| Radiation in San Diego |
|
|
1 2 3 4
|
| 1 2 3 4
|
|
12/13/2009 23:42
homeboymi 
|
12/13/2009 23:42
homeboymi
|
Re: Radiation in San Diego
I am so happy that the pain has left the palm of my hand since radiation. It seems to get better everyday and I am now using my right hand regularly. I noticed today I was gripping the steering wheel with my hand wrapped completely around it. Before, I gripped it with my four curled fingers keeping my palm away from it to prevent pain. I can shake hands now which I couldn't before. It's hard to express how happy I am and grateful to have found this website. Every doctor I showed my hand to said to wait until contracture and then surgery. One doctor (Orthopedic Surgeon) said he never heard of NA: thought cortisone shot wasn't the answer and radiation was a bad idea.
I don't see any shrinkage of my nodules yet. As long as they don't hurt, who cares? Only problem is a fortune teller would have a hard time reading my palm. lol
|
|
|
|
|
12/14/2009 03:33
flojo 
|
12/14/2009 03:33
flojo
|
Re: Radiation in San Diego
Just thinking about what a palm reader would do with our Dupuytren's hands is very funny!
Hope your hand continues to show improvement after your RT.
|
|
|
|
|
12/14/2009 16:47
LubaM 
|
12/14/2009 16:47
LubaM
|
Re: Radiation in San Diego
"homeboymi".....I'm glad to hear about your improvement...I think you did RT with Dr. T.just after me (I finished 11/20) I'll keep checking this thread to see how you and "fojo" are doing... I also had a hand orthopedic surgeon tell me he was totally against NA and RT.
My hand slowly continues to improve, a few nodules are much softer and others are beginning to soften up. So far I'm very happy.
|
|
|
|
|
12/15/2009 02:21
jocond 
|
12/15/2009 02:21
jocond
|
Re: Radiation in San Diego
Quote:
Just thinking about what a palm reader would do with our Dupuytren's hands is very funny!
Hope your hand continues to show improvement after your RT.
As much as this inconvenience is for our hands it's always good to have some sort of sense of humor. Your comment about the palm reader made laugh pretty hard. All I could think of is them saying "Well I can tell you lived in a mountainous region" you take it from there.
On a positive note I'm scheduled with Dr Pess this thursday to do NA on my right hand. Very excited. Had my left hand done in January by him and doing good so far.
Joe
|
|
|
|
|
08/11/2010 17:29
Larry
|
08/11/2010 17:29
Larry
|
Re: Radiation in San Diego
homeboymi:
I am so happy that the pain has left the palm of my hand since radiation. It seems to get better everyday and I am now using my right hand regularly. I noticed today I was gripping the steering wheel with my hand wrapped completely around it. Before, I gripped it with my four curled fingers keeping my palm away from it to prevent pain. I can shake hands now which I couldn't before. It's hard to express how happy I am and grateful to have found this website. Every doctor I showed my hand to said to wait until contracture and then surgery. One doctor (Orthopedic Surgeon) said he never heard of NA: thought cortisone shot wasn't the answer and radiation was a bad idea.
I don't see any shrinkage of my nodules yet. As long as they don't hurt, who cares? Only problem is a fortune teller would have a hard time reading my palm. lol
That's the worst news which are common in the USA and in many other countries worldwide :
neither GPs nor specialists (Orthopedic Surgeons, etc.) keep an eye on other ways to examine and explore
this bad disease ... cortisone shots are common but useless, advice on later surgery is fatal, and advice
about radiotherapy are just a fear of avoiding the most effective treatment in early stage Dupuytren's disease.
