Fibrosis treatment: Hi and Happy New year All! I have... - LSN

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Fibrosis treatment

SamLymphie profile image

Hi and Happy New year All!

I have lymphoedema in my left leg since 2009, my thigh has been building up fibrosis which i can feel is spreading quite rapidly, it is now hard all over my thigh, even when rested.

Is there any treatment or machine that helps get rid of it, treat it or slow the spread?

My thigh is rock solid, I'm 33 and i fear it is going to badly affect my mobility in the long term so would appreciate any guidance and suggestions.

Thanks.

23 Replies

Are you under the care of a lymphoedema clinic? They might be able to advise as to whether you would benefit from a course of DLT or CDT (intensive treatment involving MLD and bandaging) - it can help to soften fibrosis.

SamLymphie profile image
SamLymphie in reply to Lynora

Not anymore, i used to years ago but moved to Harrow in London and this area isn't attached to a lymphoedema centre.I'm struggling to find the closest NHS lymphoedema therapists and my gp surgery hasn't been the most helpful, albeit because they're too busy with the pandemic.

Probably need to persevere and ask to be referred, as this thigh is worrying.

Thanks for your reply.

In addition to CDT treatment at your clinic or through private lymph therapist, Deep Oscillation Therapy (DOT) brilliantly addresses fibrosis. If you can find a Lymphie /MLD therapist who offers DOT which is a specialist non-invasive device used during lymph drainage treatment. Alternatively it’s possible to buy your own device but it’s expensive technology nearly £3000 for a Personal device for home use (it’s light and portable so can be taken anywhere). I’ve had one for 7 years that I use when completing daily SLD. I wouldn’t be without it

PhysioPod.co.uk website provides info including DOT clinical effectiveness.

MLDUK.org.uk for qualified private therapists

Lavender60 profile image
Lavender60 in reply to CCT67

Lymphoedema practitioners may alternatively be registered with British Lymphology Society. B.L.S .thebls.com and L..T.A. Lymphoedema Training Academy lymph.org.uk/

Thank you! Will check those websites as i feel i need to locate them myself to get support from my Gp. They never know anything about lymphoedema it's so frustrating

CCT67 profile image
CCT67 in reply to SamLymphie

Just to clarify, The sites for qualified lymphoedema therapists /MLD are filled with private clinicians. Either private insurance or self funding, they are bot NHS funded.

Lavender60 profile image
Lavender60 in reply to CCT67

The B.L.S directory states whether the practitioner/clinic is private, NHS or charity funded. Treatment at a Charity(Hospice) funded service is free as it is in an NHS service.

CCT67 profile image
CCT67 in reply to Lavender60

I receive feedback from patients saying they struggle to navigate the BLS website/ search feature, the other 2 sites have simpler searches and feel more user friendly. The BLS site is more sophisticated than the other sites but it’s off putting for some patients.

Lavender60 profile image
Lavender60 in reply to CCT67

Oh Really what a shame. I have just checked it out and immediately got 12 results for London and the greater London area. For each entry it details contact info, type of service and what treatments are offered. There are at least 5 NHS services listed. If in doubt it is possible to contact BLS via their contact message and they do reply speedily. The site has improved significantly in the past 2 years.

CCT67 profile image
CCT67 in reply to Lavender60

Indeed, the site has been updated loads in recent years and for people accustomed to navigating websites it doesn’t feel imposing. I do find the search function can be a bit temperamental sometimes and one must keep changing the search box criteria to obtain a full picture of the options - that’s the bit that some struggle with

Lavender60 profile image
Lavender60 in reply to CCT67

I didn't have an issue with it but it's certainly worth flagging up to BLS so they can improve access. MLD UK only have their own members on their site and many HCP Lymphoedema practitioners who register with BLS may not also be registered with MLDUK. Just gives people more possibilities.

