who wants to play doctor?

[NHdisneylover]

My mom is the patient and I will start off with syaing she IS seeing a doctor. But, she is being written off and will likely try seeing another doctor soon and she and I are just trying to find some reasons for her problems and oddly YOU all here seem darn good at this cyber diagnosing thing so I hope you do not mind my running this past you.
Here is the whole long history for those of you who like to play armchair doctor:
My mom had a hysterectomy at age 36 (cervical cancer). Ever since hten she has had issues with her ankles swelling. This usually happens if she is too hot or on her feet to much or eats too much salt. She went to a doctor in Colorado about it after a year and was told "some people's ankles jsut swell" and not to worry about it. She and I now know the etrogen patch she was on then (and stayed on 10 years) probably contributed--but we found this out online never from a doctor.
About 6 weeks ago one ankle swelled much worse than normal and the shin also swelled. It stayed badly swollen for a week to the point she oucld hardly walk (but did not hurt) and her boyfriend finally convinced her to go to a doctor (in Mexico where she now lives). She was put into the ER immediatly with a diagnosis of "acute thrombosis" and put on blood thinners and kept with her feet elevated. She satyed in the hospital 5 days and the swelling went down some but never went completly away.
She left with blood thinners to take and advice to wear special stockings and keep the foot of her bed elevated. At her follow up 2 weeks later tehy did blood work and told her it looked like there had never been a clot(sorry I am half a world away and get 2nd nad third hand information so it is not always as specific as I'd like--I do not know how htey determined this) and do not feel she has a clotting disroder afterall. They are calling it "lymphona" and basically telling her what she was told in Colorado 15 years ago--some people just have this. She is wearing the stockings, elevating her feet and doing everything else she is told to do but both ankles--and the one in particular remain VERY swollen at all times now.
Other general info is that she is thin (5'5" and wears a size 4) and has always had blood pressure on the low side (as in not too low to be safe but darn close). She does not smoke. She is currently 55.
Allright DIS doctors--any ideas.

 

[raysnkaysmom]

My mom had a hysterectomy from cervical cancer as well... but never had an ankle swelling issue... I can't imagine these two being related

Obviously not a doctor, but some people do just swell
Something about salt intake? Dunno..

sorry, I shouldnt have responded, I'm no help at all

 

[C.Ann]

Yes - find a new doctor..

A persons ankles do not just "swell" for no reason (especially given her weight) and they sure as heck do not swell unevenly and up one leg..

I would still be concerned about blood clots - seriously concerned.. If not clots, possibly kidney issues.. Can she come back to the U.S. and see someone here? Perhaps a doctor that you trust?

I'll keep her in my thoughts and prayers..

 

[happywanderer2]

Perhaps PAD (periph.arterial disease) or PVOD (periph.vascular disease). Meaning arteriosclerosis or narrowing in artery or vein in leg--doesn't necessarily mean clots, which is thrombosis. Though, usually people have pain with these. Heart failure is usually indicated by bilateral swelling.

Did she have total hysterectomy? Perhap there is damage to lymphatic system in groin causing back up of fluid in leg. Could be her blood pressure is too low and blood in legs is pooling because not enough pressure to bring it up? I'd see if you can get into seeing a vascular surgeon or interventional radiologist or a cardiologist to get this checked out. Hope you can find some answers.

 

[Pea-n-Me]

They are calling it "lymphona"

I am thinking you mean lymphedema. (I have a mild case of it myself in one arm after my breast cancer surgery/axillary lymph node removal and radiation to the area, that I have to manage.)

First, about the DVT/acute thrombosis diagnosis. Did she ever actually have any scans of her leg to confirm that diagnosis? Because whether she had one or not is pretty important health information to know.

But back to the lymphedema (if that's what it is, none of us can say for sure). Lymph channels can become "ineffective" for a variety of reasons. In my case, it was surgery and radiation that disrupted them. My guess in your mother's case might have been the surgery for cervical cancer - did she have a hysterectomy with lymph node removal? What may have happened was that the lymph channels in the pelvis were disrupted there as well.

Anyway, lymph fluid can no longer leave places it normally would once the channels are disrupted. Therefore it accumulates below the level of disruption. In my case, when I got a bad case after flying and eating more salt than I normally would while on vacation, I saw a Physical Therapist who massaged the fluid out of my arm and "re-taught" it how to get out, or in other words, established new channels.

