New here. Hoping for info on abdominal lymphedema.

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: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

New here. Hoping for info on abdominal lymphedema.

Postby LynnS » Fri Aug 31, 2012 6:56 pm

Hi, I'm new here and looking for information, experiences or thoughts on a person with abdominal lymhpedema having a panniculectomy, or anything to help.
My husband is 51 years old and has had lymphedema in both legs and in his abdomen for about 10 years now, actually at the stage it is at it would be classified as elephantaisis. It all seemed to start after his back surgeries, (he had 4 in 2 years), after which his legs would swell up. No one could explain why they would swell up or why they would go down when he got a steroid shot in is spine or with oral steroids.

We had never heard the term lymphedema until about 5 years ago when during a period of his legs being swollen, they popped open with horribly infected weeping wounds, which had him in the hospital 3 times and on IV antibiotics for a year straight (and that was just the first time).

As far as I can remember, his abdomen started getting bigger about 6 years ago. Now it weights at least 100lbs, it's below his knees, very hard (fibrotic), warty and sometimes weeping and so heavy I can't even move it.I also notice he swells in the area above his buttox too. (a lymphedema therapist once argued with me and told me he couldn't possibly have lymphedema in his abdomen....that was until she saw it.....then it was in the last stage!!)

He goes to the wound clinic every 2 weeks for his legs, no one does or ever has done anything with the abdomen. The wounds on his legs don't get better, but they don't get as bad as they did. The original infections have colonized in his legs and once in a while a new one does sneak in, but they have kept him off the IV's for a while. .

The medical people have said that the legs won't get better because of the abdomen cutting off the circulation , but some have said that no one will touch him (surgery wise), with the infected wounds on his legs and his size. I am also wondering about closure of wounds with the tissue of the pannus being what it is.

I have scheduled an appointment with a surgeon to at least take a look at him next month, but I want to go in there with some knowledge. The problem is that it is supposedly so rare to have what he has. I have searched and searched and there just isn't much information out there on this, esspecially with doing a panniculectomy on an abdomen of this size with lymphedema. I would truly appreciate any input at all......good or bad.. :| ...I just need information, experiences and thoughts.

Thanks,
LynnS
LynnS
 
Posts: 4
Joined: Wed Aug 29, 2012 3:24 am

Re: New here. Hoping for info on abdominal lymphedema.

Postby patoco » Sat Sep 01, 2012 10:36 am

Hi Lynn

Super welcome to our family here!

Sounds like you two have been through/going through a nightmare. I have to say, I can't believe anyone who calls themselves a lymphedema therapist would even think of saying you can't have lymphedema (LE) in your abdomen. Duh?!?!?!?!?!? When did this person get their training?

His abdominal lymphedema probably started due to damage to his lymphatic system done in the initial abdominal surgery. This happens more then you might think. Infact, I saw an article dated 1963 where the doctors discussed this very situtation - abdominal lymphedema due to an abdominal surgery.

I don't think a panniculectomy would be safe or even appropriate at this time. There are some things that CAN and SHOULD be done though.

First, they should be doing some scans to see if any fluid is collecting in pockets that could be drained in an of themselves. Sometimes in abdominal fluid retention you do get that and that specific fluid can be taken out.

There is complex decongestive therapy that can be done on the abdomen, and personally, I think they should at least try it on him to see if it helps.

Also, with the amount of fluid he is retaining, I would even recommend diuretics. Now, to be sure, for regular limb lymphedema diuretics are a major NO-NO and should NOT be used.

However, there are situations, like mine and IMHO your husbands where it is called for and may even be critical. Because lymphoscintigraphy indicates my thoracic lymph system and right side lymph system have all but shut down, it is critical for me to have these diuretics. Without them, my ad would literally explode with fluid.

Speaking of a lymphoscintigraphy - have they even bothered to do one or some on him?

This page will explain it:

Lymphoscintigraphy

http://www.lymphedemapeople.com/wiki/do ... intigraphy

If they did some on him, they would at least get an idea what lymphatics are still good and that would be incredibly important in putting together a treatment/management program.

BTW, usually, steroids cause edema - but with his medical situation, it may be that his system just reacted opposite of what normally occurs.

