Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 02-01-2010, 01:59 AM #11
momw/rsdchild's Avatar
momw/rsdchild momw/rsdchild is offline
Junior Member
 
Join Date: Jan 2010
Posts: 20
10 yr Member
momw/rsdchild momw/rsdchild is offline
Junior Member
momw/rsdchild's Avatar
 
Join Date: Jan 2010
Posts: 20
10 yr Member
Default

Wow Tiff! That would be amazing! We just spent a week there the week before last getting the ketamine infusions for my daughter. They didn't work this time and she is still in pain. I am calling them tomorrow to see what we need to do next. The hotel gets pretty expensive after a while. I don't have RSD but I have a bladder disease that is kind of like RSD in the bladder. I started seeing Dr. Krusz almost 2 years ago and talked to him about my 15 year old daughter who has RSD. She has been seeing him about 6 months now. After her first visit to him she walked out saying "Wow! He is brilliant"!
momw/rsdchild is offline   Reply With QuoteReply With Quote

advertisement
Old 02-01-2010, 07:50 PM #12
Tiff Tiff is offline
Junior Member
 
Join Date: Dec 2009
Location: Texas
Posts: 28
10 yr Member
Tiff Tiff is offline
Junior Member
 
Join Date: Dec 2009
Location: Texas
Posts: 28
10 yr Member
Default

Quote:
Originally Posted by momw/rsdchild View Post
Wow Tiff! That would be amazing! We just spent a week there the week before last getting the ketamine infusions for my daughter. They didn't work this time and she is still in pain. I am calling them tomorrow to see what we need to do next. The hotel gets pretty expensive after a while. I don't have RSD but I have a bladder disease that is kind of like RSD in the bladder. I started seeing Dr. Krusz almost 2 years ago and talked to him about my 15 year old daughter who has RSD. She has been seeing him about 6 months now. After her first visit to him she walked out saying "Wow! He is brilliant"!
I said the exact same thing! I was there the week before you. Too bad we missed each other...maybe next time. I'm sorry to hear about your bladder problem as that can't be fun. I'm new to this whole board but feel free to pm me and I will give you directions on how to get the discount. It's very easy! Thanks.
Tiff is offline   Reply With QuoteReply With Quote
Old 02-17-2010, 02:24 PM #13
justdeb justdeb is offline
In Remembrance
 
Join Date: Jul 2008
Posts: 63
15 yr Member
justdeb justdeb is offline
In Remembrance
 
Join Date: Jul 2008
Posts: 63
15 yr Member
Default Terri

Hey, was wanting to see the doc who does the STS. My problem, I called the office and they require you to purchase the unit at your first visit for a total of 4500. That is way beyond my means. The gal said they dont' work with insurance for these things. That I'd have to do that on my own. my primary does not cover the device. Not sure if Medicare B will pay for it either. I can't take 99% of the pain meds on the market because of concurrent diagnoses. Sigh am wondering how the avg joe can afford the treatments.
Deb
justdeb is offline   Reply With QuoteReply With Quote
Old 02-25-2010, 01:33 PM #14
klmullican klmullican is offline
Junior Member
 
Join Date: Feb 2010
Posts: 8
10 yr Member
klmullican klmullican is offline
Junior Member
 
Join Date: Feb 2010
Posts: 8
10 yr Member
Default Question about your daughter

Hi! I just got Dr. Krusz's name from Dr. Schwartzman's office in PA. I had called to see if they knew anyone in Houston or Texas. My 16-yr-old son was diagnosed with RSD in November. He's had two nerve blocks which were successful but only lasted a few days the first time and almost a week the 2nd time, which was 2 weeks ago. But his pain took longer to come back each time and wasn't as severe. It was off the scale before, and he was taking 8 Vicadin a day and Neurontin. I was wondering if you would mind sharing info about your daughter. Did she have any nerve blocks and were they successful at all? I'm so sorry to hear that the ketamine infusions didn't work! Also, are you all closer to Dallas? I sure would like to find someone who does that in Houston. Sam's pain management dr. is an anesthesiologist at the Baylor Clinic of Pain in the Neurology Dept. We like him a lot, and he may do ketamine infusions. We go see him again this Friday.
Thanks for any info you wouldn't mind sharing.



