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Update re RT treatment
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07/19/2011 09:41
Cyclist 
07/19/2011 09:41
Cyclist 

Re: Update re RT treatment

Hello Larry
Always good to hear from you and your enthusiasm is contagious! I bought a red massage ball when I was in Germany the last time - it's great. Only 5 euros. Will see if I can get one of the other shape here.

Take care
Di

Larry:
Hallo cyclist,

congratulation on your success ! It was exactly as you described for me, when I was treated for Ledderhose: the first Radiotherapy Round created a lot of symptoms which I initially considered as "worsening situation", however it was the active response of the body and the foot tissue which reacted to the first "real enemy" of the proliferating fibroblasts, the X-ray ! Round Two was much easier for me and despite aquite aggressive behaviour before I am now in a complete stable condition with my feet !

Prof. Seegenschmiedt gave me quite good advices for my foot care and the avoidance of specific strain situations; he also recommended the soft and gentle massage with the specific balls which I have shown in a previous thread. They come along in various sizes and colours and are relatively cheap (about 10 Euro):



Recently I had a conversation with Prof. Seegenschmiedt when I got treatment for one of my hands which progressed despite a stable situation of my feet and he showed me another form of massage tool which looked like a cylindrical roller or cucumber with knobs ... Its called "Togu Body Roll"



I find this also useful for my feet ! Further good success, Larry

07/19/2011 10:19
Cyclist 
07/19/2011 10:19
Cyclist 

Re: Update re RT treatment

Hi Debbie
I've found massage is really good. Also, it increases the perfusion (blood flow bringing oxygen to the area) and Prof S. has explained that there is a line of thought that a lactic environment (or lack of oxygen) may be one factor in encouraging this condition. The other good advice Prof S. gave me on a couple of occasions is to 'try things out' to see how it works for you.

Try a gentle foot rub with some urea cream into the areas that hurt and then as you get used to massage, progress to a light massage with one of these massage balls and increase the pressure if it feels okay. It always feels a bit uncomfortable and hard at first, especially when the nodule is hard and swollen, but as you persist, it softens and feels better. Takes the sting out of the nodule pain when it's really uncomfortable or swollen. Get a massage ball with the softer, more flexible spikes if you can (as opposed to the ones with the less flexible, cone shaped spikes) as (despite the scary appearance) they give you a gentler massage and really get into the nodules and soften them up. Until you get one, you could try massaging with a tennis ball.

I'll write some things about my MRI experience in a separate message, as it's not really a direct answer to your questions, but might be of interest

All the best to you Debbie and keep us posted!!
Di




debrr:
Hello!
Does anyone in the US know where I can purchase these balls or body rolls? I also worry the massage may make them worse. It seems even touching them hurts. Any thoughts? Do you massage just the nodules? Because have pain in the balls of my feet and now recently in my heels as well. The cords are very thick now after first round of RT!
I am planning on contacting my doc today and requested another MRI of my feet prior to further treatment. Then making contact with Dr. T at Scripps and Dr. S in Germany. Has anyone else had foot MRI after the 1st round of RT and before 2nd round. Anyone want to share those results?
Does anyone else seem to notice increased pain with weather change (ie barometric pressure change, humidiity)?
Good wishes to all of you!

07/19/2011 10:21
Cyclist 
07/19/2011 10:21
Cyclist 

Re: Update re RT treatment

My MRI revealed swelling and inflammation and that one of my 'nodules' was actually a conglomerate of little nodules - imagine what that was going to be like if I'd left it to mature!

Not sure if having a conglomerate of nodules is a good thing or a bad thing in terms of how effective the RT will be!
The 'smaller' nodule on the other foot turned out to be at a more progressed state as it had infiltrated the tissue and tendon, so that explained why it hurt more than the much larger conglomerate nodule.

It might be worth sharing that the MRI in Germany is very expensive - over 1000 Euros (eeek!), so others planning treatment in Germany might want to consider having a MRI done first and taking it to show Prof S. in Germany if you go there for treatment. In Australia, anyone (with or without insurance) can get a MRI for a couple of hundred dollars if referred by a specialist.

All the best
Di

07/20/2011 04:04
Cyclist 
07/20/2011 04:04
Cyclist 

Re: Update re RT treatment

Note that the cost of the MRI is NOT included in the RT treatment. Also, the cost was for international consultations and might be cheaper for German citizens.

Edited 07/20/11 07:04

07/20/2011 05:17
Larry 
07/20/2011 05:17
Larry 
Re: Update RT treatment and MRI

Hi Cyclist, thanks for your comments ...

While RT is much cheaper in Germany, diagnostic procedures like MRI, PET-CT and highly advanced imaging rechniques are relatively expensive; one problem with MRI of Ledderhose or Dupuytren's Disease is the fact, that older machines with lower Tesla (magnetic energy) are not capable to pick up the disease. Special set-up and machines with 3 Tesla are well suited to detect the disease better and guide surgeons or RT to perform their specific treatments. These machines are much more expensive to buy ...

I had to pay about 1.200 Euro for the examination of 2 feet with and without contrast media and 3 different MR imaging techniques ...

Would like to hear from you more about the Australian fees for MRI with and without contrast media ...

