custom sleeve nightmare

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moogie
moogie Member Posts: 499
edited June 2014 in Lymphedema

I am posting this so nobody else needs to experience a story similar to mine. I have a small arm and hand and have a very low volume limb. This may be a factor in the construction of a working garment for me. I wear fingertip to axilla sleeves.

I have ordered numerous custom sleeves through my fitter. Each time many alterations took place to get a working garment because there was no ability by the manufacturer to maintain a standard. If a sleeve was fine, save for the length, we would note that. In response, we would get back a sleeve dramatically different than the first, with palms so tight I could not open my hand, shorter fingers, and yes folks, a longer sleeve. It was like spinning a roulette wheel. Maybe this time I will get a pair of culottes!

I devoted months to this process every time I was ready to order replacements. No two sleeves were ever alike. Finally, the company agreed to use a coordinated team to make my sleeves for consistency. They lied. The quality control tags revealed that alterations were being done by numerous different people each time, resulting in highly variable results every go.

Ready to finish another set of sleeves, they finally sent a rep to inform my fitter they will no longer create sleeves for me. Never sent a fitter to resolve the issues each time. Had me waste over 25 , 1.5 hour trips to the fitter through the entire fiasco. Wasted over a year of my time.

My fitter is using a new company this time and I am confident this round will be more successful. Using a manufacturer who uses computer aided technology instead of a fully manual process is important, as is accurately tracking pattern adjustments.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Moogie, care to share what sleeve manufacturer would drop/refuse a patient over their quality issues??

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Moogie, that is one stunner of a cautionary tale.Surprised They will no longer create garments for you, huh? Not that they were creating garments for you anyway, since none of them fit you, but the idea that they'd blame the customer -- or better yet, blame the customer's LE arm -- just leaves me boggled. Nothing quite like a company that doesn't want customers. So if you're comfortable sharing the name of the manufacturer (or non-manufacturer to be more precise) we'd all be happy to oblige them and go away. 

    And Moogie? Man, I am SO sorry!Frown Please keep us posted on the new company. Be well -- anyway!
    Binney

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  • moogie
    moogie Member Posts: 499
    edited February 2011

    The company is GOTTFRIED. The 4 sleeves I eventually got over time were very comfortable but the process to them was like running a gauntlet. Every new order was a several month ordeal.

    The approach to customer service was appalling. I spent weeks upon weeks wrapped like a mummy because they were unable to maintain consistency between sleeves.

    Perhaps my small fingers and low volume had a part in this fiasco, but then they should have begged off 18 months ago and admitted they could not fulfill my prescription. The entire situation reveals a lack of business sense and etiquette that will not serve them well in the future. 

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  • Sher
    Sher Member Posts: 540
    edited February 2011

    Moogie, who is the new company that uses computer aided technology? 

    I wear custom Juzo (sleeve and glove) and it amazes and frustrates me that I can order a new set using a photocopy of the original order and get garments that fit differently.  How can that be if there is quality control?

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  • moogie
    moogie Member Posts: 499
    edited February 2011

    I am looking for one now. The initial pattern may be hand drawn, but tracking measurement revisions is the issue. Even having an excel sheet would answer this issue.

    RIght now my fitter is looking at alternatives, and bigger companies. I doubt I will get the enormous variation in quality from another vendor. My general assessment is that they went back to very old measurements each time in my case, because they have no internal system for tracking changes. It would explain how palm constructions so tight, cupped my hand after 5 revisions to fix the issue. I would get a working sleeve with a fixed palm, then the next one would have the cupped palm again. GROUNDHOG DAY.

    These issues are able to be addressed by CAD technology simply, and for the life of me I do not comprehend how this antiquated approach is still being used. Having a laser scan of the limb with a sheet listing measurements taken by hand could be plunked into a 3-d program. Measurement adjustments could be mapped into the basic shell, and tracked for each revision.

    I will let you know how my next sleeves work out. If you get a good fit with Gottfried by all means continue using them. But I would advise any small limbed/low volume women who do not get a good fit after 2 revisions : cut your losses and run. It will only get worse, and you will be better off using that time to find a product with some level of dimensional stability.

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  • sisterinspirit
    sisterinspirit Member Posts: 204
    edited February 2011

    Moogie,

    So sorry to hear about your nightmare. You make a good point with CAD.  Should be a no brainer to get the fit right, every time.  I wear custom Medi sleeve.  Twice they got it just right.  Third time I honestly thought they mixed up my order with someone elses, but there was my name on the tag.  Returned the sleeve along with digital photos of the ones they got right and it took them no time at all to make the correction.  Hearing your horror story, didn't realize how lucky I was.  Hope you don't have to spend hours upon hours getting a well fitting sleeve & glove.  Good luck!

