About

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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 be paralysed!!  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 spinal cord through the pelvis and send messages from the brain to the legs. Radiation causes these nerves and tiny blood vessels to be damaged and  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. February 27th 2015 my legs just stopped working totally…. I was paralysed, they will not get worse but they will never get better, so began my Life in a Wheelchair living with a spinal injury. 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 may also help someone else who has this rare diagnosis….. Radiation Induced Lumbar Plexopathy.. A late stage side effect of cancer treatment.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog. https://lifeinawheelchairblog.wordpress.com
Thanks

8 thoughts on “About

  1. hi Helen,

    Wow at last my google alerts have come up with something useful! I was astonished and so pleased to read your blog – I could have written it myself it is so similar to my own experience.

    I had great difficulty getting my RILP diagnosis after years of thinking I was just lazy or had Fatigue Syndrome but I was still extremely shocked. When I had my radiotherapy 19 years ago, I was only warned about the possible bowel effects. Still today none of the organisations I am in contact with that deal with cancer survivorship give it any mention.

    Briefly, from a slight limp 5 years ago, I am now using 2 sticks, but with great difficulty. I was hoping that crutches would help, but they don’t seem to. Every day, I think what the heck do I do next? Not in touch with anyone in the health professions anymore as they are clueless – just getting on with it as best I can myself.

    Wishing you well and keep up the great blogging!

    Kathy (UK)

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    1. Hi Kathy.. So glad that my blog has connected with you.. This is such a lonely and rare problem and we have no one to turn to or share with … As you say even the doctors do not understand .. My neurologist I felt really gave up on me .. Sadly they have no interest in following up on our situation. I reconnected with my radiation oncologist and he has been as supportive as he can be.. He had seen women with Brachial Plexopathy from Breast cancer treatment but not pelvic.. He said they had changed the way they do the BC radiation now to try to avoid this happening.. The only other place I have connected with others is on the American Cancer society forum http://csn.cancer.org/node/149745 problem is people do not go back on to see follow up but I have emailed with three other ladies and must follow up with them again to see how they are. I am happy if you would like to email me as that is more private helenbrd@bigpond.net.au I would really like to build more awareness of this health issue as I feel it just gets a lid put on it .. I feel that all patients side effects should be reported back to the radiation oncologists so that they can see the devastating problems they are causing and maybe they can work at avoiding this.. The response is that they have never seen it but if they are not told they just think we get on with our lives and are a success story… Cancer treatment is improving all the time so I feel there will be more people suffering from RILP…
      I am sorry to hear you are struggling with two walking sticks.. I found crutches were not helpful at all. The only other thing is to try a walker i found this helped when things got really bad .. I hope that I hear from you and I will certainly continue this blog plus push to write about it on other cancer blogs..
      Take care Helen … Australia

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  2. Thank you for sharing your story. I recently started using a rollator due to lymphedema in my legs. I developed lymphedema after a stress fracture of my femur and blood clots. Unfortunately node transfer is not an option for me.

    I also had a low malignancy potential tumor on my right ovary at twenty-eight. The cure was having the ovary removed. I developed a cyst on the left a year later and that was removed as well.

    I wish you well on your journey!

    Liked by 1 person

    1. It sounds like you have had to adapt too. Lymphoedema in a wheelchair is not the best combination but the important thing is to get movement somehow… Do you self propel your wheelchair or is it motorised? Take care Helen ..

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  3. Hi Helen

    After much research, finally found your website for a connection to this condition that the medical profession knows so little about. I was recently diagnosed with Radiation Induced Spinal Plexopathy by my fourth neurologist…yes, fourth! The first two could not diagnose me. The second one is actually a neuroscientist at a large medical center and referred me to a neurologist specializing in nerves and muscles. He felt it was possible “nerve cell damage to the spinal cord from radiation”. My oncologist was not happy with that diagnosis and sent me to the fourth neuro who is a neurological oncologist and he made the positive diagnosis of RISP. I’ve had many, many CT scans, MRI scans, x-rays, and three EMG tests over the last two years. Hard to believe, but I was doing three aerobic classes a week less than 3 years ago. In that time, I have gone from one cane to two canes, to a rollator, to Canadian (forearm) crutches, and now, as of last March, 2017 into a wheelchair. My progression has been fairly rapid; I can no longer stand without support, and only for a very short time because of the weakness of my legs. I am not mobile without the wheelchair.

    In late 1992, I was diagnosed with 4th stage Non-Hodgkin’s Lymphoma (a very late diagnosis because I had been misdiagnosed by the primary care physician I had at the time). I began chemotherapy the end of December of that year requiring an additional 50% more chemo than the standard protocol. Chemo ended In Sept. of 1993, and I began radiation treatments for two months until the radiologist said the radiation was affecting my liver and needed to be stopped. Four and one-half years later I relapsed, again with 4th stage NHL, and began chemotherapy again, ending with monoclonal antibody treatments. I did not have additional radiation since it was felt I had the maximum that I could have. I have been in remission since; not cured, but it has been a good remission and I am grateful.

    I know no one with this late stage side effect condition; doctors are not helpful at all. My primary care doctor said that while he had heard of this, he has never seen it. My current neurologist wants me to go into
    in-patient rehab, but I am hesitating because in my research I read where physical therapy and/or rehab must only be done by someone familiar with this particular condition, or they can cause additional permanent damage. I was most interested to see, Helen, that when you had inpatient rehab, you walked in with a walker, and came out paralyzed in a wheelchair. That is my concern; not that I would end up in a wheelchair since I am already at that point, but that instead of being an “incomplete paraplegic”, I will come out with increased paralysis.

    Bless you, Helen, for doing this blog and giving us a voice. It is a lonely road.

    Evelyn…. USA, New Jersey

    Liked by 1 person

    1. So glad that you found my blog it is a very isolating condition.. look forward to having you as part if our FB group.. we are now over 60 people world wide…we all have very similar stories though not many have reached the WC level of paralysis… please ask to join the FB group again as your original request has gone and I need that to join you up … most of my time in rehab was spent on building my upper body and learning to use a WC.. attemps to try and walk were hopeless and I was just struggling to stand … so now I do my best and learn new skills .. so glad that FB allows us all to connect..

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