Liposuction/Flying Squirrel
Hi. I have BCR lymphedema. It has been a long and difficult journey for me. I live in Tampa and have had limited success with treatment options and providers in this area. After being told by Moffitt there were no treatment options for me I went to Cleveland Clinic and met with Dr. Chen who recommended liposuction and flying squirrel. I had the surgery on Feb 23,2022. The removal of the excess skin on my upper is fine. No problems. HOWEVER the lower arm where the liposuction was done has been excruciating. I kept the arm wrapped for 4 weeks as instructed and am wearing a 30/40 sleeve and using my flexitouch machine for an hour daily. I am also noticing swelling around the elbow. The area is approx 1" bigger from swelling. I have been wrapping the limb at night to try to decrease the swelling with some success. It goes down but increases when I take the wrap off and out the sleeve on. Is this normal? I am exhausted because of the pain and spend a lot of time resting. The arm looks great even with the little bit of swelling but the pain is intense especially in the evenings. Dr. Chen sent me home with 6 days of pain meds which I had a very bad reaction to. I reached out to his office about the pain. They refused to give me anything else and recommended I ask my pcp for gabapentin. I do not want to pursue this because I was given Lyrica for chemo induced neuropathy. My arm swelled immediately and the neurologist took me off and recommended I avoid using Lyrica and gabapentin. I feel the risk is too great to try it especially now. I am supposed to go back to Dr Chen in a month. I am thrilled with the appearance of my arm. He removed about 2.5 liters of fluid and tissue. But I feel so frustrated with trying to manage the pain. Has anyone else experienced this much pain and if so, did it subside? How did you manage the pain
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I’m curious did you have pain in the lower arm before procedure? Is the pain everywhere? Do you have swelling in other areas of your lower arm besides the elbow region? Also is the gabapentin supposed to worsen lymphedema? I’m just curious as I have been suffering with lymphedema for about eight years and take gabapentin. I’ve had a bad flare that started right after Christmas and I have had zero luck with massage or wrapping and I am at my wits end.
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I'm curious did you have pain in the lower arm before procedure? Is the pain everywhere? Do you have swelling in other areas of your lower arm besides the elbow region? Also is the gabapentin supposed to worsen lymphedema? I'm just curious as I have been suffering with lymphedema for about eight years and take gabapentin. I've had a bad flare that started right after Christmas and I have had zero luck with massage or wrapping and I am at my wits end.
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Hi RunnerGirl. No I did not have pain in the arm prior to surgery. The pain is mainly from the elbow to the wrist where the liposuction was done. Fortunately it is getting better and better. The pain is flaring up later in the evening and I am able to tolerate it better. In answer to your question about gabapentin … from my experience this is controversial. I have peripheral neuropathy from the chemo and was prescribed Lyrica. The swelling started immediately and did not respond to complete decongestive therapy. I discussed it with my pharmacist and he told me 8-10% of patients on the drug experience peripheral edema. My doctor took me off the drug and advised me never to go on Lyrica or gabapentin because of the risk of peripheral edema. I now work at a VA hospital and asked a PharmD if there was any research available about those drugs and HCTZ (water pills) for patients with lymphedema and he was able to provide about 4 medical journal articles supporting my hypothesis. I tried to discuss it with my doctors at Moffitt but they were not interested in reading the material I provided and denied there was any causation between the medications and swelling in my arm. Dr. Chen explained that once my nodes were removed I had lymphedema and there is no conclusive evidence the medications cause the arm to swell. To me, that is like being in a car wreck after running a red light and being told it wasn't running the red light that caused the car wreck but the fact I was driving a car. Both are true statements and both events can lead to the car wreck and both events may not cause a car wreck. Personally I believe that the swelling was brought on by the medications. However that is an unqualified opinion based on research provided to me and my own personal experience. I am really not qualified to make a conclusive determination, but my PCP and neurologist agree with my theory for what it’s worth.
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what kind of chemo did you have. I think the taxanes are suppose to have a high risk of injuring lymphatics. Obviously node removal and radiation as well. How long had you had lymphedema? I know you had the liposuction is there a possibility for a LVA or lymph vessel transplant in the future?