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  • DarlaGMI
    DarlaGMI Member Posts: 1
    edited March 2011

    Dear Moogie,

    I am the Company Representative for Gottfried Medical.  I was disappointed to read your postings on this website about your continued frustration with our garments.

    You did request many alterations and received many custom garments from our company.  Some garments worked for a while and then, with your reorder, a change would occur.  Some garments did not work for you at all.  This is a fact.  It is all tracked in your file. Each alteration request by your fitter and ultimately your emailed instructions are in your file as well.

    Moogie, we understand we as company were not meeting your expectations to control your lymphedema.  This bothers our President and our entire management team. Our company was built on customer service and individual attention.

    The reason I am so aware of this situation is that I did go visit your fitter and discussed with her the fact that for over one year we failed to meet your expectations and achieve the fit you expected.  To be frank, many of the alterations requested would have no change to the functionality of the garment, but we did them for you anyway per your request.

    Moogie, were you informed that we refunded every dime spent on your garments for the entire file?  We did.  Were you informed our disappointment was that we were not helping control your lymphedema and I spoke to your fitter as an advocate for you?  I even offered to speak with you with your fitter.  We asked you try another sleeve, from another manufacturer, in hopes you receive the fit you deserve.  But on the chance you are not satisfied after the attempt; you are welcome back, as a patient, to Gottfried Medical.

    We were never asked to come out and help fit or we certainly would have. We also did not agree to have a dedicated team to construct your garments. 

    Moogie, we understand your frustration. We also have over a years worth of work invested but your file has been credited every last charge. You are still in possession of the garments and, more than likely, are still wearing them with our blessing.  We truly did not make this decision easily.  In fact, in my fifteen years with Gottfried Medical and coming from a fitter background myself, it has only been done one other time.

    Your remarks to this website are very pointed and can be interpreted in a way you may not have intended. I certainly hope this is the case.  We have been in business for thirty years and have thousands of satisfied customers and patients.  As I said, this situation has only occurred one other time.  Again it was intended to help you get the garment you need instead of more frustration on everyone's part.

    I do wish you the best and hope you find the perfection you are looking for with computer aided technology. But, remember if you were not told before, you are welcome back in the future if this is what you choose.  Please feel free to discuss this issue regarding your case with us directly.  I will be more than happy to clarify any further issues you may have.

    Regards,

    Darla Hredzak, National Representative

    419-450-4608

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  • moogie
    moogie Member Posts: 499
    edited March 2011

    To be clear:

    I think it is highly inappropriate for you to post on the boards in this manner and I consider it a violation of my personal privacy.I have shared this feeling in conversation with you this evening. My remarks are accurate to my experience and I consider this my last word on the subject as I hope you do as well.

    I have just spoken to you on the phone, and want to be very clear in response to your post: 

    I paid for my sleeves each time and personally received no reimbursal of any kind. Perhaps the fitter received reimbursal, but I never have gotten a dime of my money back. 

    I asked for a GOTTFRIED fitter and presented this request in writing to my fitter. 

    I would have been willing to speak with you and would have met with you if informed. I had invested a huge amount of time in this process and would have had no problem at all having a constructive discussion. The end of the process is not my issue: the painful and extremely protracted experience is the issue. It may not be your norm: But it is indeed my experience.

    I was told a team would work on my garments after I requested this in writing to the fitter, and would not have continued with the company if that had not been communicated to me. If this communication was not true, then I was not personally told the truth in the first place. I would never have undertaken the long drive ( 2.5- 3 hour roundtrip including office visits ) and continued extensive loss of work time to pursue something that had no clear or new  plan for solution.

    Alterations required on my garment were medically necessary and numerous photographs were taken to document fit and issues. A physician also noted the poor fit. From sleeve to sleeve obvious and measurable fit variations occurred which resulted in purple fingertips,loss of sensation, and a palm that literally was pulled into a cupped shape over and over again. Alterations needed did indeed affect the functionality of the garment: I need to open my hand and maintain circulation to my fingers to function.

    At that time laser scans and physical models of my arms were created for the sole purpose of simplifying the already protracted process. I was informed that then these physical models and a consistent sewing group would revise the garments to try to ensure a consistent standard in fit.

    I stand by my personal assessment that any process of revision that takes more than 3 attempts to achieve a consistent result, is probably not going to work out. I also note that my small size may be a factor in the posts. I did not initially name Gottfried in my post, and only responded to an inquiry.

    I trust this makes my experience clear.

    Moogie 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    May I add, that as a supplier of medical goods, Ms. Hredzak, I believe you are held to HIPPA rules, and your post, while not giving "Moogie's" actual name, violates her privacy.

