arms and legs. I just wanted to make sure I wouldn't be "called out" if I couldn't do something or had to stop. I have never done yoga before and didn't know what to expect. To look at me you would never know that I was sick. I was probably the most physically fit person in the class, besides the instructor. Boy, yoga really makes you sweat! I was dripping, but that also seems to be part of RSD. I have a hard time tolerating very hot weather and winter is the absolute worst! I live in NJ, but feel that I should probably become a "California Girl!" Warm, low humidity days, cool nights and beaches. The beach has always been my "happy place."
Thank you all again and I'll check in again soon!:hug:

This is a wonderful place Deidre.....I'm happy you found NT

Let us know how you do with the yoga !