ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: susierg on June 18, 2012, 11:15:06 am
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I was diagnosed in 2007 with a tiny 4mm right sided AN and have been "waitng and watching" for 5 years. Last month at my annual MRI appointment at MD Anderson, they informed my that the little sucker had grown. It is now 4mm x 6mm and they recommended surgery to remove. I was told that it was my decision, but that once they start to grow, they don't stop. After consulting with my doctors and doing some research on my own, I have decided on surgery. It is scheduled for 7/24/12 and will have the middle fossa approach as my hearing is still at 100% . I'm confident in my doctors, but still scared as I'm not sure what to expect after surgery. They tell me it will be an 8 - 10 hour surgery with a recovery period of 4 - 6 weeks. I had open heart surgery last year for a pulmonary valve replacement. They recovery for that was about the same time and something I really don't ever want to repeat. Hopefully recovery from AN surgery will not be as painful, but really dont know. Would appreciate any info, advice, etc.
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While I had retrosigmoid, not mid-fossa, and was in surgery a little under 3 hours, not 8 to 10 hours, I had no pain after the first day. I was discharged in under 48 hours with a pain Rx I never used.
I did experience the " wonky " or "loopy " head for exactly seven months ( to the day in fact.) But that did not really impede my recovery. I was able to jog in 3 months.
Everyone has a different recovery, but my tumor was almost 5 cm and involved cranial nerves numbers 5 through 11 so there were more complications in my case than I would assume you'll have with a smaller tumor.
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Hi, Susie ~
Welcome. First, let me assure you that your concerns regarding the post-operative recovery process are perfectly normal. Your doctors offered you the 'standard' times for the surgery and recovery but as you know, these can vary from patient to patient and shouldn't be construed as absolute. The doctors opinion that once the AN begins to grow it doesn't stop is a bit overblown. Although some ANs continue the growth cycle some do stop or else grow very slowly. The dilemma is that there is no way of predicting with accuracy whether your AN will stop or continue to grow, and it should be mentioned that growth can be rapid in some patients. Why, we do not know. That being noted the Middle Fossa surgical procedure does offer a fair chance of preserving hearing in the affected ear but of course, as your doctors probably told you, that cannot be guaranteed.
As for your post-op issues, they will depend on a number of factors including the exact placement of the tumor and of course, your doctors surgical skill. Immediately post-op, you may experience some degree of nausea (I didn't) and you'll definitely be extremely fatigued. The fatigue will last for some time but should abate within a few months. Balance issues are very common but faithfully engaging in vestibular exercises can help, a lot. Assuming no real post-op issues such as facial nerve damage, your recovery for the first week or so will mostly consist of resting, napping and sleeping. No lifting over 15 pounds and nothing too strenuous. Walking is highly recommended, especially over uneven terrain (to help facilitate regaining your balance). We always warn: 'individual results may vary'. Meaning that we are unique and there isn't a template for the recovery process. Some AN patients recover quickly and are running marathons within six months. Some AN surgery patients have ongoing issues that bedevil them for a long time. Most recover enough within the six-week time frame to resume a fairly normal life. Of course attitude is always crucial to a good recovery. One needs patience and a will to surmount any obstacles that may exist.
We're here to advise, listen and support you in this experience, Susie. I hope you'll allow us to do so. We'll be thinking of and praying for you as you approach the Big Day (July 24th). Please try to keep us updated. Thanks. :)
Jim
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Hi Susie!! Sorry you had to find us but this place is just awesome for support and info. We are not doctors, just people who have walked in your shoes. I can't really add anything to Jim's excellent information, but just prepare yourself physically and mentally for this journey and if you go in feeling good, you'll do just fine! I know you probably know the drill from your other major surgery, but the rules are the same...breath easy, stay calm, and keep venting on here! :) Let us know how it goes, ok? Take care!!
Jay
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Thanks everyone for the info and support. I have faith in my docs at MD Anderson in Houston, and I'm sure they will clue me in a little more when I meet with them again before the surgery. It's just nice to hear from people who have been through it. I'm trying not to think about it ...every minute of the day, but its always there in the back of my mind. I'm taking anxiety meds that were prescibed to me prior to my heart surgery as I tend to have anxiety attacks, even after the surgery and they have been helping me deal with this new challenge that has been given me. My husband is very supportive, but knows little about what it is that I have (we've only been married for 2 years), so this site has been very informative for him as well. Thanks again!
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While I had retrosigmoid, not mid-fossa, and was in surgery a little under 3 hours, not 8 to 10 hours, I had no pain after the first day. I was discharged in under 48 hours with a pain Rx I never used.
I did experience the " wonky " or "loopy " head for exactly seven months ( to the day in fact.) But that did not really impede my recovery. I was able to jog in 3 months.
Everyone has a different recovery, but my tumor was almost 5 cm and involved cranial nerves numbers 5 through 11 so there were more complications in my case than I would assume you'll have with a smaller tumor.
Wow that is amazing for the size of yours mine was only 1 cm and took around the same amount of time for my surgery but they left 3 mm behind for no apparent reason and still recovering from all my problems...It is so great to hear of such wonderful success story and so true no 2 are alike.
Best Wishes,
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PJB - If you read my signature you'll see the complications I alluded to in my post that arose from involvement of the lower cranial nerves, primarily swallowing and voice. The complications are improving slowly.
Also in my signature is the type of surgery performed, "simplified" retrosigmoid, which is a minimally invasive method done by my surgeon. The craniectomy was the size of a quarter and my curved incision was 5 cm. A cranioplasty was performed and the bone flap was secured with a titanium plate.
A previous opinion was translab with an estimated surgery time of 8 to 10 hours because of the tumor size.
The less than three hour surgery required dissection of the tumor from a vein complex, a cerebellar artery, the trunk of the vertebral artery, the brain stem, and cranial nerves 5 through 11. It was "an aggressive subtotal resection of 95% to 97% of the tumor " according to the operative report. Residual tumor was left on the brain stem and the facial nerve as the tumor was too adherent to remove safely. The surgeon was busy in the time he was operating.
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I don't think it's true that once they start growing they don't stop. If that were true, people wouldn't be in watch and wait for 5 years after initial diagnosis. Mine stopped growing and even shrank for a period of time. Then it grew by 50% in 14 months. These things are not all that predictable, but your tumor is still tiny.
JMO
Liz