Radiation Late Effect Plexopathy

alicearc2

wetz5526 said:

Physiatrist
Has anyone gone to a Physiatrist for problems due to late effects of radiation and if so, did it help? My Dr. is referring me to one to see if it might help with all the effects I am having. I was diagnosed with lumbar sacral radiation plexopathy over 2 years ago and my symptoms just continue to get worse. My symptoms are constant twitching, buzzing, aching/pain, weakness, fatigue from my hip area all the way down to the tips of my toes. (I had colon cancer 25 years ago at the age of 31).It just never goes away. I have seen a Neurologist who put me on gabapentin but I don't think that helps much if any. The hardest time is at night - I can't get my legs to calm down. Very frustrating these side effects but also very lucky and happy to be here. Thanks, Barb

symptoms at night

I have found that requip works to quiet the twitching and enable sleep.

beadnsue

plexopathy

Wow   I am surprised to find others with this diagnosis. After uterine cancer (sarcoma) and 25 external radiation treatments (in 2002)  I was diagnosed with radiation induced lumbosacral plexopathy in 2006.  It has progressed some, but i work very hard to stay active. I am afraid it will get worse.  My feet have flattened due to atrophy, my legs jump, there are numb spots all over my legs.  

I walk 3 miles daily to keep my tendons working where muscles have 'died'    Lately there has been a lot of pain in one of my feet where the muscles just don't exist any more.I have begun to ice it. 

The Dr I just started seeing is the first ever to pay attention to the symptoms. Usually I get 'well, you're lucky you don't have tumor, and if that is all that is left from your cancer, that's livable'  

Physical Therapy helped a lot when I was diagnosed as I was beginning to show foot drop.  There is no strength in my toes, I have issues climbing hills, having to lift my left leg with my upper leg muscles. I can't keep shoes on that don't have a back. 

My new Dr prescribed lyrica and it is helping with the leg pain and 'restless leg'  type symptoms.  I also take a pain medication.  Sometimes ambien so I can sleep through the leg jumpiness and pain. 

The worst is riding in the car or on a plane, but I just don't want to give in. 

Has anyone tried a brace for their foot?  

 

 

wetz5526

beadnsue said:

plexopathy

Wow   I am surprised to find others with this diagnosis. After uterine cancer (sarcoma) and 25 external radiation treatments (in 2002)  I was diagnosed with radiation induced lumbosacral plexopathy in 2006.  It has progressed some, but i work very hard to stay active. I am afraid it will get worse.  My feet have flattened due to atrophy, my legs jump, there are numb spots all over my legs.  

I walk 3 miles daily to keep my tendons working where muscles have 'died'    Lately there has been a lot of pain in one of my feet where the muscles just don't exist any more.I have begun to ice it. 

The Dr I just started seeing is the first ever to pay attention to the symptoms. Usually I get 'well, you're lucky you don't have tumor, and if that is all that is left from your cancer, that's livable'  

Physical Therapy helped a lot when I was diagnosed as I was beginning to show foot drop.  There is no strength in my toes, I have issues climbing hills, having to lift my left leg with my upper leg muscles. I can't keep shoes on that don't have a back. 

My new Dr prescribed lyrica and it is helping with the leg pain and 'restless leg'  type symptoms.  I also take a pain medication.  Sometimes ambien so I can sleep through the leg jumpiness and pain. 

The worst is riding in the car or on a plane, but I just don't want to give in. 

Has anyone tried a brace for their foot?  

 

 

WOW, I too have all the same

WOW, I too have all the same symptoms you mention. At the age of 31 I was diagnosed with colon cancer (I am now 57), followed with external radiations. I've always had some symptoms but was very tolerable up to about 10 years ago and boy did they hit all at once. I have a part time desk job and it's even hard to sit for very long, it sometimes feels like I'm sitting on a nerve. I have to get up a lot and move my legs. My legs ache/hurt all the time as well as the twitching numbness etc. It feels like the muscles and tendons in my legs are dying or hardening - It just never goes away. I tried Lyrica but the side effect were awful. I take gabapentin and the side effects aren't as bad. I too take a pain medication (mainly at night). It is so hard to sit and relax in the evening too because the legs start jumping and aching worse. There are many nights I wake up during the night with painful legs and pretty much wake up every morning with them hurting. I too try and walk everyday but can only make it 1 to 2 miles (I used to walk 3-4 miles) and of course when I'm done, the legs are really twitching/aching and I too find that if I don't  force myselft to walk, then one day I won't be able to. It's so frustrating. I find stretching and taking a hot bath every night feels good. I also saw an acupunturist and while I felt it did help a little, it was only for a day or too. Yes, I too am very thankful to be here, BUT it would be nice if there was more research done on late effects and treatment for it. Good luck to you.  Barb