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I was prescribed the AC-T treatments which does include Paclitaxel. According to the surgeon, I have had "lymphedema" since my nodes were removed in 2011. But if you are asking about the swelling ... The first round of swelling occurred July 2012 immediately after I went on Lyrica. CDT did not reduce the swelling and on a whim I tried acupuncture after I stopped taking Lyrica complete. Weirdly enough the swelling was completely resolved 2 hours after the acupuncture treatment and remained resolved without wearing compression garments for 4 years. The swelling reappeared the summer of 2016. My weight was creeping up and I was put on HCTZ to control my blood pressure. The swelling occurred about two weeks after I started HCTZ. I have tried everything to manage it with very little success on my own. I was told I was an excellent candidate for LVA by Moffitt but it took them 6 mos from the time I was told this to get me on the operating table and then the surgery was aborted. I was told by my surgeon the disease had progressed too far in that short of time and there were no more treatment options available. I have been to several doctors since but Dr. Chen is the first MD who gave me hope that the disease could be treated and managed more effectively. Yes, there is a strong possibility I will need LVA or LNT down the road but Dr. Chen won't make that determination until I am one year past surgery. Honestly, the further down the road I get, the better I am feeling which is a relief and the arm looks great. I can actually wear normal clothes again. I lost 47 lbs to have the surgery and am continuing to lose weight to help better manage the lymphedema. I am only 10 lbs from hitting the "normal" BMI range but will try to go lower as my doctors tell me the lower I can get my weight the easier it will be to manage the condition. As difficult as it was to get through everything without pain meds, I feel hope about the treatment option I underwent. Life is definitely better. Would I do it again? Yes. But I would have liked to have been better prepared psychologically for managing the pain without pain meds. Hope this helps!
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Thank you for the reply. I just had my appointment with Dr Chen for a consult and will need to schedule another appointment for the ICG diagnostics. Unfortunately I live in Oregon and will have to travel back. He feels like my lymphedema has progressed to the point that it's more solid state so he feels like liposuction is most likely what needs to happen but of coarse won't know until I have the testing.
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Also I'm curious did you have an incisio all the way to your wrist?
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Hi RunnerGirl. I too live out of state and had to travel to Cleveland. And like you, Dr. Chen felt my lymphedema had progressed to the point I was near end stage, which required the more radical intervention of the liposuction/flying squirrel procedure. I think you will be very happy with the results once you get past the initial stages of healing. My arm looks amazing and yes, I do have to work hard to keep it from getting swollen again but I am not sure if that is just my own paranoia from what I have been through. I am using the pump differently than I was before and am always encouraged when I finish because I can see the difference immediately after I use it. Prior to the surgery, I would use the pump for more than hour and there was absolutely no difference so I was not very motivated to spend an hour or more of my day wearing that jacket and tied to one spot for such a long time. Now I have the setting on the hand/forearm for 27 minutes and when I take off the jacket, I can literally see where the bands pumped the fluid causing the arm to be reduced. Usually within 15-20 minutes the remaining portion of the arm swelling is reduced and the overall measurement is reduced by about 1.5" and the arm is once again the same size as the other arm. Now that the summer heat is kicking in (I live in Florida) I am also wearing compression bandages at night when I go to sleep after I pump a few times a week which also seems to prevent the arm from swelling and aids in reducing any existing swelling. I never experienced this before so for me it feels very self-empowering and I am encouraged to keep doing these exercises to manage the swelling. Hopefully, I will get to the point some day when I don't have to do all of this but at least now what I am doing is working. Dr. Chen only removed the excess skin on the top of my arm. He performed the liposuction on the forearm. I was not sure how this was going to go down before the surgery and was pleased with the overall appearance of the arm because scarring is not very noticeable unless I raise my arm. As I stated before, he removed approx 2.5 liters of skin, scar tissue, fat and lymph fluid from the arm. Everytime I look at 2 liter bottle of diet coke, I have a mental image of what went down.
Having said all of that .... the best advice I can give you is to talk to your primary care doctor BEFORE the surgery to have a clear plan and understanding of what pain medications he can and is willing to prescribe upon your return home. The laws are very tight right now due to the opioid crisis and since you are crossing state lines when you go home, Dr. Chen will not be able to write you a script for pain meds. The only option will be for them to be mailed to you by Cleveland Clinic. While Dr. Chen may promise you he is committed to managing your pain ... keep in mind that what that looks like to him and what that sounds like to you and what the law will allow are three different scenarios. I was able to get through it but I literally only had 6 days of pain meds and they made me so sick I could only tolerate them for 3 days before I had to stop. The nerve pain in my arm was pretty bad and lasted for about 6-7 weeks. I am not experiencing the pain any longer, but the arm is still numb and some days it starts bothering me in the evening but it is all very manageable now.
I hope this helps. Feel free to reach out for encouragement or if you have questions. I am really happy with the outcome now and don't have any regrets.
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Do you have to have an advanced lymphedema to get this done?
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Hi HomeMom. I really am not qualified to provide you with an educated reply to your question about appropriate treatment recommendations. The surgeon will need to evaluate you properly and then make his recommendations for treatment. I will say, however, it is shocking how fast lymphedema can advance to late stage. I was initially cleared for LVA surgery and told by the surgeon I was a perfect candidate for the surgery. It took a few months to get on the operating table and unfortunately, the surgeon had to abort the surgery because in that short amount of time I had progressed to a late stage and the surgery could not be performed. Dr. Chen recommended the liposuction because I was too far advanced at the time I saw him to opt for the lesser invasive procedures. I will return in a year after my surgery to be re-evaluated and he will decide if I would benefit from more surgery. Hope this helps you in your journey.
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I'm sorry to hear about your struggles with lymphedema and the pain you're experiencing after your surgery. It sounds like a difficult situation, and I hope you did find relief.
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