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radiation-induced brachial plexopathy

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Comments

  • ryder51
    ryder51 Member Posts: 11

    miss 302 sorry I missed your reply,I have trouble each time navigating to this site.I know what you mean about getting ready. Takes for ever, I bought a little tool to help button my shirt. Recently went to a wedding had to fly to get there,wow that is another story,we rented a room and only had so much time, I started having an anxiety attack because I couldn't button my shirt,took to long n the shower one hand to reach in the shower is hell,I got so mad so frustrated I stopped functioning. A tear ran down my cheek when my nephew popped in an saw me there, he helped me finish getting ready, we made it in time ,it took awhile to compose after that. My recent frustration has been obtaining my pain meds on the road traveling in my RV. I make an appointment at the next town I will be in, this last go around ended me in a cancer treatment facility. Surely I thought they would know about RIBP!! NOT!So since I have not had a ct scan for two years for my head and neck cancer, he coaxed me into getting one so he would help me,it is all about the money. I really am interested in how the mayo clinic visit went, if you don't mind sharing. I have reached my give up my trip point, things are really getting hard, I have started looking for a house to buy in the mountains and starting the loan process. My nephew is closing his business in calif, by the end of the year and will join me. SO the plan is in place. The ct scan was clear, but the ct scan for my aorta in my abdomen has an aneurysm and I need to be operated on. The Doctor said GOD knew you were strong to get through this,three battles with cancer, I see a lot of people give up.Sorry DOC I said I should be more grate full but this RIBP has put me real close to the edge I wish for a day you could feel my pain and fear of losing my arm then you would know my lack of gratitude, I have been dealing with this mortality Issue for 17 years, some days I told him I wish Jack Kevorkian was alive.Ya just got to hang in there he said. It is areal struggle every day to stay positive I am sure you struggle each day not to bring down your love ones, I lost my wife of 35 years,could not imagine if she were here how hard it would be on her. I have relatives who invited me to live with them but I could not burden them. You probably struggle with that too but GOD knew they were strong too AND WOULD BE THERE FOR YOU! Well I hope this finds you with renewed hope!
























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  • ryder51
    ryder51 Member Posts: 11

    So my latest go around is therapy. I ended my trip in the Olympia area to have surgery on my aorta in my abdomen. After some minor setbacks and a 4 day stay in the hospital,all is well. I started the process of settling in, secured a family doc,who put me in physical therapy. Ot therapy also. I have received some good tips on living with one hand. I also bought products that help. The cutting board I bought is called swedish design, has a vice on it and pins to stick objects to cut. I have used the vice to open jars ,cans and bowels to mix, I do alot of cooking I am so glad I found it I also went to zip up boots,slip on causuel and a sock aid . I bought add on zipper rings for the tiny zippers. The therapy is keeping my joints moving but have not seen any signs of strength development, infact I aggravate the nerves so bad it's affecting my swallowing, headaches and nausea. I evan asked for nausea rx. I now am released from restrictions from surgery so I have upped my mileage of walking on trails in the north west. The ot lady set me up with a sling for holding my arm using my water bottle belly pack. Really takes the dead weight pain away. She also set me up with a compression glove, because I have had several lymphedema attacks only in my hand,swells up and the rist also. Feels like a big club. Just thought I would share some good ideas. Now that my aorta is fixed, I am spending the next six months as a one arm camp host right on riffe lake,at the base of mt Rainer. I am not letting it take me down!!!!

  • binney4
    binney4 Member Posts: 1,466

    Ryder, so glad to hear all's well. You are such an inspiration to me. The cutting board sounds wonderful. Do you have a link to it, by any chance?

    As for that camp host job, I'm seriously jealous! Enjoy!

    Hugs,
    Binney

  • hugz4u
    hugz4u Member Posts: 1,818

    Gooid for you Ryder. You Go, Go, Go!!!

