Radiation Induced Lumbar Plexopathy after Pelvic radiation..

Auzzie123

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/

 

molimoli

Thank you Helen.What a price to pay!!!

God on high hear our cry and send new treatment so the guinea pigging will end.

I wish you much improvement with your legs. So sorry.You paid the price and we get to learn.

Will we remember what we have learnt when fear of Cancer and desperation makes it certain visit ? that's the question.

I'll remember. I won't forget to remember the devastation I have seen from radiation,never will.Nuff said.

Moli , wishing you renewed health and giving thanks for your reprieve from Cancer.Nuff Love.

EZLiving66

Thank you for sharing your

Thank you for sharing your story, Helen.  I believe, as Moli said, we are the guinea pigs.  So many of the side effects have been kept from us and only through social media and the internet are we finding out some of the horrors that could await us years down the road.  

There are times, the "cure" outweighs the side effects but in many cases the disease returns along with the long-term side effects.  

I'm hoping for the best for you, Helen.  

Love,

Eldri

Unknown

Thank you for the information

I haven't finished chemo yet, and I don't know if radiation is my doctors next recommended course.  My husband lived for 10 years with TM which paralyzed him from T4-T5 down.  Knowing what he went through (although he never let it get him down), I choose NOT to live my life like that.  Knowing what you wrote, and also what others have written and endured, I will not willingly choose radiation "just because it's the standard treatment".  My doctor will need to show me an active spot to radiate, not just aim in the general area where I originally had cancer which was completely removed.  Even with that, I believe I will end my life, or let cancer decide to take it from me.  I cannot live my life with severe side effects!  You are an incredibly brave person and bless you.  Hugs Nancy.

Auzzie123

Thank you

Thank you you all for your lovely comments and I am sorry to be the bearer of bad news.. We must remember that this is very very rare but I think that drs need to tell us so we can make our choices.. we also need to know so that if we start to get symptoms of any late stage effects we can look for treatment. Hospitals need to have clinics for survivors who are suffering these side effects instead of leaving us in the wilderness. In australia we do not have such things so finding support has been the hardest thing ... 

Northwoodsgirl

Lumbar plexopathy

My heart goes out to you so much....thank you for writing such a helpful description of your late side effects. We will all look back at our treatments and they will seem so barbaric as medicine progresses. I would have loved to have had drugs that were personalized and based on enhancing my own immune system rather than getting systemic heavy metals infused through out my body. But at the point in time that I fought the beast radiation was treatment with best evidence. Long term outcomes may be lacking for some treatments. When I had my hysterectomy , my hospital roommate was a 10 year survivor and she developed a fistula (hole) in her small or large intestine that was a late stage effect of her radiation. Some hospitals have had radiation machines that were delivering more radiation than prescribed. They weren't calibrated right or were delivering more rads than programmed. Please keep posting about your therapies...God bless you and keep you...(hugs)

Soup52

Radiation lumbar

i had no idea this could be a side effect. I am so sorry! Well I've already had all the radiation and will soon move on to chemo. I am thankful for all of your information.

Lisa 00

alternative treatments

Helen,

Have you considered looking into any alternative treatment modalities?  Reiki or any Eastern medicine methods? 

Lisa

Auzzie123

Lisa 00 said:

alternative treatments

Helen,

Have you considered looking into any alternative treatment modalities?  Reiki or any Eastern medicine methods? 

Lisa

Alternative therapies..

hi Lisa. Yes I have tried everything possible.. Last year I went to a functional medicine Dr and used all sorts of supplements oral and IV ..i had all mercury removed from my teeth as that can be a problem plus all sorts of other things.. I did intensive physio but nothing helped I just gradually got worse.. I do not beleive that everyone ends up paralysed but stay at a level where walking is difficult.. I am in touch with a few others and we all have different levels of damage and between us all we have tried every therapy!! My next thing is to try a mix of medications from a dr in France that thins the blood and softens the fibrosis in the hope that a blood supple could return to the damaged nerves ... I will see if it helps ... she is Dr Sylvis Delanium and seems to be the only Dr world wide who is trying to find a cure.. 

Auzzie123

An article from Dr Stubblefield

Late stage side effects of Radiation treatment ..

http://www.cancerforward.org/survivor-resources/experts-speak/Michael-D-Stubblefield-MD/radiation-fibrosis-syndrome-what-it-is-and-how-to-treat-it

Dr Stubblefield specialises in this area 

Helen

Auzzie123

FB group RILP

Facebook group for Radiation Induced Lumbar Plexopathy is growing ... It is a closed group so private... Only members can see what us written.. If you have Radiation Induced Lumbar Plexopathy come and join as. This is such a rare complication is is not often you get a chance to connect with others https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/ see you there!!