Attn Sqad, Lumbosacral plexopathy

[jamesnan]

Once again Sqad I would like to pick your brain, my niece has been diagnosed with Radiation-induced Lumbosacral Plexopathy; she was treated with radio and chemotherapy last year for cervical cancer, and now has problems .She has no feeling up to her knees in both legs and is finding it very difficult to stand without falling over. Following this diagnosis the family were trying to understand what it means, and wondered if you had any experience of anyone living with it and what it entails. I believe physiotherapy is being mentioned as the only solution at the moment.
Since she is only 31 years old, and has 3 children, she is devastated at what it means and how her life will alter. What is the long term outlook? Many thanks.

[NazNomad]

A few treatments that help to improve it ... http://emedicine.meds...icle/316604-treatment

[Sqad]

jamesnan.....This is indeed an unfortunate complication of DXT and I am not sure how I can help as my experience of the disorder is limited.

You haven´t mentioned pain which is often a major complication so that, if you will, is a plus.

The term means that the DXT has not only played it´s part in controlling the cancer,but has also damaged the nerves as they stream out of the spinal cord on their journey to the muscles of the legs. Physiotherapy seems to be the only method of treatment here and she needs to get started as soon as possible. I have never seen any studies showing long term results with any treatment.
Sorry to be so negative here but I am struggling to give any hope or relevant advice.

Woolfgang is an ABer and also a Occupational Therapist and she might have more practical ideas.

Also, NazNomad has given you a link to read about the condition,but like all website links seem to be confusing, all embracing, impersonal and daunting.

[woofgang]

Thanks sqad for pointing me here. The actual problem is not one I have experience of but while your daughter is getting the answers she needs there may be things that can happen to make her life easier. has she still got good movement and strength in her legs? If she has then she can retrain to walk visually doing without the feedback that the nerves would give you and I, somewhat like an amputee would, The right walking aid will help immeasurably and the physio should be able to prescribe this. She should be getting assessment and treatment NOW, make a fuss if she isn't.
The other option is to become a whole or part time wheelchair user if walking is not going to be possible or functionally useful. The wheelchair should come from the NHS and there are grants available to adapt the house and car so that she can continue to be independent and these usually come from the local council via the occupational therapy service there. Check that she is getting all the benefits and help that she is entitled to, I believe that MacMillan are helpful for this, if she isn't already in touch with them, you can just phone for advice.
I can only imagine the pain and stress that you and she are going through.

http://www.macmillan....elp/HowWeCanHelp.aspx

if i can help further please post again fao woofgang in health or on this thread.

[jamesnan]

Many thanks for your most helpful answers, will read thoroughly and pass on the information.

[woofgang]

Have just read Naz link. it says the same as sqad and I only in medical speak.