With regard to RT I must confess, that I am convinced about the schedule use in Germany; they had the
longest experience (over 10 years) with different RT schedules and the one which is used in LaJolla (Dr. T.)
is not the schedule which is used by Prof. Seegenschmiedt in Germany, as the doctors in California treat for
2 weeks and 10 sessions which is more risky for early and late side effects than the "German concept"
with 10 sessions given in 5 sessions separated by 3 months. I was treated with this latter scheme for my
Ledderhose (now starting to get Dupuytren ... ), but the person to contact would be Prof. Seegenschmiedt
in Hamburg (Germany) who has treated several hundreds of patients ... he also has educated the doctors
in USA who have just started to do a few treatments ... so explote about the difference between the two
RT schedules !
|
|
|
|
|
12/16/2010 12:17
susanelizabeth
|
12/16/2010 12:17
susanelizabeth
|
Re: Radiation in San Diego
Larry:
homeboymi:
I am so happy that the pain has left the palm of my hand since radiation. It seems to get better everyday and I am now using my right hand regularly. I noticed today I was gripping the steering wheel with my hand wrapped completely around it. Before, I gripped it with my four curled fingers keeping my palm away from it to prevent pain. I can shake hands now which I couldn't before. It's hard to express how happy I am and grateful to have found this website. Every doctor I showed my hand to said to wait until contracture and then surgery. One doctor (Orthopedic Surgeon) said he never heard of NA: thought cortisone shot wasn't the answer and radiation was a bad idea.
I don't see any shrinkage of my nodules yet. As long as they don't hurt, who cares? Only problem is a fortune teller would have a hard time reading my palm. lol
That's the worst news which are common in the USA and in many other countries worldwide :
neither GPs nor specialists (Orthopedic Surgeons, etc.) keep an eye on other ways to examine and explore
this bad disease ... cortisone shots are common but useless, advice on later surgery is fatal, and advice
about radiotherapy are just a fear of avoiding the most effective treatment in early stage Dupuytren's disease.
With regard to RT I must confess, that I am convinced about the schedule use in Germany; they had the
longest experience (over 10 years) with different RT schedules and the one which is used in LaJolla (Dr. T.)
is not the schedule which is used by Prof. Seegenschmiedt in Germany, as the doctors in California treat for
2 weeks and 10 sessions which is more risky for early and late side effects than the "German concept"
with 10 sessions given in 5 sessions separated by 3 months. I was treated with this latter scheme for my
Ledderhose (now starting to get Dupuytren ... ), but the person to contact would be Prof. Seegenschmiedt
in Hamburg (Germany) who has treated several hundreds of patients ... he also has educated the doctors
in USA who have just started to do a few treatments ... so explote about the difference between the two
RT schedules !
Hello, I am new here and have just begun to wade through all the information. Quickly, I have just been diagnosed the second time. I live in Mexico and was first diagnosed last month in Pennsylvania while I was visiting my sister there. I got a referral to a hand specialist "with good reputation" but my (military insurance) Tri-Care needed a "referral" from my regular health care provider who refused without seeing me first! I am in Utah (near Salt Lake City) this week and just saw the reg. healthcare provider, who gave the second diagnosis and shot my hands up with cortisone. I was not prepared for the pain. He told me that nothing else could be done till I needed surgery. Thank GOD for sites like this that tell us more.
Here is my deal, I can generally qualify for civilian care if I am over 50 miles from a military facility that offers healthcare. There is a chance I can get referred to a specialist but I am not confident. However, I am 2 hours from San Diego and that is where I typically shop. If I force the issue or change primary care guys I can get a referral in Pennsylvania and stay with my sister for treatment. She lives just outside of Philadelphia and I have family south Pittsburg as well. I can try for San Diego or somebody, if there is somebody, in the Salt Lake City area. Do you have any advice????