  • Fitz33
    Fitz33 Member Posts: 123

    Ryder, I have the same problem as you and I wonder if you can tell:me where you bought your helpful items. I’m seeing an OT and he has built me a pen to start to try and use. I can send you a photo if you’d like. He’s also talked about building me something that goes around my wrist with a hook to help me get dressed. I also now wear a full edema glove but my fingers don’t seem to be losing fluid so are sore and swollenn. I wear a compression sleeve as well. Could you and I trade info on how we are dealing with this

  • ryder51
    ryder51 Member Posts: 11

    Hiya, Ryder here! Takes me awhile to respond. I found the cutting board on amazon,on the search bar I typed in " one hand cutting boards" about two thirds down the page is the Swedish cutting board 56.95. Their are many to choose from. Also I typed "dressing aids" and found quite a lot of things I bought, button hole tool, for helping put shirt buttons on ,it works just don't be in a hurry because it takes time to use. Ebay also has items too. I found if I use the key words like, aid,disability,one handed,support and medical devices. They have clothing also, like shirts that have buttons that look like buttons but they snap. I bought nice dress shirts with them and a heavy flannel I found at boot barn. I wear a medium now that I have shrunk but I buy large sweat shirts though because they are easier to put on. For me I am never past the angry stage,it is all a challenge,some days I smile at my self when I can't do the simplest things,other days I almost cry(swear to).People don't realize how much we take for granted'the simple task of buttoning my Levies at times is an ordeal,I now own several pants that are elastic waste band. So I just bought a sport compression sleeve at epic sports .com I get it Friday and the copper compression glove is next I am glad my OT therapist helped me out, I would bring real world questions and we would work together and figure ways to make it work, like how do you wash one hand? the standard lay wash cloth on counter and rotate hand. WE came up with a scrub brush that has suction cups that you slap on the inside of your sink,works great. The other suction brush unit is for washing glasses and cups,it has a vertical brush and a side brush works great. Amazon. I worked today and can't keep my eyes open any more and only 4 hours enjoying it though.Talk to you all soon


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  • Fitz33
    Fitz33 Member Posts: 123

    Thanks Ryder. I really used all of your information and I have purchased a few things myself. I wear a lymphedema sleeve and now I have a glove for my hand. Sometimes I notice my hand is better without the glove and then I start wearing the glove again until I feel like I can go without it. I’ve also started taking gabapentin three times a day. Has your doctor prescribe that for you? Thanks for the info on the one hand washing I wondered how I could do that. My OT is help me in a lot of ways too, like how to dry your back after a shower, you take hand towels and slap them on your back. I agree with you people take everything for granted and they just have no idea how fortunate they are if they have control of all their limbs. I’ve gained a little use of my hand but worry it won’t stay since it’s like 3 steps forward and 2-1/2 back all of the time

  • annc2019
    annc2019 Member Posts: 93

    How about reaching out to NORD? It is an organization for rare diseases. This might not fall directly under that category but it is close enough.

  • ryder51
    ryder51 Member Posts: 11

    For what ever reason I really have a hard time navigating to here. I wrote several times in what I thought was this link and never received a return. Anyway all this time I was waiting to here from miss 302 and it was here. I also replied to fritz33. Well I thought I would start with I have a new PCP,I asked for a doctor made in America,I am not prejudice by any means,I was married for 35 years to a beautiful black lady,but when it comes to my health I need to communicate and my last PCP could just not get on the same page! More times then I want to mention did I here you are a complicated case. Through RIBP in the mix ,which 99% of Doctors have no clue what it is,their sentiment is oh another acronym. My new PCP looked it up right away and spent over 2 hours with me,yes I found someone willing to go the exta miles. Like you said you feel so alone I am feeling like that way too, at least now I have help in the medical realm. My appearance is such I look fit and healthy. At first glance what's wrong with him? I get those looks from people all the time. Especially when I park in disabled spots! I am legally disabled but I rarely park in disabled parking. I drive with a spinner knob on the steering wheel which makes it way easier to drive, my new PCP is writing a letter to declare the need for this device. I do not want to draw anymore attention to driving, I do not want to lose the privilege. I now know that RIBP IS DIFFERENT for each person,I read how some the pain is unbearable and others it is an annoying situation. For me I have 3 titanium rods holding my spine together, 36 screws and 10 fused discs the pain from that alone causes me to take 15 mg of morphine twice aday. By the way all caused by radiation from cancer,so to add the pain from RIBP, the asleep feeling gets to hurting so bad I bump my hand sends electrical pain shots up my arm. I can't imagine what it would be without the drug,which by the way they make me feel like a criminal anymore just for taking it. So now add swollen lymph fluids at night, I am alone nobody else feels what I feel and doctor's can only be as much help as they can. I am positive, really I am, I am just relaying my feelings on being alone in a sad situation.ryder51






