Liz… Five weeks post op…..

imageGood morning everyone,
This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night-time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

Thanks for your latest update Liz.. It is great to hear your step by step progress… Thanks Helen

14 thoughts on “Liz… Five weeks post op…..

  1. Hey Everyone,
    Last evening was another milestone–my first time in our community pool in 2 years!!!–It felt wonderful–Very ‘freeing’–no need for compression garment just pure freedom. My affected leg felt exactly like the unaffected leg…and guess what?–no one even noticed my leg. I had this misconception for the last 3 years that the whole world was looking at my leg but that is not reality. I had the feeling that my leg was so important to everyone and people would be staring at my leg but the truth is …it was only important to me which is still huge but it can not rule your life (It ruled mine for 3 years and I’m so sorry I allowed that to happen)….The mild compression the water provides is gently messaging your extremity and encouraging lymphatic drainage.

    We have been having a miserable heat wave here in CT. for the past few days and the water in the pool was cool, clean, and invigorating. I paid for a new membership so that I could remain motivated to go to the pool at least 3 times per week and get that ‘feeling’ again. Hopefully, it is encouraging those new lymph nodes in my groin to grow big and strong.

    Someone had written at one time that she wore compression garments in the pool. After discussing this point with Dr. Chang’s LE therapist and my therapist here in CT. I wanted to clear up the fact that compression garments in the pool are not needed. The water pressure provides that service to us. Thank God!! Liz

      • Cindy,
        I just read your entry about Dr. Granzow–You nailed what you said in that entire entry about the psychological aspect of this journey–also, about having to find out everything for yourself-I am now about 7 weeks post op from Dr. Chang in Chicago. For me even getting re-measured for new garments is taking forever—I am so frustrated–I have been re-measured but from what I understand, the company is waiting for preauthorization from my insurance and so for now, I continue to wear the Elvarex (grade 2 at waist and grade 3 down the left leg)that I was wearing preoperatively. They are still difficult to put on–I’m not sure I need a smaller size. Nothing has changed so far.

        At night, I use the Flexitouch and then I put on the Tribune quilted night time garment, I have started wrapping the quilted garment with Comprilan wraps.

        The Elvarex I presently wear during the day are the same ones I wore pre-operatively, which still fit perfectly. I still struggle pulling them up to my waste with a pair of purple Playtex gloves while I sit in front of the fan. This whole journey has proven to be a ton of effort. Prior to discovering this blog, I felt like a freak and totally alone. Now, 3 years since first noticing my left leg swelling, I am in the acceptance mode. Life HAS to go on.
        It sounds like your leg is doing really well. I’m hoping when I am 8 months post -op that I will have similar results to report. Take care and stay in touch–Liz

  2. Yes, the lump in my neck and the lump from where the nodes were transplanted to (my groin) have gone down to normal…..Thank you for asking….how funny, I had forgotten about that fact….lol–I have not noticed any difference yet in the size of the extremity. I have been in touch with Dr.Chang’s office and their response is what I expected….It is slow to happen and within the year there should be change…

    What the surgery does give you is hope…without the surgery and transplanting new lymph nodes, no matter how many compression garments you wear or use, those lymphatic chains will not develop on their own. I know in my heart I have done all there is to do so the waiting game is in its infancy stages right now. It has been about 1 and1/2 months since the surgery. Dr. Chang said around 8 months to 1 year….The summer is the toughest part BUT..I realize that no matter what I wear, no one is really looking at my leg!!!—I wear my Elvarex and a pair of Bermuda shorts and I have gotten to the point that I don’t care if anyone NOTICES….FINALLY…..YAHOOOOO….life is too short for the worries I used to allow myself to have. What ever is supposed to happen, I know will happen……Obviously, I wish I didn’t have to pull this heavy stocking on every day but I am alive, healthy, and blessed that God allowed me this very expensive surgery. I have hope for all of us….Thank you for inquiring. How are you feeling and doing? Liz

  3. Are you the same Cindy who had surgery with Dr. Granzow 8 months ago? I responded to a Cindy and thought you had talked about the Elvarex you wear..now I’m confused–Oh well–LOL-Liz

    • Lol. Nope different Cindy , I am thinking about having the surgery . There’s a dr Klein here in Orlando that learned the technique from dr Becker …

      • They are just various brands if custom made or off the shelf… They seem to have various fits and it is just a case of trying to find what suits you best… Price is about the same for all of them… Some have flat and circle knit…. Some only flat knit… You can find the various types online to get an idea…

      • The Elvarex is a custom made flat knit prescription stocking. I have had physicians write prescriptions for me to obtain them. The insurance company needs to give pre-authorization for the stockings in order for them to be paid for by the insurance company. They are custom made garments and expensive but they do last. The insurance company allows you to get a new pair every 4 months but quite honestly, they last a long time when they are cared for properly. The therapists say they loose some of their elasticity but I have found that to be only minimally true.

        The off the shelf panty hose, like jobst are a circular knit and tend to “band” around the ankle, knee or thigh. For short periods of time, the panty hose are adequate but for longer periods of time, the ‘banding” can cause more harm than good. I hope that helps. Liz

    • I am that Cindy, Liz. I can appreciate what you say about the frustration of getting measured and getting the garment. The whole point is to keep the limb as small as possible, yet there seems to be a hold up when it comes to getting the garment. Then there is the question of it fitting properly. Can’t be too loose and certainly can’t be too tight. I’ve spent a lot of money trying to get a stocking that actually fits. I am currently still wearing my Elvarex, but will be switching to the Medi custom flat knit. It is much thinner, a nicer color of beige and my insurance will pay for some it. The local medical supply company in Vegas doesn’t like Jobst and would not order the Elvarex for me, hence, paying out of pocket and having Granzow’s office order it!! I have been replacing my garment every 4 months (ouch, $$$$). Really hope the Medi works :))
      How are you feeling? Are you noticing any difference in the size of your leg? I’m pleased with my results. I wear the garment during the day, take it off when I go to bed and put it back on after I shower. I cut back on MLD and receive it only once a week. My goal is to have monthly MLD visits. I’m taking it really slow, don’t want to rush this.

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