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03/18/2011 15:47
LindaM 
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03/18/2011 15:47
LindaM
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Re: Experience with RT in Northern California?
Sorry I meant to say RT fo LD......
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03/18/2011 17:04
bill_c 
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03/18/2011 17:04
bill_c
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Re: Experience with RT in Northern California?
Thanks everyone for all of your advice! It's amazing that 3% or more of the US population has DC and yet the healthcare system seems minimally prepared to deal with it. Lori, I will do what you're saying and get written diagnosis of DD first (no contracture yet). I'm willing to foot the bill to go to Germany if I have to, so I'm certainly willing to pay out of pocket to go to Dr. Chang or Dr. Gottschalk.
My insurance is Western Health Advantage - a local Sacramento group that sprang from a partnership between Sutter Health and UC Davis Med Center. They have excellent customer service and it sounds like their process for approving coverage is fairly quick, which is important in my case. I'll keep everyone posted on the developments as they move along. In the meantime, if anyone has recommendations or warnings about RT, Dr. Chang or Dr. Gottschalk, the more information I can obtain, the better.
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03/18/2011 17:43
bill_c
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03/18/2011 17:43
bill_c
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Re: Experience with RT in Northern California?
Quick update: I just talked with the offices of both Dr. Chang and Dr. Gottschalk. Dr. Chang's nurse said that he had performed well over 100 procedures, no definitive answer from Dr. Gottschalk's office. Both said they were receiving a large number of requests from outside of the state, which is interesting considering how populated the Bay Area is. Both offices sounded fairly confident that they could help me navigate through the morass that is the health coverage approval process. I am much more comfortable with the thought of getting approved after speaking with them.
Now if I could only get a call back from the hand specialist to schedule an appointment so that I can obtain an official diagnosis. I know these docs are all busy but time's a-wastin'...
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03/21/2011 18:03
bill_c
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03/21/2011 18:03
bill_c
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Re: Experience with RT in Northern California?
One more quick update. I talked with my parents last night and they don't know of any family history of Dupuytren's that they can think of. Not with my parents or any of their siblings, parents, grandparents or aunts and uncles. However, we are of Irish descent, so the genetic link for me could go back further. My hope is that this means that my progression won't be too severe but the fact that it's showing up when I'm 40 causes some concern. So far, it's just in my left hand and I'm thankful for that.
I received a call from the hand orthopedist this morning and I have an appointment to see him tomorrow morning to get an official diagnosis. Thanks to all of the information on this site, I am armed and ready to press forward for RT first. Hopefully, the orthopedist is receptive - but if not, I just need a written diagnosis for now.
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03/21/2011 20:28
lauriw 
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03/21/2011 20:28
lauriw
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Re: Experience with RT in Northern California?
Bill,
Good luck with your appointment. I never needed written confimation of my DD, my hand ortho said I had it and that is what I told the radiologist. Since my hand is textbook, no one ever asked for anything from the ortho. Good luck with your journey, it is great to even have a plan. LIke you, I cannot find anyone in my family with the disease, we are a big family, my dad was full German and I am amazed that so far I am the only one to have DD. Being a woman that makes it even more surprising since this disease is 3 to 1 for men to women. I'm sure that you already know that the younger your symptoms present, typically the more aggessive the disease. That said, Dupuytren's is a funny disease and it may only be in your one hand. After my right hand was diagnosed I started seeing small changes in my left hand a month later. It has not been as aggressive as my right hand but it is still on the growing, bummer, but once you start RT you feel like you can stop the progression and that is the goal. Now that I am getting treated I am not as obsessed with worrying about further deformity and crippled fingers. I know it is not 100% but it is pretty good odds.
I look forward to hearing how things go for you and again if you need help with insurance I'll be glad to share my story with you.
LauriW
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03/21/2011 20:54
bill_c
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03/21/2011 20:54
bill_c
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Re: Experience with RT in Northern California?
Thanks Lauriw! You know what's interesting? The more I have watched NA / Xiaflex treatments online and have seen people recover - even after letting their disease go way too long without treatment - the more I feel comfortable that I don't have to sit around freaking out about being deformed. I guess I'm being desensitized to it, which is good, because when I first figured out what I had, I had a couple of sleepless nights. Now, I just don't plan to give in to it without a good fight.
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03/22/2011 17:02
bill_c
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03/22/2011 17:02
bill_c
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Re: Experience with RT in Northern California?
Another update. Met with another doctor today. Actually, an orthopedist who specializes in back surgery but also does hand surgery. I'll have to thank my GP for referring me to a doctor who is of no use to me at this moment. He confirmed that I have Dupuytren's but wouldn't put it in writing because he wasn't 100% certain and he thought that I should see a hand specialist first. Funny, I asked my GP to refer me to a hand specialist. So now orthopedist is referring me to a hand specialist. I have lots of questions for a hand specialist anyway - ones that I'm sure will be met with equivocating responses, but what the heck, right?
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03/27/2012 09:16
RichSF
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03/27/2012 09:16
RichSF
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Re: Experience with RT in Northern California?
Bill
I'm where you were a year ago. At the moment i'm new , diagnosed 2 mos ago and live in San Francisco, and i'm checking on RT in the area.. at UCSF AND STANFORD.. I saw Dr Gottschalk last friday and plan to see Dr Chang next week...i also am trying to see Dr Penny Snead at UCSF. Germany is also an option but it looks like my insurance will cover me here so it's an economic relief. My concern is getting the best treatment and i wonder if that's in Germany..Those guys have the most experience. Also the treatment at Dr G's office is a 7 day regime, Stanford it's 5 +5..
