ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: miriamgail on October 11, 2010, 10:54:23 am
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I was diagnosed with a 4 mm x 5 mm x 7 mm acoustic neuroma one month ago, after suffering 2 episodes of vertigo/nausea/vomiting/ataxia. I have not had hearing loss. The first episode resolved completely with a three week course of Prednisone. The symptoms recurred after 2 weeks off Prednisone. Now I am on my second course of Prednisone with a slower taper, and I can not get below 15 mg of Prednisone without recurrence of symptoms. I have had consultations with Roland and Golfinos at NYU, and with Fayad and Schwartz at House Ear Clinic, and my options are to observe, or to go ahead with Middle Fossa surgery. The problem for me with observation is that without Prednisone, the vertigo symptoms are disabling. Yet continuing on Prednisone carries its own significant risks long term. So here is my bottom line question: From what I am reading, the vertigo symptoms may persist for months to years after surgery, so how likely is it that the vertigo would improve after surgery? It seems I am choosing between the risks of prednisone vs. risks of surgery at this point, and if the vertigo does not improve after surgery, then surgery will feel like a wasted effort.
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MG -
treatment of your AN - whether surgery or radiation - would not be a wasted effort. Although it is small and you can watch & wait you should probably do something about it before you experience hearing loss. Hearing loss - once it occurs - cannot be reversed.
There are options, but none of them will be like having your normal hearing back.
As for the vertigo, typically it goes away after treatment. It's hard to say how soon it will go away, though.
I'm not a doctor - most of us here aren't - so be sure to pose these questions to Drs. Roland & Golfinos and Drs. Fayad & Schwartz.
You mention that W&W and mid-fossa surgery are both options for you, but you say nothing about radiation. The size of your AN certainly makes it possible. Is it the location that precludes radiation? Or have you just ruled it out as something that's not for you?
Best,
Jan
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Thanks Jan. The doctors did not recommend radiation for me since my primary symptom is vertigo and not hearing loss - and the current wisdom from what I understand is that radiation does not improve vertigo, and may actually make it worse.
Since I do not have hearing loss yet, that is another reason that I am hesitant to do surgery, since middle fossa surgery itself has a 40% total loss of hearing on that side. I would go from good hearing to none now, whereas if I wait, I may have hearing in that ear for several more years.
These decisions are making my head spin! (figuratively right now)
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My vertigo was very mild pre-op. Once I discovered I had the AN things started to make more sense. Needing to sit down to tie my shoes. Difficulty walking a straight line in low light conditions. Dizzy spells when I looked straight up.
Like the majority of posties I noticed a significant increase in the vertigo during the days after my surgery. For the first few days everything appeared to list to the left side. Any minor head movements caused the room to spin, especially moving my head with my eyes closed. I was unable to stand on my own without support. Fortunately these issues all began to subside over the days, weeks and months that followed. Before I left California I was able to stand and walk unassisted without any serious problems. Two weeks post-op I could stand on one foot and count to 30. The bobble-headed feeling was gone after a few months.
Almost a year has gone by and I am left with only a few minor issues compared to my pre-op situation. Lying flat on my back and staring straight up (looking at the stars, working under the sink, etc.) causes severe vertigo. Rolling over in bed can do the same. I can easily remedy the issue by sitting or standing upright and focusing on a fixed item.
Everyone responds differently, but I hope this helps in some way. Best of luck!
- Dennis
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Thanks Jan. The doctors did not recommend radiation for me since my primary symptom is vertigo and not hearing loss - and the current wisdom from what I understand is that radiation does not improve vertigo, and may actually make it worse.
Since I do not have hearing loss yet, that is another reason that I am hesitant to do surgery, since middle fossa surgery itself has a 40% total loss of hearing on that side. I would go from good hearing to none now, whereas if I wait, I may have hearing in that ear for several more years.
These decisions are making my head spin! (figuratively right now)
Like I said earlier, I'm not doctor. However, I'm not sure if some of your statements are correct.
The mid fossa approach gives patients the best chance of saving their hearing and I think it's much more than 60%.
I'm also not sure that radiation makes vertigo worse. It might make it worse initially, but I don't think it makes it worse long-term.
Then again, I may be wrong.
Have you contacted the ANA for their informational brochures?
Jan
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Thanks Jan. The 40% number I got from the surgeons at NYU and at House Ear Clinic. They both said the same thing about radiation and vertigo. I should look into the informational brochures.
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Thanks Jan. The 40% number I got from the surgeons at NYU and at House Ear Clinic. They both said the same thing about radiation and vertigo. I should look into the informational brochures.
Hi Miriam
As a post-radio patient (had Cyberknife almost 5 yrs ago), I never ran into enhanced perm vertigo post treatment. Since the teams you spoke to were surgeons (and not radio oncologists), docs will tout what they know (same is true for radio docs.....) Regardless if surgery or radio, since the growth is on/near the vestibular (balance) nerve, regardless of which treatment option (surgery or radiation), the is always a chance for the vesibular nerve to be affected, including potential for enhanced vertigo/balance issues.
