Author Topic: new and weird MRI finding..  (Read 4490 times)

suz

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new and weird MRI finding..
« on: November 24, 2009, 09:44:21 pm »
Hello all,
I have not been on this duiscussion forum for awhile but it is sure nice to know that fellow W&W-ers are there.
Recently had an MRI of my lumbar spine for back pain and the MRI showed multiple "perineural & Tarlov cysts" which are essentially cysts that wrap around nerves near the spine. Not sure yet what the implications are of this but I though it was odd that I had was another type of growth around nerves like my AN.   I know this is a long shot but has anyone else had this type of cyst also?
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

suz

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Re: new and weird MRI finding..
« Reply #1 on: December 09, 2009, 10:11:47 pm »
I am replying to my own post so that I don't have to look at that "0" under "replies"! Haven't checked the discussion forum since I posted that comment. Logged on tonight hoping to find a bunch of replies from others that have perineural cysts and tarlov cysts along with their AN's, but I guess I will remain in my own unique category.

May you all find peaceful moments and laughter with loved ones this holiday season,
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

suboo73

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Re: new and weird MRI finding..
« Reply #2 on: December 10, 2009, 05:20:27 am »
May you all find peaceful moments and laughter with loved ones this holiday season,
Suz

Hi Suz,

I read your post this morning and wondered how you are feeling with all this?
Are the cysts painful or causing pain or some other symptom?

I am sorry i cannot be of more assistance...  From someone who also has a sister with an AN (not NF2), i can relate to your situation - what are the odds and what do they mean?  Did you try the search method here on the Forum?  Perhaps you will find a different thread with additional information.

My thoughts and prayers are with you today.
Keep the faith.

I love your holiday wishes!  Simple, elegant.
I wish you the same.
Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

HeadCase2

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Re: new and weird MRI finding..
« Reply #3 on: December 10, 2009, 01:07:03 pm »
Hello Suz,
  If it's any help, there's a Tarlov Cyst Foundation site that has more information.  The FAQ is at http://www.tarlovcystfoundation.org/FAQs.asp
The thing that AN patients worry about is NF2, which can sometimes be indicated by multiple CNS (central nervous system) tumors.  But according to the FAQ site, Tarlov Cysts may be caused by CSF pressure.   It didn't mention AN.  It may agood idea to ask your doctor if the cysts could be related to AN.  Good luck to you in finding relief to your back pain.
Regards,
  Rob
« Last Edit: December 23, 2009, 10:31:37 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Jim Scott

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Re: new and weird MRI finding..
« Reply #4 on: December 10, 2009, 02:56:34 pm »
Suz ~

I"m sorry to learn of these spinal cysts the MRI discovered.  I hope they're not going to present a problem for you.

Unfortunately, Tarlov cysts appear to be a relatively rare occurrence and likely not closely associated with an acoustic neuroma, so our members are short on information.  I can tell you from experience that this doesn't happen very often.  I trust that you'll be successful in finding out more from the Tarlov Cyst Foundation referenced by Rob ('HeadCase2') and your doctor, of course.   

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

suz

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Re: new and weird MRI finding..
« Reply #5 on: January 11, 2010, 10:18:25 pm »
Thanks for the support  - I had found the tarlov cyst website also which was helpful. Saw my AN doc last week and he said he "knows of no connection" to AN's.  Just two unusual conditions in one bod!
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

Toet101

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Re: new and weird MRI finding..
« Reply #6 on: November 27, 2016, 10:18:03 pm »
Hello,  I also have Tarlov cyst in my neck and Acoustic neuroma.  How are things for you now?

suz

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Re: new and weird MRI finding..
« Reply #7 on: December 17, 2017, 09:13:40 am »
Hello Toet101,
I have not been on this forum for a long time. I just saw your post and I'm glad to know that I am not alone!
Those cysts have not presented any problems for me in years. The job that I had at that time involved a lot of bending and I think that exacerbated the pain. I don't notice it much at all. Just an incidental finding.
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

 


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