Any been treated at Johns Hopkins?

[chopper]

If so, what doc and how was your experience?

I'm slated there for 6 Sept with Dr. Weingart

[djameson]

I had the FSR with Dr. Riggamonti and Dr. Warham at Johns Hopkins so I can't answer about the surgery group but I have had a great result with my radiation treatment.  I can say that the Johns Hopkins' neurosurgery team that I dealt with were first class.  JH deals with a lot of AN's so you should be in good hands for the surgery.  Good luck and let us know how you do.
Best wishes for a great outcome!
David

[staypoz]

Drs. Tamargo and Francis operated on me.  Their preference is to use the suboccipital craniotomy approach to preserve hearing.  There seems to be a higher incidence of post-surgical head and neck pain with this approach and I'm still struggling with them 2 years later.   Both are world-class surgeons, and Dr. Francis is one of the kindest doctors I have ever met. 

[ld_runner]

I had surgery there in 2003 for a 3cm an.  I did not have good results.  I would not reccommend JHU.

[Battyp]

stay poz I'm curious are you having a lot of headaches from your sub occipital?  I've had a few..waking up in the middle of the night.  i feel like my headaches are neck related just wondered if you were having the same thing?  I suffered horribly with migraines before surgery and do not seem to be having that! 

chopper you're having surgery the day before my bday!  Hope all goes well! 

[staypoz]

battyprincess,

I am having a lot of post-op head and neck pain. I did not have migraines or any other types of headaches pre-op.  I have had accupuncture, physical and massage therapy, botox, nerve blocks, and trigger point injections.  The blocks and injections have helped the most and I am now using hypnosis for pain management. 

staypoz

[chopper]

I wussed out...decided to go to the Skull Base Institute instead.

[Obita]

Chopper:

People that have this kind of tumor in their head need to go with their gut feeling.  I hope you have a sense of relief. 

Best of luck on 9/5.

Kathy O'Brien

[staypoz]

I was just back at Hopkins last week for my yearly post-op visit and couldn't have had a better experience.  The first day I went to Hopkins for an evaluation I felt very comfortable, and still feel cared for 2 years later.  For me, going there was the right thing to do.  But Kathy O'Brien is right; after you have done all your research you have to go with your gut.  There are no wrong decisions.

Good luck to you!!!

[chopper]

Thanks a bunch ya'll.  For some strange reason, I feel a lot better about changing venues and procedures, especially after learning a bit more about the differences between the standard suboccipital and this endoscopic deal. That gut feeling spoke, and I listened ;-)

[staypoz]

Hey, chopper.   I really do believe you have to go with your gut when all is said and done, but it's so important to remember that while we may all share the same diagnosis, our experiences are unique.  When I was first diagnosed and doing my research I stopped reading all the posts because everyone seemed to have had a treatment problem -- until I realized that people who have had some difficulties are more likely to want to talk to others to see if they had the same experience.  It's just human nature.  I had to laugh when you said you "wussed out" of the sub-occipital approach -- from what I understand of the procedure you are going to have (and that's precious little, just what I've read from the varous posts -- con and pro) you may be making a gutsier decision.  Just do all the research you can so you are making an informed decision and know that a lot of us fellow ANers will be rooting for you. 

Staypoz

[ratthebrat]

Hey chopper,
what ended up happening. did you go through with your surgery. I am interested to know how it went. we are all wishing you the best of luck and we are all here for you any time you need us. I had the open head surgery to remove my tumor i do have alot of after affects but guess what i am still here to today and living and watching my daughter grow up fast. It took me 6 months to walk again and drive my car. Ya it drove me crazy but now i am glad i did it instead of waiting. I went to UW Madison in wisconsin and my doctor has taken good care of me. Dr. Mark Pyle, I am almost 3 years out and i don't think i would change a thing about my decisions except i wish i would have told them to take out my 8th cranial nerve and be done with it because now they say i could have a chance it will come back in the future they don't know because i am so young. I am only 27 yrs old and was 24 when i had the surgery. Keep you head up.

let me know how it goes just look on the bright side you will be around for many more years.

rat

[Obita]

Hi Rat:

The night of 9/4 I sent Chopper a email wishing him lots of good luck.  He wrote back late saying he was nervous and probably would not be getting much sleep.  His surgery was scheduled the next day at Scull Base Institute.........I hope we hear from him soon. 

Kathy

[ratthebrat]

Thanks Kathy, i hope all went well for him and hope we here for him soon.

thanks again for letting me know

rat