ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Carson on October 16, 2008, 03:36:55 pm
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Being new here and newly thrust into the information highway on AN I am wondering.....
What is one thing that you know now that you wish you would have known before your treatment??
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Well, I had mine so long ago and it was so rush, rush that we never knew that I would be deaf...would've been nice! ;D Aside from that, I would have liked to be more prepared for the extreme fatigue.
K
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Hey Carson. One thing I wish I had known(but you already do) is that this forum existed. There's a wealth of information here from many good folks that are willing to share their AN insights. Personally, I wish I had more information about the possibility of eye problems.....I never gave that any thought. My surgery went great and I'm physically pretty much back to normal except for my dry eye issue. I'm still learning about how to deal with this.
Patrick
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Hi Carson. I guess I would have liked to have known that it might be a longer process than originally described. I went through months of anxiety that recovery was taking longer than the month I was told it would take. Good luck!! :) Karen
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i wish i had known about the lenthy recovery time on balance issues.
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That MRI's can be read differently by different docs...and even by the same person.
This caused much stress for me in the early years until I started to measure it myself on my MRI CD-ROM and couldn't find a difference. It wasn't until I asked why everyone is saying different things (I deal with two docs...retired military here), that I finally got answers.
The moral of the story is be an EDUCATED PATIENT...and ask questions!!
GM
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Headaches, facial pain and fatigue ??? Oh yeah, finding a Doctor who was qualified to treat me. It took me over a year. Of course it was this forum that helped me find the Doctor :)
Anne Marie
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Really good question, Carson! I'm looking forward to seeing what everybody has to say. I can't think of anything to add, except I wished I'd have had prior knowledge that there was such a thing as Acoustic Neuroma, because then maybe I would have also gotten a diagnosis sooner. I wish I had thrown a fit in my ENT's office and MADE him consider ALL the options. I didn't and my diagnosis was delayed because of it. I am always going to wonder if the facial numbness would never have been an issue if I'd been treated a year sooner. Maybe I would have gotten it anyway, but then again, maybe not. I'll never know the answer to that one. That's really the only thing I can think of that I regret. Maybe asking the doctor about sleeping pills when the steroids prevented me from sleeping that first week after my GK. I guess I have two regrets.
Not too bad, considering.
Sue in Vancouver USA
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That is a great question, Carson!
I guess I wish I was better prepared for the facial paralysis and the eye issues that come along with it. I was told it could happen, but I think I was so focused on the brain surgery part that I didn't really take the time to find out what facial paralysis really involves.
And I wish I had known about this forum prior to my surgery. That probably would have clued me in to what was ahead. Better late than never though!
Lori
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I wish I would have known about the ANA in general - and this forum specifically - prior to my surgery.
I had no idea these wonderful resources existed until 10 days post op when I just happened to pick up a brochure about the ANA in my doctor's waiting room. I truly think it was fate, since the next time I had an appointment with him all the brochures were gone and they were waiting for a new supply. Guess I just had good timing ;)
I mailed in my membership check, received the ANA's printed material - which included a WTT (willing to talk) list - and the rest is history.
When I was diagnosed I felt so scared and alone, since no one I knew had even heard of an AN - much less been diagnosed with one. Finding the ANA and the forum was immensely gratifying to me because here is a whole group of people who can relate to what I've been through.
Jan
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Hi Carson,
My incision started leaking about 1 1/2 weeks after my surgery and continued to leak until two or three weeks ago. This was something I never expected and it gave me a couple of scares, but was more bothersome than anything else. I never had an infection or CSF leak , I was just leaking fat (from my head not my belly incision) and serous fluid. When this started my doc told me this only happens to 10 - 20% of patients -- as I've always said, I always have been an overachiever! :D Other than this one hiccup, I felt so well informed by the time of my surgery I had run out of questions. Everyone here was great about sharing their knowledge and experience, I did countless hours of research on my own and my doc was amazing. He gave me his e-mail address and encouraged me to send him any questions I had, both before and after I decided on my choice of treatment. I kid you not when I say I sent him well over 100 quesitons and he answered them all within 6 - 12 hours of receiving my e-mails.
Wendy
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After my surgery I continued to have "bouncing" vision while walking but thought this would go away eventually--it did not.