I have nodules in both hands with slight dimpling. Since the cortisone, pain has increased significantly. I am using some essential oils, magnesium lotion and iodide, vitamin E, DMSO and taking PABA. I have a prescription for vicodin for back issues that was increased due to a bad shoulder injury last year. That is also weird. My shoulder is worse and I read here there may be a connection. I was feeding a stud when he lunged at me, grabbed my shoulder in his teeth lifting me off the ground and after what seemed like forever but was merely seconds, threw me back to the ground. My joint capsule was crushed but I did not know that for three months when I finally went in because an "abscess" had formed and recovery seemed slow to me. That turned out to be joint fluid, but I ended up getting an MRI after that. MRI results indicated that I had previous conditions of bursitis which I am not really believing as the injury was three months old at the time and I had NO PAIN OR ISSUES before the horse incident. At the time of the incident, I did not think the injury required a trip to the states or medical care. I am 54 and like to think I am tough but I am not. I never cried after the horse thing but was reduced to tears by the cortisone and this whole thing has me quite freaked out. Any advice would be greatly appreciated!!!!
|
|
|
|
|
12/18/2010 06:10
rakuku
|
12/18/2010 06:10
rakuku
|
Re: Radiation in San Diego
So I have been away from the forum for awhile as my dd had been sort of inactive. but now its kicked up again with new nodules. got some cortisone from Dr. Denkler who is recommending xiaflex. may do that but radiation is appealing as i mainly have a bunch of new nodules and would sure like to put a stop to them. So radiation is generally 10 treatments over two weeks? Is Scrips and Dr. T the best place to go? I have family in that area and could go stay there. Does Anthem cover radiation? So much to find out and consider. rakuku
|
|
|
|
|
12/18/2010 15:33
homeboymi
|
12/18/2010 15:33
homeboymi
|
Re: Radiation in San Diego
I am following up with this post I made a year ago in regards to radiation of my hand. As you have read in the beginning of this post, the pain subsided and I had use once again of my hand.
Unfortunately, the pain has returned and the nodules are growing again. I don't plan to return for more radiation because I feel it is too dangerous. I will wait for contracture and have NA performed on it. Please keep in mind that I don't like CAT scans, dental Xrays or anything that might cause cancer. Having radiation done to my hand was a big step for me but I was desperate to stop the nodules from growing and losing the use of my right hand. I tried it and it didn't work!
I can't find my records but I think Anthem covered the thousands of dollars these people charged for the radiation except for my yearly deductable. I can't find my records but I think it was close to $2,000.
|
|
|
|
|
12/18/2010 19:51
spanishbuddha  Administrator
|
12/18/2010 19:51
spanishbuddha Administrator
|
Re: Radiation in San Diego
homeboymi:
I am following up with this post I made a year ago in regards to radiation of my hand. As you have read in the beginning of this post, the pain subsided and I had use once again of my hand.
Unfortunately, the pain has returned and the nodules are growing again. I don't plan to return for more radiation because I feel it is too dangerous. I will wait for contracture and have NA performed on it. Please keep in mind that I don't like CAT scans, dental Xrays or anything that might cause cancer. Having radiation done to my hand was a big step for me but I was desperate to stop the nodules from growing and losing the use of my right hand. I tried it and it didn't work!
I can't find my records but I think Anthem covered the thousands of dollars these people charged for the radiation except for my yearly deductable. I can't find my records but I think it was close to $2,000.
Thanks for the update homeboymi.
I am sorry to hear that the pain has returned and the nodules are growing.
Are the nodules new or the old and radiated ones that are growing?
Do you remember the exact RT protocol? You mention 10 doses, how much and what was the interval(s) between treatment.
It seems that RT does not always work, for everyone, and it would help to gain a better understanding of cases when it does or doesn't work.
Best wishes - have you also considered Xiaflex as an option in the future?
|
|
|
|
|
12/20/2010 04:01
flojo
|
12/20/2010 04:01
flojo
|
Re: Radiation in San Diego
I had RT and would say that it worked for me. It significantly slowed the progression of very active DD in most of my right hand. Small areas outside the radiated area flared up again.
I am glad I had it done. Nobody can know for sure, but I think I would be looking at surgery by now if I had not had RT.
|
|
|
|
|
|
1 2 3 4
|
| 1 2 3 4
|
216 users online
Login
