AN removed in 2005. New, similiar type symptoms!!!

[MyrnaB]

I had my AN removed in 2005.  I went through the many problems with balance, lost hearing on my right side, etc.  I have no facial paralysis and no headaches.  But, a year ago I started experiencing a fuzzy minded, medicine head feeling.  I had another MRI this last January and no re-growth in that area.  As I was copying my medical records yesterday to change primary care doctors, I found a 2006 radialogy report that says: 2.10 mm cystic lesion within the prepontine cystern and likely represents an arachnoid cyst.  I was never given these facts as my primary care physician retired and the report was never read to me.  Today I faxed it to the neurotologist that surgically removed my acoustic neuroma and he set me up to see a neurologist in the same hospital he is in two weeks.  Within the last month I am experiencing numbness around the forehead and on both temples and around the upper eyes.  My vision is going bonkers and my night driving is totally distorted.  I feel like I have a band of numbness around the front of my head.  I am going through all the things as I did in finding my AN.  The doctors look at you like you are crazy and it is all in your head.  I found my AN in 2005 in an MRI report a neurosurgeon handed me back after he told me I needed a shrink because I had too many symptoms.  Two weeks later AFTER he sent me on my way, he called and wanted to discuss the MRI and a tumor.  I SAID, I DON'T THINK SOOOO!  Have any of you heard of this type of cyst or lesion after having a AN removed?  I am wondering why the neurotologist scheduled me with a neurologist and not with himself again.  Any suggestions?

[leapyrtwins]

Myrna -

I've never experienced anything like you describe - either before my AN was removed or after.  I do remember someone on this forum not too long ago asking about, or referring to, an arachnoid cyst. 

If you search under "arachnoid cyst" you can probably find the post I'm thinking of.

Jan

[MyrnaB]

I have been looking on the internet all day it seems.  I am trying to find out if it is located in the internal auditory canal.  I am deaf in my right ear from my AN removal.  But, I never had anything like numbness in my forehead or by the temples on each side of my head.  The other ""head"" feelings are similiar to what I had before.  I guess I will see what the neurologist says on the 27th.  I am seeing my ENT who helped me diagnose the AN next Tuesday.  Maybe he can shed some light on the subject.  Thanks for the input.
Myrna

[4cm in Pacific Northwest]

Myrna,

HUGS

To be going thought this all over again. Oy ya ya … I am sorry you are in that anticipation stage.

RE
â€? I am wondering why the neurotologist scheduled me with a neurologist and not with himself again.  Any suggestions?â€?
Maybe he sent it to a neurologist as it is not in the realm related just to the ear, nose and throat…

“Arachnoid cysts� defined
http://www.answers.com/topic/arachnoid-cyst?cat=health


more info
http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm

More Hugs,

Daisy Head Mazy


 

[MyrnaB]

Thank you Daisy.  I have been spending the last hour reading what you referred me to and it is very interesting.  Now I see why I am being referred to a neurologist.  Thank you so much.  I will keep you clued on what I find out. 
Myrna

[4cm in Pacific Northwest]

Glad to help.

Hang in there.

Daisy Head Mazy

[Jim Scott]

Myrna:

I'm so sorry to read of this new set of symptoms and the confusion over their cause.  I hope and pray your consult with the neurologist will shed some light on this for you.  Meanwhile, we wish you all the best and stand ready - as Mazy already has - to offer information, support and advice if and when you need it.  Please stay connected.  We care what happens and want to help.

Jim

[Omaschwannoma]

Myrna,

I just saw your post today and wanted to respond as I posted earlier on this very issue.  While filing away papers I took the time to re-read the surgical report of 2005 when I had my AN removed.  In this report the neurosurgeon stated he saw multiple arachnoid adhesions in the pontine angle, removing them in order to get to the tumor.  I was never told of them post surgery, they were seen on MR films, but no one told me.  I recently had surgery to correct problems I'd been having where MR showed inflammation and some sort of protein material in the cochlea and surrounding area of my inner ear and after this surgery I was filing away this report when I came across my old report of 2005.  I asked my neurotologist about the arachnoid adhesions and he used the term "lesions", don't know if there's a big difference here, but told me they probably will return, probably have them on the other side, they aren't too concerned at this time with them.  So, I'm not overly concerned, especially after reading info about them whereby they don't treat them surgically unless other methods of treating symptoms fail.  I guess I'll deal with this when they "pop" up.  I recently met with a neurologist/surgeon in my town and she stated these cysts are present and wants to have another MR done, but I have been on vacation these last 3 weeks so won't be dealing with this yet.  Not sure what she will say about them either until I return home and meet with her. 