Auzzie123

gail03 said:

support group
hi zizzi ..hope you are still out there...I live in Australia and there are no support groups here...doctors don't even seem to know much about it...I had cervical cancer 9 years ago....Iam 57 year old and have been having a lot of pain lately...no-oe seems to want to hear about it...am having another mri next month and am terrified the cancer is back...my leg is numb and tingling and the pain is in my right buttock, hip and knee...it never goes away..the neuroligist diagnosed radiation plexopathy and says the mri is just to confirm but I am not convinced..I have not been given any medication and my walking is getting worse...I am very grateful to be alive but had no idea this could happen...and yes ..it i a very lonely road....I will e-mail you if you reply to this...thanks..

I live in Sydney Australia

Hi Gail I live in Sydney Australia and was diagnosed with Lumbar Plexopathy two weeks ago... I found this forum after much searching and if you would like to email that would be great to have contact with someone else in Australia. My email is helenbrd@bigpond.net.au there seems to be so little information available.. Will do a post and see if anyone else responds .. Hope to hear from you ... 

Auzzie123

New diagnosis.. Lumbar Plexopathy...

Hi All I live in Sydney and two weeks ago was diagnosed with Lumbar Plexopathy... So little info seems to be available but I did find this forum thank goodness as I feel the real info comes from the patients not the doctors!, I had Uterine cancer treated 12 years ago which included 28 rounds of radiation... I have Lymphedema in my left leg which started straight after treatment.. How ever I was never told about other side effects.. About two years ago I started to notice pins and needles in my feet this progressed to some numbness.. However I thought it was caused by the Lymphedema.. March 2013 I had surgery to transfer lymph nodes from my neck to knee to help the Lymphedema in my leg.. I found my recovery very slow and the leg was a problem.. I now had pins and needles and numbness in both feet and weakness in my Lymphedema leg.. Climbing stairs, up slopes very difficult in fact I has slowed to a very very slow pace.. From being very fit everything was difficult.. I knew something was wrong that this was nothing to do with surgery or Lymphedema so I got a referral to a neurologist... Two hours later he told me he believed I had Lumbar Plexopathy!!! I still have to have an MRI, neurological study, blood tests etc to eliminate other issues.. I am due to see him again on 12th ;February... I gather there is no treatment and that the nerves continue to degenerate.. Has anyone found anything that helPs. ?? At this time I am walking and doing some gentle exercises to retain strength.. Have no idea what else to do other than to look after my health as best I can...look forward to hearing your comments... 

Auzzie123

gail03 said:

I still find it difficult to
I still find it difficult to accept that they can't do something for it...also I didn't have the slightest idea of what it was or what was wrong with me until I found this site...I was even sent to a psychologist who thought it was all in my head...ridiculous in this day and age..

In our heads

I have to say that to get a diagnosis is in many ways a relief as I now know what is happening... It just seemed crazy to find ones self walking slower and slower, not being able to run or even hurry across a road.. Thought maybe I was getting old and crazy!!! I too Gail have a plan for myself to follow as not holding my breath that there will be a rehab program for this !!!

Tesseb

Auzzie123 said:

New diagnosis.. Lumbar Plexopathy...

Hi All I live in Sydney and two weeks ago was diagnosed with Lumbar Plexopathy... So little info seems to be available but I did find this forum thank goodness as I feel the real info comes from the patients not the doctors!, I had Uterine cancer treated 12 years ago which included 28 rounds of radiation... I have Lymphedema in my left leg which started straight after treatment.. How ever I was never told about other side effects.. About two years ago I started to notice pins and needles in my feet this progressed to some numbness.. However I thought it was caused by the Lymphedema.. March 2013 I had surgery to transfer lymph nodes from my neck to knee to help the Lymphedema in my leg.. I found my recovery very slow and the leg was a problem.. I now had pins and needles and numbness in both feet and weakness in my Lymphedema leg.. Climbing stairs, up slopes very difficult in fact I has slowed to a very very slow pace.. From being very fit everything was difficult.. I knew something was wrong that this was nothing to do with surgery or Lymphedema so I got a referral to a neurologist... Two hours later he told me he believed I had Lumbar Plexopathy!!! I still have to have an MRI, neurological study, blood tests etc to eliminate other issues.. I am due to see him again on 12th ;February... I gather there is no treatment and that the nerves continue to degenerate.. Has anyone found anything that helPs. ?? At this time I am walking and doing some gentle exercises to retain strength.. Have no idea what else to do other than to look after my health as best I can...look forward to hearing your comments... 

