radiation-induced brachial plexopathy
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I have had fantastic results with the use of my arm after extensive nerve transfer surgery for a very debilitating case of RIBP. I have a very rigorous PT / pool therapy program I do 3 times a week. I am also taking Pentoxifylline to increase blood flow thru the damaged tissue. I would be happy to elaborate if anyone is interested.
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Buford, good for you. Are you cancer free
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Hello, Buford,
By all means, do please tell us more. Where was the surgery done, and by whom, and how long ago? What was the surgery/recovery like? What was your functional status before surgery and now? How long will PT be necessary? Any information you can give us would be welcome. Thanks!
Binney0 -
And hello, all,
I just wanted to share the information here that I posted elsewhere about the up-coming September Patient Summit at the World Congress of Lymphology in San Francisco. When you sign up there's an option to register as wanting a session on RIBP, and they will provide a mentor if there's enough interest. A chance to meet others with RIBP, share issues and strategies, and get guidance from professionals interested in it.
The Patient Summit is planned for September 8 and 9 in San Francisco, co-sponsored by the International Society of Lymphology and the National Lymphedema Network. It's an opportunity for patients to learn more about lymphedema: all the latest in treatments, research, new products. Rub shoulders with lymphologists and lymphedema researchers from around the world, listen to lectures tailored to patient interests, and participate in workshops on a variety of subjects. You'll also be able to visit the Exhibit Hall of lymphedema products--booths set up by all the players in this growing field. See, feel, and experience all the garments, talk to the designers and manufacturers, pick up ideas and share your needs with them as well. Meet up with others from this forum who will be attending, and make new friends with lymphers from all over.
More information here:
http://www.lymphology2015.com/program/patient_summ...
Go for it!
Gentle hugs,
Binney0 -
OOOOH! Thanks Binney! I am signing up, it's right after my birthday, it's what I want! Plus, I am reading about pentoxifyline, it sounds very promising, I am going to talk to my onc about it, especially considering i am thinking about switching from femara back to tamoxifen(again). The reason I stopped before is I got very concerned about embolisms, Because suddenly lately, I also seem to have "thick" blood. And pentox sounds like it would be good for that too.http://jco.ascopubs.org/content/22/11/2207.full.pdf is what i am reading now from following the content about it on wikipedia. Hope to go to the lymph meeting! thanks to both of you for good info.
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Wow, Buford! I haven't heard anything that successful for treating RIBP in Lo! these many years! I would love to hear more, everything, since you so kindly volunteered.
Did you have breast cancer and when? What is nerve transfer surgery? Was your arm useless before the surgery? How does pool therapy help your arm? Please tell me EVERYTHING in as much detail as you can muster! Thank you and thank you again!
Barbara-
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I had pt with frequency specific microcirrent. And laser treatment. My range of motion is good, but I still have numbness in the hand and upper arm. With assistance I have full range but on my own the arm doesn't go all the way up over my head. I still,am not able to lift a three pound weight up to my shoulder.
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I have not registered yet, but I will look for that option.Tomboy: you are going to go? This will be very cool to get to meet some of my Swell Sisters!
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First, I want to say it is a pleasure to meet everyone; I have waited a long time to speak with anyone diagnosed with RIBP. It looks like there have not been too many males posting but I will join the crowd. Here is my story.
July 2009 I had a melanoma removed
from my scalp with no lymph node involvement.
The melanoma metastasized to a lymph node in my neck November of 2009. Due to insurance hassles and scheduling, I
did not have surgery until the end of January 2010. I had 39 lymph nodes removed along with the sternocleidomastoid
muscle. The surgery and recovery went
great. Because so much time passed, the
node got to 2 cm which meant radiation.
I got high dose for 5 days and it went well. A couple weeks later I started interferon for
one year and completed in March 2011.I was doing great until May 2011
which was 15 months after radiation. I
woke up in the middle of the night with a knife searing pain in the bicep of my
dominant arm. Over the next 6 months I
began to lose the function of my arm.
Each day was better than the next.
In November 2011, I was finally diagnosed with RIBP; the Dr.’s never
said how bad it really was. They seemed
satisfied that the diagnosis was not due to cancer and sent me on my way. By Christmas, I could not move my arm at all but
my hand could still function.As distressing as it was, it came as
a relief that I finally knew what I had.
