subarachnoid hemorrhage caused by AN?

[shamalec]

please help!
i am actually writing about my sister, who recently has a subarachnoid hemorrhage which apparently was caused by an AN. the physicians we have seen (about 4!!) say her case is very rare since ANs usually don't bleed. we really need to find someone who has has a similar situation and was hopefully treated successfully .i'm hoping someone can recommend an experienced physician who has successfully treated a case like hers and can diagnose her and hopefully treat her properly.  Since she already had a hemorrhage, her treatment is somewhat urgent. please advise!!

[Pooter]

Where are you (or more specifically, her) located?  I'm sorry you're going through this, but you're starting in the right spot.  If you let us know where you are, perhaps we can help more.

I'm personally in Houston and very highly recommend Drs. Vrabec and Trask.  Either of those gentlemen may be able to help.  I've never had what you describe (heck, I never have had an AN before either), but I can only offer them as possible people to talk to.  If you PM me with interest, then I'll give you the number of Dr. Vrabec's office.  They should be able to tell you if they're experienced in it or not.

Good luck!

Brian

[Raydean]

I'm sorry that your sister is going thru this.  My first thought would be to contact The House Ear Clinic.   Not just because of their experience factor, ( which is important in serious situations) but also because they would know of Doctors in your area that may be experienced in your sister's area of need.

Send the MRI scans by express delivery to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or FAX a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

Please keep us updated and know that your sister and you will be in our thoughts and prayers.

Hugs
Raydean

[shamalec]

dear pooter and raydean,

first of all thank you so much for replying, it is so comforting to finally find someone who has gone through something similar and who actually understands what we (and more specifically my sister) are going through. to answer both of your questions,  we actually live in mexico, which in part has been the problem, since specialized physicians are not as common as in the U.S. not to say that it is any easier to find the apropriate dr. in the U.S. without some recommendations. in any case, i will keep in mind the drs. in Houston that pooter suggests, since it is feasible for us to reach houston, and will also contact the house ear clinic, hopefully they can shine some light on this. to make things more complicated, the doctors here and now wondering if my sister's tumor is even an AN or possibly a hemangioblastoma, which only shows you the frustration we are going through since her S. Hemorrhage happened already 3 months ago and we as of yet do not have a clear diagnosis. if you have any more info, it will always be appreciated and thank you again for giving us a starting point from people who know what this is like!!

thanks again and i hope you are both recovering well from your AN or in the process of doing so.
sincerely,

shamalec

[Pooter]

I would expect that the House clinic doctors should be able to give you advice over the phone / email quicker than a dr visit in Mexico or Houston.  Perhaps they can at least give you a direction, treatment options, etc..  Again, I'm sorry you guys are having to deal with this, so hopefully you'll get some answers soon.  If surgery is required (or just an option) I stand firmly behind the Doctors that I mentioned in Houston.

Good luck getting your answers; please share them with us.

Regards,

Brian

[hruss]

shamalec,

how are you and your sister? is there any light on your problem?

i also have had two surgeries on my AN, but they were only partial just because the doctors here are not experienced enough and are afraid to go further, so i am looking for another option for surgery here in Europe or in House ear clinic in LA. After my two surgeries it was confirmed that my bugger is an AN, but not a usual one since it is bleeding a lot.
 
I wonder whether you got some information on doctors that can cope with a bleeding AN?

Don't lose hope!
Hrissy

[shamalec]

hi!

so the progress in this case is that a Dr. here in mexico actually knows a Dr. at the House Institute, and highly recommends him. The Dr. 's name at the HEI is Antonio de la Cruz. Anybody heard from him or has been treated by him by any chance?

Brian- i would also be very interested in talking to Dr. Vrabec. at this point, since we are already considering treating her in the U.S., it would be very helpful to talk to him, i'd greatly appreciate if you could give me his number.

Hrissy - i'm sorry to hear you haven't been able to find a qualified Dr. in your area, i know how that feels! hopefully my sister's case can shine some light on yours! i will keep you posted.

[sgerrard]

I have certainly heard of Dr. Antonio de la Cruz, he has been mentioned on this forum many times, and by all accounts is very good. Besides being a good surgeon, he is also considered to be very helpful over the telephone.

If you do a search for Cruz (the search box is at the top of the page), you will find many posts that mention him.

Steve

[shamalec]

hi steve,

i did search dr. de la cruz and like you mentioned, he does come up in many posts. i am glad to see we are finally in the right direction hopefully, especially after my sister has gone through so many diagnosis ranging from an aneurysm to a pseudoaneurysm to an aneurysm inside a tumor and finally an AN. do you by any chance know if dr. de la cruz also recommends or performs gamma or cyber knife prcedures for AN or does he mainly specialize in surgery? i  guess i'm still hopefuly that we can avoid surgery because of all it's possible complications.

thanks!

[Jim Scott]

Shamalec:

I'm not absolutely certain but I believe Dr. De La Cruz specializes in surgery.  However, he might be willing to help 'map' irradiation treatments for your sister (with a radiation oncologist).  This is something you'll need to ask the folks at HEI and, perhaps, Dr. De La Cruz, himself. 

Considering all the travails your sister has endured, I really hope she can be treated at the House Ear Institute in Los Angeles and that Dr. De La Cruz can help her, as I'm sure he would want to do. 

Jim

[shamalec]

hi everyone!

as it turns out. after Dr De la Cruz reviewed my sister's case, it seems what she has is not an AN but rather an hemangioblastoma which is (for those of you who don't know this) a different type of tumor which has lots of blood vessels, hence explaining the hemorrhage she had inicially. Dr de la Cruz is meeting this week with a team of doctors to give us more info on what the plan is, seemingly that those type of tumors are not his specialty. we will hopefully know more soon. i must say that Dr de la Cruz has been incredible nice and on top of this case, he truly must be an excellent doctor.

Does anyone know any surgeons specializing in hemangioblastomas they might be able to recommend? or any place where i might be able to get that info?

thanks everyone for all your support, it's great to know we is not alone.