Unable to return to work

[msuscottie]

Some of you may have read my prior post ... I'm headed into stage 2 surgery and my fear here is facial paralysis. My current job is someone high profile and I'm constantly meeting with higher level executives. If I have facial paralysis after surgery I don't anticipate having the confidence to continue this. Have any of you faced a similar situation? I've been trying to think of new jobs where I won't have to come in contact with too many folks. Is there any type of disability insurance that covers that kind of thing? I'm ignorant when it comes to all of the disability stuff. I know everybody says, "just suck it up, nobody cares if your face is droopy or that you can't blink," but I just don't see it as being that easy.

Thanks for any advice!

Scott

[Mark]

Scott,


Is there a reason that you are not considering radiosurgery for the treatment of the residual tumor? I know at Stanford where I was treated it is not uncommon for larger AN's that are not candidates for radiosurgery initially to be "debulked" and have the residual amount treated by CK or GK. The difficulty ( some would say the art) is not in reducing a 3.5 cm to a .5 cm tumor, but in how the surgeon navigates the last 10% of the resection around the cranial nerves. I also have a job that frequently involves executive level interface and I have a lot of empathy for your concern. Beyond trying to save my hearing which was ( and is still) pretty good, I was pretty convinced that any damage to the facial nerve would have an impact on my job. At any rate, I would encourage you to pursue the FSR option rather than endure another procedure.

Mark

[nannettesea]

Don't know what you mean by stage 2 surgery.  They usually don't know how the facial nerve will be affected till they go in.  What size is your tumor?  Mine was 1.7 cm, highly adherant to facial nerve but had a great outcome, other than not being able to cry out of the affected eye.  I have terrible dizziness 4 months out, however, and have applied for disability after losing two jobs.  There is a 5 month waiting period, and takes 3-5 months to be approved/denied, then start an appeal process in the event of denial.

I think the suggestion about radiosurgery after partial resection sounds like a good option for you.  But the other person who posted has much more information than I.  I could care less about having lost perfect hearing in my right ear, but they have really good hearing devices now--the CROS, and BAHA.

[Ned]

I have a similar job as yours.  Several years ago I had Bell's Palsey (same side as my AN) my face was distorted for about 9 months and I didn't work, afraid of what people thought, sunk into major depression.  I got on anti depression meds and slowly went back to work, you can do it, not easy but you really can.  Unless you have disability insurance you can't get benefits, you could try Social Security but it will be a tough battle that I don't think you will win.  I often use my disabilities as opportunities, I am in the insurance business and my story is a powerfull one regarding disabilty insurance as well as estate planning.  As others have said , I would consider FSR.  Not knowing if the tumor is attached to the facial nerve until the surgeon gets in was a major reason I chose FSR.  Good luck!

Ned

[msuscottie]

I've had three different Dr's tell me that radiosurgery would not be a good option because of 1) the location of my tumor (Up against the brain stem, embedded in the facial nerve, 2) My age, I'm 30 and FSR typically stunts the growth of a tumor but doesn't elminate it. The chances are good that even with high doses of radiation, the tumor could still grow back down the road, 3) recent studies are showing a 2-3% chance of malignancy from radition treatments. I think the main thing is that radiation doesn't get rid of the tumor, it simply stunts it's growth. At some point the tumor will start searching for blood sources again and will pull blood from wherever it can in the brain, blood that is essential for other parts of the brain to work. I'm going to go into another surgery and hope they can just get rid of this thing for good.

Stage 2 surgery simply means that I'm having 2 surgeries to remove one tumor. I had a very large tumor and the safest way to remove it was to do it in two stages. The first stage was done last October in which they removed the portion of my tumor embedded in my brainstem, the second stage will remove the risidual tumor from the ear canal and facial nerve. They will also use a different approach for the second surgery. I just found out that the the surgery will be on Feb 1st, Yikes!