Oscillopsia (visual field bounces) is not a normal symptom after 6 months time. I was unable to describe my symptoms to my treating surgeon so he was in the dark. All I could say to him was, "If you could see what I see you'd know how awful I feel." He like everyone around me kept telling me to give myself more time.
It took three years to get proper diagnosis and another surgery to help with this problem.
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That is a great question, Carson!
I guess I wish I was better prepared for the facial paralysis and the eye issues that come along with it. I was told it could happen, but I think I was so focused on the brain surgery part that I didn't really take the time to find out what facial paralysis really involves.
And I wish I had known about this forum prior to my surgery. That probably would have clued me in to what was ahead. Better late than never though!
Lori
Oh I totallly agree with Lori. Every last word. Be prepared for anything, I was told too but thought oh doctors have to give you the worst case senarios but its not going to happen to me. I was devastated when I woke and found out I had facial paraylsis AND I didn't not know that the eye was affected. I am in a good place now, it took a while. Of course I want my face back but am really getting more comfortable. At first I really wanted to hide for the time it takes for my nerve to recover but guess what life goes on...and I can curl up in a ball and wait or live my life. I choose to live my life.
Michelle ;D
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I wish I had known how debilitating and painful the "possible headaches" would be. I also wish I had known that recovery would take years (for me, it's now been almost 2 1/2 yrs. I wish I had know that I would suffer from fatigue and that the fun things I used to do - like running, tennis - I can't do because of dizziness. I wish I had known how dramatically my life would change.
Marjoryb
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majorityb -
I'm sorry to hear you are having a tough time - especially with the headaches.
Have you ever checked out Capt Deb's posts about her headaches? If not, you should. She finally found relief from them recently.
I think Topamax and nerve blocks have been working well for her.
Jan
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i was so focused in getting my AN out that i overlooked "life after AN and with SSD", so i wished i knew about BAHAs before my surgery - if i knew about BAHAs i would have done the implant at the same time as my surgery, and have one submission to the insurance company.
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chocolate -
just because you didn't have the AN/BAHA surgeries as a "combo", doesn't mean you have missed out. Lots of BAHA users had their surgery separately. I had my BAHA surgery nine months after my AN surgery and I'm very glad I did.
At first I didn't even want to think about a BAHA since I didn't want to go through another surgery, but the BAHA surgery is NOTHING like the AN surgery. The doc doesn't even open up your head. It's a short, outpatient procedure, and I felt great immediately after it was done. I chose local anesthetic and didn't have to wake up, deal with nausea, or anything like that. I was able to wash my hair 24 hours post op and the healing went very smoothly. I was able to snap on my processor 90 days post op and it's helped me a lot with SSD.
So maybe you want to think about it.
Jan
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Hi Carson,
I wish I would have known about peppermints for the nausea that I had for well over a week after surgery. That was the worst part I think. My brothers girlfriend told me about peppermints and they bought me some. Those worked better than any of the meds that I was given. And MUCH cheaper!! ;)
Cathy
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I wish I had known about facial paralysis and numbness and that all of its effects. I had no idea what was going on with my face when I woke up. I also wish the doctors had explained the facial nerve healing process more clearly. I had no idea how long a process it would be....as I sit here with some paralysis and numbness four years later.
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Hi Carson,
I wish I would have been prepared for the side effects of my particular surgery (trigeminal nerve issues). Also, a realistic view of how long it would take for nerves to heal, etc, would have helped me.
Best,
Marci
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I wish i had known that i would survive surgery, no stroke, no leak, no infection, no headaches, no fatigue, no swallowing problems, no cognitive issues...nothing i couldn't handle.
Because while i went into surgery quite relaxed and ready (not scared), part of me thought...what if i don't wake up? what if i come out wrecked, forever? What if i can't work? I took my chances.
While I didn't come away without any problems (mine being mean double vision and paralysis, which i am told will recover in time), i feel like am doing pretty good despite these things. I was really worried about facial paralysis and didn't know that "temporary" could take months-years to fix (and that even then it might not be 100%... i really didn't know this fact).
I guess what i am trying to say is, i woundn't have done things differently, so i wish that i had known that it would be ok after all. I was hoping to avoid facial problems, but i am hopeful that it will recover and i will be that much more appreciative of what i have.
If i had known about the paralysis and DV (which was really scary and i didn't if it would fix, which it is), I don't know if i would have gone ahead with surgery (and i am glad i did). So i am glad i didn't know the bad things that would happen and wish i did know the bad things that wouldn't/didn't happen.
