Radiation Late Effect Plexopathy

I was recently diagnosed with lumbar plexopathy, a late effect of radiation treatment I had eight years ago for endometrial cancer. I am having difficulty walking. Anyone else with this problem?
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  • ekinner
    ekinner Member Posts: 1
    I know it has been months since this posting, but have you received any help for your lumbar plexopathy? My mom finished radiation for endometrial cancer seven months ago and was diagnosed with lumbar plexopathy. She is having trouble walking and is also having severe pain. Are you still having difficulty walking? How have you been treated for this? Any recommendations?
  • ekinner said:

    I know it has been months since this posting, but have you received any help for your lumbar plexopathy? My mom finished radiation for endometrial cancer seven months ago and was diagnosed with lumbar plexopathy. She is having trouble walking and is also having severe pain. Are you still having difficulty walking? How have you been treated for this? Any recommendations?

    I was told that there are no proven treatments for late effect radiation-induced plexopathy. There have been "anecdotal" reports of a few things that have helped patients (especially those like your mother who had radiation more recently): anti-platelet therapy (a baby aspirin a day), anti-coagulant therapy (Coumadin), hyperbaric oxygen therapy, and a combination of Trental and relatively high doses of Vitamin E. Because lumbosacral plexopathy is considered rare, there are no long term studies that prove that anything works for sure. There has been a long term study in breast cancer survivors with brachial plexopathy (that affects their arms) that showed that hyperbaric oxygen was not effective. Trental is used to treat neuropathic, pain, so Trental and Vitamin E might be somthing you mother could try. I am trying aspirin and Coumadin. I have not seen any improvement, but I am more than 8 years past my radiation treatment, and have only been taking it for a couple of months, and I've been told to give it a try for at least 6 months before deciding that it's not working. If it does not work, I may see if I can try Trental and Vitamin E (the must be taken together to work), even though I have no pain; only my motor nerves have been affected.

    My walking has slowly deteriorated. I use a cane for short walks, a walker for long ones (like going to the mall), although I can make very short walks (like going into a restaurant from a car) without either.

    There has been a long term study of breast cancer patients with brachial plexopathy, and patients continued to deteriorate and/or new cases appeared for 30 years after radiation. It is not very hopeful, but I am glad I am here to complain.
  • blueroses
    blueroses Member Posts: 524
    hmmm
    I read your entry with great interest because 3 years ago all of a sudden I developed a pain from hell in my lower back and have been on morphine for it ever since. I had total body radiation 18 years ago for nhl in a bone marrow transplant and localized radiation to the pelvis 2 years prior. Xrays resulted in no reason for this except for a little arthritis and lower back denerative disease which I think is pretty much the same thing. Now after seeing your post this makes more sense to me. I am going to talk this over with my GP next month. Also there is apparently a brachial plexopathy which is centered in the arm and shoulder area and I have had limited rotation there for about 2 years now, again no diagnosis. I believe these are all related to chemo/radiation, most likely radiation and is nerve neuropathy for both. Sometimes I feel like such a lab rat.
  • jsyorkies
    jsyorkies Member Posts: 6
    blueroses said:

    hmmm
    I read your entry with great interest because 3 years ago all of a sudden I developed a pain from hell in my lower back and have been on morphine for it ever since. I had total body radiation 18 years ago for nhl in a bone marrow transplant and localized radiation to the pelvis 2 years prior. Xrays resulted in no reason for this except for a little arthritis and lower back denerative disease which I think is pretty much the same thing. Now after seeing your post this makes more sense to me. I am going to talk this over with my GP next month. Also there is apparently a brachial plexopathy which is centered in the arm and shoulder area and I have had limited rotation there for about 2 years now, again no diagnosis. I believe these are all related to chemo/radiation, most likely radiation and is nerve neuropathy for both. Sometimes I feel like such a lab rat.

    Same feelings here:(
    Something made me come to this site yesterday, after having my Chemo and Radiation 17 years ago. I have so many aches and pains ~ My fingers have not worked right since my treatments and my lower back and legs and feet and hips LOL ! Geez pretty much my whole body. But I am now getting numbness in my left little finger and severe pain running down my lower back and down my hip and butt???? But every time I ask a GP they never have an answer~ So please if anyone has found something that helps let me know:) At least I know I am not nuts or a hypocondra? (SP) As my kids would say ! And Blue Rose I had the shoulder pain so bad in my right arm for about a year and ahalf just last year:( But it went away one day but it seems like it moves all over about 9 years ago I could hardly walk my feet hurt so bad and then it would go away and come back! Knock on wood that don't come back ~ Right now it is my lower back ~Hips and down my leg~ Geez Im falling apart and its been 17 years since my cancer dianosis . Hugs Shawn from Iowa
  • firstsister
    firstsister Member Posts: 13
    unknown said:

    I was told that there are no proven treatments for late effect radiation-induced plexopathy. There have been "anecdotal" reports of a few things that have helped patients (especially those like your mother who had radiation more recently): anti-platelet therapy (a baby aspirin a day), anti-coagulant therapy (Coumadin), hyperbaric oxygen therapy, and a combination of Trental and relatively high doses of Vitamin E. Because lumbosacral plexopathy is considered rare, there are no long term studies that prove that anything works for sure. There has been a long term study in breast cancer survivors with brachial plexopathy (that affects their arms) that showed that hyperbaric oxygen was not effective. Trental is used to treat neuropathic, pain, so Trental and Vitamin E might be somthing you mother could try. I am trying aspirin and Coumadin. I have not seen any improvement, but I am more than 8 years past my radiation treatment, and have only been taking it for a couple of months, and I've been told to give it a try for at least 6 months before deciding that it's not working. If it does not work, I may see if I can try Trental and Vitamin E (the must be taken together to work), even though I have no pain; only my motor nerves have been affected.

    My walking has slowly deteriorated. I use a cane for short walks, a walker for long ones (like going to the mall), although I can make very short walks (like going into a restaurant from a car) without either.

    There has been a long term study of breast cancer patients with brachial plexopathy, and patients continued to deteriorate and/or new cases appeared for 30 years after radiation. It is not very hopeful, but I am glad I am here to complain.

    post radiation plexopathy
    My brother was recently diagnosed with post radiation myokymia lumbo sacral plexopthy. He has not been able to find much help in dealing with this situation as I understand it is pretty rare. His legs have gotten progressively weaker. Have you had any physical therapy? Has your condition stabilized? Do you still use a cane and walker? Thanks for any help.
  • This comment has been removed by the Moderator
  • 26feb2010
    26feb2010 Member Posts: 1
    jsyorkies said:

    Same feelings here:(
    Something made me come to this site yesterday, after having my Chemo and Radiation 17 years ago. I have so many aches and pains ~ My fingers have not worked right since my treatments and my lower back and legs and feet and hips LOL ! Geez pretty much my whole body. But I am now getting numbness in my left little finger and severe pain running down my lower back and down my hip and butt???? But every time I ask a GP they never have an answer~ So please if anyone has found something that helps let me know:) At least I know I am not nuts or a hypocondra? (SP) As my kids would say ! And Blue Rose I had the shoulder pain so bad in my right arm for about a year and ahalf just last year:( But it went away one day but it seems like it moves all over about 9 years ago I could hardly walk my feet hurt so bad and then it would go away and come back! Knock on wood that don't come back ~ Right now it is my lower back ~Hips and down my leg~ Geez Im falling apart and its been 17 years since my cancer dianosis . Hugs Shawn from Iowa

    I guess I'm Lucky
    One morning in October 2001 I just got out of bed and my right leg refused to move. Following an MRI scan and various electric shocks to my legs and feet, the specialist diagnosed that I had Diabetic Lumbosacral Plexopathy. This was a fair diagnosis at the time, because I am diabetic, but when I was told that this would be corrected by better diet control I started to wonder because my controls and diet were perfect. (I'd only recently been told this by my diabetic consultant.)

    In 2004, when I got access to the internet, I did some research and found an entry about Radiation Induced Lumbosacral Plexopathy. All the symptoms seemed to fit, leg weakness, muscle deterioration, drop foot, but all without any pain. Occasional ache in the buttock and thigh area, but certainly no pain. But the obvious link was that I had testicular cancer in 1972 which was treated with radiation therapy, especially as this type of plexopathy occurs between 1 and 30 years after the treatment. When I took my findings to my family doctor, he agreed with my diagnosis.

    The deterioration has progressed over the 9 years since the first diagnosis. I initially had to use 1 stick to support my right leg when walking outside, but when the drop foot set in 2 years later I had to start using 2 sticks. For a while I was able to get about indoors without these walking aids by using the furniture to hold onto, but now I have to use both sticks inside the house, plus 2 rails to help me get upstairs, and have to use a wheeled walking frame and an ankle/foot orthosis outdoors.

    The only time I can do without my walking aids is in the hydrotherapy pool, where I go for an hour every week.

    Not being able to walk unaided is frustrating, but as I said before, at least I am without pain so I guess I'm one of the lucky ones. I just wish that someone would come up with something that would help us all.
  • UteGoddess
    UteGoddess Member Posts: 3
    26feb2010 said:

    I guess I'm Lucky
    One morning in October 2001 I just got out of bed and my right leg refused to move. Following an MRI scan and various electric shocks to my legs and feet, the specialist diagnosed that I had Diabetic Lumbosacral Plexopathy. This was a fair diagnosis at the time, because I am diabetic, but when I was told that this would be corrected by better diet control I started to wonder because my controls and diet were perfect. (I'd only recently been told this by my diabetic consultant.)

    In 2004, when I got access to the internet, I did some research and found an entry about Radiation Induced Lumbosacral Plexopathy. All the symptoms seemed to fit, leg weakness, muscle deterioration, drop foot, but all without any pain. Occasional ache in the buttock and thigh area, but certainly no pain. But the obvious link was that I had testicular cancer in 1972 which was treated with radiation therapy, especially as this type of plexopathy occurs between 1 and 30 years after the treatment. When I took my findings to my family doctor, he agreed with my diagnosis.

