I have a date, and thanks!

[cmp]

Sorry to have disappeared from view after my initial post in early April (I've been around as a lurker, but feeling too emotionally raw to say much!). I did reach a decision to opt for microsurgery and have it scheduled for June 2 (I've entered the date into the AN events calendar--important dates and milestones coming up for so many people there!). I wrestled with it for a looong time, but since I could never have been comfortable not getting the tumor "all out" (or at least trying to!), it made the most sense for me.

I had a repeat MRI this past Monday (horrible experience! MGH doesn't have an "open" machine, as it turns out, and my husband unfortunately wasn't able to come with me--I will definitely be planning any future MRIs a LOT more carefully...) , and will be getting my pre-admission testing and final review consult with Dr Martuza next Wednesday. I've faxed a request for my records from Ohio State University, where I had an MRI two years after my '89 AN surgery in Florida--I am hoping that even though the FL hospital destroyed (!) my records, OSU will still have charts on me which include a forwarded copy of the post-op note from the surgery. I really don't like the idea of going into surgery in June without my surgeons having all the facts (ie original size/position, method of approach, biopsy report, etc.), even though they've said that nothing they would find in the charts would change what they're going to do now.

The issues to resolve this month will be 1) to keep my pulmonary function in good shape (I'm asthmatic and my asthma doctor said my breathing was so crummy at a checkup 2 weeks ago that I wouldn't be a candidate for anesthesia--I've improved significantly since that appt with diligent use of meds!) and 2) to clarify my steroid sensitivity (I have an appt with a specialist in a couple of weeks). I can't tolerate prednizone (it's been prescribed for asthma flareups in the past with disastrous results) and need to make sure the steroids they use post-surgery are dissimilar enough not to cause problems.

though I hadn't been planning on telling my mother  (who's quite ill if stable for now with metastatic breast cancer and has some real cognitive issues--though whether it's dementia from her many many meds or age-related we don't know) until it was absolutely necessary--and perhaps not even till I was out of the ICU--I ended up being forced to (long story...), and she took it surprisingly well. Now I just need to keep my fingers crossed that she stays in her present holding pattern for a while longer...

Anyway, I wanted to update you, and also thank everyone so much for their advice and support when I was really floundering. You are a wonderful bunch of people, and this forum is truly remarkable!

Carrie

[sgerrard]

Hi Carrie,

Best wishes for a good surgery, it's good you have it on the calendar, that way LADavid or someone will notice and alert us if we forget.

I'm sure getting as much old info as possible will help, but if you hit some brick walls, I wouldn't fret about it too much. With MRI's and other tests, the surgeons will have a good sense of what they are doing, and they will learn the most when they have you opened up on the table. I hope the medical things with asthma and steroids don't get in the way. As for your mother, best wishes to her as well, that can be a tough road to go down.

I think you're decision makes good sense, and now that you've made it, I suspect you can't wait to get on with it. At least it is May and nice outside, the time will go by quickly. Take care in the meantime.

Steve

[leapyrtwins]

Carrie -

good luck with your surgery.

Thanks for putting it on the calendar - that way I can remember to wish you luck again when the date is closer   

Jan

[cmp]

Thanks for your good wishes, Steve and Jan!

I'm very proud of myself for figuring out how to add to that calendar--took lots of random clicks to get to an editable page!

[leapyrtwins]

I'm very proud of myself for figuring out how to add to that calendar--took lots of random clicks to get to an editable page!

I figured out the calendar with no problems, but I had a heck of a time following the directions to post a picture to my profile 

[Jim Scott]

Hi, Carrie:

I congratulate you on your decision to opt for microsurgery to address your re-growth.  These choices are always difficult and somewhat emotional, I know.  I sincerely hope that this AN surgery has no post-op complications and is the end of your battle with this acoustic neuroma thing.

As Steve ('sgerrard') mentioned, even without all the details of your 20-year-old AN surgery, the surgeons that operate on you this time will have a current MRI to work with as well as your latest medical information.  I trust the steroid sensitivity and pulmonary issues will be resolved in time for the surgery.  You seem to be keenly aware of what you need to do and are trying to go into this operation as healthy as you can be, even with outstanding medical issues.  That demonstrates a positive attitude and sensible approach to this surgery, which is exactly what any AN surgical (or radiation) patient should be thinking; i.e. "How can I help to make this come out O.K.?"  For the most part, it's really the surgeon's responsibility, but the patient can certainly help and you seem to doing the best you can under the circumstances.  I applaud you for that, Carrie, and wish you an excellent surgical outcome. 

I trust that your mom will retain her mental and physical stability as you go through this surgery next month.  You need to have peace of mind as you approach the surgery date and knowing your ill mother is O.K. for now is certainly going to help that to happen. 

Thanks for the update - and know that many people will be thinking of and praying for you on June 2nd.

Jim

[cmp]

Thanks so much for your supportive words and good wishes, Jim. It's really helpful to hear from another ANer that my current need to get all my bases covered might actually be a positive, health-promoting response to this situation! Sometimes I feel like I'm in training for a very unusual marathon (and I remember feeling this last time around, too...)

[jerseygirl]

Carrie,

Best of luck to you! In a way it will be a relief to get it over with! Remember: your new tumor is on small side and techniques have improved over the years so the risks and side effects as well as the surgery times have all decreased dramatically. Keep us all posted on how things go.

                   Eve

[Debbi]

Hi Carrie-

so glad you have a date!  Try to take excellent care of yourself between now and then - sounds like you have a lot of things to deal with right now.  I will keep you in my thoughts and prayers - and will be following your progress. 

Debbi - 5 days post op!

[cmp]

thanks much, Eve and Debbi!

Eve--since you have already "been there" twice, reassuring words from you are doubly reassuring! (I think my new mantra needs to be "no biggie this time"...  )

Debbi--I simply cannot believe you are at home, online, 5 days after surgery! You are an AN goddess! Hope you continue feeling better and stronger every day...

[wendysig]

Carrie -

Sorry to hear about your regrowth after 20 years.  I recently posted a message about the possibility of regrowth (Are ANs forever?) and I guess you answer my question without a doubt.  This  is a lifelong problem.  I was just diagnosed about a month ago and had a hard time deciding on a treament plan because of my fear (rational or not) of radiation.  I have just about decided to go for surgery too.  It sounds like you have your hands full with issues with your mother too, so I can only try to imageine what you are going through.  I'm glad you found this forum as the people here really try their best to help, and there's nothing like commiserating with a kindred spirit.  You are in my thoughts and prayers. 
Wendy