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Update on my situation
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05/14/2010 11:53
TangoGirl 
05/14/2010 11:53
TangoGirl 
Update on my situation

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

I saw my ortho this past Monday and the MRI results were disappointing. There was so much inflammation that the MRI told us no more than we could see by visual inspection. My doc said he is 99% sure I have LD but he has never seen a LD patient with so much inflammation and said the next step should be a biopsy. We discussed the surgery (not that I want it) and he confirmed that in my case, we would be talking major surgery with possible, tendon, bone and skin grafts, requiring repeat surgeries to reconstruct my foot. He has referred me to MD Anderson Cancer Center because they have the resources under one roof. The problem with MDACC can be a lengthy wait to be seen, unless you have "connections." I do know people on staff since my husband is a patient there. With the combined efforts of my ortho's connections and mine; I have an appointment for 19 May. From my experience, this will be more of a "getting to know you" session, but it's part of the process. Ironically, my foot still hurts, but looks less inflammed in the past few days. Several of the nodules seem to have "calmed down" and some of the newest ones almost appear to have joined together to form a large lump. I don't know if I had mentioned it in my previous thread, but for about 3 weeks now, my big toe has been overlapping the adjacent toe, which concerns both my ortho and me. He asked me to try to move them apart and I can't; although I can separate them manually, but they go right back when I let go. I had talked to an acquaintance who is head of one of the radiology units at MDACC if they would do RT on non-malignant tumors and was told there were some that would consider it. Regardless of my diagnosis, I will pursue the RT for LD question so I can keep my friends in the forum advised. We need more facilities available to perform RT for LD. More news when I have it.
Best regards, TG

05/14/2010 14:55
LubaM. 
05/14/2010 14:55
LubaM. 
Re: Update on my situation

tangogirl...

Definitely pursue the RT route first. I've seen too many negative reports on this forum about surgery for Ledderhose... you can always opt for surgery if the RT doesn't work...

05/14/2010 23:12
TangoGirl 
05/14/2010 23:12
TangoGirl 
Re: Update on my situation

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

Luba, thanks for your response and yes; I am most certainly going to pursue RT. I feel in limbo until I get a confirmed diagnosis. I suspect my slight improvement indicates that my LD may be leaving the most active phase and I hope that doesn't mean I get treated with a lesser sense of urgency. I am also frustrated because I am starting to over-analyse any sympton. My right arch is starting to bother me, but I haven't seen any lumps. I believe it may just that my right leg and foot are tired of doing more than their share of the work and then my right shoulder has been quite sore for about a week. Gosh, I just reread this and I just sound like a grumpy whiner. It seems an attitude adjustment is in order! I'll report back after I have some news from my visit to the new doctors. Take care and best regards - TG

05/19/2010 21:21
TangoGirl 
05/19/2010 21:21
TangoGirl 
Re: Update on my situation

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

I spent today at MD Anderson, but the Ortho I was supposed to see got pulled into emergency surgery, so no news to report. On the positive side, I got all the registration out of the way. I did get seen by another doctor, who seemes to concur I have LD. Now I wait for the Ortho to call me. More waiting....and patience is not my strongpoint. I'll post more news when I have it.

Regards,
TG

05/20/2010 10:47
yachtflame

not registered

05/20/2010 10:47
yachtflame

not registered

Re: Update on my situation

I have a simular situation in that my big toe on my left foot is starting to curl downwards like some of my fingers. i have many large nodules on both of my feet. I've talked to two of the Dr.s in Germany listed on this site and both feel that I should have the NA procedure, then follow up with the Radiation treatments. I called Mass. General in Boston and find that they want $41K to do just the radiation. In Germany, the NA proceedure is 464 Euros per foot and then either 910 Euros or 2000 Euros depending on which clinic I use. So in Berlin, the NA and Radiation for both feet plus 2 round trip air fair, hotels and cabs it comes to around $7000. I can buy a car with the extra!!
Check with Dr. Korner or Dr. Herkstroter and see if this might be a better way to go.
Spring in Germany seems like a nice trip. I have an appointment with Dr. Korner on June 9, 2010. I'll let you know how it works out.
Wayne

05/20/2010 18:55
jimh 
05/20/2010 18:55
jimh 
Re: Update on my situation

41K. Forty-one thousand dollars.

Health care here in the U.S. is now officially a madhouse. It's like the real estate bubble we just went through, where the lenders lost the ability to realistically price assets, and just agreed to any figure anyone chose to name.

Of course 41K isn't the real price - an insurer might offer half of that, and the provider might accept it. But God help you if you live in the U.S. and don't have insurance - in that case, it's 41K and no negotiation unless you file bankruptcy.

05/20/2010 21:38
TangoGirl 
05/20/2010 21:38
TangoGirl 
Re: Update on my situation

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

I hear y'all on the costs. I wanted to see if I could be treated here locally (with insurance benefits) first, because that's most convenient. My husband was very ill two years ago and I had to take a lot of time off work. If I strike out here, then I will probably go to Hamburg, where I have many friends and business connections. 41K? That's absurd!

05/21/2010 18:19
Wolfgang

not registered

05/21/2010 18:19
Wolfgang

not registered

Re: Update on my situation

If you want to save money you might consider being treated Essen. I don't know the pricing in Essen or in Hamburg but in Essen it's also Seegenschmiedt and in Essen they are using x-ray equipment which ought to be cheaper.

Wolfgang

05/22/2010 02:23
TangoGirl 
05/22/2010 02:23
TangoGirl 
Re: Update on my situation

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

Thanks Wolfgang! I will probably check out both clinics in Germany. I did get a call back today from MD Anderson and they have scheduled another MRI for next week, this time with contrast. Since my previous Ortho felt pretty confident I have LD, but was concerned because he has seen about a hundred cases and none with the amount of inflammation mine had; I feel I should follow through and get a confirmed diagnosis. Of course, MD Anderson wants to rule out cancer because they are a cancer center, though I'm confident I don't have cancer. The area where my first nodules flared up two months ago looks better, and nodules number 7 & 8 are still there, possibly 5 & 6, though they are harder to locate now. Once I get a confirmed diagnosis, I'll see what MD Anderson proposes and then what I want and what might be covered by insurance. It was quite warm here today (close to 100 F), and my cast is so hot that I tried wearing a shoe tonight when we went out for a bit. Not terrible, but certainly not very comfortable. I'm trying very hard to remember just one step at a time.

Regards, TG

07/13/2011 15:28
SSDisability 
07/13/2011 15:28
SSDisability 
Re: Update on my situation

If you are still unable to work due to your disabling condition, Social Secuirty Disability Insurance might be the best route for you to go. www.socialsecurity-disability.orgSocial Security has a very strict definition of “disability.” To be considered disabled in accordance with the guidelines set forth by the Social Security Administration (SSA), you must meet the following criteria:

* You cannot perform your previous occupation.
* You cannot adjust to other work because of your medical condition(s).
* Your medical condition(s) must last or be expected to last for at least one year and/or to result in death.

Edited 07/13/11 18:28

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