    The deterioration has progressed over the 9 years since the first diagnosis. I initially had to use 1 stick to support my right leg when walking outside, but when the drop foot set in 2 years later I had to start using 2 sticks. For a while I was able to get about indoors without these walking aids by using the furniture to hold onto, but now I have to use both sticks inside the house, plus 2 rails to help me get upstairs, and have to use a wheeled walking frame and an ankle/foot orthosis outdoors.

    The only time I can do without my walking aids is in the hydrotherapy pool, where I go for an hour every week.

    Not being able to walk unaided is frustrating, but as I said before, at least I am without pain so I guess I'm one of the lucky ones. I just wish that someone would come up with something that would help us all.

    Glad To Be Alive!
    I developed Diabetes halfway through my radiation & chemo treatments in 2002. Four years later when I started to notice leg weakness, pain and a foot drop my physicians kept telling me it was diabetic related. I knew it was different because the first time I had numbness and tingling in my feet was when I had a radioactive implant about 3 months after my treatments. Finally, after quitting sports, many falls and complete frustration, a specialist diagnosed me with plexopathy due to radiation just last year. I was glad to know what was wrong but I have progressively gotten worse. I'm now using a walker (plus furniture, walls, etc. and whoever is around to help - lol) and between stairs (what a chore), work, my oldest playing high school volleyball, basketball and now softball, my youngest involved in tumbling, dancing and singing and me being a single mother - everyday life is truely hard (wah wah...get out your violins hahaha). I wish there was some sort of treatment or cure, but my physician told me that a wheelchair will be in my future. I guess life goes on and I thank God the radiation and chemo saved my life and for my friends and family who are willing to take me places and slow down the pace for me. Being positive is so hard sometimes, but after many pity parties I've realized that I have to be strong for my girls; plus, I'm alive to watch my girls grow up and support them as much as I can. My many trips to town for and waiting in the car for class, practices, games and rehearsals are so much more than extremely worth it!
  • pjjenkins
    pjjenkins Member Posts: 173
    Hmmm - maybe this is it?
    I am a 2+ year survivor of anal cancer and have recently been experiencing pain (dull aching type) in my right hip/buttock. As I am 66 and have long had minor problems with arthritis, I assumed that I am going to follow in my mother's hip replaced footsteps. She is walking at 88 now. Then, coming back for a "check up" on this Network, I find the discussion of post radiation therapy plexopathy. You mean my symptoms might not be related to a minor knee injury/arthritis that my leg no longer wants to lift me up the stairs or hills? It might be related to radiation damage?

    I just had a bunch of diagnostic Xrays (more radiation!!!). I guess I will find out in a bit. Does it help to describe the pain and difficulty more? How the heck can one differentiate between "normal" aging problems and cancer consequences?
  • zizzi
    zizzi Member Posts: 2
    pjjenkins said:

    Hmmm - maybe this is it?
    I am a 2+ year survivor of anal cancer and have recently been experiencing pain (dull aching type) in my right hip/buttock. As I am 66 and have long had minor problems with arthritis, I assumed that I am going to follow in my mother's hip replaced footsteps. She is walking at 88 now. Then, coming back for a "check up" on this Network, I find the discussion of post radiation therapy plexopathy. You mean my symptoms might not be related to a minor knee injury/arthritis that my leg no longer wants to lift me up the stairs or hills? It might be related to radiation damage?

    I just had a bunch of diagnostic Xrays (more radiation!!!). I guess I will find out in a bit. Does it help to describe the pain and difficulty more? How the heck can one differentiate between "normal" aging problems and cancer consequences?

    Have had this plexopathy for 8 years
    I had radiation for cervical cancer in 1998 at the age of 47 and my symptoms started in 2001 with tingling in the bottom of my feet. My toes went numb, then my whole foot, then my ankles. It started on my right side first, my left side was about a year behind my right in symptoms and severity.
    I was finally diagnosed in 2004 after many doctors just scratching their heads trying to figure out what was causing it. Nothing at all was showing up in MRI's or CT scans or bone scans, except that my sacral bone had been shattered at some point in my life (?). The final diagnosis was "Radiation Induced Lumbosacral Plexopathy".
    I had 10 weeks of very expensive Hyperbaric Oxygen therapy in 2006 that did absolutely nothing.
    I had to have a bifemoral bypass in 2008 (they replaced my abdominal aorta) because the blood supply to my right leg had been cut down to 30% because of arterial damage. My kidneys shut down in October that same year because they are being squeezed shut. I have to have stents replaced every 4 months to keep the urine flowing out of my kidneys.
    I have no feelings at all in my feet, ankles, backs of my calves, partially up my thighs and buttocks and my genitals are completely numb. It is now entering my left knee.
    Sexual relations with my husband is no longer possible. I have bouts of incontinence. I was walking with a cane up until this past Christmas season when I graduated to a walker. My legs are so weak now, I am having trouble lifting my self out of the tub and off the toilet. It feels like I am walking on stilts strapped tightly to my thighs.
    The only saving grace to this relentless deterioration is I have no real pain. The muscle spasms, cramping, burning and "tight socks" feeling is tolerable.
    I hope and pray that some day they can perfect radiation treatments so that this rare effect doesn't happen to anyone anymore, ever. It seems much worse than the original disease in that it is slow and torturous, and takes away so many pleasures of living life. I'm glad to have survived the cancer I had 12 years ago, but I yearn for the woman I was then.
  • UteGoddess
    UteGoddess Member Posts: 3
    pjjenkins said:

    Hmmm - maybe this is it?
    I am a 2+ year survivor of anal cancer and have recently been experiencing pain (dull aching type) in my right hip/buttock. As I am 66 and have long had minor problems with arthritis, I assumed that I am going to follow in my mother's hip replaced footsteps. She is walking at 88 now. Then, coming back for a "check up" on this Network, I find the discussion of post radiation therapy plexopathy. You mean my symptoms might not be related to a minor knee injury/arthritis that my leg no longer wants to lift me up the stairs or hills? It might be related to radiation damage?

    I just had a bunch of diagnostic Xrays (more radiation!!!). I guess I will find out in a bit. Does it help to describe the pain and difficulty more? How the heck can one differentiate between "normal" aging problems and cancer consequences?

    I was very athletic and thought my weakness was from arthritis and damage from my 3 knee surgeries. Finally I went to a neurologist and that's when I was diagnosed with the plexopathy. I hope that this is not your case - your in my prayers.
  • getrealbar
    getrealbar Member Posts: 1
    zizzi said:

    Have had this plexopathy for 8 years
    I had radiation for cervical cancer in 1998 at the age of 47 and my symptoms started in 2001 with tingling in the bottom of my feet. My toes went numb, then my whole foot, then my ankles. It started on my right side first, my left side was about a year behind my right in symptoms and severity.
    I was finally diagnosed in 2004 after many doctors just scratching their heads trying to figure out what was causing it. Nothing at all was showing up in MRI's or CT scans or bone scans, except that my sacral bone had been shattered at some point in my life (?). The final diagnosis was "Radiation Induced Lumbosacral Plexopathy".
    I had 10 weeks of very expensive Hyperbaric Oxygen therapy in 2006 that did absolutely nothing.
    I had to have a bifemoral bypass in 2008 (they replaced my abdominal aorta) because the blood supply to my right leg had been cut down to 30% because of arterial damage. My kidneys shut down in October that same year because they are being squeezed shut. I have to have stents replaced every 4 months to keep the urine flowing out of my kidneys.
    I have no feelings at all in my feet, ankles, backs of my calves, partially up my thighs and buttocks and my genitals are completely numb. It is now entering my left knee.
    Sexual relations with my husband is no longer possible. I have bouts of incontinence. I was walking with a cane up until this past Christmas season when I graduated to a walker. My legs are so weak now, I am having trouble lifting my self out of the tub and off the toilet. It feels like I am walking on stilts strapped tightly to my thighs.
    The only saving grace to this relentless deterioration is I have no real pain. The muscle spasms, cramping, burning and "tight socks" feeling is tolerable.
    I hope and pray that some day they can perfect radiation treatments so that this rare effect doesn't happen to anyone anymore, ever. It seems much worse than the original disease in that it is slow and torturous, and takes away so many pleasures of living life. I'm glad to have survived the cancer I had 12 years ago, but I yearn for the woman I was then.

    Plexopathy after Cervical Cancer Radiation
    I also was diagnosed with cervical cancer in 1997 and after having internal and external radation therapy, started to feel numbness in my left toes in 2005. My family doctor first sent me to a podiatrist. Nope, not here. As the symptoms progressed into the foot, ankle and up the leg, I was sent to a neurologist who kept sending me back to my oncologist because he thought the tumor was back. After multiple MRI's and CTs, the oncologist sends me back to the neurologist. The MRI shows that there may be a problem with the L5 on my spine and I am sent to an orthopedic surgeon who performs back surgery and he claims that after I have physical therapy, the feeling will be back in 3-6 months. Ah, no. As things progressively get worse, I go back to the neurologist who just scratches his head. Because there is considerable swelling in my foot and ankle, he's worried about blockage. So I'm sent to a cardiologist, who ofcourse, puts me through every stress test and doppler looking for the culprit. Nope, not here. The neurologist scratches his head again and sends me on my way to a arthritis doctor. That doctor says that he doesn't doubt me when I tell him that I have a problem, he just can't find anything wrong with me. The neurologist then does a complete blood panel making sure that it isn't lupus, lime disease or heavy metal poisoning. 3 years had gone by and I was using a cane because it had progressed up and over to my right leg. The neurologist finally sets up an appointment with a specialist at Shands Hospital in Florida who diagnoses the Radiation Induced Plexopathy. I have to self catheterize because my bladder can't empty itself and had to install hand rails all over the place. Can't get into a bathtub, and oh how I loved a long hot soak. I finally had an answer. But, no resolution. I'm told nothing can be done. It's been 5 years and I'm in a walker now and hope that the disease will plateau sooner than later. Make no doubt, I'm happy to be alive and the radiation saved my life, but the trade off is very rough and depressing at times. Good luck to all that have encountered this dreadful illness. And here's hoping that someone somewhere will find something to assist those that do deal with it on a daily basis.
  • jazzy1
    jazzy1 Member Posts: 1,379

    I was very athletic and thought my weakness was from arthritis and damage from my 3 knee surgeries. Finally I went to a neurologist and that's when I was diagnosed with the plexopathy. I hope that this is not your case - your in my prayers.

