Author Topic: Steroids?  (Read 10034 times)

teripo

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Steroids?
« on: October 18, 2015, 07:45:54 am »
I am Watch and Wait AN.I have a 1.8x1.6x1.7 I went for my annual and Dr. said it grew .1cm.I was in a new machine.I also was told it is becoming necrotic.My hearing loss has increased and Dr. wants to put me on steroids to I guess shrink necrotic affects and maybe help hearing.I don't like steroids.Also would there be any after affects of steroid?It is only for 2 weeks and then another MRI and hearing test.What do you guys think?

PaulW

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Re: Steroids?
« Reply #1 on: October 18, 2015, 01:47:07 pm »
I have never heard of an untreated AN becoming necrotic, and scans two weeks apart is also very unusual.
Are they certain that it is an Acoustic Neuroma?

10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

teripo

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Re: Steroids?
« Reply #2 on: October 18, 2015, 02:24:14 pm »
WOW I think I have an AN?My ENT said it was becoming nuecrotic.I just took my first dose of steroids.Really nervous now!

teripo

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Re: Steroids?
« Reply #3 on: October 18, 2015, 03:11:32 pm »
Paul I think Dr. prescribed steroids because of the nuecrotic symtoms?? Good observation tho.I thought this thing was going away!True I got to ask tomm why is it nuecrotic?I know they get that way after radiation.Well Dr. showed me the "gray matter" on the MRI resultsand said in the middle the gray area is nuecrotic and poss bleed  is making the hearing worse.Dr, is an ENT mind you and now I am on steroids for a month then going back for another MRI and hearing test to see if meds improved it.But I went to groups and been on this website and never heard of this...I just been out of the loop lately {and Loopy}.LOL Good point ....

PaulW

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Re: Steroids?
« Reply #4 on: October 20, 2015, 01:40:31 am »
Necrotic or Cystic?
Dark areas can form inside the tumour caused by a fluid filled Cyst... that is pretty common.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

teripo

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Re: Steroids?
« Reply #5 on: October 22, 2015, 08:07:13 am »
Thanks Paul.Trying to find out.Dr. explained maybe she used the wrong word.Said bleeding and she put me on steroids to help the hearing cause it got worse since 2 years ago.Even tho I got MRI in Aug. she wants another after the steroids.Shes concerned that its growing and I may have to move on this.I have been stable for 4 years.It went  from 1.8 to 1.9 since last year MRI.Waiting for NYU Golfinos appt date he is more experienced in this than my ENT.Dont even want to get another MRI so soon Thanks for your replies.

PaulW

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Re: Steroids?
« Reply #6 on: October 22, 2015, 09:04:00 pm »
Its not unusual for AN's to have a quiet patch and then they grow and have a quiet patch again.
Sometimes they even shrink.
The growth measured is only 1mm which can be attributed to machine limitations and measurement error.
A more accurate way to measure growth is to measure the volume of the tumour, Dr's may have the tools to measure volume changes for your tumour which maybe a better indicator than dimensions.
If you were happy to W&W from 1.8 to 1.9.... which might not even be 1.9. I would think you can continue to be on W&W if you wish.
If it keeps growing at the current rate it will be 48 Years before it reaches 3.0cm and something probably needs to be done.

I have had quite a few reports from people that have had an MRI from a new machine and it has measured bigger.
Mostly this is due to finer slices, which will go through the widest point on the tumour, while thicker slices sometimes will miss the widest part of the tumour..

Did they use contrast?
The tumour can look very different with/without contrast. and it may mean nothing.
Different settings on the MRI Machine can also make some areas look different/dark even if nothing has changed.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

teripo

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Re: Steroids?
« Reply #7 on: October 25, 2015, 10:31:05 am »
YEs PAul thanks I needed to hear that.I am still happy with W/W.They used contrast and no contrast.The MRI last year was open and the last 3 years for that matter.This one was closed and stronger magnet.The ENT thats local and watching it is trying to help hearing right now with steroids.Dont know if im willing to take MRI again next month.She wanted me to see if it grew from last month and suggested if its growing to get radiation.I made Dr. Golfinos @ NYU look @ reports and going to send CDs in to city to him.Secretatry said he said it wasnt anything to worry about and I can take MRI in Jan and see him.I can see why ENT put me on steroids I think to make my hearing better and save it.It got worse since last one 2 years ago.I mainly didnt like her saying it was nuecrotic.She corrected herself and said it was another term for bleed or inflamed.???

