| Lost password
362 users onlineYou are not loggend in.  Login
Recently diagnosed and looking for advice. (N CA Bay Area)
 1 2 3 4
 1 2 3 4
12/16/2013 18:15
prickler 
12/16/2013 18:15
prickler 
Recently diagnosed and looking for advice. (N CA Bay Area)

Hello all, new 33 y/o male here. Wanted to share my story and look for any advice.

First and foremost the website has been absolutely incredible in providing support and information for Dupuytrens and Ledderhose sufferers. In the past 3 weeks I have spent countless hours browsing the website and forum soaking in as much information as I could. I have been so busy reading I haven't had a chance to post until now.

So my story starts 6 years ago, but has become more urgent in the past 3 weeks. It was 3 weeks as I stepped out of bed I noticed a sharp pain in the arch of my left foot. I reached down to as a natural instinct and as I rubbed my hand along the arch I noticed a pea size lump along the tendon. It definitely concerned me so I immediately went online to see if I could find a possible cause. That is when I first became aware of "fibromas." What really made me believe the lump was a fibroma, other than the classic symptoms, was a lump I've had in my hand for the past 6 years that I have neglected that fits the perfect profile of Dupuytrens with a nodule and cord in my right hand.

I did many hours of reading on the subject online and made an appointment with my primary physician to confirm the diagnosis as I wanted to rule out other possible causes. The Dr agreed I had Dupuytrens in my hand but wasn't familiar with the matching lump on my foot. (I didn't really expect him to know based on the rarity of the disease) Just as I thought based on other peoples experiences I have read, he was only familiar with late term surgery for severe contraction.

Well I don't have contraction in my hand yet and the lump on my foot appears to be in the early stages, so I began exploring my options. I have been intrigued with Radiotherapy and after much research have even contacted Dr S in Hamburg for consultation. Based on the information and pictures I sent him, he responded that prophylactic radiotherapy may be successful in my situation for delaying progression. Obviously he would need to see me in person and palpate for proper evaluation. Being that I live in the United States, going to Germany for a week would be a huge financial and time commitment. I can't afford to go there unless I'm an ideal candidate for RT.

So I turn to the community here for advice. I would like to see a Dr here in the Northern California Bay Area who can properly diagnose me and go over the treatment options with me, specifically radiotherapy. I am more than willing to make the trip to Hamburg if appropriate, but I would like to properly educate and inform myself of the pros and cons of such a life changing decision. Does anybody have any recommendations? Drs I should consult with? Steps I should take? Things I should avoid? Similar experiences? (I'm a Kaiser member if that makes a difference) Any answers would be greatly appreciated!! Thanks for reading.

12/17/2013 06:51
wach 

Administrator

12/17/2013 06:51
wach 

Administrator

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

If you are looking for a doctor in Northern California who is an expert in Dupuytren disease you might try Dr. Keith Denkler in Larkspur http://www.dupuytren-online.info/NA_list_North_America.html. The closest RT expert is probably Dr. Alexander Gottschalk in San Francisco http://www.dupuytren-online.info/radiotherapy_clinics.html. But other members of our Forum might have different suggestions!

Wolfgang

12/20/2013 17:53
pricklerII 
12/20/2013 17:53
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

(I couldn't get back into my account so I had to create another to respond to my original post)

Thanks for the reply Wolfgang. I emailed Dr Gottschalk a few days ago and just got a call from his office yesterday about setting up a consultation. They still need some more information from me before I can actually set up an appointment.

In the meantime I have another appointment with a Kaiser podiatrist in my area. I'm hoping they are familiar with the LD so I can get an educated opinion and further advice on a course of action. It's been 23 days since I first noticed the lump on my foot and I already have noticed more pain and discomfort with walking and I believe it is slightly larger well.

I'm very much looking forward to meeting with Dr Dottschalk about discussing RT. I'm afraid my insurance (Kaiser) isn't going to cover it, so if it's recommended and I can't afford it here in California, I'd like to make the trip to Hamburg to have the procedure performed. I also plan on discussing the possibility of a steroid injection with the podiatrist to see if that's an option.