Quote:
Originally Posted by momw/rsdchild View Post
Wow Tiff! That would be amazing! We just spent a week there the week before last getting the ketamine infusions for my daughter. They didn't work this time and she is still in pain. I am calling them tomorrow to see what we need to do next. The hotel gets pretty expensive after a while. I don't have RSD but I have a bladder disease that is kind of like RSD in the bladder. I started seeing Dr. Krusz almost 2 years ago and talked to him about my 15 year old daughter who has RSD. She has been seeing him about 6 months now. After her first visit to him she walked out saying "Wow! He is brilliant"!
klmullican is offline   Reply With QuoteReply With Quote
Old 02-25-2010, 01:54 PM #15
klmullican klmullican is offline
Junior Member
 
Join Date: Feb 2010
Posts: 8
10 yr Member
klmullican klmullican is offline
Junior Member
 
Join Date: Feb 2010
Posts: 8
10 yr Member
Default RSD Doc in Houston

Quote:
Originally Posted by possum View Post

Howdyfrom unfortunately an old school RSD CRPS vet (although we have done much better than so many others we have know, so i am thankful). For reasons i can't go into we lost our old doctors. Does anyone know any doctors in Houston, or anywhere else in Texas, with good RSD experience that they can recommend to take over treatment?

Thanks more than you can ever know.

Wishing y'all peace, love, and pain-relief,

Possum
We were recommended to take our son to Dr. Phan at the Baylor College of Medicine Pain Management Clinic at the Medical Center in Houston. We like him a lot. He's very young, but he knows what he's talking about most of the time (he did recommend ice, and every post I read says that's a no-no). But he's very positive and encouraging and he listens to us and our son, who is 16. If you hear of anyone else, please let us know. Our son has had 2 nerve blocks which were successful but only lasted several days instead of the 2-3 weeks Dr. Phan had predicted. We're going to see him again this Friday.
God bless.
klmullican is offline   Reply With QuoteReply With Quote
Old 02-25-2010, 08:59 PM #16
Tiff Tiff is offline
Junior Member
 
Join Date: Dec 2009
Location: Texas
Posts: 28
10 yr Member
Tiff Tiff is offline
Junior Member
 
Join Date: Dec 2009
Location: Texas
Posts: 28
10 yr Member
Default

Quote:
Originally Posted by klmullican View Post
Hi! I just got Dr. Krusz's name from Dr. Schwartzman's office in PA. I had called to see if they knew anyone in Houston or Texas. My 16-yr-old son was diagnosed with RSD in November. He's had two nerve blocks which were successful but only lasted a few days the first time and almost a week the 2nd time, which was 2 weeks ago. But his pain took longer to come back each time and wasn't as severe. It was off the scale before, and he was taking 8 Vicadin a day and Neurontin. I was wondering if you would mind sharing info about your daughter. Did she have any nerve blocks and were they successful at all? I'm so sorry to hear that the ketamine infusions didn't work! Also, are you all closer to Dallas? I sure would like to find someone who does that in Houston. Sam's pain management dr. is an anesthesiologist at the Baylor Clinic of Pain in the Neurology Dept. We like him a lot, and he may do ketamine infusions. We go see him again this Friday.
Thanks for any info you wouldn't mind sharing.
Can you go down for an initial consult with Dr. Krusz and then stay with your doctor in Houston? That is what I did. I gained a ton of knowledge from my 2 1/2 hour meeting with him plus I was able to try ketamine for 4 days. Or, know that he does offer phone appointments too so you don't have to go into his office every month. He is a fantastic doctor and I would highly recommend him!
Tiff is offline   Reply With QuoteReply With Quote
Old 09-21-2010, 12:59 PM #17
shoshonitears shoshonitears is offline
New Member
 
Join Date: Sep 2010
Posts: 2
10 yr Member
shoshonitears shoshonitears is offline
New Member
 