    Pain in hip/sacroilliac
    I was diagnosed with uterine cancer last year and completed all my treatments (chemo & external pelvic radiation) last July. The only real side affects are pain in my hip or what my chiropractor calls, Sacroilliac. Doesn't seem like the adjustments are really helping, but on the positive side I do have many non-pain, good days...crazy to figure out!! I'm quite athletic with fast walking, or running if feel good, free weights and yoga. Do this every day of the week for approx 50-60 minutes per day.

    Before treatments had a bone density done (my first) which showed "thinning" in the tip of the hip area. My oncologist doesn't feel it's cancer and my numbers don't reflect any issues either...good news! Last time we spoke he told me he won't do MRI, just the standard CT for my cancer and I should go to my PCP. DOn't have one as I changed insurance and need a new one.

    After reading about radiation induced lubosacral plexopathy I'm wondering if this could be my problem. Does anyone agree it could be issue for me? I can't say I'm using cane, not that bad, but do notice tightness in buttocks/pelvic area when first standing and walking. My chiropractor also mentioned could be start of arthritis.

    What type of doc should I go to for testing and to give me help? I'd love to really know what it could be and then know how to treat. I've heard of many of us with pelvic type radiation who are in misery...lots of issues with on-going pain.

    I'd appreciate any input....

    Thanks
    Jan
  • inlaw85
    inlaw85 Member Posts: 1

    Plexopathy after Cervical Cancer Radiation
    I also was diagnosed with cervical cancer in 1997 and after having internal and external radation therapy, started to feel numbness in my left toes in 2005. My family doctor first sent me to a podiatrist. Nope, not here. As the symptoms progressed into the foot, ankle and up the leg, I was sent to a neurologist who kept sending me back to my oncologist because he thought the tumor was back. After multiple MRI's and CTs, the oncologist sends me back to the neurologist. The MRI shows that there may be a problem with the L5 on my spine and I am sent to an orthopedic surgeon who performs back surgery and he claims that after I have physical therapy, the feeling will be back in 3-6 months. Ah, no. As things progressively get worse, I go back to the neurologist who just scratches his head. Because there is considerable swelling in my foot and ankle, he's worried about blockage. So I'm sent to a cardiologist, who ofcourse, puts me through every stress test and doppler looking for the culprit. Nope, not here. The neurologist scratches his head again and sends me on my way to a arthritis doctor. That doctor says that he doesn't doubt me when I tell him that I have a problem, he just can't find anything wrong with me. The neurologist then does a complete blood panel making sure that it isn't lupus, lime disease or heavy metal poisoning. 3 years had gone by and I was using a cane because it had progressed up and over to my right leg. The neurologist finally sets up an appointment with a specialist at Shands Hospital in Florida who diagnoses the Radiation Induced Plexopathy. I have to self catheterize because my bladder can't empty itself and had to install hand rails all over the place. Can't get into a bathtub, and oh how I loved a long hot soak. I finally had an answer. But, no resolution. I'm told nothing can be done. It's been 5 years and I'm in a walker now and hope that the disease will plateau sooner than later. Make no doubt, I'm happy to be alive and the radiation saved my life, but the trade off is very rough and depressing at times. Good luck to all that have encountered this dreadful illness. And here's hoping that someone somewhere will find something to assist those that do deal with it on a daily basis.

    Plexopathy after Hodgkins
    Hello to getrealbar and all other posters!
    All of your comments were quite interesting to me; I'm glad I found you.

    My story is 4 or 5 weeks of radiation to the abdomen, after diagnosis of Hodgkins Disease, Stage 1A back in 1976. I subsequently went to law school and have been practicing law for almost 25 years. About six or seven years ago, I began having trouble walking, couldn't step up a curb and took some falls. I was diagnosed by a local neurologist, who advised me to use a walker.

    After reading your posts, I realize how fortunate I am to still be able to get around with the walker, drive a car and continue plying my trade, which is very satisfying to me. I see the neurologist annually, and he tells me I'm getting worse. It must be a slow progression, though, because I don't really notice on a day-to-day basis. I do tire easily and have considerable low back pain, but have to consider that I am rapidly approaching my 69th birthday.