I'm very anxious and stressed awaiting all these meetings with doctors especially around the holidays. I just very much want to get an answer even if its not what I want to hear. I will keep everybody informed as my journey progresses. This community has provided me with so much information, and I'd like give back by sharing my experience.



(PS does anybody have information or an opinion on RT and Cortisone Injections being used in conjunction with one another?)

12/22/2013 20:58
Christl 
12/22/2013 20:58
Christl 

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Hello Prickler,

You might also consider Dr. T in San Diego. Not sure how many RT sessions Dr. Gottschalk did. I remember, they wanted $ 1200 just for consultation. So I decided right from the get go to see Prof. Seegenschmiedt in Germany and have some RT and vacation time as well for the same amount or less what they would have charged me here in the States. Prof. Seegenschmiedt has done many, many RT Procedures on feet and hand. Seems to me also that RT is the way to go for you since from what I read, your LD is active. You wrote the nodule seems to be getting bigger and starts to hurt more.

I had RT done one year ago for my feet and 2 years ago for my hands. So far so good.

Best of Luck. Where in the Bay Area do you live?

Merry Christmas!

Christl

12/23/2013 16:53
pricklerII 
12/23/2013 16:53
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

$1200 for a consultation?? That's ridiculous. Well If my insurance doesn't cover it, I can't afford that. I'll have to get back to Gottschalks office later in the week after I see my podiatrist today. I just really would like a consultation with a radiologist to explore my options close to home before attempting a flight half way around the world to see Dr. Seegenshcmiedt. I'll definitely look into Scripps if needed.

I'm starting to second guess myself lately. I've been having these strange sensations in my foot that don't necessarily match up with symptoms other people describe with their LD. I've been getting a combination of the painful "walking on a marble" feeling in the middle of my foot close to where the nodule is. I also get a "walking on bunched up socks" feeling in my left heel area, and right ball area. Possibly a nerve issue

I'm starting to wonder if its something else going on in my foot that brought the nodule to my attention or vice versa. I'm nervous about what the podiatrist has to say. I'm not sure what's scarier. Being misdiagnosed, being not taken seriously, hearing bad news, or having the podiatrist not be familiar with LD?

I've been having a lot of anxiety lately and I'm walking that fine line of keeping it to myself and sharing my feelings with my family. I want us to enjoy Christmas so I'm trying to block it out for now. I appreciate being able to share my story and thoughts with people who can relate. I'll keep updating.

12/24/2013 06:40
pricklerII 
12/24/2013 06:40
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Saw the podiatrist today. He's convinced my pain and odd sensations in my feet are being caused by "plantar fasciitis." I expressed my concerns and he agreed to do an xray and MRI to see if there was anything else going on that wasn't obvious. I haven't received the results of either.

Here's my dilemma. I'm not having the burning or itching that is common with plantar fibromas, so for the time being I'm willing to go through the plantar fasciitis protocol for treatment and see if it helps. I was a little concerned with his lack of knowledge of LD, but I'd like to stay on the conservative path for treatment and see if ice, orthotics, and rest will help alleviate my discomfort.

The fibroma is still a single nodule and about the size of a pea, so as long as I don't see obvious progression I'll stick with the wait and see approach. It's my understanding that a dormant nodule can't be radiated effectively and I can't say for sure that it's active. I'll continue to keep track of it and go from there. Updates to continue.

12/24/2013 07:46
spanishbuddha 

Administrator

12/24/2013 07:46
spanishbuddha 

Administrator

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

There's a distinct symptom for plantar fasciitus. When you sleep at night your feet curl as the plantar contracts, so when you awake in the morning and take that first weight bearing step and stretch the plantar there is pain.

I had plantar fasciitus and treatment, stretching, rolling, orthotics, the night boot (which alleviates the symptom described above), but it still took two years or so for it to go. The most significant thing that helped me was wearing a particular type of sandal. Interestingly perhaps, they use RT to treat plantar fasciitus in Germany, using a lower dose than for DD.