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  • miss302
    miss302 Member Posts: 17

    hi everyone

    Ryder51 sorry to hear about your latest health issues.

    My left affected arm is getting worse. At times I have difficulty lifting my arm or moving my fingers. It's really scary as I wish it would just stop and not progress. I have lower leg braces on both legs from chemotherapy induced peripheral neuropathy and I fear the side effects from cancer treatment will lead to my needing an electric wheelchair with a right joystick because my right arm will be the only thing left that works someday.

    I was diagnosed with mold toxicity and CIRS (chronic inflammatory response syndrome) and have been learning and dealing with that. Quite a bit of mold was removed from our home. The 2 kids and I moved out for almost 3 months while our house was remediated. Like I need another tough diagnosis. But I'm trying to stay positive. My son is feeling better and seems to be near normal so I'm thankful for that. My new neurologist said it will take my body at least a year to heal from my mold illness issues.

    I hope all are doing well.

    Jess

  • ryder51
    ryder51 Member Posts: 11

    Hiya all! I just finished my camp host job in beautiful Mosseyrock park WA. I was so appreciative for that door to open for this one arm guy! I was able to do more than I thought . Covid -19 though held me up for my next camp host job at lost lake resort Oregon on Mt Hood, federal land and they won't let us open till? But they did give us permission to start setting up! May 1st I might get my RV in. So I am using this time for more physical therapy, doing 12 sessions and my pt has set up a program focusing on scar tissue manipulation using a tennis ball and massages the plexus area,forearm and back of my neck. Second session today,it has fired up the nerves that's for sure but did notice a little more ease of movement of my neck. So time will tell! The compression sleeve calmed my asleep feeling down to a moe tolerable notch to night. Being in western Washington the covid has really an impact, I still sneak out into the woods across the street and catch the trail system alot people out using them. My dog and i still manage multiple miles every day. My 1st time driving for aweek going to PT really felt good till that night wow . Anyway I know alot of you are worse off and I am not complaining,I still right down each night something to be grateful for. Miss302 sorry to here about the mold what next wow I didn't know how long it stays with you. Does it compromise your immune system. I keep wondering how much can my plate hold ! In light of your latest update another prayer is due.

  • Vix1970
    Vix1970 Member Posts: 8

    hi all. I think I have this. I’m almost 4 years out from diagnosis. My arm has felt strange for since surgery. I had mild lymphedema and wore a sleeve for a year but it resolved and was fine for over 2 years. Over last 6 months increasing symptoms slowly and in the last 3 months I have developed hideous pain in my upper arm, it is so painful it almost drops me to the floor at times. I’ve lost most movement in the shoulder and arm I cannot lift it or stretch it at all now.

    There is discomfort and tightness going right across my collar bone area and under my armpit. Numbness and tingling in my hand almost constantly and now my little and ring fingers are pulling in toward my palm.


    I had loads of X-rays taken this week chest arm and shoulder. Gp is concerned at amount of pain and the fact that it goes across my collar bone area and could mean something is growing in the tissue and pressing on a nerve.

    However my research suggests it’s probably RIBP so fingers crossed fir positive results

  • binney4
    binney4 Member Posts: 1,466

    Vix, I'm so sorry you're having to deal with this! And especially that you're having to hope for positive results to a crummy diagnosis as opposed to something worse. So I'll be hoping instead it's something completely fixable, and without a whole lot of intervention. Please do keep us posted moving forward. When will you get results?

