Mental Purgatory

[tls]

Greetings...

I really don't know what else to say other then I find myself in a mental purgatory.

My story starts late last year when I noticed I had a swollen lymphnode in my upper thigh. I went to the doctor who prescribed anti biotics. After five months it still didn't go down and she suggested I see a surgeon for biopsy. I was hesitant but I went to the surgeon who also agreed on the biopsy. I still hesitant but my mother insisted since my grandfather had passed away from suspected lymphoma many years ago in Thailand. So I reluctantly agreed. The surgeon told me he would just remove the entire node- and I asked if that was best. He told me it was and the chances of side effects were slim. So In late April I had the biopsy done.

It came back negative (although the surgeon mentioned the pathology report was odd since the node had a feature normally associated with the thyroid)

A few days after the surgery I noticed localize swelling in my ankle and foot. I assumed, naturally, that it was due to the surgery (it was). However as it persisted I finally returned to the surgeon to have it looked at.

He was shocked- and told me I had developed lymphedema. Told me that I had terrible luck since only 20% of people who have all their nodes removed develops it and I only had one removed.

First thing that came to mind was "what is lymphedema? The surgeon told me it was nothing to worry about- that it wasn't harmful. He told me that I could wear compression stockings to keep the swelling down if I wanted to.

He also informed me that there was a decent chance that my lymph might re-channel as I heal. Though after research I am wondering if this is false hope?

This all happened this past Thursday. I was fine- then I decided to google Lymphedema. After reading about it I am horrified. I really don't know what to think now. I can't think- my mind just lingers on this potentially debilitating condition that has no cure- and from my recent understanding may be unable to prevent from progressing. I don't know what to do.

I feel even worse knowing now that I could have potentially prevented it with diligent research instead of trusting my doctors. After reading patoco's recommendation to a another member about insisting on a needle biopsy I felt devastated and angry at myself for being ignorant.

I am currently uninsured (the only time in my life I am), I thought I would be okay for a year (never had a health issue) and will be insured against once I start classes this fall.

I am a 24 year old male living in Alabama and I am glad this site is here. I feel there is a light at the end of the tunnel after reading everything- although right now its hard to see it through the bleakness of my feelings of despair.

[Cassie]

Hi, tls, and welcome,
I'm sorry for the reason you've had to come here, but glad you found us. I sure do understand your bleakness. We've all been there at one time. Just want to assure you first off that it does get better. You'll be learning the skills you need to know to care for yourself, and you'll be able to take back control of your life. Hang tough!

Your doctor at least was able to put a name to your swollen foot, and that's a step further than some of our doctors have been able to go. That diagnosis alone will empower you to seek the right kind of treatment. You're on the right track! Where the doctor went wrong after diagnosing it is in failing to help you get the treatment you need. Insurance is going to be a problem, but I'd encourage you to find a well-trained lymphedema therapist near you and see what you can work out with her/him in order to get started with at least some measurements and self-care suggestions until your insurance kicks in.

I'm sure others will be along shortly with specific suggestions, but I just wanted to reassure you that, as you begin to make the connections you need with people who can help, this really will get easier to deal with and your future will be looking much brighter than it is right now.
Cassie

[patoco]

Hi TLS

Super welcome to our family here

Just wanted to add a couple comments.

You have to stop beating yourself up for this. As patients, we trust our doctors to not only cure us, but keep us safe as well.
it was the doctors responsibility to know these things - not yours. Most patients, including myself have learned from firts the experience and then doing follow up research on it - so be kind to yourself

There are things you can do to help manage lymphedema. In addition to getting to a certified LE therapist like Cassie mentioned, since you live in Alabama, you may want to go see Dr. Paula Stewart. She is nationally recognized as a leading physician treating this condition.

