two questions

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

two questions

Postby Teddi » Sun Oct 08, 2006 4:24 am

This horrendous growth on my inner thigh has gotten so big that I can hardly walk at all and I can't begin to tell you how uncomfortable it is all the time. I try to drain it by lying down three times per day with feet raised and piece of cloth tied under my stomach to lift it off the groin nodes... but it doesn't help much. No one has been able to figure out how to wrap something this big and the therapist left it up to me and my husband to come up with something and just cancelled the rest of my appointments until we could figure something. I would have thought that was part of her job.

Anyway, I want to know if any of you have ever had any kind of reduction surgery on one of these things and if so, how bad was the healing process? And how do I find a surgeon who will touch it? None of the ones I have contacted so far will do anything.

Second, have any of you ever heard of probiotics? A friend sent me a bottle and I don't know whether I should take it or not.

Any help greatly appreciated.

Teddi
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby patoco » Sun Oct 08, 2006 9:28 am

Hi Ya Teddi :)

Glad you wrote, I was thinking of you yesterday...doing research.

There are a number of abstracts relating to the growth you have on your leg.

Technically, it is referred to as massive localized lymphedema (MLL) and/or ereferred to as a pendulous tumor of soft tissues in the thigh. BTW, non malignant.

Typically, they show a pattern of slow growth over many years and are generally localized in the inguinal region or the lower extremity (leg).

The good news is that they can be surgically removed, safely and in no way does it have to be a threat to your life, like that one doctor said.
BTW...it shoud be removed not just reduced.

They key will be to find a surgeon who is going to be able to remove it.

Once it is removed, they will biopsy it as is normal for any type of growth.

The reason that massage therapy isn't going to help is that it is not simply a pocket of fluid, but is composed of fibrotic tissue, dilated blood vessels, skin hypertrophy could be involved, fat cells..basic body stuff.

Pat
User avatar
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Thanks for the info, Pat

Postby Teddi » Sun Oct 08, 2006 7:06 pm

But how do I go about finding a surgeon who will do this. I would literally do anything to get rid of this thing!
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby patoco » Sun Oct 08, 2006 7:25 pm

Hi Ya Teddi :)

I would think a vascular surgeon or a plastic surgeon would be a good place to start.

Jiggle my memory, have you ever been to either type?

You may want to screenprint this page and take it with you to your doctor:

Massive localized lymphedema

http://www.lymphedemapeople.com/phpBB2/ ... .php?t=652

This explains what I believe we are dealing with and would be helpful if the doctor is willing to read it.

Tell him, the information on this page was written by doctors...not patients or laypeople. Perhaps then he will be more open to reading it.

Pat
User avatar
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Thank you

Postby Teddi » Sun Oct 08, 2006 9:20 pm

so very much, Pat. I will show these articles to my doctor and also make copies that I will show to whichever surgeon I can get an appointment with.

The nasty surgeon that I spoke of previously was a vascular surgeon and I have also been thinking that a plastic surgeon would probably be the best bet. I will ask my doctor if she can get me an appointment with one. But how do you tell if you are dealing with a really good surgeon or only a fair one. According to the articles it is not uncommon for the thing to come back so I need someone who will be interested enough to follow up.

Teddi
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby silkie » Mon Oct 09, 2006 12:24 am

Hiya Teddi

Great to hear from you
and Pats advice wow im learning again

I hope you find a good doctor to help
but its the start for you a direction to go in before there seemed nothing

let us know how it goes hun

It really does seem promising direction

huggggggggggggggggggg

Silksxxxxxxxxxxxxxxxxxxxxxxxxxxxx
User avatar
silkie
 
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Hi silkie

Postby Teddi » Mon Oct 09, 2006 4:28 am

You are right - Pat is such a blessing. I've copied the articles and if I can just get my husband to print them out, I'm going to write to Iowa City to Administration and ask if they have a surgeon who can handle this. I also plan to give a copy to my doctor here and see if she can ask around and perhaps find someone. Again, if they would only take me up in Rochester, that's the Mayo, I know they would have someone but if you do not live in Minn and your ins does not cover, then they absolutely will not take you - I've tried!

Now the next step is getting my husband off the couch where he's been for about 16 hours.

Teddi
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby Lynora » Thu Oct 12, 2006 2:26 am

Hi Teddi

I have bandaged legs which sound similar to yours. I can't believe that your therapist left you to devise your own method!!!

When I have 'wrapped' large legs, with pedicles (extra growths of oedematous tissue), I have spent alot of time preparing padding, so that the pedicle is lifted away from the leg, before the short stretch bandage is applied. Also, when I have people with very large and pendulous lower legs, together, we apply a 'stirrup' (this can get a few laughs, as invariably they are large people and we end up in a heap on the floor!). It is still worth a try though. Take a 4 or 5 metre 7.5cm bandage and fold it in half or in three. The patient then holds the two ends, and the therapist positions the bandage beneath the heel of the foot. The patient pulls gently on the two ends, whilst the therapist lifts the skin folds so that they are away from the ankle. Whilst the patient is still gently tugging on the bandage 'ends' the therapist works like a dervish to apply the first layer of bandage OVER the stirrup. Does any of this make sense?

It is 0723 here in Bonny Scotland, and I haven't had my cup of tea yet! :wink:
Lynora xxx
Lymphoedema Therapist
Lynora
 
Posts: 11
Joined: Wed Oct 11, 2006 2:45 am
Location: Scotland

bandaging legs

Postby Teddi » Thu Oct 12, 2006 3:46 am

Yes, it makes a lot of sense but I do not have any growths on the bottom part of my legs, only on my inner thigh and that is so big it is like a third leg coming down.

I'm not surprised that the therapist left me on my own - it seems to be a pattern in the way I've been treated. No one wants to deal with me and none of the doctors here are familiar with this condition.

Thank goodness Pat found me the research that told me exactly what I have. I sent a copy over to my doctor and pleaded with her to not only read it but to try and find someone who would make use of it and try to help me.

Maybe because this condition is so rare, one of these doctors who wrote articles might be interested in helping - I sure hope so. It's very frustrating knowing that it can be dealt with and not being able to find a doctor who is willing to get involved.

Teddi
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa


Return to Welcome Family

Who is online

Users browsing this forum: No registered users and 2 guests


cron