Just diagnosis yesterday-not sure what is next

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Just diagnosis yesterday-not sure what is next

Postby patoco » Sat Jun 10, 2006 3:56 pm

Just diagnosis yesterday-not sure what is next

Originally posted 04/24/2004


Posted - 04/24/2004 : 10:53:21


Hi everyone,

I was just diagnosised yesterday by a foot specialist and will schedule an appointment Monday with a Vascular Surgeon. I started going to the foot specialist in February because my foot swelling would not go down-I have had it for years and it is getting progressfully worse and when I started back to the gym in October of course it was unbearable because I do the treadmill and other repetive foot and leg machines. My legs have always been big even when I was of normal size. I had a Gastric Bypass in '96, followed by tummy tuck in '97 and removal of excess inner thigh skin in '02.

I do not know which stage I'm at because since my legs have always been big the only thing I'm really noticing is the feet swelling-I have almost no shoes I can wear and depending on the ones I do wear my foot swells horribly during the day--some goes down over night but some doesn't. My foot specialist in Februrary had to use antibotics to get rid of a hard nodule that developed in my left foot(not sure if that is related or not).

Can any of you that have been diagnosised previously tell me at what point you sought treatment--such as was the swelling going all the way down or not at all and were you having any pain--I don't at this point and my doctor yesterday kept asking me that like it would be important-but right now I just have the tightness and numbness when it swells. I have been trying to go to the gym but I get uncomfortable--is there any exercises I can do at this point or should I stay away from the gym until my next appointment--the gym is my stress reliever and I really miss not going or doing some type of exerercise.

Is there any good books I should read now--I've seen one mentioned stating it was the only one out there and written by an RN-have you found it useful. Also, my husband has had 11 years nursing(no degree, in the navy) and he was going to rn school but put it on hold for a year)can he get ceritfied to do the therapy I may need-or do you have to be an RN first? Sorry I have so many questions-but it is hitting me hard--I'm trying so hard to become healthy and now it just seems like I keep getting knocked down and this latest diagnosis is saying no cure with the LE.

Thanks in advance for any insight you can give me and thank you to the person that created this board-this is the best info I found last night when I was searching.





Hi Lisa

A warm welcome to our new member!!

It seems the most frustrating thing with lymphedema is in getting that diagnosis. Usually doctors just don't know what they are dealing with, much less how to treat the condition.

My advice is to move as quickly from diagnosis into treatment. That is the usual step. The sooner the treatment starts the easier it is to get the swelling down and under control. That will help prevent the development of fibrosis (hardening), infections and other complications. Be sure to sress to your doctor how important it is to get into decongestive therapy as soon as possible.

The hard nodule you mentioned is definately related. Treatment will also help prevent those type of nodules. The fact that it responded to antibiotics tells me it was infection related. Infections such as cellulitis and lymphangitis are our biggest enemies. Its like a cirle, the more infections you have the more swelling you'll have as
the lymph system is further impaired.

Pain and numbness are all part of lymphedema. The swelling does compress nerves - even more so with extensive fibrosis.

I always recommend exercise, its just a matter of learning which ones are safe and effective. The only ones not recommended are high impact exercises. By the way swimming is about the best exercise you can do. The movement of the water around the limbs is similar to decongestive therapy.

The book you mentioned, called "Coping with Lymphedema" is really excellent and I highly recommend it.

I think it really great your husband want to get certified in the massage therapy. He doesn't have to be an RN. If you go to the therapists section of the website, there are links to the various lymphedema treatment schools - you will be able to find out the requirements for each one.

Just be encouraged that there is hope with lymphedema and with treatment you will be amazed at just how much you can do.

Thanks so much for your post and please feel free to also write me if you need to.

My Very Best to You!!

Pat O'Connor



Thanks for the info Pat. I have been back to the board quite a bit lately while I wait for my appointment. I went out the same day you said the book was useful and bought it and read it within a day. Seems like between the book and this website I have been able to gather the most info.

I go to the vascular surgeon tomorrow and I'm scared to death he will confirm the diagnosis and worried that I'm really heading into stage 2 because of how long it took for a md to diagnosis me in the first place. I know from all I have read that I do have this disease and tomorrow will just be a 3rd(foot specialist, me and now vascular surgeon) confirmation. Hopefully this doctor will be agressive in therapy as I'm down to hardly any shoes I can wear(tennis shoes, tennis shoes...) since sandals just make the swelling worse and I can no longer get into the rest of my shoes. Plus having to pick and choose when I go exercise is a pain--seems first thing in the morning is working for me the best. I know that I should count myself lucky it is being treated early but I'm still bummed about the whole thing.

Right after the appointment I"m heading to FL for a long weekend and I will enjoy myself and try to put this out of my mind to deal with when I get back. My husband has been great and is ready to support whatever therapy I need and that really helps. I see that several of you had gastric bypass-is scar tissue from that what has caused this in some cases. My legs have always been big but the swelling got worse after the gastric and then the excess leg skin removal but find it interesting that some of you mention the gastric bypass too.

Anyway I just want to say thanks for this board and the support this board is giving me and others newly diagnosised!




Hi Lisa!

I know that by now you are probably off to Florida and won't se this until you return... so here's to hoping to you had a great and relaxing time!!

Let me know what the vascular surgeon says. Just know that even if you are transitioning into stage two, the lymphedema can be successfully treated. It is important that your doctors take an agressive course of action.

I know its been hard for ya, I have heard many cancer survivors even say the lymphedema has been more devestating than the cancer. But it seems you are truckin along and again just be reassured that once the treatment beings, you'll see a great differance.

Let us know how things are when you get back.

Hugs to You

Pat O'Connor
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