    Hugs, prayers, and yes of course crossed fingers!
    Binney

  • American
    American Member Posts: 2

    I get you on the being special thing... I am tired of being ah so unique too. Long term effects, and especially the prevention of long term side effects from cancer treatments are a huge gap. So, we who survive the treatment are stuck with being special...

    Have you looked into Hyperbaric treatement? Maybe some nerves are beings pressed by scar tissue, and hyperbaric may help bring some oxygen into the tissue.

    The system does not allow for links, but Google it...



  • American
    American Member Posts: 2

    Have you looked into Hyperbaric treatement? Maybe some nerves are beings pressed by scar tissue, and hyperbaric may help bring some oxygen into the tissue.

    The system does not allow for links, but Google it...

  • marianelizabeth
    marianelizabeth Member Posts: 1,156

    I went back a page and saw that I had posted almost 3 years ago but no one else was posting then. I understand the "rare, unique" terms and I have called myself a guinea pig. There is no confirmation that I have RIBP as no one has ever pinned down what has caused my problems. My breast cancer moved to MBC or advanced cancer when a biopsy found a tumour that had tangled around the neurovascular bundle of the brachial plexus. Lymphedema started first on long flights to Nepal to lead (with a large crew) a high altitude trek. I worried more about a knee injury that occurred just before but I did the trek and ignored the lymphedema. Once home I started seeing all my doctors both because of the lymphedema but also because I had so much pain. I had my implants removed in hopes that would help. That was in June 2017 and by late August I had the above diagnosis.

    I am currently NEAD~~no evidence of active disease which is great. However the neuropathic pain caused by the original tumour has radically changed my life. Last August the pain was so bad that I was admitted to the Victoria Hospice and had two surgeries to have an embedded intrathecal pain pump placed. The first was with an external pump to ensure that the drugs would work. then the embedded one. I got 6 good months before the pain went sideways in late April and spent another 2 weeks in hospice having the pump opioid changed to the strongest in the world, sufentanil plus bipuvicaine as well as oral and nasal spray ketamine. It is working for the most part so long as I am lying down. I can be up for short periods before the gravity causes circulation ending in burning, throbbing pain down my arm and worse in my hand.

  • hopeful82014
    hopeful82014 Member Posts: 887

    ryder51, for some reason I stumbled into this thread and landed on your mention of being a camp host up in Mossyrock Park. I just want to thank you for volunteering as a camp host. We've encountered wonderful people from all over the country filling that role and they have each and every one added significantly to our experience in the various parks. I hope you know that all of you are appreciated and remembered!

  • binney4
    binney4 Member Posts: 1,466

    marianelizabeth, I'm so sorry for all you've been through, but especially for the disabling pain that has turned your life upside down. It sounds like you've been getting some good help, but there's so little known about this diagnosis, and almost nothing on offer to help with it.

    I did come across a case study of a sucessful nerve transfer surgery that improved mobility in a patient with RIBP but also reduced pain. I have no idea whether your situation would respond to such a thing, but thought I'd post it for you to consider and share with your care team:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26867...

    Please know you're in my thoughts and prayers as you move forward.

    Gentle hugs,
    Binney


  • elderberry
    elderberry Member Posts: 1,068

    marianelizabeth: Hi. I often think of you and Pots and other fellow British Columbians. What a time to be dealing with life-altering non-Covid issues, although there is no "good" time. I am so sorry about the pain issues, it takes the joy out of being NEAD. I haven't checked the boards/threads for awhile so I have been most remiss on checking in on you.

    Cyber hugs

  • marianelizabeth
    marianelizabeth Member Posts: 1,156

    Cyber hugs to you to Elderberry. It sucks that I can't appreciate NEAD more but I have recently got 2 young hens which I am able to care for with a small coop not far from our front door. I loved having chickens for 4 years in Vancouver and am hoping this will do something similar. I also care for our patio garden for the most part. These small things often take me all day to manage but the alternative was not good for me.