OK...wounds.....to heal the wounds with lymphedema, firm compresssion bandages are a must. The bandages/ wound dressing should also prevent the fluid (lymphorrhea) from getting on adjacent skin areas as it will cause deterioration to that skin and you will wind up having a larger wound.

In between wound clinic visits though, you may should learn to change the bandages yourself as I usually recommend changing bandages much more often with lymphedema wounds. While it may take a long time, it handled properly, these wounds will heal up. Compression also is essential to help at least keep the legs from swelling bigger then they are at this point, because if they swell more, then the wounds will of course pull apart and healing will be more of a problem.

Finally, because of the wounds and his risk of infection, I would urge them to put him on a regular daily course of antibiotics. I used to get horrible spells of cellulitis that required hospitalization and yes, months on IV antibiotics. Then the doctor put me on a daily antibiotic pill and the bad spells are gone and the only times I have had a infection, they were quite mild and went away quickly. The doctor that did this is an infectious disease doctor.

After the wounds heal and the abdominal lymphedema decreases, it may well be possible for him to go through decongestive therapy on those legs too.

Sorry this is so long, but let's start here first. Lynn, I believe your husband can get better if he just gets the correct treatment. I have seen legs and lymphedema conditions that you would think are flat out impossible to help. But, after a good dedicated lymhpedema therapist gets done, the difference would blow your mind.

One last thing and I gotta say this. Please remember I am not a trained medical professional nor a doctor. What I do bring to the table is the experience of coming from a family of lymphedema patients and dealing with it in my own body for right at 60 years.

Give your hubby my absolute best regards and here's a special hug of encouragement for you too :!: :!: :!:

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

Re: New here. Hoping for info on abdominal lymphedema.

Postby LynnS » Sat Sep 01, 2012 2:18 pm

Thanks Pat,
No they have never done a lymphoscintigraphy. They haven't done any kind of tests on his lymphatic system, no one ever really addresses his abdomen, it's crazy!! Once time a vascular surgeon said " he needs Circaids, get them and come back in 6 weeks", and was just going to send him home with horrible weeping infections in his legs. He asked me why I thought they were infected, I said because the Disease Specialist told me they were and that is who sent me to you!!! From there I marched myself in to the Disease Specialists office, who immediately admitted him and he was in the hospital for 9 days.

We did try using the Circaids for a while and as I said, almost had them healed at one time. Then he ended up with Cellulitis and the wounds just gradually exploded again..... then back on IV's for 5 months again. It just happens over and over. Right now he is on oral antibiotics and his bandages need to be changed on is legs and heels twice a day and are then rewrapped with ace bandages.

Just want to mention what they said about the steroids......Yes, everyone was confused as to why the steroids would take the swelling out of his legs.....no one could figure it out. Then when Lymphedema was finally mentioned, they said that the steroids probably took the inflammation out of the lymph channels and let the fluid pass through. After a while that didn't work anymore either. Then once the infections in his legs started, they didn't put him on anymore.

The surgeon I am taking him to see is one of the lead trauma surgeons in a large hospital in our area and also specializes in Bariatric surgery and that program and hospital are a Center of Excellence in Bariatrics. I'm hoping the Doctor I'm taking him to will be able to help, or if he can't, maybe he can send us in the right direction.

My husband is a complex case, he's got the back issues (the incisions were all in the back by the way), his legs don't work right to start with because of nerve damage from that. Then add the weight of his abdomen to it and the pain from the wounds on his legs.......he's kind of a mess.. :? ...so we will see in a few weeks where the next chapter takes us I guess. Welcoming any thoughts and or ideas :!: :!: :!:

Thanks,
LynnS
LynnS
 
Posts: 4
Joined: Wed Aug 29, 2012 3:24 am

Re: New here. Hoping for info on abdominal lymphedema.

Postby LynnS » Sat Sep 01, 2012 2:22 pm

Thanks Pat,
No they have never done a lymphoscintigraphy. They haven't done any kind of tests on his lymphatic system, no one ever really addresses his abdomen, it's crazy!! Once time a vascular surgeon said " he needs Circaids, get them and come back in 6 weeks", and was just going to send him home with horrible weeping infections in his legs. He asked me why I thought they were infected, I said because the Disease Specialist told me they were and that is who sent me to you!!! :evil: From there I marched myself in to the Disease Specialists office, who immediately admitted him and he was in the hospital for 9 days.

