Take your time and educate yourself

[SDTom]

I am giving my experience as it is. I rushed into things a little more than I should and may regret my decision for a long time. I was only 43 (I'm 45 now) when I had my first surgery. The 3.7cm tumor was to be debulked and then radiated. Things started going badly immediately. The debulking should have got 90 % of the tumor but because of my anatomy only 60 % was debulked. This was disappointing but not the end of the world. Soon after I got a CSF leak, and then some form of meningitis. At this time I had a a VP shunt installed.

Things were bad at this point but I thought things were looking up. The meningitis was under control but it had done a number on my right side and now I have a right side palsy. I went through the 28 doses of radiation and things were progressively getting worse. The tumor was supposed to collapse but never did. I started having seizures at night and I was having trouble talking. Things were not looking good.

After 9 months my employer listed me as disabled and my job was fillled by someone else. Shortly after we made a trip to Mayo. There it was determined that the tumor had grown to 3.8 cm and was pushing on my spinal cord. My cerebellum was also herniated. The second surgery was 12 hours and Dr. Link and Dr. Driscoll did a good job. The tumor was taken and titanium was installed around the living tissue of the cerebellum.

Here is where caution comes in. I still have severe balance problems. I have appetite and problems with swallowing. I also have problems typing as this post took me most of an hour and it wasn't because lack of information. Please know your Dr. and be comfortable with him or her. Let me know if you have questions. Tom

[Jim Scott]

Hi, Tom ~

Thanks for sharing your AN experience with us although I'm sorry to learn that your initial debulking surgery and irradiation were not completely successful. 

My debulking & radiation experience was quite different.  At age 63, I was diagnosed with a large AN, pressing hard on my brain stem.  My AN-experienced neurosurgeon (30 years) decided (with my agreement) to debulk then radiate the AN in order to spare my facial nerves, a major concern of mine.  The 4.5 cm tumor had it's blood supply severed and was surgically reduced to approximately 2.5 cm using the Retrosigmoid approach.  The remaining tumor folded in on itself, as expected, making it susceptible to the effects of radiation.  I enjoyed a relatively rapid recovery and the follow-up radiation (FSR - 26 sessions, 3 months later) was uneventful.  Subsequent MRI scans revealed the remaining tumor showing definite necrosis and the beginnings of shrinkage.  My pre-op symptoms (severe imbalance, loss of taste and appetite, fatigue) disappeared immediately following the surgery and I was blessed to have no post-op complications, facial nerve issues or otherwise.  That was 7 years ago (June, 2006) and to date, I've had no AN-related problems.  Proving that every AN patient and case is unique and one patient's experience does not necessarily serve to predict another patients experience, whether good or not so good.

I hope that your current issues will be resolved soon.  Our membership appreciates every AN patient's experience and we're here to support you as only folks who've been through AN surgery and/or radiation, can.  Please consider this website a resource.

Jim

[SDTom]

Hi Jim,

I am glad things worked out for you. I think the original plan for me was sound but things did not go well. I guess I wanted people to take their time and be careful. It may or may not have any difference for me.

Also - a bad result might happen and it is not an easy recovery. Hopefully most people will have a better outcome. If they do or don't I will help them if I can.

Tom

[ombrerose4]

It's impossible to know what kind of things might go 'wrong' in AN surgery. Alot has to do with the consistency of the tumor- solid or sticky. Another factor is that everyones anatomy is slightly different which may mean that even though someone has a smaller tumor it is less accessible than someone else with a larger tumor. Location and size also affect outcomes. Even with the best of surgeons, AN outcomes are not predictable. But in good times and bad times, the ANA forum,  the people on the WTT list and local support groups are there to listen, support and care about each other.

[LakeErie]

Tom, Sorry to hear about your difficulties. I experienced vocal cord and swallowing problems following my surgery which involved the lower cranial nerves. While I am much better in both aspects now, it did take a long time for me to see  improvement. No two recoveries are the same, so yours may be faster than mine, but if not, know that time can be on your side. At 8 months my throat problems started getting noticeably better. At around 14 months I was pretty much recovered. I still have occasional swallowing difficulty because I tend to forget to eat smaller bites and be careful how much I am swallowing, but it is now just occasionally.
Several AN sites on the net point out swallowing complication is rare following An surgery, but almost always resolves on its own eventually. Good luck.

[SDTom]

I feel that a not optimal outcome is accepted by me - somewhat. What I guess I wanted to get across is that this can be a serious surgery and that some people may not have as good an outcome as others. Please take your time and ask many questions and if things don't go right it's not your fault.
Tom

[MDemisay]

May I add something? What Tom said is critical to newbies, and to people like us who've been around the block more than once (I mean operations) do your due diligence in research you can't afford to be too careful. Research, research, research then trust that you have made the right decision and go forward with the help of this forum and a lot of faith, you will make it. However, don't fool yourself, the decision is by no means simple. get at least 3 opinions for every option that you choose a good place to start is with Top Doctors put out by US News and World Report.

Hell, I even hired a Patient Advocate to help me with my research!

Good luck and Godspeed all of you!

Mike