Join Date: Sep 2010
Posts: 2
10 yr Member
Default good rsd dr

In answer to your inquiry regarding a good rsd dr, I wish I could find one who specializes in rsd in tx. In houston there is a Dr. Edmonton who adminsters the ketamine treatment, but he is pretty picky who he takes. I tried to get an appointment with him and he would not take me. I'm still looking in the state of Tx. There are several in Florida, Dr Masood Hashmi and Dr. Anthony Kirkpatric.
shoshonitears is offline   Reply With QuoteReply With Quote
Old 02-12-2011, 11:27 AM #18
betsykk betsykk is offline
Member
 
Join Date: Jan 2011
Posts: 175
10 yr Member
betsykk betsykk is offline
Member
 
Join Date: Jan 2011
Posts: 175
10 yr Member
Default This is my OPINION

We went there, got a bank loan to buy the equipment, did everything exactly according to directions with zero results. We were not offered our money back. After trying to get a refund, and writing about our experience to other inquiring patients, we got a legal letter from Dr Rhodes threatening legal action. Nice, huh?
So, according to legalese, I can state my OPINION. This treatment did not work and was a total waste of money and most importantly HOPE. We drove down there based on the fact that his website that he created promised 90% pain relief or better to 90% of his patients. He also told us to bring along my autistic son for treatment as well. Thankfully we declined that at least.
betsykk is offline   Reply With QuoteReply With Quote
Old 02-15-2011, 03:13 PM #19
movingforward movingforward is offline
New Member
 
Join Date: Feb 2011
Posts: 1
10 yr Member
movingforward movingforward is offline
New Member
 
Join Date: Feb 2011
Posts: 1
10 yr Member
Unhappy Really?!

Quote:
Originally Posted by firegirl View Post
Hope you find a new doc that you like. I highly recommend Dr. Donald Rhodes in Corpus Christi, TX. He uses a machine called a Dynatron STS & knows more than any other doctor I've ever met about RSD. Let me know if you have any questions.
In reference to the aforementioned Dr., you must not have been treated by him for RSD/CRPS.....sounds like a planted compliment for the Podiatrist (yes, a foot Dr.....who is NOT Board Certified for Pain Management).

All I can say is do your do diligence and speak to as many patients of his as possible for committing a lot of time and even more money to a treatment that is dubious at best.
movingforward is offline   Reply With QuoteReply With Quote
Old 03-04-2011, 08:47 AM #20
betsykk betsykk is offline
Member
 
Join Date: Jan 2011
Posts: 175
10 yr Member
betsykk betsykk is offline
Member
 
Join Date: Jan 2011
Posts: 175
10 yr Member
Default

For those of you on Facebook, there is a new group being formed to discuss your experience with Dr Rhodes. South Texas Innovative Medicine Discussion Group.
Dr Rhodes is sending letters from his attorney to anyone who is questioning his practice. The Duchennes Muscular Dystrophy group removed discussion of his treatments since they said they could not afford a lawyer in case he sued them. He had moved from RSD to DMD and had generated a lot of interest from parents of suffering children desperate for successful treatment. Nice.

Glad to hear it works for some, but the rest of us should not have to spend $4500 for worthless equipment and a reputable doctor would return calls, emails and letters to try to work something out.

buyer beware.
betsykk is offline   Reply With QuoteReply With Quote
Reply

Tags
rsd crps houston texas


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Looking for a good surgeon - Houston TX. chestw Thoracic Outlet Syndrome 14 06-19-2008 07:22 PM
What makes a good doctor in your opinion? dllfo Social Chat 10 03-22-2008 05:17 AM
Good Doctor Bad Doctor!! AZjanie The Stumble Inn 11 03-18-2008 07:31 PM
Need to find GOOD DOCTOR around Katy texas!!! Motors Mommy Classifieds 1 03-14-2008 02:20 PM
Article from Houston Chronicle on Texas Nerve Surgeons Triste Thoracic Outlet Syndrome 3 11-22-2006 08:57 AM


All times are GMT -5. The time now is 01:11 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.