Cindy.. 8 months post surgery with Dr Granzow

imageThis is a new update from Cindy after her surgery with Dr Granzow in December 2014. Always great to hear of people’s progress as this is a very slow process waiting to see results!! Any changes are good changes and give hope to others.

 

“Just got back from my post-op appointment with Dr. Granzow (in California). As I said, I was supposed to see him in June, but a personal loss prevented me from making that appointment. I am 8 months out from my December 2014 surgery. I feel wonderful. I am not using any nighttime compression. My right leg (the lymphedema one) is smaller in some areas than my left leg. There is no pitting. The overall volume difference between the right and left leg is 34 mil. In January 2014, the difference was over a 1000 mil. Unfortunately, around my knee area I accumulated excess fats and proteins under the skin. It is not fibrotic and it is not fluid, it’s just there. There is not enough there to warrant any type of lipo to remove it. I am still wearing my custom garment (Elvarex class 3) during the day and receiving MLD twice a week. I’ve chosen to be very conservative and let my lymphatic system really have time to heal. My plan is to cut back on MLD to once a week, then in a few weeks not wear any compression on Saturdays. As long as I have no swelling, I will maintain that for 6 or more months. Then I will go without compression on weekends. I’ve lived with lymphedema for 5 years, I am going to do everything possible to get the maximum benefit from this surgery. I sincerely believe that if I take it slow and not overwhelm my lymphatic system, I will one day be able to be out of compression more than I am in it. That is my longterm goal!

I flew for the first time in July. The plane ride was over 5 hours and I did not have any swelling (of course I was wearing my garment). Prior to the surgery, I was afraid to fly. Prior to the surgery, my leg still swelled even when wearing compression. I only started wearing a custom garment in November 2014. It was never suggested to me before. I always wore an off the shelf garment. I was led to believe custom garments were only for people who didn’t fit in off the shelf garment. False information!! I should have been in a flat knit from the very beginning. So much time is loss when you are trying to get treatment for lymphedema and that is a tragedy. Had things been addressed correctly, the fats and proteins would not have had a change to build up the way they did. Accessing MLD treatment is not always easy.

The psychological aspect of living with lymphedema is the hardest part (in my opinion). Always wondering what is going on under the skin. Praying the skin stays soft and pliable. Having to stay on top of it is exhausting. Ignoring it would be foolish.

Dr. Granzow and his staff are incredible. I know I am in very good hands. Any question I have is answered immediately. As incredible as it may sound, I am able to contact Dr. Granzow directly. My own research is what led me to Dr. Granzow. Being proactive is mandatory when you have lymphedema. Information doesn’t just come to you, you have to go out and find it yourself.” By Cindy

This is a link to Cindy’s surgery in December https://lymphnodetransplant.wordpress.com/2015/01/05/california-lymph-node-transfer/
Thanks so much Cindy for sharing your progress with others… Slow and steady wins the race!!! This surgery is not an instant fix and it can take a year to start to see the first signs of change and improvement. The new nodes grow very slowly so great patience is needed..

This blog does not replace advice and consultation with an experienced surgeon… Make sure to ask lots if questions and also find out about their pre and post surgery protocols…. Helen

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26 thoughts on “Cindy.. 8 months post surgery with Dr Granzow

    • Thank you Jennifer. I thought Australia had lots more to offer than the U.S., do you mean MLD therapists or surgeons? I replace my garment every 4 months and have to pay out of pocket. My insurance would cover it, but I can’t find a local medical supply company to order it for me. Instead it is ordered by the PT that works with the surgeon in California (I live in Las Vegas, NV). It gets billed to the surgeon and I reimburse him. My local medical supply company will only work with Medi, not Jobst!!!!

      • Hope is what carries me. I’m very passionate about what it means to have lymphedema and am constantly searching for more information. Too many people (doctors included) have no idea (or understanding) of what lymphedema is. It is NOT just swelling.

    • Sharing is so important. So thankful to have this blog to share my story. It appears more women are having this procedure done on their legs. Most studies are from arm patients. Leg lymphedema presents more problems because it is always fighting gravity and the size of the limb is larger than an arm.

  1. From 1000 to 38 mil is such a huge improvement!
    Nice to hear good outcomes for the legs too.

    Take care and thanks for sharing!

    • Yes, it is. Please remember when the number was over 1,000 , I wasn’t wearing any compression. The size and feel of my skin was alarming. I got back in compression and started receiving MLD. The plan was to get my leg as small as possible prior to surgery. Compression, MLD and a pump got my leg size down. Fibrotic tissue was broken down. Since surgery, I am continuing with compression and MLD. In time I will start to pull back on both.

  2. Good luck to you, Cindy! I don’t know anyone with leg lymphedema and I wish I did. It would be so nice to have someone to compare notes with but this is a close second!
    I live in the SF Bay Area, though, so if anyone else is close I hope you will contact me, I’d love to meet you!

