Dr Sylvie Delanian

Dr Sylvie Delanian is a Radiation Oncologist working at the St Louis Hospital in Paris. For the past fourteen years, she has been looking at ways to treat the damaged caused by radiation therapy post cancer treatment. The level and type of damage depends on the area effected. In this blog I look at Radiation Induced Lumbar Plexopathy caused by radiation to the pelvis due to various types of cancers. In layman’s terms the radiation causes healthy tissue to become fibrotic, blood vessels are damaged, this in turn causes the nerves to die as they lack a blood supply. Dr Delanian in her work is looking at improving the blood supply to the nerves, reducing inflammation and healing fibrotic areas.

In her articles her work has helped some patients, but it is difficult to say how each person would respond, as the amount of damage is different for everyone, it is also more or less advanced. All of the drugs have been used for more than 20 years  but not for RILP, they have in the past been well tolerated but not used together.

http://www.dailymail.co.uk/health/article-1089091/Why-wont-doctors-face-dangers-radiotherapy.html

The question is why do we not know about this therapy?? Why did it take another patient with RILP to tell me about it?? Why did she only find it while trawling the internet for help?? Why do other Radiation Oncologists and neurologists not know about her work??

In our Facebook Page Files there are articles on Dr Delanian, plus the full medication regime that she uses and information for patients. I will be starting on these medications but it is in her words “probably to late for me as the damage is very advanced”. However she feels it could help the nerve pain, lymphedema and any bowel or bladder issues… Maybe!!! .. I am to use the medications for six months and let her know how I am going.. Another lady in our group has already started to using the regime, she is still able to walk but has weakness and foot drop, we will see how she goes too, so far she has tolerating it well.  If you are thinking of using these medications I suggest you contact Dr Delenian and your own Doctor… For those of you living in Europe she is in Paris and she also has “English Days”. Well worth a visit… Will keep you posted on my progress and others. The best results have been seen after using for 1-2 years..

Link to Facebook Group

https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

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22 thoughts on “Dr Sylvie Delanian

  1. You make an excellent point in the need for shared information. There is a bill in Congress to fund a database where researchers can post and share information. The National MS Society is working hard for its passage. This would benefit all of us. It currently takes professionals hours they often don’t have to get new information.
    That said, I fully agree that access to new information, no matter how it is obtained, is important to all of us.

    Liked by 1 person

    1. I think sometimes it is about finding a doctor who is interested in finding answers, because they are available on the internet. However an easily accessible data base with the latest info on research would help i am sure … Lets hope that this gets set up in the near future… 🙂

      Liked by 1 person

  2. Hello, I have not been diagnosed with RILP but strongly suspect it. I have progressive leg weakness that I noticed starting around October 2014. I had radiation treatment following testicular cancer surgery in 1997. Tests are ongoing but doctors are stumped. I can still walk but it gets more difficult each day.

    I’m very interested in the work Dr. Delanian is doing. Can you provide an email address? I’m struggling to find one online and I would like to contact her.

    Thank you very much, and I wish you all the best.

    Liked by 1 person

  3. Thank you, Helen. Doctors tell me I have all the telltale signs/symptoms of RILP: history of radiation treatment in the pelvic area, bilateral leg weakness that’s asymmetrical, MRIs showing enhanced nodules in cauda equina, EMGs showing definite nerve signal damage, elevated protein but no malignant cells in a lumbar puncture, and muscle atrophy (upper left and lower right leg). All the telltale signs EXCEPT scarring/fibrosis. My doctor at Duke says there is no scar tissue, no spinal cord signal changes, no infiltration of blood cells normally seen in RILP. Biopsy and spinal angiogram showed the lesions that according to pathologists, appear to be hemangiomas. But the doc agrees that clinically, I present as having RILP.

    Any thoughts you might have are appreciated. Thank you again for your time.

    Liked by 1 person

    1. Non of the many many tests I had similar to you showed anything in particular but I think with RILP it is a matter of eliminating everything else.. It is more the history and the symptoms that come on gradually.. Drs very rarely see this so they dont really know what to look for .. When I first went to the neurologist he thought it was RILP but it took a whole year of tests and seeing other doctors for him to confirm it by eliminating everything else.. Sadly DR Delenium seems to be the only DR with any interest in finding help or at least a way to slow symptoms .. I was already paralysed when I contacted her so she did not think this could be reversed but meds may help .. I started her protocol but could not tolerate them so decided to stop and make the best of a bad situation … If you are on Facebook our group is very good and helpful .. There are about 40 of us and we do support each other .. Everyone is at different stages .. A few are trying Dr Deleniums protocol and some altered versions .. Stay in touch this can be a lonely road … My email is helenbrd@bigpond.net.au if I can be of help … Helen

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  4. Hello Helen – I hope you are doing well. I received a reply from Dr. Delanian and sent you an email yesterday. If you have time, I’d appreciate your thoughts.

