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Nerve Damage - Bilateral Lumbar Plexopathy

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Nicolamags
Nerve Damage - Bilateral Lumbar Plexopathy

Hi all

I finished treatment almost 3.5 years ago and have been all clear since then which I am so grateful for. However I've had a number of issues with my legs with deteriorating muscle weakness and tingling and loss of sensation. This week I finally met with a neurologist who is 90% convinced I have bilateral lumbar plexopathy. Basically the radiotherapy has caused damage to the nerves in my pelvis which is damaging the rest of legs. I have been referred for a nerve conduction study but that may take a while. An MRI has ruled out anything more ominous. 

Currently I am still mobile although I use a walking stick. I really struggle with stairs (or should I say actively avoid them if I can). They cant really tell me whether it's likely to get worse. Really trying to stay positive that this is as bad as it will get. I'm so grateful the cancer is gone but obviously this is life changing as well. 

I was wondering if anyone else has been diagnosed with the same? 

Stage 2b Pelvic lymph node positive11 lymph nodes removed5 x chemo23 x radiotherapy3 x brachytherapy

Diagnosed October 2015All clear from April 2016

Boundie
Boundie's picture

Hi Nicolamags,

I haven't been diagnosed however have been having similar symptoms and I am 3 years out of treatment. I have an appointment this week and then hopefully a scan to investigate.

I appreciate this post as I plan on mentioning this to my doctor. 

I hope you find the support you need and I'll let you know what I find out ❤

September 2015 diagnosed stage 4 with lymph node involvement

6 rounds of carboplatin, taxol, avastin

30 external radiation combined with weekly cistplatin and 5 brachytherapy

All treatment completed July 2016 

October 2016 pet scan and mri: All clear!

March 2017 pet scan: NED

June 2017: still NED

October 2017 MRI/CT NED

February 2018: still NED

PET/MRI April 2018 still NED

May 2018 stent placement for swollen kidney and dilated ureter

August 2018 PET scan still NED

February 2019 Ureter reconstruction surgery and scans show NED

August 2019 CT scan NED

Nicolamags

I was told so many times by the oncology team that my symptoms were not a common side effect amd they had me do worried ut was completely unrelated however I definitely feel its more common than they think and unfortunately it took a lot of pushing on my behalf to finally get the referrals I needed to neurology. 

Thanks Boundie I hope you get closer to a diagnosis too. 

 

Take care xx

Stage 2b Pelvic lymph node positive11 lymph nodes removed5 x chemo23 x radiotherapy3 x brachytherapy

Diagnosed October 2015All clear from April 2016

Medway555

Hi Nicolamags, I had similar ymptoms.  I had chemo, Radiotherapy and three sessions of Brachytherapy.  Two days after the first Brachytherapy i had pains in my back and legs which felt like sciatica.  The pain in the legs only lasted one night but the back pain stayed.  I finished treatment in mid October.  At the end December / first week January I started having problems walking and the pain in my legs was unbearable.  I saw a Neurologist who did an MRI scan and said that there was nothing wrong with my spine, that the nerves were damaged in the legs and that it is drop foot, that it won't get better but will get worse and when I commented that at this rate I'll end up in a wheelchair he didn't disagree.  I got a second opinion and was told the same thing but he did send me for a Nerve Conduction tests and the damage was caused by the radiation to the pelvis, that it can take up to two years to recover.  I had four sessions of physiotherapy and I do my exercises every day.  Over the past few months the muscles in my legs started to improve, I stopped falling over and don't need to hold onto others for support.  My speed of walking is increasing but I can't walk long distances and use Special Assistance at airports.  I didn't have to wait very long on the NHS to have the Nerve Conduction Studies done.  I wish you a very speedy recovery and a very bright future.

 

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