PaulW

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Re: Steroids?
« Reply #8 on: October 25, 2015, 07:55:20 pm »
Open MRI's have a far weaker magnetic field.
It could well be that the differences are due purely to the difference in machine.
As for steroids. My doctor said that while steroids can be useful for hearing preservation for other forms of hearing loss, he said there was no proof whatsoever to show that prescribing steroids has any effect on LONG TERM hearing preservation in Acoustic Neuroma.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

teripo

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Re: Steroids?
« Reply #9 on: October 26, 2015, 05:39:25 pm »
OK Im off the steroids!Thanks you so much.I cant believe what a guniea pig I can be sometimes! THis ENT has been following my case last 4 years.So now I am goingto a different one also to NYU to show Nuero my CDs. just to calm down.Sorry you can tell I am all worked up.Ive been up since 3 am.Hearing is something to think about tho.If it got a little better would it be better if I got treated?Thats what the steroids made me think.Like I dont have to wait till its all gone?

ANGuy

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Re: Steroids?
« Reply #10 on: October 26, 2015, 06:49:53 pm »
I don't follow you, you stopped taking steroids because you finished the course of them that was prescribed to you, or because you just decided that you weren't going to follow your Drs.' advice? 

While I don't know how effective steroids are for AN symptoms, I can tell you that they are not some form of quackery.  They are a conventional, commonly prescribed, treatment for AN symptoms.  It's not simply a matter of "steroids are bad" and I don't think that is what anyone is saying here.

I know my Dr is prepared to prescribe them for me should my symptoms suddenly worsen and while the side effects from them aren't typically pleasant, they are temporary and I will take them if the situation warrants them.  Being prescribed steroids for this medical condition does not mean your Dr is treating you as a guinea pig.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

teripo

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Re: Steroids?
« Reply #11 on: October 27, 2015, 07:09:29 am »
Dr. stopped them cause I was experiencing side effects.What would you use them for?

KeepSmiling

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Re: Steroids?
« Reply #12 on: October 27, 2015, 01:13:30 pm »
My husband had some bad problems from a month long course of heavy steroids. The prednisone was prescribed prior to his diagnosis of the vestibular schwannoma. Why was it prescribed? The steroids  were prescribed because there was uncertainty about whether my husband had a virus which caused the deafness. 

Once the MRI revealed the acoustic neuroma, the otolaryngologist who had prescribed the Prednisone realized that he had very bad symptoms (including other bad symptoms- not just chronic hives) and the doctor said to taper off the steroids. (Sudden cessation causes problems too- it is never wise to suddenly stop Prednisone)

 Not one doc will admit it, but my husband firmly believes that his chronic hives were the result of the month of very heavy steroids taken as prescribed. He had no hives before he took the  prednisone. After he took the prednisone and before he had Proton Therapy, he had chronic hives. He would get these hives multiple times per week. Itchiness is not a pleasant condition.

Once he had the Proton Therapy , which was about eight months after he had taken the prednisone for a month, his chronic hives were almost always gone. (with only an occasional flair up) An allergy doctor that he saw after he took the prednisone suggested that he should try to take the smallest dose of an allergy pill to combat the hives. The allergy specialist prescribed that he split an allegra pill in half and take that when he got the hives. He did that from Jan until August and it worked. Luckily the chronic hives went away once the Proton Therapy treatment started. He has not visited the Allergy doctor since 2013.

My husband reacted poorly to Prednisone in many ways. 
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

ANGuy

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Re: Steroids?
« Reply #13 on: October 27, 2015, 02:03:01 pm »
Dr. stopped them cause I was experiencing side effects.What would you use them for?

Good, the Dr took you off of them.  I was concerned that you just decided to not take them on your own. 

I would take them for the same reason you would if my symptoms "acted up" like yours did.  They did once, but that was before I knew I had an AN and what lead to my diagnoses.  By the time it was all diagnosed, about 2 weeks, my symptoms had subsided.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

teripo

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Re: Steroids?
« Reply #14 on: October 31, 2015, 06:09:34 am »
It is a now a week I am weaned off steroids.I am changing my Dr.I have been nauseous for a week and still am a little.That stuff was poision to me.I was givin a new ENT.I took 42 pills in a week then 4,3,2,1.So 52 pills.I guess its a learning experience.