Edited 07/20/11 08:19

07/20/2011 09:07
Cyclist 
07/20/2011 09:07
Cyclist 

Re: Update re RT treatment

Hi Larry
We're lucky that we have a relatively good health system in Australia, but there are some complexities. Access to MRI costs different amounts depending on what type of practitioner refers the patient. If the patient is referred by a specialist then it's cheaper than by a general practitioner/family doctor. I've found out that I can get a specialist referral from my sports physician (a specialised general practitioner).

I can get access to a Tesla 3 or even a Tesla 4 machine, by ringing around to find out which radiation physicians have this most up-to-date technology and I can use my referral to book in at that location. The fees are around $300 - $400 AUD (200- 300 Euros) for both feet here and with our system, I'm not sure if it might cost a bit more initially and then we get to claim a gap payment back through medicare (which everyone has access to here), or whether it's just a straight cost.

I'll update you when I start making the appointments in a few months

All the best
Di



Larry:
Hi Cyclist, thanks for your comments ...

While RT is much cheaper in Germany, diagnostic procedures like MRI, PET-CT and highly advanced imaging rechniques are relatively expensive; one problem with MRI of Ledderhose or Dupuytren's Disease is the fact, that older machines with lower Tesla (magnetic energy) are not capable to pick up the disease. Special set-up and machines with 3 Tesla are well suited to detect the disease better and guide surgeons or RT to perform their specific treatments. These machines are much more expensive to buy ...

I had to pay about 1.200 Euro for the examination of 2 feet with and without contrast media and 3 different MR imaging techniques ...

Would like to hear from you more about the Australian fees for MRI with and without contrast media ...


Edited 07/20/11 12:14

07/21/2011 06:43
Larry 
07/21/2011 06:43
Larry 
Re: Update re RT treatment

Thanks for the update on MRI costs ... that's probably different in many other countries. USA is expensive, too.

Your observations after radiotherapy appear to be quite good, aren't they ?! Similar in my case ! It took about 3 months until I was convinced that my feet had responded to RT - WE are lucky that we are born at the right time to have reached out for radiotherapy becoming the primary treatment approach for Ledderhose Disease.

Hopefully I will never require surgery on my feet ! Larry

07/25/2011 15:32
debrr 
07/25/2011 15:32
debrr 
Re: Update re RT treatment

Spanishbuddha,

Please continue to keep us posted. Have you had RT on feet? I am sorry, it sounds like you are just trying to live with feet! Are they bad as well?

My best to you!!

spanishbuddha:
debrr:
Thanks spanishbuddha! How are you doing?????

Thanks for asking debrr.

It is one month since my second round of RT on one hand. This time I have the dry scaly skin as an after effect, but it's minor, and I'm using a high urea content cream. It's probably too early to say how successful the treatment has been. I think there's a clear reduction of some hardness in some areas and even some shrinking, but when I compare it to photo's taken before treatment it's not so clear if I'm imagining an improvement. We'll see.

I have a sight concern on the other hand. I can't tell if I have a joint injury or new nodule. Another we'll see. I just hope my fingers stay straight and flexible so I can continue with my piano playing.

Onto my feet. You did ask My plantar is much the same, it is manageable, but sometimes after exercise or overdoing the walking I can then hardly walk. I treat it with ice and just get on with it.

Here's to us sufferers of these conditions. A toast .....

07/25/2011 15:38
debrr 
07/25/2011 15:38
debrr 
Re: Update re RT treatment

Hello Di!
I am nearing the end of 6 months after first round of RT. And I "think" I am noticing some improvement in "after RT" discomfort. I think I would like to get another MRI to see if there is "in fact" a change, before I consider round 2.
I don't know if I mentioned before, but I had a conglomerate of little nodules as well. Very visible on left foot after RT, but not so visible on right foot. I think the right foot has gone back to be "swollen" at this point again.
I tried a gentle massage with my fingers and lotion last night but this morning it seems to be more tender.
How are things going for you now after round 2?
Wishing u the best,
Debbie

Cyclist:
My MRI revealed swelling and inflammation and that one of my 'nodules' was actually a conglomerate of little nodules - imagine what that was going to be like if I'd left it to mature!

Not sure if having a conglomerate of nodules is a good thing or a bad thing in terms of how effective the RT will be!
The 'smaller' nodule on the other foot turned out to be at a more progressed state as it had infiltrated the tissue and tendon, so that explained why it hurt more than the much larger conglomerate nodule.

07/26/2011 20:27
Cyclist 
07/26/2011 20:27
Cyclist 

Re: Update re RT treatment

Hello Debbie
Good news to hear you are getting some relief! Hang in there with the massage - in my experience, you get used to it and it really does help de-sensitise the nodules

My feet are feeling a lot better now. The nodules are still large and they are up and down (soft on some days and then hard again). The main improvement is that the bruised feeling all over my feet is much less intense and my feet don't get so achy (sort of crampy) when I walk or stand for long periods of time. I think the tendon has relaxed, which might be a response to the nodule softening and starting to shrink (I'm hoping...) I'm finding that I can stretch my feet more without getting that nasty ache in the ball of the foot.

The main thing is that I'm finding I can do more again!

I'm curious - how long did it take your nodules to grow large? I think mine would have kept growing - and quite quickly if I had left them without treatment. I tried to search back in your posts, but couldn't find your original story

All the best
Di

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