We did try using the Circaids for a while and as I said, almost had them healed at one time. Then he ended up with Cellulitis and the wounds just gradually exploded again..... then back on IV's for 5 months again. It just happens over and over. Right now he is on oral antibiotics and his bandages need to be changed on is legs and heels twice a day and are then rewrapped with ace bandages.

Just want to mention what they said about the steroids......Yes, everyone was confused as to why the steroids would take the swelling out of his legs.....no one could figure it out. Then when Lymphedema was finally mentioned, they said that the steroids probably took the inflammation out of the lymph channels and let the fluid pass through. After a while that didn't work anymore either. Then once the infections in his legs started, they didn't put him on anymore.

The surgeon I am taking him to see is one of the lead trauma surgeons in a large hospital in our area and also specializes in Bariatric surgery and that program and hospital are a Center of Excellence in Bariatrics. I'm hoping the Doctor I'm taking him to will be able to help, or if he can't, maybe he can send us in the right direction.

My husband is a complex case, he's got the back issues (the incisions were all in the back by the way), his legs don't work right to start with because of nerve damage from that. Then add the weight of his abdomen to it and the pain from the wounds on his legs.......he's kind of a mess.. :? ...There has been things they could to for the back that they couldn't do because of the lymphedema and things they could do for they lymhpedema that wouldn't work because of his back.......so we will see in a few weeks where the next chapter takes us I guess.
Welcoming any thoughts and or ideas :!: :!: :!:

Thanks,
LynnS
LynnS
 
Posts: 4
Joined: Wed Aug 29, 2012 3:24 am

Re: New here. Hoping for info on abdominal lymphedema.

Postby blubrdfrend » Sat Sep 01, 2012 7:15 pm

Lynn, Welcome to our group. Most of us have never suffered the problems of your husband or Pat. We won't be able to offer advice but please know that we care. We are all familiar with lymphedema in some form. This is the place that you will be able to find information, sympathy and a willing ear. We all hope that your husband improves. The role of a care taker is very hard and sometimes not acknowledged. He may not always tell you but I know that he appreciates each minute that you spend trying to help him lead a more normal life. May God bless you.
Betty
User avatar
blubrdfrend
 
Posts: 105
Joined: Wed Jun 30, 2010 1:02 pm
Location: Northeast Texas

Re: New here. Hoping for info on abdominal lymphedema.

Postby patoco » Sun Sep 02, 2012 9:41 am

I wish sooooooooooo bad that your husband could get to a good doctor. It upsets me so much to hear of someone going through this when it isn't necessary. :twisted: :twisted: :twisted:

Take some of the things I shared earlier to them and see what might happen.

If they want to talk with a doctor who is very knowledgeable about lymphedema, let me know and I can give you some names of doctors I know personally.

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

Re: New here. Hoping for info on abdominal lymphedema.

Postby LynnS » Sun Sep 02, 2012 8:58 pm

Thank you Both, I do appreciate your thoughts and kind words.
Yes Pat I will mention those tests to the Doctor and see what he says, thank you for that info. I will also keep in mind the other doc's if we don't get anywhere with this or to help this one.

I was just thinking, wondering........is it acctually that rare to have this condition in your abdomen, or is that there is just sooooo little knowledge of it that no one knows what they are dealing with :?: :?: :?: :?
Thank you again,
LynnS
LynnS
 
Posts: 4
Joined: Wed Aug 29, 2012 3:24 am

Re: New here. Hoping for info on abdominal lymphedema.

Postby patoco » Mon Sep 03, 2012 9:29 am

Hey Lynn

In my very humble opinion, it probably is more widespread then people realize.

It is like lung fluid. When I first go online, you never heard of it or rather you never heard the docs, even most of the LE docs say anything about it, almost as if it never existed.

But, I did hear from people about it and once I started posting my experience in it, people really came out of the woodwork. It is far more common then expected.

Now too, a lot more people are expressing abdominal lymphedema. This is true today because of the increasing survival rates for gynecological and/or genital lymphedema.

LOL.....the patients always seem to be far ahead of the medical world when it comes to lymphedema.......if they would only learn to listen.

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


Return to Welcome Family

Who is online

Users browsing this forum: No registered users and 2 guests


cron