    I was disappointed to read that Shands apparently diagnosed you, but was unable to offer any remedies. (Shands or Mayo were options I was considering as a next try.) It does help to know I'm not alone, and hope you will all put up with my 2cents now and then.
  • UteGoddess
    UteGoddess Member Posts: 3
    jazzy1 said:

    Pain in hip/sacroilliac
    I was diagnosed with uterine cancer last year and completed all my treatments (chemo & external pelvic radiation) last July. The only real side affects are pain in my hip or what my chiropractor calls, Sacroilliac. Doesn't seem like the adjustments are really helping, but on the positive side I do have many non-pain, good days...crazy to figure out!! I'm quite athletic with fast walking, or running if feel good, free weights and yoga. Do this every day of the week for approx 50-60 minutes per day.

    Before treatments had a bone density done (my first) which showed "thinning" in the tip of the hip area. My oncologist doesn't feel it's cancer and my numbers don't reflect any issues either...good news! Last time we spoke he told me he won't do MRI, just the standard CT for my cancer and I should go to my PCP. DOn't have one as I changed insurance and need a new one.

    After reading about radiation induced lubosacral plexopathy I'm wondering if this could be my problem. Does anyone agree it could be issue for me? I can't say I'm using cane, not that bad, but do notice tightness in buttocks/pelvic area when first standing and walking. My chiropractor also mentioned could be start of arthritis.

    What type of doc should I go to for testing and to give me help? I'd love to really know what it could be and then know how to treat. I've heard of many of us with pelvic type radiation who are in misery...lots of issues with on-going pain.

    I'd appreciate any input....

    Thanks
    Jan

    I am so sorry to hear about your problem. I was went through radiation and chemo treatments in 2002 and just last year I was diagnosed with the plexopathy. I enjoyed basketball and volleyball up until late 2005 when I was forced to quit but didn't know what was going on. My suggestion would be to see a neurologist and ask him to look into you condition and to consider lubasacral plexopathy. I went to so many doctors and wished it wouldn't have taken 7 years to figure out what was going on. I pray that this is not your case but I would ask my doctor lots of questions about plexopathy. Hope my input helps! Leslie
  • mickey25
    mickey25 Member Posts: 3

    I am so sorry to hear about your problem. I was went through radiation and chemo treatments in 2002 and just last year I was diagnosed with the plexopathy. I enjoyed basketball and volleyball up until late 2005 when I was forced to quit but didn't know what was going on. My suggestion would be to see a neurologist and ask him to look into you condition and to consider lubasacral plexopathy. I went to so many doctors and wished it wouldn't have taken 7 years to figure out what was going on. I pray that this is not your case but I would ask my doctor lots of questions about plexopathy. Hope my input helps! Leslie

    Was treated with radiation in 1987 for Hodgkins. Noticed tingling along spine during treatment. Oncologist said it was such a rare side effect that they did not mention it.
    Diagnosed with radiation induced plexopathy about four years ago by an EMG performed by a neurologist. Diagnosed confirmed by neurologists at Cleveland Clinic and University of Michigan.
    Have been seeing neurologists at UM every six months and plan to be seen every 12 months as of May 2010. Have completed two four-week sets of physical therapy. Have improved balance and walking, but no improvement to drop foot. Left leg still weaker than right.
    Saw ankle/foot specialist this week and he recommends surgery to move tendon from arch area to outer edge of foot in effort to straighten foot (currently turned inward) and allow it to land flat when I walk (now land on outer edge of foot).
    No pain ever. Only sought treatment and got disagnosis after I could barely walk back from an errand three blocks away.
    I am 47, female, with no recurrence of Hodgkins, but was diagnosed with breast cancer in January 2009. Was not candidate for more radiation; had bilateral masectomy and reconstruction. Am fine other than the difficulty walking. Do not use walking aids. UM neurologist said I could end up in wheelchair, but I'm determined to keep doing physical therapy exercises at home and to keep looking for answers.
    Hope this helps. Look forward to learning more from all of you.
  • zizzi
    zizzi Member Posts: 2
    mickey25 said:

    Was treated with radiation in 1987 for Hodgkins. Noticed tingling along spine during treatment. Oncologist said it was such a rare side effect that they did not mention it.
    Diagnosed with radiation induced plexopathy about four years ago by an EMG performed by a neurologist. Diagnosed confirmed by neurologists at Cleveland Clinic and University of Michigan.
    Have been seeing neurologists at UM every six months and plan to be seen every 12 months as of May 2010. Have completed two four-week sets of physical therapy. Have improved balance and walking, but no improvement to drop foot. Left leg still weaker than right.
    Saw ankle/foot specialist this week and he recommends surgery to move tendon from arch area to outer edge of foot in effort to straighten foot (currently turned inward) and allow it to land flat when I walk (now land on outer edge of foot).
    No pain ever. Only sought treatment and got disagnosis after I could barely walk back from an errand three blocks away.
    I am 47, female, with no recurrence of Hodgkins, but was diagnosed with breast cancer in January 2009. Was not candidate for more radiation; had bilateral masectomy and reconstruction. Am fine other than the difficulty walking. Do not use walking aids. UM neurologist said I could end up in wheelchair, but I'm determined to keep doing physical therapy exercises at home and to keep looking for answers.
    Hope this helps. Look forward to learning more from all of you.

