Radiation Induced Lumbar Plexopathy after Pelvic radiation..

Radiation induced lumbar plexopathy is a late stage side effect of radiation to the pelvis for Uterine and other pelvic cancers...  The early symptoms are weakness in the legs, difficulty getting up steps, drop foot, tripping over and peripheral neuropathy, some people have pain others not.. these symptoms gradually get worse.. People can plateau at different stages.. Sadly my legs are now paralysed.. I was never told of this side effect..this is my story

In 2001 I was diagnosed with Uterine cancer. Treatment was a Radical Hysterectomy followed by 28 radiation sessions. Immediatly after treatment my left leg began to swell with Lymphoedema, which can be a side effect of the nodes being removed during surgery and the follow up radiation. I have written a previous blog about this called My Lymph Node Transplant which tells you all about Lymphoedema and the surgical treatment I chose to have. https://lymphnodetransplant.wordpress.com/about-me/

Since my original surgery my cancer has not returned and over the years the Lymphoedema has improved, especially since the Lymph Node Transfer. However in 2010 I started to notice some pins and needles or Periphery Neuropathy in my feet. http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/definition/con-20019948 I put this down to the Lymphoedema and maybe the compression stockings. By 2012 this had got a little worse but tests at the doctors showed nothing untoward was happening. In 2013 I started to notice that it was difficult to go up steps and I had quite a few falls due to tripping. At the end of 2013 I had my first appointment with a neurologist and so began a merry go round of tests and doctors for the next year. I was seen my an immunologist as well as the neurologist, I also went to a functional medicine doctor, I had all my mercury fillings taken out, had vitamins, change of diet, CT scans, MRIs, a biopsy, many many blood tests and various neurological conduction tests etc etc. However through all of this my legs became weaker and weaker. First I used one walking stick and then two, it was a real struggle. My legs were feeling like they did not belong to me anymore.

Eventually my Neurologist diagnosed me with Radiation Induced Lumbar Plexopathy. He told me that there was no treatment and that it would probably get worse!!!  It is a very rare complication of radiation treatment to my pelvis. It can appear from 1-36 years after treatment. It only occures to  0.16% in 1000 patients. Basically the Lumbar Plexus is a group of nerves that go from the spine through the pelvis and send messages from the brain to the legs. Radiation causes these nerves and tiny blood vessels to be damaged and over time they stop working. Women who have had Breast Cancer treatment can get damage to the Bracheal Plexus, their arms become weak and gradually paralysed.

These are links to Lumbar Plexopathy and Brachial Plexopathy

http://www.isno.nl/neuromuscular_info/disorders_and_diagnostics/disorders/items/lumbosacral_plexus_neuropathies/default.aspx

https://www.nlm.nih.gov/medlineplus/ency/article/001418.htm

Just before Christmas 2014 I entered a rehabilitation hospital for intensive neurological physiotherapy, my only hope of regaining some strength in my legs. I was there for three months. When I arrived I could just walk using a walking frame but quite quickly I lost even this ability. One day my legs just stopped working totally…. I was paralysed, so began my Life in a Wheelchair. This blog is to tell my story, how I progress, what I learn and how I adapt to my new life. It helps me to write and I hope that it my also help someone else who has this rare diagnosis….. Radiation Induced Lumbar Plexopathy.. A late stage side effect of cancer treatment.

 This is a link to my blog with more information on RILP  https://lifeinawheelchairblog.wordpress.com

I also have a closed Facebook page called Radiation Induced Lumbar Plexopathy.. If you are suffering from this disorder come and join us .. Helen 

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