Right now i just have 2 small nodules and a small cord growing in my left hand between the thumb and index finger in the web area and a small cord in he lower part of my right hand. I am a Fine Artist, and I just turned 68 in Feb ... great BD present!!!
At any rate i feel the need to get something going soon so i can relax behind the idea that i'm being proactive and slowing it down instead of watching and waiting and constantly wringing my hands waiting for the worst to happen so the docs can sharpen their knives on me!!
So... fnow that it's been a year later for you ,,, did you do RT, if so, who did it; what did you do;(7 day/5+5 ??} and how did it turn out. Also what's your condition like now??
bill_c:
Another update. Met with another doctor today. Actually, an orthopedist who specializes in back surgery but also does hand surgery. I'll have to thank my GP for referring me to a doctor who is of no use to me at this moment. He confirmed that I have Dupuytren's but wouldn't put it in writing because he wasn't 100% certain and he thought that I should see a hand specialist first. Funny, I asked my GP to refer me to a hand specialist. So now orthopedist is referring me to a hand specialist. I have lots of questions for a hand specialist anyway - ones that I'm sure will be met with equivocating responses, but what the heck, right?
Edited 03/27/12 12:18
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03/27/2012 15:47
bill_c
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03/27/2012 15:47
bill_c
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Re: Experience with RT in Northern California?
Hi Rich,
I ended up meeting with a hand specialist not long after that. She confirmed that I did indeed have Dupuytren's and talked through the various options. Having done my research on this site, I already knew what the options were. She said that in the last 5 years, Xiaflex has been a miracle drug. She also said that people were being approved to have the Xiaflex procedure done up to 8 times in their lifetimes and that the number of times it could be done will probably increase over time. She also said that my medical group had a doctor who she trusted that does RT and that she would be happy to refer me to him/her (forgot the name).
When I first noticed the problem three years ago, I had been lifting weights a few days a week. At the time of the meeting with the specialist, I hadn't been lifting weights for several months. In fact, I stopped lifting weights until January of this year. Coincidentally, the progression seemed to be almost non-existent. Because of that, I decided to go into "wait-and-see" mode and not do anything until things were on the move again.
I started lifting weights again this January and it seems to be on the move again. It's slow but I notice small changes. I'll continue to monitor over the next year and will make a decision on how to move forward later. I'm 41, so I don't want to make any rash decisions that I might regret later, based on fear.
As for you, you're in a similar situation with my mom. She's 70 and has two distinct cords in the palm of her right hand. I told her that I thought she should look into RT immediately because it seems to be moving quickly. She'll also be a good candidate for needle aponeurotomy because the cords are so distinct. Either way, she doesn't seem overly concerned about it and it doesn't bother her right now. I think she's probably not going to do much at the moment. Talking about this reminds me that I need to push her to take action soon.
If I were you, taking age into consideration, I would find a good doctor here and get RT done soon. If your insurance will cover it and you can find a doctor who can prove his/her methods are successful (I know that's easier said than done), it's worth staying here. Or, take a vacation in Germany! I just think the risk/potential reward involved is so beneficial that it is worth trying. Just keep in mind that this is one of the more benign autoimmune diseases you could get and hold your worry in check since there are alternatives to going under the knife. Meeting with the hand specialist was the best thing I could have done because she essentially said there would be no need to have surgery for the condition in my lifetime. I have friends who have 6 children and 4 of them have a terminal disease. So cheer up! It could definitely be worse.
Thanks for getting me back on this site. I do need to be prepared to make decisions about my treatment soon. RT will be my likely first course of action.
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04/09/2012 02:29
robablo
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04/09/2012 02:29
robablo
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Re: Experience with RT in Northern California?
RichSF:
Bill
I'm where you were a year ago. At the moment i'm new , diagnosed 2 mos ago and live in San Francisco, and i'm checking on RT in the area.. at UCSF AND STANFORD.. I saw Dr Gottschalk last friday and plan to see Dr Chang next week...i also am trying to see Dr Penny Snead at UCSF. Germany is also an option but it looks like my insurance will cover me here so it's an economic relief. My concern is getting the best treatment and i wonder if that's in Germany..Those guys have the most experience. Also the treatment at Dr G's office is a 7 day regime, Stanford it's 5 +5..
Right now i just have 2 small nodules and a small cord growing in my left hand between the thumb and index finger in the web area and a small cord in he lower part of my right hand. I am a Fine Artist, and I just turned 68 in Feb ... great BD present!!!
At any rate i feel the need to get something going soon so i can relax behind the idea that i'm being proactive and slowing it down instead of watching and waiting and constantly wringing my hands waiting for the worst to happen so the docs can sharpen their knives on me!!
So... fnow that it's been a year later for you ,,, did you do RT, if so, who did it; what did you do;(7 day/5+5 ??} and how did it turn out. Also what's your condition like now??
bill_c:
Another update. Met with another doctor today. Actually, an orthopedist who specializes in back surgery but also does hand surgery. I'll have to thank my GP for referring me to a doctor who is of no use to me at this moment. He confirmed that I have Dupuytren's but wouldn't put it in writing because he wasn't 100% certain and he thought that I should see a hand specialist first. Funny, I asked my GP to refer me to a hand specialist. So now orthopedist is referring me to a hand specialist. I have lots of questions for a hand specialist anyway - ones that I'm sure will be met with equivocating responses, but what the heck, right?
68 years-old? Count your blessings. Try being 34 and being diagnosed with both DD and LD within two weeks of one another by a hand specialist and a podiatrist.
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