Nerve Damage - CIPN & RIBP

Hi Cindy,

So glad all went well...sorry we weren't able to meet on the 18th I kind of thought that might happen based on your telling us how late your 1st meeting with Dr. Stubblefield went...can't wait to hear about test results and final plan for you to take back to Texas.

My 1st meeting went well, I liked him too...he changed my pain medication and I was to have MRI of brachial plexus on Saturday 8/27 but we had to reschedule to 9/12, same date I'm already scheduled for my OT evaluation.

We were evacuated from Long Beach Island on 8/25 and with Manhattan closing mass transit and bridges due to Hurricane Irene, we were afraid we'd be stuck there so we changed the appointment.

That storm was looking a lot worse as we made our way home to Syracuse...thankfully, it was down-graded but sadly it was done after our decision to leave had to be made.

Stay well, await your next up-date, Pat 

So strange...all have been in response to third installment!

SoCalLisa, have you tried Tai-chi?  It is really good for balance.  I started classes a couple months ago, and hadn't been for a few weeks because of hectic schedule, and have found I am much more unstable than when I was doing the classes.  I hope to get back to them soon.  It is very gentle movement, but very focused, and the instructor said it is very good for CIPN - he says he has worked with several people with this problem.

Hi Cindy,

I echo Linda's comments and want to add how great it's been to follow your incredibly well-documented story. Your detailed account has been key to understanding your situation. Myself and others have a starting point for comparison regarding our own personal issues.

I have excruciating nerve pain and paralysis in my right hand, it feels like it starts in my fingernails and proceeds through my hand to wrist and now is going up my forearm to elbow. My hand is deformed with painful swan neck deformity most notable in the three middle fingers. I have limited gripping ability between the thumb and index finger, otherwise not much left in my right dominant hand.

It's taken time, many prayers, the support of family/friends and lots of internal struggle to overcome the anger, to find the courage to accept that I have lost the use of my right hand/arm and need to find a way to go forward with my life. 

I 've never been a pessimistic person. I've always been an optimistic, positive person with a zest for life and a plan for my future, so this has truly thrown a 'monkey wrench in my life' as my dear departed father might say, So, yes, I have and will make whatever changes are necessary to go forward!       

I have an appointment with OT and to do the MRI of my brachial plexus on 9/12/11 at MSKCC. From your note, and based on my symptoms, if no cancer, I can assume I too have may have damage to the lower and middle sections of the brachial plexus. 

I love Dr. Stubblefield too and am so impressed he has decided to use your case in his presentation. It should do so much to get the word out to the medical profession. You should be very proud of yourself for being one of the early case studies to move our plight to front and center! 

I hope and trust from this effort prevention of the problem will become foremost, with perhaps ways to effectively treat the nerve pain next, and maybe at some time in the future even finding a way to fix the nerves of those who have suffered permanent damage.

So, thank-you Cindy for your immense contribution to our cause, I am deeply indebted to you. And, I am encouraged and anxious to know my own results down the road.

I plan to continue as you have done with a report on my findings as soon as they become available. May God bless you Cindy and keep you strong.

Sincerely yours, Pat

OK, so I'm finally getting a chance to update my story from my last entry of 9/8/11.

I had the MRI of the brachial plexus 9/12 - it was normal, no cancer - Dr. Stubblefield wanted it read by an MD who usually did his MRI - over a week went by due to Dr. Stubblefield's vacation when he called to say, on second look, there were mild changes to the lower and middle sections of the brachial plexus consistent with RIBP.

He didn't understand why my symptoms/pain were so severe, yet findings on MRI were fairly normal. I had called him twice to up my medications, he has inched up the strength of the Fentanyl patches.

My OT evaluation went well, the therapist gave me several modalities to help my hand, she felt with hard work and by using a therapist with a CHT designation, that is a Certified Hand Therapist, I may be able to reverse the swan's neck and regain the use of my fingers, and hand.

I've been seeing Kathy Rake, CHT two times per week for about 5 weeks, and I do see improvement, but it's extremely painful, slow-going work. It took me over 1 year to get here, I expect it will take at least that time to get it back.  

I saw Dr. Stubblefield on 10/24, as a follow-up, he performed an EMG also while I was there. I think he likes all tests done or repeated by his group to verify the findings. At any rate, though painful, it was not really a  problem to do again.

When I got home I clarified a few things vis email with Dr. Stubblefield:

1) My diagnosis is RIBP

2) It affects the use of my median and ulner nerves, they are not functioning, or not charging the muscles correctly, which causes the problems with my fingers, hand and wrist. These nerves come out of the lower and middle plexus, which suffered radiation damage.

3) With the lower and middle plexus involved, I will experience most involvement in the hand, forearm and triceps areas. My deltoid and biceps are good and hopefully will stay that way.