    Binney, I got a full second opinion thanks to an old friend, a retied doctor in Vancouver who went to great lengths along with my GP here. No good news but it was a relief to know that my treatment here is the best and even possibly more than could have been done there.

    How are you managing in this new world?

    XXOO

    Marian

  • binney4
    binney4 Member Posts: 1,466

    A quick notice to those who have limited use of one hand/arm, WearEase is having a close-out sale on their Sarah Bra, which can be donned with only one hand. A regular $60 item, it is now only $29.99. But when they're gone, that's it--they won't be offering them anymore.

    Scared

    https://www.wearease.com/collections/discontinued/...

    Hope this helps, and gentle hugs,
    Binney

  • ryder51
    ryder51 Member Posts: 11

    Hiya! ryder51: I finished my camp host job @ Lost lake resort in Oregon. It was a full summer! They had hired 5 hosts and 2 stayed. Our resort was the first to open in the state for camping,5/29 because of covid,we were overrun with people. Needless to say it was on for me. Up at 6 because it takes so long to get ready. I tried to put pain in the back seat and it would work till 2pm,after that I struggled to maintain. I would sneek a lay down time ,meditate,relax and those were few and far apart. I managed 5 days a week minimum 40hrs. Some nights a bowl of cereal is all I could muster up. Thanks for the extra meds from my new pain doc and sleeping pills. I managed through it,secound month I slipped in the rain,fell broke my right hand,the effected arm and hand. The hand surgeon I saw didn't even address the brake,he was all over my left hand telling me it's beyond any repair he could do. I am up for a second opinion on the 11th. So I don't use my right hand at all,but good news I have not had a lylmphodemia attack since I fell. No club hand anymore. I was at the rumatologist office and he took x-rays of my hands and feet. The doctor pointed out a second brake in my right hand. I have no muscle control of my right arm and my hand is cold to the touch and totally asleep all the time. I told the doc I have no clue how I broke it this time. So I needed more drama in my life and I have a hernia attack, my intestines are trapped outside! off to the ER! I am 30 miles out in the sticks! The ER doc was able to massage back in the bulge.Sept in for surgery, the forest service shut the forest down due to fires,so all worked out. In the interim I broke 3 teeth, I now have to see a face surgeon because they are afraid my cums will not heal . More cancer shit! The last week at the resort,I put the emergency brake on an went over to help a camper,got him on his way,turned around and my dodge dulley was headed at me gathering speed with the door open,I jumped on the running board reached over instinctively with my bad hand cought the wheel which grabbed my hand an violently poped my rist out of socket,I lost control fell back out of the truck on my bad side barely missing the back wheels. Thus ended my great summer. Back in the ER again,they said they never seen such bad swelling, shit try lymphodemia!!!


  • minustwo
    minustwo Member Posts: 13,389

    OMG Ryder - what a horrible round. Hopefully things have calmed down and you're on a more even track now. And glad you were safe from the fires too.

  • jojobird
    jojobird Member Posts: 99

    Hi everyone,

    I'm so gladto have found this board. I know Marian from the recurrence board, but am otherwise new here and so grateful to feel less alone.

    My right arm is completely paralyzed. I do have some very small finger movement, but otherwise my arm hangs like a dead fish. It started in January, three months after my second round of radiation. I have had two sets of radiation- the first for my lymph nodes and chest, the second for my right arm.

    I wear both a compression sleeve and a sling, and I do PT exercises each day. But I'm just so down. So sad to lose my writing, cooking, hugging arm. It's worse than the mastectomy, frankly.

    The physiatrist says it's incurable. I'm not in much pain, but add the stage iv diagnosis and it's hard to see the light of day sometimes. I'm just feeling overwhelmed I guess. I mean, RIBP, lymphedema, and lung and back mets.

    Not a good day.