It is good to have peace in your decision and outcome. I wish this for you and everyone.
Trish in Toronto, Canada
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[I am hopeful that it will recover and i will be that much more appreciative of what i have. Trish
I could not agree more, it certainly is a life altering experience.
Michelle :o
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I had CK done,I was told nothing to it,although that was true,the headaches and hemifacial spasms which occured 3mos.later ,was unexpected,and being on decadron,and extremely sick all summer,ana unable to work for a couple months,made me wish I had watched and waited.I finally got weaned off the decadron,which was hell in itself,but now feel much better.I still have facial spasms,but no headaches,and am active once again.Honestly,I would do CK again,but probably at different facility,with different doctors.When I was having a horrible time on steroids,I called the CK center and explained to nurse what was going on,she told me that couldn,t be from the CK,or steroids,and said to check with my GP.He wasn,t familiar with CK side effects,and had me contact neurosurgeon,who although prescribed some different drugs,this only made things worse.I finally got off drugs and doing 100% better.
I also went to CK forum,and must thank Dr.Medbury,who was familiar with what I was expierencing,which in itself was a relief,as my doctors more or less blew it off.
You must be your own advocate,and if your not getting the clear answers to your questions either have doctors explain until you do,or get another opinion.A little off track I know,but felt it shoild be said. Bruce
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Hhmm, interesting question. I would have to agree with Lori that I wish I had taken time to educate myself more about facial paralysis. I wish I would have understood that the stats most docs cite regarding facial paralysis pertains to permanent paralyis, not the temporary kind (which as Trish pointed out can take months/years to resolve). I don't blame anyone for this - I just didn't want to know a lot about it because it scared me so much.
And, I wouldn't change my choices either. It sucked when Willie told me in the Recovery room that I had "temporary" facial paralysis, but I think I began right then and there to deal with it. This entire experience has made me a better and stronger person, without a doubt. And, I've made some great friends here as a result!
I also am thankful that, if someone in our family had to get an AN, that it was me - I would not have dealt with it nearly as well if it had been one of my loved ones with the diagnosis.
Cheers,
Debbi
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This is a wonderful question Carson! I wish I had known that when I had post treatment problems that I never thought I would experience, I was going to receive no support at all from the GK center I choose. It may be harsh to say, but it seems it is all too true in my case. Over the course of a two and half month period, I was just not expecting a physician to reply to my questions that it was not possible to have headaches, pain in temples, edema, and skin issues from the result of radiation treatment to an AN. For me, I can only find my center honoring hearing loss as a possible problem of an AN. It has been quite frustrating.
Nothing is 100%. No physician can predict what can happen to someone before they have treatment of surgery or radiosurgery. Nor should they discount what symptoms a patient experiences post treatment. It would be comforting to have a team that owns up to side effects or negative outcomes, no matter how clean they want their statistics.
Ir is quite possible I would have had problems no matter what treatment route I took. I have a sensitive body with many past reactions. I am still pretty new to my treatment, so I am have gone back and forth if I made the right decision, when I feel really bad. At this point, I am not sure exactly what I would change because I am in a new, confused state. I may know more when I am further down the road.
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I wish I had consulted with a neurologist before surgery and found a good person to manage my aftercare before flying off to California to have my surgery. I was one of those unfortunates who ended up with debilitating headaches which kicked in months afterwards with no one back home to manage them in my small town and none of the AN surgeons at Duke or any other centers of excellence in the area wanted to "clean up anyone elses mess" and actually cancelled appointments on me once they found out the details of my case. The only thing I've been able to do is get my symptoms managed--the causation is still unknown.
Looking back, I wish I'd looked more into radiosurgery, but I did what was best for me and my family at the time or so I thought.
Capt Deb
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Carson,
Having read everyone's posts here I think the moral is gather as much information as you can. Research, research, research, here and on your own. If your insurance company will pay (and maybe even if they wont pay for all of them, although I can't see them saying that) get as many opinions as you need to have to feel comfortable. Everyone makes their own treatment choices for their own reasons.
Best wishes,
Wendy
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Everyone makes their own treatment choices for their own reasons.
Definitely true. Treatment choice is a very personal choice - you need to do what is best for YOU.
Jan