Ally Castellano's Page

Hi Ally!  I wanted to write more in the friend portion but it wouldn't let me.  I am thinking of having the drez by a dr named Dr.Amr O El-Naggar.  He seems to specialize in treating anesthesia delorosa and atypical facial pain.  Have you heard of him?  I would like to know if anyone else has heard of him or had the drez done.  I did have the motor cortex stim put in but had it taken out 9 months later.  I am going out of my mind with this pain and the meds that I have to take to live.  I have 2 kids I have to take care of which is very hard but gives me the will to live.  I hate all the side effects of the meds.  I hope you are doing better.  How long is the recovery time with the drez procedure?

Hi Ally!  How are you?  I am waiting for Dr. Casey to get back to me...he is reviewing my records and is going to decide if there is procedure that would benefit me.  He does believe I am affected in the trigeminal nerve, but it is not common.  So he is not sure what it is yet or why and I am patiently awaiting his decision.  If he decides it is better to just use medication, then I will be patient.  I am now on 4200-4800 mg of gabapentin, diazapam, hydrocodone, and imitrix almost on a daily basis. 

 

Are you feeling any better?  Have you been able to pursue some of your dreams?  Write if you get a chance!  Sending my prayers your way ---------------- Katie

Hey Ally, it's good to hear from you. I've been busy at work so I haven't been on this site in months. Some of it is that it's hard to hear all these stories from people who can't get help, that has always bothered me. I just applied for the third time with the insurance company about getting aproved for MCS, they've shot me down evertime so far. Im hopping I can make it thru the summer without having any operations, but I know as soon as cool weather hits the pain will get worse. I've about decided if they keep rejecting me I'll look back in to the DREZ procedure. The past few emails I've sent to casey I havent got a response, but he can't do anything with out the ins. co. on board so I haven't pushed it. How have you been doing? I hope things settled down after your DREZ procedure I know you were having a hard time. I think last time i heard from you you were going to Pitt to see Janetta. Hope the vist went well.

I am also a patient of Dr Casey and have been recently talking with him about having the DREZ procedure. I would just like to hear anything you have to offer good or bad about this... I have had 4 MVD's also, for bilateral gn and tn pain.

Thank you so much for your friendship, Ally. : ) bob

Hi Ally -
Just wanted to say hi and let you know I had my baby Oct 5th. He ended up being the biggest baby I've had...7 lbs 14 oz...so what do doctors know?! They told me he would be in the 5th percentile of size. NOT TRUE! So I was truely greatful for that and so far I don't see anything to be wrong with him at all. It is a little overwhelming with them all so young and close in age, but it is my life and I have to handle it! As for the pain, I am seeing 2 of my neurologists in a couple weeks to get their latest and greatest opinions on what medical options I have. How are things going for you?!

I have definitely been diagnosed with bilateral TN, about 6months ago. I just want to know whats causing it as I have been getting other unusual symptoms as well as the TN. The doctors taken me off the tegretol to see if its that which has been causing the other symptoms, its been five days without tegretol, TN pain is awful and the other symptoms have not gone or reduced in any way.

Not yet but going to try and get one when I next see the doctor in about a week!

Hey thanks, Im so glad I found this site and groups on facebook. Sorry to hear you've had it for so long, Ive only had it since christmas and its just getting worse, it turned bilateral in April! Its so hard coping with it at this age, Im still in school on my second year of A-levels and im finding it really difficult to focus during lessons!