    Support group?
    I was wondering if any of you might want to form a small support group for us plexopathy diagnosed cancer survivors. Nothing obligitory. Just a few friends to e-mail with woes and complaints when an ear is needed. This is a torturous and lonely raod and only we know what we go through daily.
    I'm 59 this Sunday, female, no career, crafty. (not usually so sociable)

    getrealbar, inlaw85, mickey25, anyone????? What do you say? E-mail me if you need a friend to talk to about this once in a while, I know I sure could use one.

    [email protected]
  • JMa
    JMa Member Posts: 1
    zizzi said:

    Have had this plexopathy for 8 years
    I had radiation for cervical cancer in 1998 at the age of 47 and my symptoms started in 2001 with tingling in the bottom of my feet. My toes went numb, then my whole foot, then my ankles. It started on my right side first, my left side was about a year behind my right in symptoms and severity.
    I was finally diagnosed in 2004 after many doctors just scratching their heads trying to figure out what was causing it. Nothing at all was showing up in MRI's or CT scans or bone scans, except that my sacral bone had been shattered at some point in my life (?). The final diagnosis was "Radiation Induced Lumbosacral Plexopathy".
    I had 10 weeks of very expensive Hyperbaric Oxygen therapy in 2006 that did absolutely nothing.
    I had to have a bifemoral bypass in 2008 (they replaced my abdominal aorta) because the blood supply to my right leg had been cut down to 30% because of arterial damage. My kidneys shut down in October that same year because they are being squeezed shut. I have to have stents replaced every 4 months to keep the urine flowing out of my kidneys.
    I have no feelings at all in my feet, ankles, backs of my calves, partially up my thighs and buttocks and my genitals are completely numb. It is now entering my left knee.
    Sexual relations with my husband is no longer possible. I have bouts of incontinence. I was walking with a cane up until this past Christmas season when I graduated to a walker. My legs are so weak now, I am having trouble lifting my self out of the tub and off the toilet. It feels like I am walking on stilts strapped tightly to my thighs.
    The only saving grace to this relentless deterioration is I have no real pain. The muscle spasms, cramping, burning and "tight socks" feeling is tolerable.
    I hope and pray that some day they can perfect radiation treatments so that this rare effect doesn't happen to anyone anymore, ever. It seems much worse than the original disease in that it is slow and torturous, and takes away so many pleasures of living life. I'm glad to have survived the cancer I had 12 years ago, but I yearn for the woman I was then.

    My struggle
    You described everything I've been struggling with! I am a 21 year Cancer Survivor. I received both interal & external beam rad treatments for inoperable cervical cancer in 1990.
    The progressive numbness & weakness in feet & legs has been creeping up into my thighs & butt. I also struggle with embaressing incontinence. I do have pain in legs and have been trying any kind of alternative kind of pain relief. Really don't want narcotics. Right now going through acupuncture.

    I use lots of assistive devices to get me through the day. I use a cane or walker daily and just received a scooter for distance. My foot drop gets worse as I get tired.

    I have an elevated toilet seat,grab bars,& transfer bench in bath room.

    I live alone and still work. Struggling to maintain my independence so will try anything device that can help. My biggest fear is not being able to drive because sometimes my feet are so numb that I can't distinguish when I'm stepping on brake or accelerator.

    My question is about disability. I am considering a medical disability from work. Has anyone applied for Social security disabilty? What was your experience?
    Thanks for listening...
  • wetz5526
    wetz5526 Member Posts: 13
    JMa said:

    My struggle
    You described everything I've been struggling with! I am a 21 year Cancer Survivor. I received both interal & external beam rad treatments for inoperable cervical cancer in 1990.
    The progressive numbness & weakness in feet & legs has been creeping up into my thighs & butt. I also struggle with embaressing incontinence. I do have pain in legs and have been trying any kind of alternative kind of pain relief. Really don't want narcotics. Right now going through acupuncture.

    I use lots of assistive devices to get me through the day. I use a cane or walker daily and just received a scooter for distance. My foot drop gets worse as I get tired.

    I have an elevated toilet seat,grab bars,& transfer bench in bath room.

    I live alone and still work. Struggling to maintain my independence so will try anything device that can help. My biggest fear is not being able to drive because sometimes my feet are so numb that I can't distinguish when I'm stepping on brake or accelerator.

    My question is about disability. I am considering a medical disability from work. Has anyone applied for Social security disabilty? What was your experience?
    Thanks for listening...