Here is her info:

Dr. Paula Stewart
Dr. Stewart is a physical medicine and rehabilitation physician who specializes in lymphedema treatment. *Hospital has staff of 7 therapists trained and certified in the treatment of lymphedema.*

Healthsouth Lakeshore Rehabilitation Hospital
Lakeshore Drive
Birmingham, AL

205-868-2098

205-868-2290

http://www.healthsouthlakeshorerehab.co ... _staff.asp - this give a little of her background.

This page contains a list of certified therapists in the Southeast:

http://images.acswebnetworks.com/1/187/ ... outga1.pdf

I am happy to that at least your biopsy came back negative. that's great news. In our famliy, not only do we have hereditary lymphedema, but an outstandingly high number of lymphomas.... so we rejoice whenever anyone has a negative biopsy.

The important thing now is to get a handle on this early. By doing so, not only can you prevent many of the complications, but you will be amazed at just how much you can still do and are able to do.

It takes time too for the shock of lymphedema diagnoses to wear off too and to emotionally adjust. So allow yourself time for this as well.

If you have any questions, please don't hesitate to ask. We are all here for you and each other.

Pat

[tls]

Thank you for the warm welcomes- sorry for the dramatic intro. It's been interesting- though I'm trying my best to be hopeful. I do have a some questions. Currently I have gotten the swelling down to where my foot/ankle look normal now. I read online that kicking exercises and exercises where you stand on your toes help stimulate the lymph system? I have also cut down my sodium and fat intake to around the daily values (this is very hard in terms of sodium- good bye ramen ) So far so good, and along with compression stockings I have kept the swelling virtually non-existent over the weekend and through to today.

As long as this remains controlled do you think I can wait a few months before seeing a specialist? I am only an hour away from Birmingham so that doctor is very close,

Another question I have- I read that after surgery a patient can develop this condition and that it may go away within 6 months? Is this true- if so what are the statistics on that? (perhaps I misread).

Lastly- this past Thursday I received a cat scratch to my shin (enough to draw blood). At first I wasn't concerned since the doctor made this condition seem mild- but after reading about it on Friday I become extremely concerned and began putting polysporin on the scratch religiously. It burned for a couple of days but appears to be healing now. Could this mean I have some lymphatic function in my leg still? If so- is there a way I can preserve that?

Also, I want to say how inspiring you guys are who have serious forms of this condition and live as best you can. I admire your courage!

[patoco]

Hi again

Even though it appears to be under control now, I would still go ahead and set up an appointment. My concern is that if there is a blip and the swelling suddenly gets worse, if you get an infection etc. I just would be better to be safe then sorry.

Also, early lymphedema can often be transient. One day you have swelling, one day almost none. Problem is that all of a sudden you have it and it does not go away.

The earlier you get a handle on LE, the better it is and Dr. Stewart can certainly give some insight.

If it is lymphedema, the probability of it going away is almost nonexistent. Infact, I know of only one caee where it "seems" to have been done. One case out of thousands and thousands is not much encouragement.

BTW...having lymphedema doesn't necessarily mean that you have no lymphatic function, just that you have an impaired one. This is another important reason to go ahead and sees Dr. Stewart. While you do still have lymphatic function, you don't want to loose that to. All it would take would be an infection. For example, those cat scratches. I was in the hospital once for over a week getting IV antibiotics because of a cat scratch.

Pat

[Cassie]

Good morning, tls,
I'll second Pat's recommendation to have Dr. Stewart already on line and supervising your care as soon as possible. Explain your insurance situation and ask her what you can reasonably do between now and the start of school that won't bankrupt you. Since so many of us have insurance problems, this won't be new to her!

There has been some reference in the past to "transcient" lymphedema, but as the science catches up with the speculation and we know more about how the lymph system operates, researchers have come to understand that the "transcient" phase they sometimes see is exactly that -- only a phase. The initial swelling incident is a signal that the lymph system has already been compromised; the lymphedema is called "sub-clinical," which means it can't be eye-balled or measured, but it's there, and any number of things can trigger it again. There can be as much as 30% more fluid in the tissues than normal before any swelling can be seen or measured, so unmeasured lymphedema is still called lymphedema. I hate bad news like this, and I had a hard time getting my mind around the chronic nature of this stupid condition. Very hard to face off with, but important to know so we can gather our resources for a more prolonged approach to our on-going self-care.