The fact that your mother has had this for a very long time may make the same thing difficult, but PT would definitely be worth a try, IMO. You MUST find a PT who specializes in lymphedema, though. I've found that salt definitely affects me, so I'm careful about eating salty foods, and know that if I do, I may get a little swelling. Exercise in her legs, ie walking, if her health otherwise allows, would be great for her, as it helps the flow of blood and fluid overall, as well as tones muscles in both the pelvis and legs. I'd think that one of the worst things she could do would be to sit up in a chair all day, as that position constricts flow and encourages fluid to collect in the lower extremities. They were right in telling her to keep her legs up, and I would add, pelvis straight, if possible. The stockings will also help her if they were prescribed, as a) lymphedema in her legs does put her at higher risk for DVT, and b) if she puts them on before her legs hit the ground in the morning, then they will help keep fluid from accumulating in her legs as the day goes on. She should obviously avoid salty foods. There is lots more information on the net if you search around.

Good luck.

 

[The Mystery Machine]

Tough one.
A trip to a few specialists would be in order to get a proper diagnosis.

 

[Bren's Mom]

It's not 'lymphoma' I don't think, it's 'lymphedema' they were referring to.

I hope you're mom is able to find a satisfactory answer soon!

 

[Desiree]

I remember your original thread a few months ago about this. (I'm the one who had DVTs in both legs and now have been diagnosed with Antiphospholipid Antibody Syndrome). I have no suggestions but only hope that the doctors ran a battery of tests and bloodwork for her to rule everything out. Has she had ct scans and ultrasounds done on her legs?

I know with me, it took many months before I had an actual diagnosis. I am still dealing with leg and ankle swelling daily too.

 

[Desiree]

Oh by the way, it was a rheumatologist that actually gave me the APS diagnosis. Not a vascular doc or an orthopedic doc. I'm also seeing a hemotologist for the clotting disorder.

 

[NHdisneylover]

Thanks all for the opinions. I think you are right about lymphedema. My mom is not good at recalling details (or writing things down at the doctor which is what I do). She hates to "inconveince" a doctor by asking him to spell something, etc.

Yes, she had a radical hysterectomy. Lymph nodes were not removed. We did learn several years later (when she was having other issues and had an ultrasound) that something went wrong during the surgery. She was asked what had happened as this doctor had "never seen" so many staples and so muc hscarring from a hysterectomy. Two other unrelated doctors have since also commented on this. None the less for hte first 18 years after the surgery the swelling was minimal and really only an annoyance so she was willing to "let it go" when the one doctor said it just happens. Now she simply cannot let it go. She can ahrdley walk on it.
No the doctor did not run any scans of her leg the entire time she was hospitalized. She asked about kidneys and was told she would have otehr symptoms if it were kidneys so he will not test for that, etc. He is pretty much telling her to suck it up. I am strongly enouraging her to find a doctor who will listen to her.
Thanks everyone.

 

[mom2travel]

Not sure if this will help or not, but I had had swelling of my lower legs (knee through ankle) several years ago. I had a scan to check for clots and came out clean. The doctor also ran a number of blood tests and mine came back with thyroid counts that were not in the normal range. I had no "typical" symptoms of thyroid disease. Since being treated by an endocrinologist for my thyroid I have not had any subsequent swelling. So, just another idea of what to have checked.
Good luck

 

[Pea-n-Me]

Usually they do check some lymph nodes during a hysterectomy for cancer. It may have been done without her being aware. It often determines whether chemo is needed, for instance (if there was local spread there). You might consider having her pull her old records to see exactly what happened. She should know as it's pertinent to her health now. She can have all of her records transferred to her current doctor, or a new one, including those related to the earlier treatment for blood clot.

 

[NHdisneylover]

Comming back to update you wonderful souls who helped me find information and understand some of what Mom was hearing

It took a while, but I finally convinced Mom to find another doctor who would get to teh bottom of this. She found someone and got some good information last week. In an ultra sound he can see several nodes in her groin area. He did biospy a couple and they are benign. He thought they were based on size and shape anyway. One of the nodes is putting pressure on the vein causing the Primary Lymphadema. He is working with her on some excercises and massage techniques to help ease the swelling in tne node and thus the ankle. She says it is already helping a little

This is the extent of what I got from her in the email--but it sounds like a much better diagnosis than what we were afraid it could be.

I truly appreciate all of your wonderful support and insight.

 

[KAMLEM]

I hope your Mom continues to feel better. It must be very difficult trying to support her from so far away!

 

[DizBelle]

This is late and it sounds like she may be on the way to an answer but I wanted to share this.

When I first read this I was reminded of a case I saw on that mystery diagnosis show. The woman on the show had unexplained and extreme swelling in the abdomen and here ankles/feet at her time of the month. I know your mom doesn't have a time of the month any more but if she was left with ovaries she may still experience monthly "stuff". "Female thing" plus "swelling" made me think of the episode.

Anyway, it turned out that the woman on the show has a condition called Amyloidosis which leaves excess protein in here system and was affecting her kidneys. This was found by checking the protein levels in her urine over a 24 hour period.

Don't know if it helps but now you have the information and can do with it what you want.