Knowing the cause of my paralysis, I took to scouring the Internet for
answers. I knew that there were specialists out there who could stitch together
nerves. But I wasn’t sure what I was looking for. I found the name of a
specialist, and during a consultation, I learned that the treatment for my condition
was a nerve transfer surgery. Nerves
control muscles and there are specialists out there that can take a fully functioning
nerve, by pass the bad nerve, and attach it to the muscle that is not
functioning. The difficult part is re
training your brain to now control a different muscle. I found a surgeon who specialized in the
procedure and went for another consultation. During this appointment, the
specialist told me he didn’t think an EMG was necessary as part of his
evaluation. Something stuck in my mind about that, I had a bad feeling and decided
against this surgeon and continued my search. I returned to the Internet and found
the name of a specialist in New York City, Scott W. Wolfe, M.D., director of
the Center for Brachial Plexus and Traumatic Nerve Injury at Hospital for
Special Surgery. I called the office,
faxed them 30 pages of records and within a week, they’d scheduled an
appointment. When I met with Dr. Wolfe,
his approach was more thorough. For instance, I underwent EMG testing as part
of my initial evaluation and another EMG test the night before the surgery. He
listened to me, took his time explaining things. He also informed me of the 200 + nerve
transfer surgeries he performed, none were for radiation damage but he was
fully confident my surgery would be successful.
The nerve transfer surgery that Dr. Wolfe described was different from
the one the earlier surgeon had recommended.
Dr. Wolfe told me that the nerve transfer surgery would take eight hours
rather than four, because he would do a double nerve transfer to the bicep not
a single one, which would improve my chances of recovering movement. Also, the
other surgeon I had considered said that my ability to shrug my shoulder would
be lost, but Dr. Wolfe said, no, that wouldn’t happen. The surgery involved numerous nerve transfers
including transferring nerves from the forearm to the bicep muscle and one of
the triceps nerves went to the deltoid muscle.
They harvested pieces of healthy, expendable nerves from one location
and used them to reconnect the ends of the damaged nerves to help restore my ability
to move my elbow and perform lifting. I was
fortunate to have identified the problem and pursued finding a treatment in the
earliest stages. Studies show that if
nerve reconstruction surgery is done within six months after a nerve is damaged,
patients do far better. I stayed
overnight at the hospital and then kept my arm in a sling for six weeks while I
recovered at home. Soon after the procedure, I began physical therapy with a
hand specialist. Three months post-surgery, I felt a flicker in my arm where I hadn’t
felt anything for months. This flicker is usually the first sign that the
surgery has worked. Since then, my brain has been learning to reconnect to the
nerves that have been transferred, and more and more of my mobility has
returned, including my ability to lift a glass, turn a key and open a door,
button my shirt and, yes, shrug my shoulders.
While I still have many limitations, I am very grateful for what I
found. All I can think about is how
people told me that nothing could be done, while every day my arm got worse. Now, I have movement where there had been
nothing.I encourage you to watch some you
tube videos and lectures on the web from these two Dr.’s. While they may not have a solution for you, they
are the best in their field and may provide some insight or hope to a diagnosis
that you are suffering from.Dr . Scott Wolfe, Hospital for
Special Surgery, New York City.Dr. Susan Mackinnon, Washington
University School of Medicine, St. Louis, MO0 -
Buford thank you for the details. I am glad you are doing well. Bar
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Wow, Buford,, thank you for posting your story. I'm sure that it will be helpful for others. Best to you for your continuing recovery!!
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Thanks Buford for posting your stories... I am in hospital at the moment doing an intensive neurological program in the hope of helping Radiation Induced Lumbar Plexopathy... I had pelvic radiation for the treatment of Uterine cancer 13 years ago ... Only 0.16% in 1200 people have the possibility of getting this... Over the last few years my legs have become weaker and over the last few months walking has become very difficult... Before Christmas I could no longer manage at home so came into this rehabilitation hospital in Sydney... I am learning to use a wheelchair and a walker for very short walks or just for the bathroom etc... Hearing your story gives me hope of more practical help the drs just say there is nothing they can do... In your research have you come across Nerve transfers for lower limbs???... I know no one else who has this effecting the legs....
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Helen I am sorry. . I hope you can find help. Buford thank you for your post. I am happy for your success and hope you continue to do wel
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hmmmm, sounds a lot like an advertisement to me. i think i would stay away from any surgery on what also is my lymphedema arm.
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Tomboy, I hear you! But I can assure you this is really a fellow cancer patient who has found a way to help what was a progressive deterioration due to RIBP, and is also feeling alone enough to want to make contact with others who live with it. Yes, doctors advertise such things, and I agree with you that that's unfortunate, to say the least. But patient to patient it's amazing to be able to hear a real-life story in progress.
Here's a small study from 2009 regarding nerve transfer surgery, done at Washington University School of Medicine in St. Louis. Clearly more research is needed to follow up on these surgeries, and I hope Dr. Wolfe and others doing the surgeries will be providing that for us as they proceed.
http://www.stepup-speakout.org/Radiation_Induced_B...