    This is the first I have heard of Dr. Granzow in Los Angeles. That’s a heck of a lot closer than Dr. Chang in Chicago who I was considering seeing. I have missed, I guess, your other posts, Cindy. Did you have lymph note transfer and if so how many and did they go into the groin and have you had any problem with that?

    My knee also is pretty swollen, though fairly soft. I have never worn a custom garment, only off the shelf but I have not missed a day wearing it for over 2 yrs since I was diagnosed. Though when I go on vacation and am swimming
    I go a bit without it when laying on the chaise lounge in between swims. (I protect it well from sunburn)

    I am so happy to hear your leg is looking so good.

    • Pam, I will get back to you with all the details. Granzow is in the LA and Santa Monica region. He is talented, passionate about his work and kind. Give me about a day and I will answer all your questions. 😊

    • Pam,
      Google Dr. Jay Granzow and you will see his website and the section he has devoted to lymphedema. My original post, right after my surgery was posted in January 2015 on the My Lymph Node Transplant website
      (probably in the archives, it is titled California Lymph Node Transfer).
      Brief history for you:
      In August 2010 I was told I had a grade 1 endometrial cancer. I had a radical hysterectomy (removed 19-21 nodes). After the surgery, the pathology report showed no malignancies!! There was no need for chemo or radiation. Doctor said the cancer must have come out in the D&C. Sounds kind of crazy to me, but no longer matters, what’s done is done. In October 2010 I had an evisceration (inside stitches opened) and my small intestine prolapsed outside my body. Thankfully, I didn’t lose any of my small intestine and they were able to put it back in place. Shortly after this surgery, I developed lymphedema in both my legs and groin area. Needless to say, I was scared, had no idea what was going on. When I was finally able to contact a lymphedema therapist, I had to wait weeks to get an appointment. My leg kept getting bigger and bigger and felt so heavy. My right leg was wrapped and eventually I was put in an off the shelf Medi garment. Thankfully, my left leg and groin swelling subsided (took about 9 months) but not my right leg. I was so disappointed after my MLD treatment, my right leg looked very different than my left leg, it felt different and I loss some mobility in it. Even with compression, my leg swelled during the day. I did lots of research and found Dr. Granzow. I first met him in June 2012 and didn’t decide to have surgery until January 2014. Took a long time to get the surgery scheduled (insurance problems). Prior to the surgery, I always thought if I did everything I was suppose to it would clear up on its on, it didn’t. Prior to the surgery I tried everything: MLD, pumps, acupuncture, cold laser, kinesio taping, working with a nutritionist, yoga, etc. I was so frustrated because I felt so alone. There was a lot of information on arm lymphedema, but not leg lymphedema. I couldn’t understand how I could have this chronic condition, yet not be under a doctor’s care. Finding Dr. Granzow was a blessing. Even before deciding on surgery, he was there to answer all my questions (I had lots of them).

      The surgery involved taking one node from under my left breast (more in the trunk area, not under my arm) and transferring it to my right upper thigh (not my groin area). I hear lots of people talk about “nodes”, Dr. Granzow said they remove one node. The surgery took 7 hours, so I can only imagine how long it would be if they had to connect more than one node.

      My email is najarro2414@cox.net if you have more questions, or want to stay in touch. Good luck to you. Surgery is never something you just jump into.

    • It is great to see people connecting and being able to ask questions… We are no longer alone…it is a huge decision to have surgery… At this stage it does not seem to be a cure but it helps the leg to drain better and remain softer… For me I have had no infections since surgery … Pre surgery I had many infections for which i had IV antibiotics…. Very debilitating…. Welcome to are community… Cheers Helen

    • These measurements start from before Cindy had any treatment… No MLD and no compression… They then worked to get the leg as small as possible pre surgery… Using MLD and wearing garments… Latest measures are post surgery… Not a cure but a huge help for the leg … Helen

    • As Helen said, that high number was when I was not wearing compression or receiving MLD. On 8/4/15 my non lymphedema leg had a volume of 7667, the lymphedema leg had a volume of 7702. I’m looking at a spreadsheet with my numbers on it. Underneath leg volumes (which I just gave you), it says volume of edema 34 (that appears under the 7702 number). Underneath that it says % reduction of edema 95 (that appears under the number 34) I don’t claim to fully understand the mathematical part. I’m just pleased that the leg(s) volume numbers are close. I’m certain I could measure my leg 2 or 3 times a day and the numbers would never come out exactly the same. I could also weigh myself 3 times a day and it would read differently every time! Lol

      • On 12/28/15 leg volume of LE leg was 7533! On 08/04/15 it was 7702. I am so pleased with the reduction. Now it is time to pull back on wearing compression during the day– 😁

  3. Helen
    Thank you for having this blog.
    It’s wonderful to get all the information that’s here since most doctors we go to know nothing about how to treat Lymphedema other than maybe a few basics, if that.
    Pam

  4. Pingback: Cindy’s update on the funding issues for those with Lymphoedema | My Lymph Node Transplant

  5. Pingback: Latest news from Cindy.. Can I let Compression go? | My Lymph Node Transplant

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