I will be waiting for your post (if you so choose) regarding what your neurosurgeon tells you about this.  Sorry you are dealing with this, hope all comes out well after your meeting.  Feel free to "PM" me.

[4cm in Pacific Northwest]

mmm GEEE

Maybe I too - should look over all those reports in more detail...

Daisy Head Mazy

[chelsmom]

Hello Myma,

I saw your post and had to reply.  My brother,Scott, was diagnosed with a 4 cm aracnoid cyst in Dec. 2006.  His is at the back of his head.  I went with him to the neurosurgeon's appointment at Loma Linda University and he said that the horrific headaches that Scott suffers could be from the cyst.  He was in a terrible auto accident with major head trauma when he was a teenager and he has had pain ever since.  We were also told that people can be born with these cysts or as a result of trauma or a tumor.  Thing is, they just want to watch it and for now try and get his pain under control.  I understand that it all depends where the cyst is and the problems it's causing, not the size, before they start thinking about surgery.

I hope you get some relief and answers soon.

Take Care,
Michelle

[jerseygirl]

Hello, Myrna,

I don't know much about arachnoid cysts but when I was in for my second surgery, the second case of the day (I was the first one) was a 19 year old girl with a 5 cm arachnoid cyst. I got to meet her and my husband quickly became friends with hers. Her symptoms prior to diagnosis were horrible headaches. After Dr. Shahinian removed the cyst, the girl was in the same hospital. She started walking sooner and better than I did and looked perfect even though she complained of "feeling it in the face". Hope this helps.

               Eve

[MyrnaB]

You all are really giving me some good input.  What is funny is that I do get headaches occasionally, which I have never had.  But, they aren't extremely painful.  My biggest complaint is a medicine head, fuzzy feeling like I had back in the 70's when we played around with pot.    Giving away my age, I know.  Anyway, my experimenting at that age was shortlived as I hated the fuzzy headed feeling.  My forehead and area above my eyes seem numb and I feel a fullness on the right side of my ear which was my AN side.  I have quit driving again as my eyes are doing crazy things.  I have had a small mass at the middle of my neck to the base of my neck.  The doctor did an ultrasound and said it was nothing.  It seems to be bigger some days like it is filled with liquid and then not noticable other days.  Several weeks ago I was given 2 units of blood and they say I have a GI bleed.  But, I have never exprienced stomach problems, ulcers, gas, belching, or anything to indicate stomach problems.  I know I am reading into things, but it makes me wonder if a leak of some type or a cyst, can leak blood downward.  That would explain why they can't find the leak and that my blood is coming from somewhere.  Now I am wondering if I have a GI leak at all!!  I have a lot of questions to ask the neurologist next Tuesday.  He called this afternoon and wants me in Seattle on Monday afternoon for a full series of MRI's and C-Spine Xrays and we will discuss it Tuesday. 

[MyrnaB]

Hi ya'll
Well, I went to the neurologist and he said I do have a little cyst that has never grown but is very visible on the MRI.  He said that there is no tumor, cancer, or anything to fear.  It showed that my sinuses are really bad, which I know, and have already had two surgeries.  I am seeing my ENT this next week with the MRI to see if infection is causing all these problems.  I just got off a heavy antibiotic and prednisone for a sinus infection so not sure what he can do.  We are going to get a second opinion because the neurologist we saw was so busy that he barely heard anything I was saying.  In the twenty minutes we were there, after a two hour drive and a stay in a motel, he left the room twice and took three phone calls.  A wasted trip other than confirming that I had nothing serious that needed attention ASAP.  I feel better about that.  I have learned that no matter what I have done, I have a copy sent to me.   

[leapyrtwins]

We are going to get a second opinion because the neurologist we saw was so busy that he barely heard anything I was saying.  In the twenty minutes we were there, after a two hour drive and a stay in a motel, he left the room twice and took three phone calls. 

IMO this is unbelieveable and downright rude.  I can understand emergency situations occur from time to time that docs have to deal with, but leaving the room twice and taking three phone calls    I'd be calling his office and asking that the cost of this appointment be refunded to me.

I'm glad to hear that you don't have regrowth of your AN or any other tumor growth for that matter.  Thank you for updating us.  Good luck with your ENT next week.

Jan

[Jim Scott]

Myrna:

I'm pleased to learn that you don't have another AN or anything serious.  That the neurologist acted rudely is unfortunate.  These kinds of insensitive physicians give the good guys a bad name.  I hope your next doctor appointment is more pleasant. 

Jim