If you scroll down from that study you'll see other studies regarding another surgical procedure proposed for RIBP, but this is the first report I've ever heard from a patient perspective about any RIBP surgeries. I hope others will come along and post their experiences as well.
Buford, do you know if Dr. Wolfe or Dr. Mackinnon have organized studies and will be publishing their results? Please do keep us posted on your on-going experiences.
Be well,
Binney0 -
Thanks Binney. Maybe I was a little paranoid last night, you know how you see testimonials from people in a magazine, they sound real, and informative, and like the person smiling and talking is real as they tell you what happened to them? then at the bottom of the page, there is a disclaimer that "this is a paid testimonial, your results may be different" type thing. Do you know Buford from somewhere else? I have read extensively on stepup/speakout, and love it! But I havent read about RIBP there in a long time, thank you for providing the link for RIBP on it for us. The other link though, for the lymphedema convention isnt working, that you made in the other post isnt working, but i will google it, thanks for telling us. i want to go, and it would be lovely to see you there, and you too glennie! Maybe we could get some other california girls to go too! (edited to add, the only thing that scares me about that RIBP surgery is how would it affect a compromised lymphedema arm?)
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Tomboy, I sure understand and respect that kind of paranoia--always wise to keep the baloney-antenna out there! I do know Buford from elsewhere--a small flurry of PMs, to be exact. (As we all know it takes courage to post publicly about such personally traumatizing experiences). And you're so right--an eight-hour surgery on a limb with LE is an alarming undertaking. But LE takes a back seat to the angst of RIBP, and is massively aggravated by the dependence of a paralyzed limb. If it's possible to make the limb mobile again, LE control becomes easier. More research is critical, and I hope it's forthcoming.
I'll go see if I can find a working link for the conference information. If you beat me to it, please post it. Thanks!
BinneyEdited to add: try this link for the Patient Summit:
http://www.lymphology2015.com/program/patient_summ...
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That link worked, thanks! But I guess I dont get to go, because it is asking me where i work, and i am not, so it wont let me proceed. I will call them.
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Helensamia,
I did not discuss nerve transfers for the lower limbs with any of my Dr.'s, but that does not mean it does not exist. When I first started looking for options for my RIBP, a very good back surgeon and an exceptional plastic surgeon both familiar with the upper body discussed possible nerve transfers but they both recommended seeking a specialist in nerves which meant traveling some distance for me. Both of those Dr.'s may be a starting point for you. This will take much research on your part.
You may also want to look into this clinical trial taking place in Paris, https://clinicaltrials.gov/ct2/show/NCT01291433. "The aim of this phase III randomized clinical trial is to show PENTOCLO
efficiency and its tolerance in long survival patients irradiated before
for cancer and presenting with partial RIP of upper or lower legs." I have been taking Pentoxifylline (2 x 400 mg/day) for about 14 months and I feel it is definitely helping, I feel a bit less restrictive in the damaged areas and the pain may be down a tiny bit. Many Dr.'s are reluctant to prescribe it but they are not the ones with a debilitating disease. I also take 1000 iu vitamin E daily as this is part of the trial. This is much higher than the daily recommended amount, but it is what the trial calls for. Clodronic Acid is not FDA approved so I am not taking that. The pentoxifylline allows the blood to flow easier thru the damaged areas. To date the side effects are I bruise easier and had much soreness from my last blood test. There is much info on the web about it for RIBP and RIF, most positive, local Dr.'s know nothing about it for our diagnosis so you will have to make your own decision.Best of Luck, Buford
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Tomboy,
Please see my post to Helensamia about Pentotoxifylline. Even a high dose of Vitamin E thins the blood.
Buford
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Thanks Buford for this update of your treatment ... I have written down the pentotoxifyline name to speak to my dr at the rehab hospital where I am at the moment... Trouble is she does not believe in the diagnosis even though given by two Neurologists and after ayear of tests... She says she spoke to a radiologist and they have nevr seen it in the lower limbs!!!! Though rare it does exist but one battles the lack if knowledge and there lack if how to treat you... I had heard before the use of wafarin and was going to start on this before I came into hospital... My neurologist was going to prescribe this so I am sure he would do the Pentitoxifyline as it is far more stable than wafarin and does not require blood tests.. ... The vitamin E is to thin the blood too??? Will look at the link you included... Not sure how I feel about surgery as it is quite experimental and looking on the internet there is far more on upper body even for Quadraplegics with different diagnosis... At least there is a little hope here even if a slight improvement
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Helensamia, I'm so sorry about the denial of your reality by those charged with your care. How incredibly frustrating--and just plain sad.