4) My pain is still not under control even though Dr. Stubblefield increased to 100mg Fentanyl patch, every 48 hours, with Oxycodone 5mg for breakthrough pain, maximum 12 per day. I will need to call him again for adjustment again.

My pain is absolutely excruciating, I don't understand why it cannot be controlled, the only relief I get is lying down. I'm going to ask him to explore that further. Seems there should be an answer related to what changes in my body when I lie down that eliminaates the pain?

If anyone knows the answer or I find one, I'll update my status here. Thank-you to all for your support, it's more appreciated than you'll ever know, sincerely yours, Pat

Hello Everyone,

I wondered if anyone is a Nurses with CIPN? I am a Nurse and I have CIPN and due to the numbess,tingling and needle prick sensatios I endure I am limited. I recently was asked by my employer to come back to work with my limitations that was accompanied by a MD note. Once I started working the position my employer told me about never started.My employer informed me they would require me to do patient care visiting patients in their homes. I expalined to my employer my limitations as discussed prior to me returning back to work did not include patient care due to the neuropathy.My employer stated I could use an automatic cuff (instead of the cuff that require me to manually inflate the cuff which requires dexterity I am unable to perform at this time).I tried to explain to my employer it is more than inflating a b/p cuff my fingers are numb I cannot feel a pulse (employer response: the patient will not have a pulse taken on that visit) I can not stand  (response from employer we will take a nurse poll of the patient houses you would have to stand in).Although  my Physican note clearly states my limitations my employer seems to ignore what my limitations are.

At this point I decided my employer either does not believe the limitations i have with my neuropathy or does not care. I did not try to go on with the many scenarios of how my neuropathy interferes with caring for a patient . I feel frustrated I know my employer probably looks at me and does not see a person that endures pain and discomfort. I do not visibly show discomfort nor do I complain.I have always been a person to try to endure.This neuropathy is a different animal I told my husband when I cared for patients prior to my neuropathy at times depending on wear they lived I had to park my car and walk a block or more depending on the location.Then there are the patients who depending on what care you have to give may or may not have buttons or zippers not to mention some patients due to their condition you have to stand and bend to perform care. All of which was fine before this happened to me.There are so many more scenarios that my neuropathy would interfere taking care of patients.

I have always been  a "worker bee" never without a job sometimes two at a time.To be in a situation where you a limited is very frustrating. To get through chemo and mastectomy surgery and all the stress that comes with it to have to now endure my employer adding more stress to me seems so unfair.I wish there was more education so employers or those who think patients with CIPN may not look like they are in pain or verbalize they are in pain does not lessen the fact we are.If they could feel how my feet burn when i am at work from just walking down the hallway but I endure because I tell myself I will sit down and relax my feet when I return to my desk.Or when I have to walk to the next level for something by the time I return upstairs and return to my desk my feet are on fire and throbbing.I told my husband I know i have to stop myself before walking but at the time a rationalize with myself and say"it is a short walk"Or "It is only down the hall" Only down the hall is like forever for me right now with this neuropathy.

I know not helping myself and I have to stop before walking which is hard but it is the natural thing to do but not for my condition.The stress of knowing what my employer wants me to do does not help.When  I get home after work my feet burn like no tomorrow and my hands are now starting to catch up with my feet.I do some typing at work I am now using a pencil to type on the keyboard and that helps a little.

I wondered if there are any nurses that are having the same trouble I am having at work? if so I would love to hear from you.And if there is anyone that knows a nurse with my same issue.I know on paper my physician will inform my employer I am not able to care for patients at this time it is the stressful environment I am not looking forward to everyday. Any advice?

Jen, I am also not a nurse, but know the frustrations of  not being able to perform in a chosen career due to the neuropathy.  One thing I have tried to do more of is to articulate what I CAN do rather than what I CANNOT do.  This can serve as a discussion point with your physician, who can then write more specific guidelines for your employer, and you can use this to discuss with your employer options that will make the best use of your knowledge but will not harm you (or patients, for that matter!!).  I assume you are a floor or ICU or special unit nurse who needs to be on your feet most of the time.  There are positions in case management, managed care, making sure providers are paid, teaching, working in a poison control center, phone triage and nurse information lines, etc.  Mostly, you need to look at what you can do and what you LIKE to do.  That's not so easy when you are grieving the loss of a previously healthy body that would let you perform all the activities of your chosen career, but it does help employers and others to help you.  Rather than giving them a menu of what you cannot do, give them a menu of what you CAN do, and see if they can work with that a little better.  Prayers for peace and healing - this is a tough road.  PM me if you want to toss some more ideas around.  My younger sister is a nurse who no longer does bedside nursing.

