Nani,
Dr?Did you have Frank or Carl Culiccia as your surgeon?
This is what I found on the Internet about their practice
Frank (the younger one)
http://www.culicchianeuro.com/p_culf.htmlCarl (the older one)
http://www.culicchianeuro.com/p_culc.htmlBoth appear to be "neurologists".
Did you ever have a neurotologist or neurosurgeon also attend/do the surgery?I spent a month in the hospital and several months on rehab. I still have trouble walking and can barely feel my right arm or foot. I also have a slightly limited use of my right hand, used to be none.
Numbness and limited mobility in limbs?The inability to feel the arm and foot sounds like MORE than neuropathy that can, on rare occasion, be residual from tumor removal but does not usually linger.
Here is a free encyclopedia page that explains “neuropathy†more
http://en.wikipedia.org/wiki/NeuropathyYou need to ask your doctors if you had a
stroke during surgery. Subsequent MRI’s since the surgery should show this.
Stroke?It is NOT normal to be in hospital
a month after surgery for an acoustic neuroma unless there was serious post-op complications- such as a stroke.
Size?You mentioned
inches in your initial post for tumor size. This range of
1 ½ - 2 inches could range anywhere from 3cm – 5 cm. This would have you in the large to X-large category for tumor size. Can you look at your radiology reports (you have a right to have a copy of ALL your medical documents in your possession so if not ask for these- by law your doctor HAS to provide these to you- at no charge). If you could identify the exact dimensions of the tumor, before surgery- this would be helpful.
Sometimes XL tumors can cause residual affects.
Physical Therapy now?Are you doing any physical therapy now- since hospital release? More specifically have you had any vestibular therapy (for balance)?
My left eye is also temporarily sewn shut due to nerve damage. I have read that this effect has about a 50% chance of occurrence in AN patients.
Eye?Nani- you need to know that sewing the eye shut is very old school. Were you referred to an ophthalmologist at all? The best way to handle eye issues is to get an eye weight. I used a temporary eye weight as it was expected that the eyelid function would come back. For those who need permanent help the implanted eye weight does the trick.
Here is the temporary eye weight
Link
http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights-FAQ.htmPDF file brochure
http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdfBell Palsy website with information about eye care
http://www.bellspalsy.ws/eye.htmBasically by sewing the eye shut your doctor is making you temporally blind in one eye to protect the cornea- where there are MUCH better ways to do this. Because you have not just only lost your hearing but vision (albeit vision is temporary) no wonder you are having problems walking and balancing. Your vision needs to be returned promptly with less archaic methods than stitching the eye shut. (I cannot believe this is still be done) This will interfere with your recovery. It is 1 ½ years since your surgery- you should NOT still have this eye stitched shut.
Other facial issues?Do you have any other facial nerve issues- besides the eye such as facial or tongue weakness? (Believe it or not the eye issues is not from the optic nerve but the facial nerve, as your eyelid could not close- which is a facial nerve/ muscle weakness issue).
Keep asking us questions… and providing us with more details… Hopefully some others can chime in here to help and support you.
I am sorry you are going though all this. You are so young (age 24) ... gee I am old enough to be your mom (I have girls- one a teenager)
Motherly HUGS to you.
DHM
