Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments
Tuesday, August 16, 2011 2:30 PM
Here it is - the first installment of my trip to MSKCC Rehab and Dr. Michael Stubblefield evaluation.
Sunday, Aug 14th – Arrive in NYC! Good smooth flight, quick taxi ride to the hotel… raining and 70’s – much different than the TX heat we left behind!
Monday, Aug 15th – Started with MSKCC Financial Center – to obtain my insurance info and explain benefits – from there I headed to Dr. Michael Stubblefield’s office for my initial evaluation/consult. It began with a staff physician and medical student asking many questions regarding my past medical activity, specifically the Hodgkins Disease and related radiation/chemo treatments in the 80’s, followed by the additional Breast Cancer radiation/chemo received in 2006. What was refreshing, and encouraging, about this initial discussion was that they understood the damage I have, the related nerve pain, muscle loss, and addition of heart complications. I didn’t get the usual ‘deer in the headlights look, and shrug of the shoulders, of I don’t know what to do’, response. They then examined me and tested strength tested my fingers, hands, wrists, forearms, biceps, shoulders, neck, legs, and feet. After which, they discussed with Dr Stubblefield. He then came in, introduced himself, and said I believe we need to move to a larger room. OK – wasn’t sure why at that moment, but OK just the same. As we walk into the larger examination room, he asks if I mind if his physician and intern staff join us so he can share our discussion and his examination for teaching/learning purposes. I welcome that - the more the merrier! The medical world desperately needs to learn about this virtually unknown, survivor quality of life, problem. So, in came 5 additional Drs. He then asked me questions about pain, numbness, paresthsia and performed some basic strength tests. He physically examined me, discussing out loud his findings for the benefit of the room – and he showed us all MRI graphics of patients with radiation induced brachial plexus involvement, along with photos of neck, back and spine distortions from the radiation nerve damage and related muscle atrophy. He indicated that my severity of nerve damage is mostly from the Hodgkins Disease mantle radiation from the early 80’s – the Breast Cancer overlapping radiation of course added to the progression. I am apparently in a 1% population of overall patients he has seen. Interesting indeed. It doesn’t make me feel better, or worse, necessarily, as I believe I am in the right hands for diagnosis/help now.
The loss of right hand/arm functionality, from nerve damage, is not repairable. The neck, shoulders, and left arm nerve damage, muscle weakness, and overall pain, is attributed to the radiation, and is also not repairable.
The numbness, paresthesia, pain in my lower legs, feet and toes, would not be related to the mantle radiation.
He has scheduled an EMG for Wednesday, that will be performed in the office. I also have been scheduled for two MRIs next week in the MSKCC hospital locations – one for the brachial plexus, the other for the entire spine. These will rule out any other potential issues, like a tumors – benign or malignant - other nerve disorders, spine problems. Also, they will measure the level of damage done, allowing a full diagnosis and prognosis, followed by a plan of action.
Dr Stubblefield is an incredibly personable and knowledgeable MD. He specializes in helping the survivor, surviving the treatments that saved their lives. Bringing back, some of the quality of life those of us have been missing for years. He works closely with the Physical and Occupational Therapy center and directs them to treat the individual needs of each patient. He will also share the plan for PT/OT with my Doctor back in Texas to continue once I return.
After my meeting with Dr Stubblefield, I headed to my first Physical Therapy session. There, I received a very detailed examination, and analysis of my physical condition. Measurements and notations made. During the entire time, they explained clearly what they were seeing, doing and documenting, along with why. This allows them to focus on the areas of weakness, which will in turn allow strengthening in core areas. Most of yesterday’s time was spent on analysis and planning. Although I did get some homework! Diaphragm breathing while lying down – and learning how to keep the side-stitches under control. ;) I’m already using muscles that have not been used in years. Also, a big change for me – will be practicing, and eventually mastering, sleeping on my back. Very big change – I have been a stomach sleeper for most of my life… and if not on my stomach, I am on my right side… two positions that in the long run do me no good. So, sleep positioning with correct pillow placement is in my future. Apparently, it’s not normal to toss and turn all night long… who knew?? Correct positioning equals more restful sleep… J
My first Occupational Therapy is later this afternoon… I’ll write more tomorrow, after my EMG and PT/OT sessions.
Breast Cancer Survivor
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin; last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S