Needles and Pins

[Dealy]

I really did not know what else to label this topic. This past week I have had increased sensations of small shooters or sappers to the right side of my face. Feels like needles and pins (Tumor Side) .I have been on Celebrex for inflammation but apparently it is not being too effective at this time. I am aliitle over 13 months post FSR Radiation. My last MRI (one Year) showed tumor had swoll in volume but decreased and is shrinking in volume and showing signs of necrosis. However-Friday it got so bad that inside my mouth-teeth-lips-even talking or eating sends these shooters racing too my eyeball. My wife called Johns Hopkins ER this morn twice with no results. Told her would should contact a local neuro. Our local GP said that if this continues I may have to take Neurotoin (Spelling may be wrong) All I know is that my head feels wonky-my hearing is more distorted and tinny sounding- and these shooters are not good. They do not last long. Has anyone with radiation treatment experience similiar outcomes. My mind wants too tell me this is the result of the tumor relaxing it's grip on the facial nerve which has been misplaced and distorted by the tumor since 2005. We are going too call JHH on Monday and talk too the Head Neuro too get his input since we have no luck with the weekend goobers. Any input appreciated for those with similiar occurences. Thanks-Ron.

[mema]

Ron,                                                                                                                                                                                       


I guess what I've experienced over the past 21 months could be called shooters, But their in  my brain not face .  I get pins and needles in my head all the time, AN side.  My new neuro-oncologist said it could be nerve damage in my brain causing spasms.  What I have found out is that the Drs. who did my radiation will never admit to that.  They are afraid of being sued.  I have never sued anyone in  my life and never intend to.  I even almost lost my husband over a surgery mistake, which the surgeon admitted was his fault.  Sue, no I just want thes doctors to help make us better.  I hope you can get an answer from JHH.                                                                         



                                                                  mema

[Dealy]

Thanks Mema for your input. Today is alittle better than Saturday. It seems now (today) confined to my lower lip and inside my mouth. Today I can at least talk and eat alittle without major shooters to the head. I am sorry to hear about your situation. My wife has an Aunt here in town who has a Benign Mennginoma of the Brain Lining that she got GK last year in Wichita, Kansas. They had her on Decadron for almost a year-her feet and hands are numb. She says Doctors will not committ to anything to her> So she is always in Pain w/0 any relief. Well they overdid it with Decadron in my opinion for her. Anyway she was lamenting to my wife yesterday that Doctor's are so evasive. She was a former nurse so the concept of the "well they may sue facotor comes in". It will be interesting what JHH says on Monday. My head today feels like someone who has high blood pressure-and since I just had mine checked last week-I know that is not the case, Anyway-thanks for your input and reply. Ron P>S. Is their any hope too  resolve your issue-if their was nerve damage.

[linnilue]

Hi Dealy,  I might suggest that you visit my previous posting on post radiation damage.  I had sever damage, felt like I was swimming amongst sharks and finally after 1 1/2 years of severe suffering I was diagnosed in Boston with radiation damage.  I came back and confronted my doctors but it was meaningless to them, my neurosurgeon in particular.  However, that being said once I knew what the truth was and confronted my lifechanging situation, I began to feel better.  I gave into the situation and stopped fighting to be the me that was never going to be "me" again.  I can tell you that almost 3 years out now, I am definitely better, can now drive (for 4 months now) and can walk short distances without a cane.  I still have issues with weather change, I too have pain in my face, teeth, slur words at times, suffer from imbalance but all in all it could be worse.  I was very angry becasue my doctors basically forced me into radiosurgery 4 days after I met with the radiooncologist.  I was told not to go on the internet because it would scare me and the information would be exaggerated and not medically sound.  I beg to differ.  Trust what you feel is real and seek a second opinion if you are not happy with what you hear this week.  Good Luck, Holly 

[Dealy]

Holly-Thank you also for your input. I feel so sorry for you. I am at work on break and typing this on the computer now. I did not honestly feel I could make it at work today. So far so good. Atl least I can function. Feelsl like someone hit me in the head with a bat though. Head is very tight and eyes ache. My wife was going too call JHH this morn. I cannot use the phone anymore-although I did e-mail them. My hearing is more distorted than ever. Thanks for the input. Like you say-it could be worse-at  least I am still able to hobble around-even though at times it looks like I have had too much too drink. Thanks-Ron

[mema]

Ron,                                                                                                                                                                                         


Yes the doctor said the nerve will get the sheathing back  but it will take a long, long time.   Recently I was put on Mobic for a complete different ailment.  While on it My brain spasms and headaches went away.  That kind of clinched it for the doctor that it indeed was nerve damage.  Well as luck would have it my eyes started to burn and get blurring.  Off the mobic and spasms and headaches back.  I actually go to my primary this wednesday.  See if theres a different anti-inflamatory I could be on, but I also have a stomach problem and my doctors are caustious what meds to put me on.  It took 18 months post radiation to finally get the answer to what  was going on in my head.  That fact alone has made a world  of difference for me.   Now that I know what it is, I don't worry anymore when I go to bed that I won't wake up.                                                                                                                                                               



                                                                            mema

[Patch]

HI, THIS MAY SOUND FUNNY, BUT WHAT ARE SHOOTERS? I FINISHED MY RADIATION TREATMENTS ON JULY 20. SO FAR ALL IS WELL. I DO HOWEVER HAVE AN OCCASION FEELING OFF BALANCE. DOES ANYONE KNOW HOW LONG THIS LAST OR IS IT SOMETHING I HAVE TO LIVE WITH THE REST OF MY LIFE?


THANK YOU

MARK

[Dealy]

Mark- Shooters as I call them are nerves in the face due too inflammation or irration firing for the least stimulus. It is like a small electrical shock and very painful. Usually some form of Steroids will clear this up if they occur but I took so many at the beginning that I am now on 100MG-twice a day of Celebrex. I am still have small shooters to the face. My whole side of the right face is numb includung inside my mouth. It has been this way for over 2 and a half years since the tumor is pushing on and displaced the facial nerve. As far as balance-this will clear up in time. Do not expect much until the first 6 months. Some people get swelling around 6 months and other's do not. Mine did swell. This is a good sign from the literature I read but actually can cause more problems until the swelling subsides. Like I said-if you get these shooters-you will know-hate to say but they can drop you to your knees in no time. Best of luck with your radiation outcome. Keep positive for the best. Thanks_Ron

[Dealy]

I just heard this morn from Johns Hopkins concerning my facial nerve shooters. They want to put me on a dose of Neurotonin. I hope the spelling is right. Anyway-I know Bruce is on this-so before I say yes to them can anyone who has used this drug give me the positive and negatives. I still am getting  small shooters to the face-even today but they are not painful-yet. Would appreciate anyone's input_Thanks_Ron. Of course last week Saturday they were almost unbearable.

[ppearl214]

Ron, you got PM.. .neurontin patient here and tolerating it well. I know Capt Deb was on it at one point (at exceptionally high doses) as well as others.... my dose is low due to medicine tolerance issues....

Phyl