I would second the notion by Jan to contact the ANA for information regarding options, potential side affects, etc. They will provide unbiased answers to these questions through the information they provide (thus, why they exists... the ANA has a wealth of info for AN patients).
Personally speaking, I had temp enhanced vertigo approx 4-6 mos post radio... calmed down after 2 wks and now, almost 5 years later (I knock on wood when I say this), no vertigo issues.
As we know, "individual results may vary" and everyone's outcomes, regardless if surgery or radio may be different.
Hope this helps
Phyl
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Hey Miriam, I just wanted to chime in here...I had Middle Fossa with Brackmann/Schwartz at House almost a year ago and while the vertigo symptoms were minimal before surgery, they were much more so after. It probably wasn't until 6 months or so afterwards did I really notice things settling down, as my remaining balance nerve finally started compensating. Every once in a while I still have little mini bouts of vertigo but nothing dibilitating. Like Jan said, results may vary and everyone is unique post recovery. Continue to ask questions, get other opinions and seek out other options...do your homework, so to speak. By the time you make your decision and if it feels right, then it's the correct decision and you should not second guess your self. Good luck and keep us posted on any other questions you may have!
Jay
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Hi, Miriam and welcome! Years of vertigo - severe episodes periodically and mild to moderate the remainder of the time, was one of my biggest concerns. With the size of my tumor, I did also have the choice of surgery or radiation for treatment. I agonized over it, as do most people, for quite some time. I met with numerous docs (both types of docs). As Phyl notes, most docs are "predisposed" to a certain type of treatment and I knew and accepted that. Ultimately, what I did was decide which treatment I could live with, so to speak (went w/ the gut feeling) and then chose my doctor. I chose surgery for various reasons, but one of the main ones was that I wanted the balance nerve completely cut so that there would no longer be a bad signal coming from that side. A little wooziness I can handle, the debilitating vertigo, was another matter. I have had no true vertigo since surgery...yes, still wonky at times, but no big deal...not to me, anyway. However, as you've already been told and will hear over and over again on the forum, everyone's experience is different.
Best to you as you go through your AN journey - we are here with you!
cindy
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There is a chance with the vertigo now that your balance nerve on the other side is working to learn to compensate for the vertigo and post op in time should go away. There can be vertigo and also what we call the wonky head feeling. It's not dizzy but the head feels funny with activity and head movement and improves over time. I never had vertigo or dizziness with 4 surgeries due to having NF2 and 3 tumors. I did have some wonky head mostly whne outside or in large brightly lit stores and malls. The tumor location plays a part in what symptoms we all have and it varies with each person. I never had headaches also. Some general post achiness for a short time which a pain pill took care of. It is hard here that one does not know ahead how one might do with this surgery. My tumors were in the 1.4- 1.5 and 2 range. Post op steroids vary with each drs protocol. Some drs send you home on them and others do not and you just have them immed post op while in the hospital.
You do have a chance of having the hearing saved with mid fossa. Make sure the surgeon does mid fossa on a frequent basis. The tumor location can be a part of this also and how the acoustic nerve has been affected.
Good luck with what you choose. Cheryl R
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Six weeks after my surgery, I have some pretty significant vertical. Next week I start physical therapy to work on that. The hardest thing for me is that I can be fine for a couple of days and then will get a big "dose" of vertigo for no reason just walking down the hall at work or something like that. Always when I bend over head first, get up from laying down, a few other times. But it's the unpredictable ones that get to me. I live in northern MN and we have a big snowstorm coming. That may change it all - I will be on my butt eveyr time I go out the door!
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Diagnosed with 1 cm AN in June 10. Mid fossa surgery 9/30/10 at University of MN. Tumor over an inch at that time. CSF leak after surgery.
Thank you Sue.
Is it right that your tumor doubled in size from the time of diagnosis to the time of surgery?
What do you do about driving and getting around?
Miriam
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Six weeks after my surgery, I have some pretty significant vertical. Next week I start physical therapy to work on that. The hardest thing for me is that I can be fine for a couple of days and then will get a big "dose" of vertigo for no reason just walking down the hall at work or something like that. Always when I bend over head first, get up from laying down, a few other times. But it's the unpredictable ones that get to me. I live in northern MN and we have a big snowstorm coming. That may change it all - I will be on my butt eveyr time I go out the door!
I'm about as post-op as you are. I use my eyes and knowing where my brain is as a crutch. Seams to me if my brain knows where it is at. Its happy.
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Thank you Sue.
Is it right that your tumor doubled in size from the time of diagnosis to the time of surgery?
Not sure if Sue's tumor doubled, but mine did. My AN was 1.5 cms when I was diagnosed and by the time I had surgery - approximately 6 weeks later - my neurosurgeon claimed it had doubled. My neurotologist was a little more conservative in his estimate - he's a conservative kind of guy. He said that it "almost doubled".
Rapid growth isn't the norm though. Most ANs are very slow growing.
Jan