Aftercare

[nanramone]

Hi Everyone -

I am waiting for a return call from Dr. Lunsford's secretary so I can schedule my appointment for Gamma Knife -

I wonder, and I know this sounds naive - since I'm going to Pittsburgh but live in Indiana, who will be in charge of my aftercare? Should I go back to the ENT who originally found this problem?

I just feel like there are loose ends here...how have others who traveled out of state dealt with this?

thanks for ideas,

Nancy

[Debbi]

Hi Nancy -

Glad to hear you've reached a decision that you are comfortable with - that's one of the hardest parts of this.

I would suggest you contact the doctor's office and ask how they handle after-care.  You won't be the first to ask this, and I am sure they have a system in place. 

Do you have your date?

Debbi

[nanramone]

Hi Debbi - yes, I posted elsewhere that the date is May 18~

I feel overwhelming relief to have made a decision. I think I will go to New York for a few days beforehand,  to visit my daughter and have a good laugh at life - then she'll come with me to Pittsburgh for the Great Gamma Knife Counter Attack, as I'm calling it~

My loving friends have been calling and drawing me out each day - the support I've had through them has been good, and I'm very grateful as always for this forum, which is always here, and I hope in time to know some of you better.

Nancy

[rupert]

 Hello Nancy,

          Once you leave Pittsburgh,    you probably will never see them again.    You can have your general doctor or your ENT schedule your MRI's at the intervals that they will go over with you.   You,  or they can send them to Pitt.  for their review and they will write you with their view of how things are looking and when the next suggested MRI should be.  You could follow up by phone if you feel the need to talk to someone.

          Every one of the staff at the Gamma center is first rate and will make you feel really comfortable and at ease.   You will have to arrive the day before to go over everything,  meet the neurosurgeon, nurse ad some others.    They even give you a list of fine restaurants to make your stay  just that much better if you so desire to partake.   There are some really nice hotels downtown.    When I was there it was a terrible snowstorm and there were parking issues downtown with hotels,   so I stayed out about 5 miles away.

[nanramone]

Hi Rupert  -

Pittsburgh called me today to get some insurance info, so I asked the same question. I was told that they will order MRIs that I can have done here and sent to them - I assume they want them for follow up research purposes. Other than that I guess I'll go back to the ENT who found this thing in the first place, so I gave his info to Dr. Lunsford's secretary and she'll send all the records to him. It still seems kind of disconnected, but then, so I am at the moment! Reading about this thing has worn me out!

thanks -

Nancy

[rupert]

 Nancy,    in these cases  the disconnection is a good thing.   Means everything is good and A-OK.     You will still have correspondence with UPMC  but hopefully you are only there once.    Bryan

[nanramone]

Hi Bryan - I didn't notice your name in the previous post - I just read all of your previous posts and it's interesting because I also originally thought I would prefer surgery. One surgeon in Indianapolis saw my records and referred me for Cyberknife, then the surgical team at Pittsburgh reviewed the records and they also said, no, that I am an excellent candidate for radiation. In the meantime I had read a lot and decided that there was nothing to be afraid of, and like you, I was apprehensive about some of the known problems with microsurgery...I guess it's exactly as everyone says - we have to trust our gut feeling.

I am very fortunate that I am currently unemployed because of an unrelated injury and have plenty of time to de-stress. I'm going to visit my daughter in NYC for about a week before GK, and it might sound weird, but now I'm actually looking forward to getting this thing over with!

thanks for all the info you posted about Pittsburgh~

Nancy

[rupert]

If there is anything you have a questions on,   just let me know.   I ,  or someone here will try and answer.    Bryan

[mk]

Hi Nancy,

first of all congratulations for making your treatment decision.

Regarding follow up, of course it is great to have someone locally to monitor you. But keep in mind that your ENT is not necessarily proficient in radiation, interpretation of the results, possible side effects etc (most ENTs aren't). It is therefore important to insist and make sure that you have a contact person at Pittsburgh (ideally the same every time), who will receive your MRIs, read them for you and follow up appropriately. Also this should be your  contact person in case issues crop up. I have seen too many people on this board who have been frustrated with the lack of proper follow up and response from their treatment team.

I also received treatment out of town, and I always send my MRIs directly to the radiation oncologist and follow up with him on the phone.

Good luck with your treatment.
Marianna

[nanramone]

Marianna - thanks for this info - yes - I want to make sure someone is available if I have problems at some point down the line. I'm not especially fond of the quality of medical care available in this area I live in, and will have no idea who to turn to.

I'll make sure I explain this to the doctors in Pittsburgh, and hope to be assured that someone will be involved later if needed...

[rupert]

Nancy,    The people in Pitt will read your MRI's done local  and if you have any problems you can certainly consult with them.   If your
concern is that the quality of equipment is not good at you local facility,   I would ask the docs in Pitt what they think of the quality of the MRI's.  They told me that the quality of MRI at my local hospital was just as good as their machines.     Who's reading them would be the bigger issue in my mind,  and they will do that.   Hey,  you could always go back to Pittsburg and have them do the MRI if that makes you feel more comfortable.   Bryan

[nanramone]

Bryan - quality of MRIs here is excellent - I am concerned (in advance) of potential problems that might occur - say 10 months down the road after no one has been in charge of my care. I suppose it's correct to say I'm worrying prematurely  - I guess if there are future problems, I'll deal with those as they arise, but I'm afraid my issues might be met with, "well, we didn't do the Gamma Knife, so you'll have to go back to those who did", etc...

I think it's a good idea to put my mind on other things for now!

thanks,

Nancy

[rupert]

 Yes you are correct,  you are worrying prematurely.   You will be fine (in advance).