Gentle hugs,
Binney0 -
Thank you Binney.... Always there with support xx
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Hi there Buford have not been on here for a while just wondering how you are going .. I am about to start the Protocol from Dr Sylvie Delanian in Paris.. Vit E Pentoxifylline clodronare and prednisone.. It has been a long road to have my diagnosis validated ..radiation induced lumbar plexopathy and then finding the treatment in Paris and then a dr in Australia to support me in this trial .. I am windering how you or anyone else is going by doing this ... Thanks Helen
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Helen, I'm intrigued, and I'll sure be cheering for you. PLEASE keep us posted as you progress. Do you have links you especially like to any information about the protocol? You go!
Hugs,
Binney0 -
I was diagnosed with RIBP fairly soon after receiving very high dose radiation to axilla My initial diagnosis was based on EMG results and mild symptoms. Within a couple of years, I was having trouble with fine motor skills (e.g., using fork, writing, picking up and holding things) and my lymphedema was becoming harder to control. My radiation oncologist put me on pentoxifylline, Vit E and a bisphosphonate on the hopes of slowing down the progression. I've been on them for 4 years now, and I have slowly regained a fair amount of function in my hand and can now straighten all of my fingers. I recently asked my physiatrist (a different one than did the EMG testing) whether, given that I have regained function whether the original diagnosis of RIBP could have been incorrect. She said no. She also said that anecdotally, some people report regression of RIBP symptoms with pentoxyfylline, Vit E and bisphosphonates and also with low molecular weight heparin (which I took for other reasons). I am unaware of results of any good clinical studies, and there is no way to know for sure why I got better. KS1
PS I haven't heard about prednisone for RIBP, but when I took it once for other reasons, my lymphedema improved remarkably and stayed better for a good 6 to 8 weeks after I finished taking them.
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Hi Binney.. It is about a year since I have posted here. In that time I have been adjusting to living my life in a wheelchair as my legs are totally paralysed from the RILP.. Sadly I am one of that Tiny percentage that gets this.. This is one link to Dr Sylvie Delanian but not sure if you can open it https://www.researchgate.net/publication/23270723_... i have some info as PDF files that Dr Delanian sent me if you would like to read them I could email them to you .. Interesting thing is that those I have connected with some have LE as well.. DR Delanian has been working on this research for more than 14 years.. It seems she started with the Vitamin E and Pentoxifylline and has then added the other medications as trials have progressed. It is thought that it is to late to see a reversal of my situation as the nerves are so badly damaged but the hope is that the protocol could help the nerve pain, lymphoedema, future bowel or bladder problems and stop any further damage, although I do feel the degeneration has stopped.. The feeling is that if peole could have access to this early in there diagnosis that it could be more beneficial.. I am to start for 6 months and report back and then decide if I should continue though it seems results take a few years .. I have started another blog about this too https://lifeinawheelchairblog.wordpress.com happy to share any info on this for those with RIBP as the protocol is the same ..
Combined treatment for 6 MONTHS:
1.toco 500 (tocopherol 500) vit E 1 tab x2/ day,MORNING/ EVENING, 7 days
2.pentoflux 400 (pentoxifylline 400) : 1 tab x2/ dayMORNING/ EVENING, 7 days Beginning with 1 tab/day during one or two weeks Then take 2/day if well tolerated
3.bonefos 800 (clodronate 800) :2 tab/day at one time in the Morning at breakfast But without milk and calcium one hour before or after 5 days, from Monday to Friday
4.cortancyl 20 (prednisone 20): 1 tab/d in the morning 2 days,Saturday and Sunday
5.omeprazole 20 (or Ranitidine 300): 1 tab/d before sleeping2 days Saturday and Sunday
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It is good to know that you are having good results from taking these even if we do not know why or how!! I am also glad to hear that your Dr suggested this protocol as my experience for myself and others is that they say there is no cure just do physio ... Not very helpful ... It also seems that they need to be taken for a few years too.. I so wish that someone had suggested this while I was still walking .. Say at the bigginning of 2014 .. As maybe my life would be a different story.. I have a friend who has stated taking these meds too, she is still able to walk but with some difficulties so it will be interesting to monitor her too.. I will keep you posted on my progress.. Thanks Helen
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Helen, thank you so much for posting here--hope is a fantastic gift to share with us! Dr. Delanian must get so frustrated, because patients are not diagnosed in a timely manner so can't get the optimal results. These delays need to change, for sure. (The link opened--thank you!)
I'm so sorry you've had to start a new blog on the subject of life in a wheelchair--but also grateful that you're sharing your experiences this way. Looking forward with you to some really GOOD results from this new adventure.
Gentle hugs,
Binney0 -
thanks as always Binney.. I directed a lady to your web site who has RIBP.. I enjoy blogging and having two keeps me occupied!!! The two problems did not really mix in one blog
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