Cindy and all,

I actually didn't have breast cancer butt have gleaned much information from various breast cancer sites. Cindy has provided a wealth of information. I was actually diagnosed with a soft tissue sarcoma deep in the scapular muscles in September 2010. I received 25 rounds of radiation which wasn't bad until the very end when I discovered the skin in my armpit was weeping. Then it was three weeks of "heck" waiting for it to heal. I had surgery in December 2010 where they removed the muscles over the right scapula, part of the deltoid and part of the lat muscle. I had limb sparing surgery because there was a possibility that the cancer had infiltrated the humerous. So, a partial shoulder replacement was done leaving me with no rotator cuff. Two days later a muscle flap reconstruction was performed to try to provide protection to the scapula. All went well, I was knitting within two weeks and started physical therapy. 

At the end of January I started chemotherapy which set my physical therapy progress back. I finished chemo, along with 6 blood transfusions and 2 platlet transfusions in April. As soon as I recovered I started PT again. I noticed some numbness in the fingers of my right hand but it was chalked up to neuropathy. I went back to work, got my writing back up to speed, could keyboard as fast and accurate as ever and continued to knit. I could even put my car into gear with my right hand. In July I went on vacation and noticed that my fingers were fumbly trying to knit. By the end of August I could no longer write with my right hand and had resorted to one handed typing. The physical therapist didn't know what to do for me because I could no longer hold onto the equipment.

I had an EMG, MRI, saw the neurologist,radiation oncologist, oncologist and surgeon. RIBP was the consensus. Right now I am in the midst of hyperbaric oxygen treatment which may or may not help. I saw Cindy's posts about Dr. Stubblefield and decided to give him a shout. I just got back from seeing him. he said exactly what I expected. There is nothing that can be done to reverse the damage. That will either happen on it's own or it won't. He prescribed Lyrica to replace the Neurontin and gave me prescriptions for PT, OT and lymphedema therapy. I haven't had issues with lymphedema, but he saw me at my absolute worse. I'd been in NYC for two days before I saw him and had been walking around a lot. When my arm hangs down for too long, like when walking my palm will swell.

So, I'm off to find a therapist here that can think outside the box when dealing with me. I have no good shoulder movement and can't hang onto an elliptical or arm bike. I go back to Dr. Stubblefield in June. Hopefully I can get better ratings than -4 next time.

I don't have the pain most talk about, or I just don't recognize it as pain. I have a high tolerance. I am uncomfortable and frustrated and do have the electrical feelings in my fingers and a vise-like feeling. Until about three weeks ago I could extend my fingers voluntarily, but I have lost that ability.

This just sucks, but I have my arm. Many years ago that wouldn't have been an option. And my handle, Tubthumpin? It's a song; I get knocked down, but I get up again ....."

Lori 

Iam totally confused, I have read some threads & not sure if the pain I have is CIPN.  Started about 6 mths after last chemo treatment, in my left arm.  Feels prickly, stinging, heavy, fingers are numb.  Sometimes its excruciating pain & other times its managable but there is pain ALL the time.  Some times if I move it the wrong way I see stars it hurts so bad.  I dont sleep thru the night it hurts so bad, pain meds dont work (I have taken 2 vicadin & didn't work).  I seen my Onc who didnt give me any answers & said to use aspercream (didnt work) & my surgeon.  He said because I dont have full range of my arm (where nodes were removed) that is the reason for the pain.  Told me I needed to start exercising or go to PT.  I cant imagine this never going away & living with this.  I expected once chemo was over Iwould bounce right back, I guess I was delusional

Michelle, the pain you are describing is most likely NOT CIPN - that usually affects fingers and toes and is usually both sides. Because your pain is in the ALND arm, it could be due to radiation, but it could also be scarring, cording, or even LE. Seeing a PT who can do myofascial release, and who is also certified in LE therapy would be your best bet. He/she can measure your arm to be sure it is not LE, and work with you on scar release. One of the several neuropathic pains I am dealing with is similar to what you are describing, and the myofascial release has been a godsend. I am following that up with movements such as qi qong and yoga, and the more I keep the area moving/gliding, the better I do. I still feel the pain and tightness, but it is better. I also had cording, which the PT worked on and that completely resolved the issue.



However, if it is due to radiation damage, that is a whole different issue, and as Cindy said above, getting the right diagnosis with the right studies can save you lots of angst in the long run. If your MO and BS can't help you, find a palliative care specialist or pain management specialist to help sort it out. These are underutilized resources!



Best wishes and gentle hugs.

LE = lymphedema. Good luck with the PT. When did you finish chemo? There is a phenomenon called "coasting" where the neuropathy seems to get better, then gets worse, even months after chemo. I think there is testing that can help figure it out, but my MO and neurologist didn't do any testing at all - they just based the diagnosis on the timeline because it was pretty clear-cut in my case, but I think it is possible to figure it out with those cases that don't follow the textbook description.



I also found that fatigue can worsen the pain, so getting rest is really really really important!



Best wishes.