    My best wishes to you,
    Rich

    Liked by 1 person

    1. Thanks I got your email …do you have some particular questions you would like me to help with as this would help with my reply?? Just email me your thoughts or queries… Helen thanks ..

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  5. my husband went to Dr. Delanian four years ago, based on research we found on the internet. She saved his (quality of) life. He was released from a french hospital after two months with no hope of treatment. He couldn’t swallow, had trouble breathing, and lost forty-four pounds. After treatment, he his traveling around the world on his motorcycle and living normally. He is so grateful to her. The treatment was our miracle. Good luck, you are in the best of care. Say hi from Hubert Kriegel…thetimelessride.com

    Liked by 1 person

  6. Thank you for sharing your experiences and insights.

    I began Dr Delanian’s penteclo combination drug treatment about 9 years ago (2009) for my postradiation lumbosacral motor plexopathy.

    I found an early penteclo paper of hers online, contacted her via email (I live in California). With her guidance my neurologist prescribed me the penteclo (along with her suggested prednisone dose which she instructed me to discontinue after 12-18 months).

    I visited her at her hospital in Paris in 2011.

    As per her instructions, I followed her penteclo regimen for 5 years, and then discontinued the clodronate, but continue taking the pentoxyfilline and vitamin E (I still take these today, as she suggested).

    I had been experiencing the beginnings of progressive leg weakness about 11 years ago at age 50, beginning with reduced jumping and running ability and reduced ability to stand on tiptoes. I had post surgical radiation to my cauda equina in 1989 and again in 1992 ( at ages of 32 and 35).

    Without medical intervention the spinal tumor would have grown up to my brain and killed me by 1992. So while I’m not thrilled with the side effect from treatment, I am thrilled and delighted everyday to be alive!!!!

    In 2009 when I started the penteclo i could walk with a fairly normal gait without sticks and could bicycle in low gear to the top of the local hills about 1000 feet elevation climb. However climbing steps was getting to be challenging.

    Unfortunately the leg weakness has continued to slowly progress over this decade, even with the penteclo. Maybe the progression has been slower than it would have been without the penteclo. Today my legs are mainly atrophied with little muscle mass. i walk with forearm crutches, and no longer can bike or climb steps. I need to use my arms to stand from a sitting position. In the last year I added a hand control in my car to control my brake pedal, to allow me to continue driving safely.

    I continue to be active using my upper body to stay somewhat fit and happy. This week (like most) i kayaked twice in the San Francisco bay, swam once (1100 meters) and did a high intensity workout on my upper body ergometer (UBE).

    I will kayak today and tomorrow once the rain stops

    Knowing that my leg weakness may progress has made me want to “seize the day”. i have done a lot of travel to get the most out of the legs that I could and have visited many wonderful places (with my love and also with my adult sons) even in these last few years, including Turkey, dubai, Chile, peru, belize, canada, Guatemala, and in this last year italy and last month Mexico city.

    I greatly appreciate Dr Delanian’s work. Though my legs have slowly weakened to their present very weak state, the progression may have been faster without the penteclo (which I have tolerated fine with no side effects). It has also been emotionally very helpful for me to know that I found the world’s top expert on my condition and am following her protocol, even if imperfect it is the best I can do.

    I hope you can all find sources of joy, happiness, love and meaning (in spite of our significant challenges) in these extra decades that the medical treatments have given us.

    please Keep us posted.

    All the best,
    Reuben Hale

    Liked by 1 person

    1. Thank you so much for sharing your story with me ….there are not so many if us around which is why I stated this blog and the Facebook group …i felt so isolated… i am very interested to hear of your experience on Dr Delanian’s protocol…some in our Fb group are using all or part of it … I tried but it made me very ill so could not tolerate …also Dr Delanian felt that as I was already paralysed it probably would not reverse the situation… sadly I found her to late in my progression …as you say it sounds as if it slowed things down for you … I too like to Kayak and hand cycle ..i also go on long rolls in my Wheelchair!!! I go to the gym twice a week and my upper body is very strong .. sadly my swimming is no good as my legs float and I bob in the pool in the seated position but I can cycle my legs in the water which is a bonus …however all of these activities I need help with to get set up which is frustrating … I think I still have a lot of adjusting to do not even being able to weight bear brings lots of challenges… i hope it is ok if I share your story with my FB group I will remove your name … if you ever wanted to join us your experience would be invaluable… stay in touch Helen

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