CCT67 profile image
CCT67 in reply to Lavender60

BLS is not really designed for patients in mind. It’s an all singing and dancing site compared to a few years ago but it’s overwhelming for some patients especially older ones who aren’t at home navigating the web. The BLS home page lay-out is professionals orientated ie the clinician/therapist search isn’t easy to find - its not in the contents links at the top of page. Both LTA and MLD UK are much simpler to navigate and so for patients who know they want a private clinician (not NHS or charity) they remain the go to sites for most patients

Lavender60 profile image
Lavender60 in reply to CCT67

I think it's well worth highlighting this to BLS. Their directory is unique in that it provides information about NHS, CHARITY, Private and Independent Lymphoedema practitioners and their services including information about approximate wait times and how to refer. Together all 3 directories are a superb resource for people wanting to be pro active in their own management as well as helping allied HCP's to find out how and where to refer their patients.

CCT67 profile image
CCT67 in reply to Lavender60

I agree, all 3 directories combined are excellent resource 👌

Lavender60 profile image
Lavender60 in reply to CCT67

And I think, is a big plus for Lymphoedema patients in the UK. Though that said, service provision is so patchy.

SamLymphie profile image
SamLymphie in reply to CCT67

Thanks.

I have heard about these devices but in the past was told i wasn't eligible to receive any because i had fibrosis but not to a level they thought was extreme i guess. And some places just don't have them.

I have had to argue to even get CDT done twice in 10 years, was refused both MLD and any other machine treatment on the basis there was not enough capacity and it was too expensive on the NHS, and because they deemed my leg was in good shape.

My fibrosis wasn't that bad 4 years ago but it is now spread all over my thigh so maybe now they'll offer something!

I hop e you've been able to find someone to help you.

You could also try Thai massage. I also had hard fibrosis in upper leg and the Thai therapist stood and rocked on the inside of my upper leg, which in 10 treatments reduced it.

Generally speaking we tend not to advise very deep tissue massage or manipulation such as this technique. When treating fibrosis it is vital to first establish why fibrosis is happening and to empty lymph nodes which lymph will be drained towards as the fibrosis is softened and dispersed.

I agree with Lynora. Ask to be reviewed by your lymphoedema service if you have one, or ask GP to refer you to one asap. It's important to be reassessed by a lymphoedema specialist to rule out any other cause of changes to your lympoedema. Then based on that assessment a treatment plan can be agreed. Treatments might include, a course of bandaging, MLD, re-teaching SLD (self massage), deep oscillation, infra red light therapy (both good at softening and dispersing fibrosis) and possibly Negative pressure massage, using Lympha Touch which is really good at softening fibrosis. It might also be that you need your hosiery style , compression strength and size reviewing and the service would be best qualified to do this for you.

Good Morning Sam

For reasons of transparency, I am Mary from PhysioPod UK. I noticed above that Deep Oscillation for fibrosis had been mentioned but no one mentioned that we also hold a register of both NHS and Private Practitioners who are utilising Deep Oscillation for Lymphoedema.

You can find an NHS Lymphoedema Service using Deep Oscillation therapy by putting your post code in here physiopod.co.uk/mld-therapi.... It could be your clinic does have Deep Oscillation and you can ask them to try it on your leg?

But If your own Lymphoedema Service do not offer Deep Oscillation but another NHS Lymphoedema clinic does, even if it is out of area and the other clinic is not too difficult for you to get to, then you can ask your GP for assistance.

Make an appointment with your GP, explain you would like to have Deep Oscillation treatment for the worsening fibrosis in your leg and ask them if they can seek funding from the CCG on an Individual Funding Review (IFR) basis, explaining that that clinic has the equipment to do this and your Lymphoedema services do not. england.nhs.uk/wp-content/u...

I know this can be done, as the information came from an NHS Lymphoedema Practitioner who suggests this course of action to patients who contact her for Deep Oscillation but are out of area.

Alternatively, if you are able to pay privately, you can locate a private MLD DLT Lymphoedema Practitioner by putting your post code in here physiopod.co.uk/manual-lymp...

Hope that is helpful. x

SamLymphie profile image
SamLymphie in reply to Poddles

Hi Mary,

Thank you so much. Will check the website.

Great helpful advice from Mary

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