    My Struggle 24 years after radiation treatments
    At the age of 31, I was diagnosed with colorectal cancer followed by radiation treatments. About 2 years ago, I was diagnosed with myokymia lumbar sacral plexopathy as a result of the radiation. Looking back, I can say I had some symptoms of late effects but everything was very tolerable up until about 6 years ago. I have always been very active so to see my legs progressively get worse over the years is very frustrating for me. My symptoms are; buzzing, aching, twitching, tightening, balance issues, drop foot and some jerking with my feet and fatigue. These symptoms are constant (they never go away). Some days are better than others. The worst part is at night when I'm trying to get to sleep or sit in my recliner to read. It sometimes feels like I'm sitting on nerve in my sitting bones and have to get up. I also find that I cannot walk as far as the symptoms then increase and I also feel fatigued. I have seen a neurologist who put me on gabapentin but I don't think it's helped that much - if anything it might have cut down on some of the tingling. I have also tried a muscle relaxant but couldn't tolerate that at all. I do take vicodin at night when needed to help my legs relax and get to sleep. I have also seen an acupuncturist ~ that got to be rather expensive and I wasn't seeing very good results. I do a lot of yoga stretching at night before bedtime as it helps relieve the awful tightening feeling in the buttock/thighs. I am lucky in the fact that I do not have to use a cane or walker....yet. I can still go on my walks but it's a much shorter walk than I used to be able to do. My husband says I "kick a lot of rocks" when I walk. When I'm done with the walk, I find it much harder to lift my feet and the symptoms get worse. I'm sorry but I can't answer your question about disability. It's good to talk to other people that also suffer from late effects of radiation....it's good to know I'm not crazy and not alone in this struggle.
  • bluerose
    bluerose Member Posts: 1,104
    zizzi said:

    Support group?
    I was wondering if any of you might want to form a small support group for us plexopathy diagnosed cancer survivors. Nothing obligitory. Just a few friends to e-mail with woes and complaints when an ear is needed. This is a torturous and lonely raod and only we know what we go through daily.
    I'm 59 this Sunday, female, no career, crafty. (not usually so sociable)

    getrealbar, inlaw85, mickey25, anyone????? What do you say? E-mail me if you need a friend to talk to about this once in a while, I know I sure could use one.

    [email protected]

    General information on nerve damage from chemo drugs and rads
    I have posted about this before and with my chemobrain I will probably be repeating myself but bear with me. New people might like to see a new post on this.

    I have been a cancer survivor for well over 2 decades now, dang I'm old, lol. Anywho I have a ton of after effects for treatments so long ago and note that MY TREATMENTS WERE LONG AGO but today patients still suffer with less time in survival than I so I think my posting could be of some benefit I hope to everyone with pain issues after treatments.

    Just recently I finally got up the nerve to do a test I found out about from this site, it's called a nerve conduction test. A neurologist does this type of testing so you would have to be referred to one for assessment and possibly the test istself if he/she feels you might have nerve damage - history of chemo drugs/rads no doubt will get you the test if you show signs of tingling in your extremeties mainly but any kind of numbness, tingling or pain even in your back.

    The test isn't the worst to go through. They put some mild electrical charges through various parts of your body where you are reporting issues, just the ones behind my knee were a little more irritating but generally it wasn't a big deal. They can also do other testing for muscle weakness and issues where they insert a kind of an acupuncture needle where the complaints are and that doesn't hurt much at all, at least mine didn't cause I was numb there anywho, sheesh, lol.

    The neurologist, here anyways, gives you immediate feedback as he sees the results instantly on the machines that are monitoring the responses you have or don't have to the shocks. My diagnosis was nerve damage doubtlessly caused by chemo drugs. and perhaps rads. Rads were sited as possible causes of my lower back disc degenerative disease which I thought was my arthritis and it's part of it but the other part they feel were the chemo drugs - some of them they say can do this kind of damage. Vincristine, a chemo drug, that I had was notorious for causing nerve damage, not sure if they still use it or not. My guess is that if they do still use it they probably monitor it more or give maybe lower doses if they can. Other chemo drugs can cause the damage too but I don't remember what they were because I have chemobrain from the treatments too so see how that works? lol.

    I also had to have a CT of my back, yet again - I glow in the dark after two plus decades of CTs. That was BEFORE they realized they let off rads. Sheeesh.

    Now I also see another neurologist about memory and confusion issues and after a CT of my head and some memory testing and exam have concluded - yup - chemo and perhaps rad damage from certain chemo drugs and rads to the head. Duh, no kidding. lol.

    There are things people have tried to get relief from nerve damage and there is a list on this site somewhere but ask the neurologist and research the site here and in other reputable sites online.

    Above all, trust your gut. If you think you have a medical issue then seek out help and if the first specialist shrugs you off find another one who doesn't. I knew for instance I had fibromyalgia years before it was finally diagnosed - by a rheumatologist is the way to go there, at least in Canada that's who does fibro. diagnosing, and although some dismissed my pain I finally found one who didn't. Don't give up. I personally think fibromyalgia is linkied to all this nerve damage from treatments too but hey that might just be me. It makes too much sense.

    It's a challenge to stay on top of all of our after effects, which ones are just aging and which aren't. As my neurologist said about my chemo brain 'we are seeing long term survivors with this kind of issue with memory and confusion from treatments'. Wow that's nice to hear that kind of validation, even if the info does suck, rather than being told 'um, have you seen a shrink lately?' to explain our mental issues with memory lapse/confusion. I had to deal with that years ago before they started to see so many survivors with these issues and have done more research in it all. Validation is golden to a survivor - and by the way - you AREN'T NUTS. If a doc seems to be suggesting you don't feel what you know you feel - on to a new doctor.

    All the best.

    Bluerose