RADIATION INDUCED PLEXOPATHY

Hi.  I live in South Africa and have recently been diagnosed with post radiation plexopathy after undergoing a back operation, to no avail!  26 years ago I had a total hysterectomy followed by 25 radiation treatments due to uterine cancer and for the last 7/8 years have been struggling with loss of muscle strength and parasthesia in my left leg which was thought to be due to a pinched nerve, hence the decompression.  I now have to use a crutch when leaving home as walking any distance is almost impossible as my right leg is beginning to show the same signs..  I have no definite pain but do struggle at night with cramps, stabbing pains and pins and needles and most nights have to take a sleeping pill.  I am saddened to hear that there is no help for this condition but am enquiring if anyone else had heard of stem cell therapy and if this is advisable and/or helpful.  From an active gym-goer and avid walker to being almost house-bound, I would consider any treatment if there is the lightest chance of it helping.  Await some comments

colleen777

Tesseb said:

RADIATION INDUCED PLEXOPATHY

Hi.  I live in South Africa and have recently been diagnosed with post radiation plexopathy after undergoing a back operation, to no avail!  26 years ago I had a total hysterectomy followed by 25 radiation treatments due to uterine cancer and for the last 7/8 years have been struggling with loss of muscle strength and parasthesia in my left leg which was thought to be due to a pinched nerve, hence the decompression.  I now have to use a crutch when leaving home as walking any distance is almost impossible as my right leg is beginning to show the same signs..  I have no definite pain but do struggle at night with cramps, stabbing pains and pins and needles and most nights have to take a sleeping pill.  I am saddened to hear that there is no help for this condition but am enquiring if anyone else had heard of stem cell therapy and if this is advisable and/or helpful.  From an active gym-goer and avid walker to being almost house-bound, I would consider any treatment if there is the lightest chance of it helping.  Await some comments

My solution to ls plexopathy

Hi Tesseb,

I too have radiation induced plexopathy.  It is so hard to hear the words "no treatment" for this disorder.  I am an RN and kept searching doctor after doctor.  18 months ago after having all the typical symptoms , I searched out one more option.  They too indicated no treatment no cure.  We found a study regarding the use of coumadin in these patients.  It was only a study of 11 patients.  They saw an improvement in low dose coumadin over 6 months.  In September of 2012 I decided to give it a try.  Wow! What a difference.  I have been on it since.  My walk is stronger, longer and my numbness and tingling almost gone.  I can wear heels instead of flats now:)  I still have much eifficulty with stairs up and down, but I have improved significantly!  I used to not be able to step up or down curbs.  Now I can step down them and up smaller curbs.  I will be happy to speak with anyone about this treatment.  Yes, I said treatment.  There is a treatment!!!!   email me at confection7@gmail.com  please write treatment in the subject box so I don't delete you.  

Kind regards, Colleen

Houston TX

colleen777

Alan_Chantler said:

Radiation Induced Lumbosacral Plexopathy

Hi everyone

I was diagnosed with testicular cancer in 1982 and, following surgical removal of the offending article, I was given very high dose radiation (35 Gray). Fast forward to 2005 and I was having problems walking with loss of proprioception of the feet along with pain in the hip. After a lot of misleading sessions with GP and consultant ortopaedic surgeon an MRI scan revealed a very large tumour growing out of my lumbar spine. This was removed and all was well for about a year. Then the loss of proprioception began again, together with foot drop and difficulty walking. Further MRI scans reveald a canal stenosis at L2/L3 so I was operated on for decompression. This was repeated a year later with further decompression. Later nerve conductance tests showed almost total loss of nerve function in the legs and feet.

This week I have at last met a Neurologist. He has told me that my presentation and symptoms are typical of Radiation Induced Lumbosacral Plexopathy. He also thinks that nothing will give me back my loss of mobility or ability to stand again.

Does anyone out there have any experience of recovery from a state such as mine?

I too have radiation induced

I too have radiation induced plexopathy.  It is so hard to hear the words "no treatment" for this disorder.  I am an RN and kept searching doctor after doctor.  18 months ago after having all the typical symptoms , I searched out one more option.  They too indicated no treatment no cure.  We found a study regarding the use of coumadin in these patients.  It was only a study of 11 patients.  They saw an improvement in low dose coumadin over 6 months.  In September of 2012 I decided to give it a try.  Wow! What a difference.  I have been on it since.  My walk is stronger, longer and my numbness and tingling almost gone.  I can wear heels instead of flats now:)  I still have much eifficulty with stairs up and down, but I have improved significantly!  I used to not be able to step up or down curbs.  Now I can step down them and up smaller curbs.  I will be happy to speak with anyone about this treatment.  Yes, I said treatment.  There is a treatment!!!!   email me at confection7@gmail.com  please write treatment in the subject box so I don't delete you.  

