Dr. Duma never said

Dr. Duma never said there would be this extreme sensory loss from Gamma Knife. That was only a risk of MVD patients. This proves my nerves shouldn’t have been messed with, & probably cannot withstand MVD surgery. This is proof. When I asked for help because the pain was getting bad in my eye, they said they can’t help me-go back to your neurologist. I knew it, I’m the surgery that didn’t go well, & shut me down. This is a deja vu for me w/ my ulnar neurapathy. A doctor messes up, & shuts me out. I stopped taking the tegretol, it doesn’t work, & I’ll stick w/ the new med clozepam & gabapentin. I feel like a science experiment gone wrong. But, I’m blessed to have family to help me through it as well as this wonderful site w/ all of you.

Julie, I’m so sorry. I know I can’t make it better, but know that lots of us on this site understand and are on your side!! Stay strong. I hope the rest of the day goes well for you!

Blessings,
Melodye

Julie,
I’m sorry you have the sensory loss. But are you having pain from the numbness? I hope not.
I hope your new medicines will work.
Liz

Thank you ladies so much for your support! I really wish people could see the nerves go haywire across our heads, & understand why we feel the way we do. I don’t feel up to going to UCLA for a 4th opionion, but my co-worker thinks it may be a good idea. I’m actually trying to focus on my ultrasound this Thurs., my mamogram didn’t come out well. I think God gives us a lot of things so we don’t focus on one thing. And He believes that we can withstand anything. Have a great weekend ladies!

My neurosurgeon said that there was a very good possibility of sensory loss but, I didn’t experience any from the Gamma Knife, however, my GK did absolutely nothing for me and it has been 24 months, which is the longest my neurosurgeon has gone with the GK helping anybody. I think that you should speak to another surgeon and discuss the side effects of GK and whether it would be better to go to another surgeon. I’m sorry you are experiencing sensory loss and the horrible pain of TN but I feel so greatful to have families and the support of everyone here to help us get through the pain and the questions and the uncertainties, we are getting through it all together.

Michaela,
Thank you for the comment. I’m definitely thinking of seeking another opinion. The members on this site, family, & co-workers are better listeners than the doctors. Now I’m understanding why they call this the suicide disease-boy I thought migraines were bad before the TN. I’m just going to eat more chocolate!

julie,

this is totally incorrect medical information. your doctor has been misinforming, it seems, from the beginning. sensory loss is a major risk from gamma knife; it’s a destructive procedure using high doses of radiation. the area being targeted is a sensory nerve. consider the logic; a destructive procedure on a sensory nerve can result in sensory loss. gamma knife can produce profoundly disturbing results in some patients with nerve dysfunction. it is unfortunate you were not made aware of these risks as was your right as a patient. doctors frequently endorse new medical treatments on the principle of what is more lucrative, and not necessarily what is therapeutically better. i don’t know what your doctor’s intentions were, but misinforming you was unfortunately the result.

all procedures which require interaction with nerves carry a risk of damage, however, the MVD is the only procedure which by definition and practice, is non destructive. this means the intention of the surgery is to remove all offending anatomy off the nerve to allow it to heal and return neural activity to normal, thus stopping the pain signals. most people survive an MVD intact, coming out the same way they went it, and hopefully with less to no pain left. however, you now have a further injury to your nerve from the irradiated lesion compliments of gamma knife, so this can not be solved form MVD. on the positive side, your original pain which sent you to gamma knife can still be addressed by MVD if you have a compression. i know many people who have gone the way of gamma knife first and then went on to an MVD successfully, (the MVD did not take away the gamma knife damage).

lastly, it is not unusual for doctors to abruptly discharge patients when treatment is unsuccessful or worse, complications have arisen. this is unacceptable; it’s unethical and considered a form of patient abandonment. you have the right to have your questions answered and your pain be treated. if you find you are not receiving the after care you are entitled to, consider filing a complaint with the chief of staff at the hospital where your procedure took place, with the hospital administrator, and lastly with the medical board. patients need not be mistreated by medical providers.

the researcher

Dear the Researcher,

Your comments have helped so much, & make me feel better. I appreciate your input. I was in a situation like this before w/ my arm, & the doctor got a way w/ it. Though I was told by Physical Therapists & a another doctor he had screwed up their limbs. (Dr. Howard J. Marans @ Fountain Valley Hosp). I’m worried that if I do that, I’ll make it worse for my care w/ his other colleagues.

julie,

too often patients are left to manage the shortcomings of their doctors at the expense of their health. i am left to wonder; is this really your responsibility?

any punitive action taken against you after a formal complaint is lodged would be retaliation. this is illegal and you can take action against these doctors. doctors operate from a position of self preservation first and patient care second. they would be unwise to engage in such behavior and they know it.

good luck,

the researcher