Edited 12/24/13 09:47

01/08/2014 19:04
pricklerII 
01/08/2014 19:04
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Had an MRI done on my foot with the nodule a few days ago and I have an appointment to speak with the podiatrist in 2 days to find out the results of what they found. I'm a bit anxious at this point so I figured I'd give a quick update to this thread while it's weighing on my mind.

I'm trying not to let the pain or negative thoughts cloud my mind. I've been doing a lot of icing, stretching, and resting to give me foot a chance to heal if this discomfort is indeed the result of plantar fasciitis, but I can't help but think that the nodule is playing a role with the symptoms regardless of the podiatrists initial impression.

I also starting taking NAC 1800mg per day starting last week. Not much to add in that department but I'll update any results or lack of in a few months after giving it time.

I usually end up palpating the nodule several times a day just because I have become so self aware of my foot now. I can't help but think sometimes it is larger and flatter, and some days it seems smaller and rounder. Not sure if it's my imagination? The result of walking, resting, icing, or inflammation? Does anybody else experience a fluctuation in shape, size, or firmness on a daily basis? I'm not sure if my mind is playing tricks on me but I'm going to try and keep track of progression with pictures and measurements on a monthly basis at the very least. I want to be vigilant about monitoring and keeping this disease under control the best I can.

01/08/2014 21:44
Christl 
01/08/2014 21:44
Christl 

Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Hello Prickler,
Your mind is not playing tricks on you. My nodules are larger at night. ( I guess it is from walking all day long on them and therefore they swell up). They are harder in the morning and softer and flatter at night, yet bigger.
Good luck with the podiatrist, mine was totally useless. He had not heard of Ledderhose Disease, or plantar fibromas before. What I find very interesting is the fact that this disease is NOT rare at all. It is amazing how many people have nodules in their feet, most do not hurt and therefore they don't even know they have Ledderhose disease. Looking back, I must have had nodules for some time, every time I went for a walk my feet were hurting for awhile and then the pain just went away. Never even did it cross my mind that there could be something wrong. Once my DD kicked in, that is when I checked my feet and sure enough I had nodules and the rest is history.

Good Luck.

Christl

01/11/2014 00:05
pricklerII 
01/11/2014 00:05
pricklerII 
Re: Recently diagnosed and looking for advice. (N CA Bay Area)

Thanks everyone for the replys. Its comforting being able to share my experience and get opinions from people who have been in my position. I have the support and sympathy from family, but they just can't relate and it's hard for them to understand what I am going through.

Well I got the results from my MRI today and the podiatrist confirmed that I have a fibroma. (no surprise there) They didn't find anything else unusual and the doctor is sticking by his diagnosis that my pain is the result of plantar fasciitis. I guess I'm relieved that there isn't anything else obviously wrong with my foot and at least I'll have a copy of my MRI for future reference. Another part of me thinks it was a waste of money to do the MRI, especially under the care of a podiatrist who has no interest in treating fibromas. According to him they are common, painless, benign, and only need to be treated with surgery if they affect walking.

Needless to say I have no plans on ever meeting with him again. It went pretty much the way I envisioned after reading the experiences of others on this board. If anything it gave me a "medical opinion", ruled out some other things, and now I can focus on treating the LD and DD.

My next step will be to get in contact with Dr Gottschalks office at UCSF and find out how unaffordable it will be for radiation treatment, as I'm pretty sure my insurance plan won't touch such a procedure. At the very least I'd like to speak with an oncologist in person who has experience treating the disease. I'd like to get another professional opinion and ask some questions in person.

As usual I'll continue to update my journey as it progresses.

 1 2 3 4
 1 2 3 4
information   looking   Recently   research   Germany   disease   diagnosed   dupuytren-online   plantar   injection   discomfort   podiatrist   treatment   consultation   Seegenschmiedt   Cortisone   fibroma   experience   nodules   walking