Bravo for you for recognizing your infection risk and acting quickly to treat it seriously! I carry antibiotic clean-up wipes, bandaids and a tube of topical antibiotic with me everywhere as a way of being proactive about even "minor" nicks and scratches. (I have bi-lateral arm and truncal lymphedema, so paper cuts and hangnails are a major medical threat With lymphedema, no skin break is minor! Has anyone told you to use a good moisturizing cream? It helps to keep micro-cracks in dry skin from allowing bacteria to enter. I use Eucerin. Vanicream is another good choice.

Yes! your lymph system still has some function, and you can help it along as you learn the self-care "tools" that will keep YOU going strong. Look over the risk reduction guidelines -- they're simple steps you can take to protect yourself and reduce your infection risk.

It'll be good!
Cassie

[mother1991]

Try to stay positive. It will help in the long run and also good for the psyche as well. Since you have no insurance here is a link for some resources for those uninsured in Alabama, I hope it helps.

http://covertheuninsured.org/files/u4/a ... rage_7.pdf

Also if the swelling is affecting your mobility then you may want to see if you qualify for medicaid, state disability or ferderal through the social security administration either SSi or Social Security Disabilty which can qualify at any age if enough work credits for the latter. A majority of times people are not approved in the first round, put in for reconsideration and again majority not qualified. The last step is get an attorney that specializes in Social Security disabilty. You do not pay anything at all, the fee they get is a percentage of the backpay. Backpay goes to the date first applied. If you have any clinics in your area that also has treatment on sliding scale fee then may be able to go there and with the certified lymphedema therapist sometimes they work on sliding scale feeas as well or will take medicaid if you can get. Do not also hesitate to call your local state officials like the state assemblyman for your area. You would be amazed at fast things can get when you have someone in government on your side.

As staterd you are lucky to get the diagnosis of Lymphedema as a majority of physicians in United States are not well versed and do not know how to properly diagnosed unless the physician is from Europe or have een it and treated in past.

The initial treatment to get the swelling can be expensive for the wrapping and bandaging supplies as most insuance does not cover. Compression stockings may and depending on build may need to be custom fitted. Good luck in treatment. Just take a small step at a time, think positive, educate yourself, and do the best you can. Be your own advocate as well, if not sure sometimes getting a second opinion is a good idea.

One thing I have purchased for myself since I also have lymphedema in my legs is a foot rest pillow that has slope going up and then level this will help in elevating feet and legs in a more natural position than using pillows or blankets. It can run anywhere from $25-$50 depending on where baought. Can even buy online from different places as well.

I wish the best for you.

Christina

[tls]

After careful thought I have decided to contact the doctor next and see if I can get an appointment and maybe started on proper treatment for this condition before the start of classes (it'll be easier either way). Thank you for your advice.

I am- well still trying my best to be hopeful that this will simply dissipate, though I am slowly coming around to the idea that this may be a lifelong condition. However I am holding out hope that within the next 5 or 10 years a treatment will be developed that will either cure- or at least alleviate this condition. From what I have read it seems there are already potential treatments being tested that could do either of those things...

[patoco]

Hi Tls

Glad to hear you are going ahead with seeing a doctor.

Just be encouraged my friend, as I too am convinced that a cure is close to being developed. There are experiments going on even now to test several types of potential such treatments. I so look forward to the day when this is successful and to the day when they will talk about LE as something people used to get.

In the meantime, even with my present state of health, I so totally and completely believe that you can enjoy a meaningful, fruitful and successful life despite lymphedema.

My very best to you and please don't be a stranger.

Pat