Do you have the ideal healthcare network of individuals supporting your physical, mental, emotional, and spiritual aspects? Sally Richards does. She works with hospitals, neurofibromatosis (NF) organizations, government entities and patients in what she calls “a dynamic healthcare team.” Sally was diagnosed in 1985 with neurofibromatosis2 (NF2) a chronic disease with complex
considerations. The disease partially paralyzed the left side of her face and deafened her left ear after her first brain surgery in 1986 at 16-years-old.

As defined in Medline Plus, “Neurofibromatosis 2 (NF2) is a genetic disorder in which tumors form on the nerves of the brain and spine (the central nervous system).” In a question-and-answer format, Sally, a recent Society for Participatory Medicine member, talks about her successful patient experiences at Chicago’s Northwestern Memorial Hospital and elsewhere.

(SPM) How do you manage the diverse clinicians at Northwestern with the complexities of NF2?

(S) I have brain and spinal tumors, so the medical professionals I work with include neurosurgeons, radiosurgeons, neuro-ophthalmologists, internist, spinal specialists and physical therapists.

Yes, they are there to “serve” me, but I’ve found working with them in a team approach empowers me with all my NF2 complex considerations. My Northwestern clinicians and I have a mutual respect for one another and we have extensive online communications. They typically return my messages the same day or a few days later. In late 2009 as a patient I adopted a stronger “business” focus towards my healthcare – less emotion and concentrating on remaining level-headed and decisive with my care team while paving the way to ideal participatory medicine.

(SPM) How do you feel participatory medicine has affected your healthcare?

(S) It’s allowed me to make more informed decisions. My clinicians listen to me, listen to my ideas and concerns, and treat me as a valuable member of my healthcare team. I’ve achieved and honed a confidence level from our interactions. To have a better idea how we work together Northwestern wrote a patient profile article about me.

(SPM) How many NF2 surgeries have you had?

(S) I’ve had five brain surgeries, in 1986, 1988, 1994, 2004 and 2009; one series of radiation called Fractionated Stereotactic Radiosurgery for my right acoustic neuroma (tumor on the right side near the brain stem); and two facial surgeries to improve my facial paralysis.

(SPM) What are your symptoms?

(S)

  • Total hearing loss
  • Double vision
  • Balance issues
  • Bilateral facial paralysis
  • Lower back pain
  • Headaches
  • Tinnitus, the medical term for “hearing” noises in your ears when there is no outside source of the sounds. I hear ringing, blowing,  roaring, oceanic noises, buzzing, hissing, and a low hum.
  • Short-term memory issues
  • Permanent nerve damage on my lower left leg

(SPM) What are some of the organizations on your NF2 team, and how do you work with them?

(S) I’m a social entrepreneur for neurofibromatosis2, dedicated to NF advancement and to the NF organizations I serve. Being a part of the solution is very empowering. Here is some of my NF2 network:

Northwestern Memorial Hospital in Chicago

NMH is my multi-disciplinary NF2 medical team. In addition to receiving excellent NF2 healthcare, I help to strengthen Northwestern’s Neurovascular
Cranial Base Clinic by partnering with them.

National Institutes of Health (NIH):

I’ve joined the NF2 research program at NIH and will start this exciting program at the end of June 2012. This program greatly increases research for
NF2. Many of my NF2 comrades are apart of this NF2 program.

NF Network

I’m on the Board of Directors at NF Network, a national non-profit network based in Chicago and serving families and individuals  affected by NF. I am the NF2 Representative and collaborated on the proposal for the Department of Defense’s Congressionally Directed Medical Research  Programs (CDMRP) for FY 2012, requesting $16 million to continue the Army’s highly successful Neurofibromatosis Research Program (NFRP). I also do web site support, fundraising, advocacy and am the chairman for NF2 webinars.

Children’s Tumor Foundation

Often I go to forums and symposiums that will detail CTF’s research, fundraising and education efforts. I also have the opportunity to network with fellow NF2 patients. Additionally, I raised funds with NF Endurance and my fundraising page.

(SPM) What are some of the NF2 patient online communities of which you’re a member?

(S) NF2 patients have a strong online presence.

The NF2 Crew  is an excellent online communication for NF2 patients and has a Yahoo listserv. Patients, families and caregivers all are members. NF2 is rare, and this brings
people together globally.

Facebook has incredibly brought many of us together in such groups as:

NF2 Crew – Closed Group is an NF2 specific group for all those with NF2.

The nf2smileproject. This is a page for people with nf2 who lose the ability to smile. Losing your smile and facial movement can be devastating. Non-verbal communication is extremely important. Usually one loses facial function from brain surgeries and the sensitive nerves neurosurgeons work around to remove all or part of the tumor.

NF2 Parents is a group for those with NF2, family, and /or caregivers. Parents may feel overwhelmed at the diagnosis, and sharing with other parents is a tremendous support.

Young NF2 is a group focuses on the young with NF2. The diagnosis and challenges can be extremely hard for a young person. Adult children are encouraged to be members as well as to share their NF2 experiences from an earlier age.

(SPM) Are there additional NF2 advocacy groups?

Advocure NF2, Inc.   is a tremendous site with an abundance of NF2 resources. They are an advocacy  group.

(SPM) How do you e-communicate successfully as a patient with providers worldwide?

(S) NF2 has complex considerations. For instance, I am on a time frame that fluctuates every six months to one year at having head and complete spinal MRI’s with and without contrast. Yes, my personal medical team is at Northwestern in Chicago, but I also send my MRI’s to various NF2 experts at different hospitals inquiring about the complexities of NF2. For example, I may inquire with another NF2 expert about radiation. I send them my scans, questions and receive invaluable information from them. Of course, if I want a detailed discussion on my healthcare I need to meet face-to-face.

Learning the diverse responses to a medical concern helps me to strategize my NF2 healthcare and create informed questioning for my Northwestern medical team.

(SPM) You’ve lost your hearing later in life – how does this affect your communications?

(S) At my Northwestern doctors’ appointments someone types for me, I receive the script from the conversation and we also have extensive online communications.

(SPM) What suggestions do you have to other patients?

(S) These are words that I live by and have told many different NF individuals and organizations: To be successful with your NF strategy, you need to research and plan and strategize and make informed, well thought-out decisions, rather than letting your heart or emotions lead you. This is accomplished by working with organizations that propel action and accumulate resources towards the betterment of your medical ailment.

The benefits of working with these organizations are two-fold: 1) You’re able to partner with individuals who work tirelessly to achieve a better life for those with your ailment and, 2) It’s life sustaining, guiding you and strengthening your journey through life.

We laugh, cry, struggle, praise and support each other.

 

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