    I understand your desire to defend your company, but I believe you went way too far with a post that should have been a confidential conversation with the client.

    Many of us have had experiences with custom garments where the quality and fit has been variable: I required 5 remakes from Juzo for a glove. It was frustrating, time consuming and while the glove was made incorrectly, my medical condition--lymphedema--was not being treated.

    The fact that you would reveal these personal, medical details about a patient in a public forum is unethical and quite possibly illegal. 

    We begged Moogie to reveal the name of the manufacturer--and she did with reluctance, and that reluctance was justified as I read your post as a defamation of Moogie and as I wrote above, a violation of her personal and medical privacy.

    Kira

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  • momof2greatkids
    momof2greatkids Member Posts: 56
    edited March 2011

    you tell her Kira! Shame on her. Shame, shame, shame. I am apalled.

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  • 3jaysmom
    3jaysmom Member Posts: 4,266
    edited March 2011

    wow!!im angry, baffled, and paranoid now!!     3jays

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    Wow, Kira! As I was reading that post, I was not even thinking HIPPA! (Tells you how long I have been staying at home with my kids and not at work!!!) Yes, indeed... I do agree that that was in total violation of HIPPA and DarlaGMI may find herself in a bit of hot water if moogie decides to do anything about it. HIPPA is a Federal law and comes with very stiff penalties if violated. Darla - in an effort to clear yourself and your company, you may have just dug yourself a hole. A very big one... AND in addition to that - I was actually considering purchasing custom garments from your company when I am done with this round of treatment... I don't think that will be the case now - and that is unfortunate because there are other people out there that have had success with your garments and I was looking forward to trying them.

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  • moogie
    moogie Member Posts: 499
    edited March 2011

    bump

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  • shadylady1
    shadylady1 Member Posts: 75
    edited March 2011
    This is the most unprofessional thing I have ever seen!  I am an RN, a BC survivor and I suffer from lymphedema in my arm and breast.  I will NEVER use Gottfried Medical and I have printed off this post to show my LE specialist to ensure they do not use any Gottfried products..  I would recommend filing a complaint with the BBB (which they are a member of according to their website) and the Attorney General.  Unbelievable.  BTW, they have a "blog" on their website that states the following: 

    Patient Privacy

    Due to HIPAA Regulations and our concern for patient privacy, identifying information about patients, or questions about orders will not be posted. If you have questions about these subjects, please contact our offices for assistance.

    Moogie - I would call their office....   

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  • RachelKa
    RachelKa Member Posts: 174
    edited March 2011

    Moogie, Sounds like your insurance company does not pay for sleeve, but just the same, should they have policies that reimburse, I would most  definitely report your grueling experience as well as let Gottfried know of the reps' most inappropriate posting to this site.  Your unfortunate experience may be the exception, but it happened, and you have every right to share without being violated. I hope you've since found a sleeve that works. Have you?

    Rachel 

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  • moogie
    moogie Member Posts: 499
    edited March 2011

    I am presently in process on new sleeves and am hopeful for the future.

    My insurance does cover some cost, but I laid out significant money myself as the percentage covered is only a portion of total cost.

    It is heartening to have the support of my community: the community of Lymphedema ladies who deal with this issue every day. Much thanks to you all.

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    Good luck Moogie. 

    Perhaps instead of posting here the rep should get in touch with you personally.

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  • moogie
    moogie Member Posts: 499
    edited July 2011

    UPDATE:

    I am presently wearing my new sleeves that fit well! The company I used was supportive and provided personnel to go over all the measurements and make adjustments where needed. I will not give the company name on site given the fact that Gottfried violated my HIPAA rights, but will answer PM's if anyone else wants to know this information.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2011

    Yeah Moogie: that was outrageous with the Gottfried rep on these boards. When in doubt: blame the patient....

     Glad you're getting better care and garments that fit.

    Kira 

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  • Warrior13
    Warrior13 Member Posts: 7
    edited July 2011

    Hey ladies, my name is Matt, I have lymphedema of my right arm and have had it for 7 years. I have been thru hell with the sleeves and even have several custom made from Germany with my name and serial number stitched in them. Then I was in california on a business trip and by luck found a Dr who was willing to look at my arm. She was so amazing and is a 2 time survivor with lymphedema and is a national speaker. Long story short, she GAVE me a generic light weight sleeve and sent me on my way. I left VERY skeptical. By the time I got home, my arm shrunk 2-3 cm. I dont want to bore everyone with the details but will do so if you ask. Point of the story, dont over compress your limbs and restrict your flow. Stay in a pool as often as possible and massage your arm. IT works. DO NOT loose faith!!

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