Kind regards, Colleen

Houston TX

Auzzie123

colleen777 said:

My solution to ls plexopathy

Hi Tesseb,

I too have radiation induced plexopathy.  It is so hard to hear the words "no treatment" for this disorder.  I am an RN and kept searching doctor after doctor.  18 months ago after having all the typical symptoms , I searched out one more option.  They too indicated no treatment no cure.  We found a study regarding the use of coumadin in these patients.  It was only a study of 11 patients.  They saw an improvement in low dose coumadin over 6 months.  In September of 2012 I decided to give it a try.  Wow! What a difference.  I have been on it since.  My walk is stronger, longer and my numbness and tingling almost gone.  I can wear heels instead of flats now:)  I still have much eifficulty with stairs up and down, but I have improved significantly!  I used to not be able to step up or down curbs.  Now I can step down them and up smaller curbs.  I will be happy to speak with anyone about this treatment.  Yes, I said treatment.  There is a treatment!!!!   email me at confection7@gmail.com  please write treatment in the subject box so I don't delete you.  

Kind regards, Colleen

Houston TX

Thanks Colleen for sending me

Thanks Colleen for sending me this treatment... Going to take it to my neurologist to get a script... In the mean time I am trying low does Asprin and lowering my intake of leafy green vegetables and drinking lots of water all to help thin the blood??? Only been doing it for a few days... Since last I posted have had a million test as they thought maybe my problems were autoimmune but it is looking more and more like lumbar plexopathy... I now use a walking stick and I walk with great difficulty... Infact everything is difficult... I go to rehabilitation twice a week i love the hydro pool as it gives me freedon of movement i do not have on land.. Just working to keep muscles strong etc... This is such a terrible side effect of cancer treatment yet there isso little i formation and certainly no support or help... Has anyone else tried the coumadin??? If so how is it going ??? 

Auzzie123

Auzzie123 said:

Thanks Colleen for sending me

Thanks Colleen for sending me this treatment... Going to take it to my neurologist to get a script... In the mean time I am trying low does Asprin and lowering my intake of leafy green vegetables and drinking lots of water all to help thin the blood??? Only been doing it for a few days... Since last I posted have had a million test as they thought maybe my problems were autoimmune but it is looking more and more like lumbar plexopathy... I now use a walking stick and I walk with great difficulty... Infact everything is difficult... I go to rehabilitation twice a week i love the hydro pool as it gives me freedon of movement i do not have on land.. Just working to keep muscles strong etc... This is such a terrible side effect of cancer treatment yet there isso little i formation and certainly no support or help... Has anyone else tried the coumadin??? If so how is it going ??? 

My new blog about radiation induced lumbar plexopathy

If anyone finds this forum or returns ro this site I would like to let you know I have started a blog about my Journey with Radiation induced lumbar plexopathy https://lifeinawheelchairblog.wordpress.com i would love to hear from anyine who is living with this as we are so rare in the world and would be great if we could have some communication as it is a lonely disease... Since my previous posts I am now paralysed and use a wheelchair.. It came about gradually but febripuary 2015 I reached the stage of paralasis... I am under the care of my original radiation oncologist but there is no treatment... ... Please connect via my blog I would love to hear from you .. Helen 

Auzzie123

Auzzie123 said:

My new blog about radiation induced lumbar plexopathy

If anyone finds this forum or returns ro this site I would like to let you know I have started a blog about my Journey with Radiation induced lumbar plexopathy https://lifeinawheelchairblog.wordpress.com i would love to hear from anyine who is living with this as we are so rare in the world and would be great if we could have some communication as it is a lonely disease... Since my previous posts I am now paralysed and use a wheelchair.. It came about gradually but febripuary 2015 I reached the stage of paralasis... I am under the care of my original radiation oncologist but there is no treatment... ... Please connect via my blog I would love to hear from you .. Helen 

Facebook group

I have now started a facebook group for all those suffering from Radiation Induced lumbar plexopathy

https://lifeinawheelchairblog.wordpress.com/2016/02/01/facebook-group-for-rilp/ please find the link on this post in my blog... I hope that at some stage people may find this page again as I do wonder how everyone is doing .. 

Auzzie123

FB group for RILP

In case any one comes back to this thread the FB group for Radiation induced lumbar plexopathy Is going well Come and join us https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/ it is a closed group so only members can see what is written ...