Looking for Jim Scott?

[Desilu]

Jim,

 I'm hoping you will find this thread and be able to help. This is Desilu aka Ann on the ANA willing to talk list. A good friend of mine in Texas, Asha, is her name, has been trying to reach you. She has some questions for you about her AN and would like to talk or email back and forth. She tried your email, and so did I and a message appeared that stated that there was a "Datebase failure" I have no clue what that is and neither does she. If possible could you shoot me an email and I will give you her information so you can contact her? Thanks so much and I look forward to hearing from you! Ann

[Jim Scott]

Hi, Ann ~

I'm sorry the ANA PM system has apparently malfunctioned.  I trust that it will be back in operation, soon.

I prefer not to give out my personal e-mail address and I don't have yours but of course I'm quite willing to communicate with your friend, Asha.  Because I'm SSD I avoid talking on the phone as much as possible so I would ask you and Asha to try and be patient until the ANA PM system is back in operation and I'll be delighted to correspond with her that way and answer whatever questions I can.  Should that take too long we can look at some other way of communicating as I do want to try and help Asha with whatever I may have to offer her.

Jim 

[Desilu]

Hi Jim,

Thanks for the speedy response. I will pass this information on to her and tell her to read this thread. Hopefully, it won't be long before the problem is fixed. Thanks again! Ann

[leapyrtwins]

Jim -

I too have been contacted by Asha; in fact, it was me who suggested she reach out to you.  She has questions about debulking, and I thought you would be a great resource for her.

If it helps, you can email me and I can give you Asha's email address.  I know she is anxious to talk to you before her upcoming surgery.

Jan

[Jim Scott]

Jan ~

Please check your PM box.  Thanks.

Jim

[Jim Scott]

Hi, Asha ~

I'm so sorry to learn about your AN regrowth following both surgery and radiation.  As you know, I also underwent 'debulking' surgery and radiation (FSR) for a large (4.5 cm) tumor so I can empathize with your predicament. 

Of course I'm not a doctor but that kind of near-exponential growth on a resected, radiated AN within 5 years must be rare.

I would suggest that you have more than one doctors opinion before agreeing to another AN surgery, especially in light of the fact that the doctor you consulted warned that you would be likely to experience facial paralysis as a result of the second surgery. I would also seek out opinions on the possibility of radiation, although that is probably no longer an option due to (a) the growth of the tumor toward your brain stem and, (b) the fact that you've already undergone radiation treatment in the same area.  Obviously, this is a fast-growing AN and I understand that you have to react quickly before making a final decision.  It is certainly in your best interest to drop everything and focus on obtaining a second and/or a third doctors opinion before proceeding.  That is the only advice I can offer you at this juncture, Asha.  Proceed with alacrity but not without a sense of caution and the realization that you may have other options.  If not, then be certain the doctor you chose to perform this second AN surgery on you has your complete confidence.  Let him know your concerns.  That is what I did - and never regretted it.

This is definitely a tough situation and aside from the above suggestions, I can only offer you my prayers for a good outcome to this and, of course, my support and that of our members, who, I suspect, will be adding to this thread, which is why I answered you here instead of privately.

Jim

P.S.  I removed your e-mail address for security reasons - but added you to my contact list.