ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: rodneyd on October 29, 2014, 02:06:45 pm
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Hi all,
Does anyone have a good suggestion for how long to wait between MRI's for those of us on W & W? I had one in October, 2013, another in Dec 2013 and a last one in July, 2014. The AN has not grown any so I feel comfortable waiting longer between the MRI's (maybe one year). My wife wants me to have one after 8 - 9 months.
My symptom's have not changed much since the initial diagnosis, so that is a good thing.
Any comments or suggestions would be welcome!
Rod
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I was diagnosed with a small AN in April 2012 (90% AN hearing loss) and by my next MRI in October 2012 it had grown 20% (100% AN hearing loss) and opted for GK which I had in January 2013.
You've had no change in size in 8 months and still have most of your hearing.
Your AN is small enough so that even a 20% growth is manageable.
Probably couldn't hurt to wait until next July for another MRI.
Monitor your hearing with frequent audiograms. They're cheap and free in some places like Sam's Club or Costco. Further deterioration in hearing could warn you to check the AN sooner.
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Rod - what does your doctor say?
Sheryl
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Hi Sheryl,
She says it is ok to wait longer than the 6 months, she wanted 9 months but I kind of talked her into a year.
Still have plenty of time to make the decision. I am a little worried about the Gadolinium effect on my kidney's/liver, as I had three within one year.
Thanks for the rapid responses!
Rod
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I understand your concern about possible effects of Gadolinium on kidneys although I haven't seen any information about risk.
Now you've had a few MRIs 12 months between subsequent ones sounds reasonable. I am now on a 12 month interval after waiting 9 months between my first and second. (rather than 12 months which is customary in the UK) I was greatly relieved when no evidence of growth was seen!
I was told to 'keep an eye' on my condition and if there's a marked change in hearing, bad headaches or a dramatic increase in tinnitus 'volume' then I should visit the hospital post haste. (fly home during winter)
I think Jack's suggestion to check for hearing loss is a good one as it can be a gradual thing that might not readily be noticed. Might join Sam's Club as a new one opened close by us earlier this year.
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Typically MRIs are done at 6 month intervals in the beginning and then if there are no signs of growth, then it goes yearly forever. The big question is what time span "in the beginning" covers. 12 months is generally considered safe because ANs are supposed to be very slow growing but that is not always the case as some forum posters here have verified with their own experiences. After my initial diagnosis, I had a second MRI at 6 months and even though there was minimal growth, I chose to be proactive and had CyberKnife (CK). Post CK I had a MRI after 6 months and when that showed minimal increase in size, I was placed on another 6 month schedule. That will probably go yearly if my AN continues to be stable.
The biggest drawback to W&W is that symptoms do not necessarily correlate to AN growth. An AN can grow with no change in symptoms. And according to Dr Chang at Stanford, the size of ANs has no relation to the degree of symptoms. Very large ANs can be asymptomatic and very small ANs can cause severe symptoms. So going solely on the basis of how you feel is not a good barometer to gauge the status of an AN and that is the reason regular MRIs are so important.
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Hi Rod! I will be going into my 8th year W+W. My first 3 MRIs were about every 6 mos. My next 4 about every year. I`m now waiting every 2 years. I don`t use gladinolium used it once and didnt like it. Will only use again if necessary. I`m feeling pretty good and so far my AN looks the same as when first diognosed. On the W+W Brigade for some good tips. Best wishes, Mickey
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Rod - it is my understanding that kidney function testing (blood work) is done before any MRI with contrast. As long as the test results are within normal range, there is no problem with contrast dye. The problems occur when patients have had abnormal or compromised kidney function testing which was not done routinely in the past.
Sheryl
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Thank you to all the responded to my query. I am pretty convinced that one per year will be sufficient for me, but will look into the hearing tests per the suggestion of arizonajack.
My symptoms haven't noticeably changed in the last 5 months, so am encouraged by that. My wife and I are active square dancers and I am convinced that all the turning, spinning and "alemand lefting" is good therapy and a whole lot more fun than PT.
I feel guilty about all of the terrible symptoms and side effects that some AN people are experiencing, when I am going about my daily life as if I didn't have an AN.
Wishing all a very Merry Christmas and Happy New Year!
Rod
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Rod - thanks for the update and glad to hear all is well.
Keep on "Dosey Doughing" (no clue how to spell it)!!
Sheryl