  • binney4
    binney4 Member Posts: 1,466

    Jojobird, definitely not a good day! I'm so sorry, but so glad you're here with us. The good news is there are work-arounds for many of the issues that come with this lousy condition. It does bring out our innate creativity, that's for sure! There are aids for instance to learning to write left-handed, and a myriad of kitchen helps for cooking (and for washing up, which is equally challenging/frustrating!) As for hugging--you're right, that one's a real downer. But receiving a two-armed hug is still and option and I'm hoping you have a hugger close by to take care of that for you. Either way, I'm sending you a cyber one, with all my wishes and prayers for a better day today.

    Gentle, hugs,
    Binney

  • jojobird
    jojobird Member Posts: 99

    Thank you do much, Binney!

  • Devinomega
    Devinomega Member Posts: 1

    Hey, so. I wanted to introduce myself to this thread. I was 29 when I was diagnosed. I got radiation and now I'm 31 and was just diagnosed with RIBP. It's sorta scary from up here watching the start of my arm go from an occasional flutter of tingling to painful tightness and sensitivity. It certainly seems as though things look pretty grim for my future! But I haven't read through every comment on this thread. Maybe things are different.

  • binney4
    binney4 Member Posts: 1,466

    Devinomega, welcome to bc.org. Sorry for the reason you're here, but glad you found us. There is a wealth of information on these pages, which I truly hope will be of help to you on this journey. Hopefully others will be by with a welcome shortly too.

    Gentle hugs, and please tell us how we can help!
    Binney

  • ryder51
    ryder51 Member Posts: 11

    Hiya all! I just moved in to 55+ complex, brand new apartment. I had to because RV living was getting really hard with my medical stuff! Well my cum surgery and implant is a sucess so far! Yeah! I would daily talk to the Great spirit and in doing so kept my brain from inducing more fear over it not healing! Healing the cums after radiation is a huge issue! I have seeked help in the past to learn meditation to help with my pain. I use it to bring my blood pressure down,seek guidance,calm my over self criticism and I am one to say it works! I was sitting in the dentist chair pleading with him not to cancel,high blood pressure. I asked for 5 minutes to meditate, I brought it down 40 points! He wouldn't put me under for the procedure until I had. Now I am doing the same for my shoulder surgery on 3/31/21. My fall back in Sept. tore the rotater cuff, tore the bicep tendin which snapped back down my arm. Severe arthritis, fluid build up 5 things are to be repaired which turned it into a long procedure. This is my good arm! I spend 3 to 4 days in the Hospital then up to two months in recovery, a rehabilitation center. Nothing is never easy with me,the Surgeon said he might not retrieve the tendin down my arm,his fear : if he nicks a certain nerve it would parrilize my left arm. I told him to grow some bigger balls by then and go for it! We laughed, but he new I was serious. The pain in the arm just driving now I asked would still be there if you didn't right? Yes he said,I said you gota Doc! As it is I hardly drive now! So I am trying to find a good place for my St.Bernard/Shepherd mix.for two months! They want more for his stay then my rent is!

    I thought I would share some tricks I have learned being one armed each post so I spread some positive: So you know those plastic covers on liquid containers with the little ring, I use the largest diameter wooden spoon handle,slide it through use the container top for leverage and gently lift up. Works on milk etc. I even did olive oil,propt it up against the sink inside! And another handy item in the sink is no slip shelf paper ( plastic sheet with no slip pattern on it) I cut a 6×6 inch sq place it on the bottom of the sink to help hold items from slipping while washing,so I trapped it in the corner of the sink. Works good. I got wordy again! I really feel bad hearing all of your cancer related stories, but the Young people getting RIBP! That is down right, shitty ,the two 30 year olds OMG, I am 70 it is devastating to me! All I know is staying positive is a challenge. I hope you all the positive you can muster up and receive 🙏



    I
  • flashlight
    flashlight Member Posts: 311

    ryder51, Seems like you have a good plan. Hope you find someone to take your dog. Good luck with your recovery and thanks for the tricks/hints!

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