Watch and Wait > For those in the 'watch and wait' status
To wait or not to wait....
JulieAnn:
Hello, I was diagnosed with a very small AN about six months ago. I had a hearing exam after reporting hearing loss, tinnitus, vertigo and periods of instability. My hearing exam showed moderate to severe hearing loss in my left ear, especially at the range of pitch in the human voice. It has continued to get worse. I know this for sure because I can no longer wear my phone headset on my left ear. The tinnitus is constant with loud whooshing in my ear and a low ringing that increases several times per day.
I have an aunt who I know little of her medical history except that she had surgery to remove a brain tumor, then years later the tumor came back. She is deceased now and there is nobody I've been able to gain more medical information on what type of tumor she had, etc. I have many rare diseases in my family and struggle daily with chronic pain and disability, while I work two jobs. Could it be NF2? How should I proceed to rule this out?
When the ENT diagnosed my AN, he said it was very very small and recommended I have a repeat MRI in one year. Meanwhile my symptoms continue to get worse, particularly the tinnitus and hearing loss. Is this a normal followup time frame? From what I've read in the posts it looks like followup might be in 6 months rather than 12. My current medical insurance is a terrible HMO plan through my employer, and since my husband works for the same company, I am stuck with it. This medical plan tries to limit my access to healthcare every chance they get. Yes, they really do and I have multiple examples, so it's not my paranoia. I would like to also add that I was diagnosed 8 months ago with Ehlers-Danlos Syndrome, another rare disease that is incurable and degenerative, heritable, and congenital. It, along with my severe scoliosis and degenerative disease in my neck and spine, and another rare condition, bi-lateral tarsal coalitions, prevent me from using walking, biking, etc. as an outlet for stress. I am at the lowest point in my life right now and just trying to have some control over one medical issue, the AN, if possible.
What would you do regarding the AN? Thanks in advance for the advice.
ANSydney:
Hi JulieAnn. Welcome the forum.
I would go for a follow-up MRI 6 months after the first. I would not act on the follow-up MRI, but do it again every 6 months for 2 years. I would then have 5 MRIs to determine both any change in size and whether that change is accelerating or not.
I would only deviate if the tumor rapidly grows. When it comes to hearing loss, the best course is observation. Open surgery and radiosurgery just accelerate hearing loss. Nothing can be done for tinnitus. With regards to vertigo and periods of instability, take a look at vestibular therapy. Your brain will naturally compensate for a compromised one-sided vestibular system, but vestibular therapy may help in your case.
Use the next 1.5 years to research this disease and get your MRIs on CD and examine and measure them yourself.
If you do decide to go for treatment one day, get someone independently check the measurements on all 5 MRI. It will be the same person at the same time so a more accurate (comparison) measurement. Don't give them the previous figures as it will be a means for further checking.
Cheryl R:
Having NF2 means you yourself would have to have ANs on each side or an AN and some other type of brain tumor. Having a relative with 1 possible AN is not NF2. A person with just 1 tumor and another family member later having one is not NF2 unless in time you do eventually have the bilateral or AN and another brain tumor. ANs are not supposed to be hereditary but it has been mentioned on here of some people with 1 having a relative with 1 also.
You have more than your share of health issues to have an AN also. Just make sure you see a dr who has extensive experience with ANs. Cheryl R
JKnotdobbins:
Hey Paul,
I know you are looking to hear from someone who has been on the wait & watch for a while so I am definitely not that guy but certainly understand your dilemma. I was just diagnosed 3 months ago and mine is 18mm. My circumstances are very similar to yours: age 47, blessed my whole life with great health, but now I have slight hearing loss in my left ear. I face the question which is do I take my 50/50 shot of saving my hearing now with retro sig surgery or do I wait & watch knowing that this tumor will deteriorate my hearing little by little? Not an easy choice. I realize I am lucky as I do have options and many on here don't have the luxury of having options, but I have researched this to death and still am torn. In fact, I am scheduled for surgery December 1st and am still considering cancelling and moving to w&w. I know some on here will say wait & watch is the best method for preserving your hearing but I think that depends on how long you plan on living. Even if your AN stops growing altogether it still will deteriorate your hearing.
jsteph:
I'm 59 and I've been watching and waiting for nearly 3 years. My AN was 1.9 x 1.3 cm a year ago (I'm due for an MRI now). At diagnosis, I had lost much of my hearing on my rt. side, had a couple of vertigo bouts, and had ongoing balance problems. My tumor has been growing slowly, as expected (but not hoped, of course) and I too am at a crossroads. If my next MRI shows the same growth rate as before, I think It'll be getting to the size where I may need to take intervention.
My Doc at House has recommended watching and waiting (as long as my symptoms were tolerable) as he said I could enjoy the hearing I had remaining as long as possible because, as ANSydey said, surgery or radiation would likely further reduce what hearing I had left on my AN side. So I've waited.
I should say that my quality of life has declined a bit since my diagnosis. I suspect this is probably mostly due to my AN but I can't really be sure. My hearing seems to have remained about the same, as has my balance/wonkiness (I have better and worse days). Really, my balance might be slightly better. But I'm having other symptoms that may not be related to my AN. Unfortunately, life has been demanding and stressful since diagnosis.
To move from watching and waiting to surgery or radiation is of course a hard decision. I don't regret waiting for these 3 years. I've been able to enjoy the portion of hearing I have left on my AN side and have been able to see if I might be lucky and have my tumor stop growing (or magically disappear!). I'm still hopeful that I might get some good news from my upcoming MRI but if that doesn't happen, I'll have to intervene in the next year or so.
My consulting doctor indicated that at 1.9 x 1.3 cm, there was as no danger to health and no compromise of treatment choice or outcome. He did say that I was nearing the point when I should stop watching and waiting. He advised that if/when my AN gets to about 2.2x 1.5, I should act. He said that radiation is an option to 3 cm.
Hope some of this might be helpful.
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