Some questions...

[ppearl214]

Hi Jess and welcome.

I'm sorry to hear you are having such a tough time... let me ask you a few questions, ok?

1. What city/area are you located?
2. Are the doctors you are working with affilliated with a major acute care facility/hospital (especially teaching hospital)?
3. when you left the MRI center yesterday, did you ask for a copy of your films and request that you be copied on the written report (you should have these on hand to bring to any of your upcoming dr appts)?

From what you share, I can see you are having a tough time and hoping you are feeling better soon. I'm sure the report (final) will help give you peace of mind that you seek.   If it is scar tissue (from what source, I have no clue... typically from a surgical procedure but I'm not a dr and not sure if other issues, other than a surgical procedure, can form scar tissue... maybe someone else can answer that...) and not an AN, I will be curious to see if that is the case so you can finally get the answers you seek.

Wishing you well and hang in there!
Phyl

[Jessica1973]

Hi!

I'm in Northern Virginia ... the neurosurgeon I went to after the first MRI back in October said scar tissue was a possibility, but of course that is why I had to go back 3 months later to really try to verify what it is.  I'm not sure if what I had in October was Bell's Palsy (or not) but I don't believe that ends up causing scar tissue ... but I'm no doctor either.  I guess it could be a million things - I just want it to be something so this can move on.  I do have copies of all my films 1 CT Scan - 3 MRI's ... besides the neurosurgeon - I do have to make an appointment w/an ENT and I do plan on taking the films with me.  (quite honestly because I don't want anymore MRI's )

[Jessica1973]

Well ... 2 MRI's again later - they now say they can't see the 'mass' they could see the other 2 times.  Now, I have to wait another 3 months and go back for another one. 

Oh well, maybe this is all going to be a distant memory for me soon ... I do have an ENT appointment on Moday - they say I have some terrible sinus issues going on as well - YAY for me!  :|  Anyway - hopefully the ENT can fix up my sinuses so that is one less worry I have.

Has anyone else ever been told they had a 'mass' and then told they can't see it, but had to go back some time later?  Does it normally reappear or ...??  I guess I am more concerned they I care to admit ... my follow-up MRI was done in the open unit and the pictures were lousy.  They called me back in two days later - but never told me I'd be in the closed one ... I freaked so the radiologist cut my scan time in under 15 minutes ... I worry that maybe it was missed due to that?

I guess there really are no answers to any of my concerns until I go back in 3 months ...

Thank you all for your help and I wish you all the best! 

Jessica     

[tony]

Sorry to hear of your panic
You need to reconsider your approach in the MRIs in future
ie - stay still
So, How ?
Either a) get into some deep meditation techniques
where you can lie for 30mins with your eyes shut
(so you wont really be aware of the confined space
I think its the claustraphobia thats getting to you)
or B)
look a sedation option that will calm you to the point
where a gentle snooze is an easy option

It is important that you are still for the machine to work,
and if you get a phobia about it - it may give you
harder choices in the future
Sorry to sound like your mum !
Best regards
Tony

[MCLARKE46319]

My daughter has been in the hospital for 6 weeks following her AN tumor being removed.  She is having trouble swallowing and I was wondering if anyone else has had that problem.  Her tumor was huge around a 10cm and she has had one complication after another.  I haven't noticed anyone else complaining about a peg tube or swallowing problems.

[Joef]

Yep - swallowing probems can be with with large ANs ... are you sure 10cm is correct ??!! .. if that is correct, I would surpised if NOT getting vision or swallowing problems ..

Hey Crazycat .. you had a feeding tube for a while right?

[jerseygirl]

Hi, McKLARKE,

I had 6x3x3 cm tumor removed 18 years ago and had swallowing problems for 3 months afterwards. It took me close to two hours to eat half a plate of ravioli in the hospital but it progressively got better and dissapeared after 3 months. I had never been evaluated for swallowing difficulties but maybe it is for the better because the last thing I needed in addition to all my difficulties is a feeding tube. I was really angry at nurses who removed the tray away from me half an hour after they put it in front of me assuming that I did not want to eat. I could not talk very well because I was hoarse and in pain so I could not communicate that I needed more time.

How old is your daughter? 10 cm size tumor seems too large to me. Are you sure?

     Eve

[MCLARKE46319]

The neuro surgeon said it was the size of a tangerine.  It was huge.  She has been in the hospital 6 weeks.  She had CSF leaking twice and they had to go back into the huge scar on the side of her head twice to repair the leaking.  She had a lumbar drain and then a shunt put into her back leading to her stomach.  She's had a staff infection and meningitis.  She had pneumonia and had a blood clot in her right lung which she had to have a screen inserted so if the clot traveled it would be stopped before it reached her heart.  She is finally going home after 6 weeks with a peg tube in her stomach.  She talks only on one side and can only swallow nectar juice.  She is 25 yrs old and newly married last April.  A few more months and she would have been dead.  She was having terrible headaches and as she is deaf in the ear the tumor was on she didn't have hearing loss which I read is a key to the discovery of acoustic neuroma.  I really needed her to hear of other people who had trouble swallowing because this is what is getting her down.  All of her nerves on the right side were not cut thanks to a wonderful surgeon and he said everything will come back.

[chelsmom]

Hi McKlarke,

It sound like your daughter has had a very rough time to say the least.  I am very aware of all the problems that come with these large tumors.  My daughter, Chelsea, also had a large AN.  It was 6cm, said to be the size of a lemon.  I like how things are measured by food.  Anyway, she had many complications after her surgery.  One was the loss of her swallowing reflex and had a paralyzed right vocal cord.  She had a feeding tube inserted through her nose just 2 days after surgery on June 18 and ended up with a peg tube which was inserted the end of July.  She was in the hospital from June 16- Sept. 16, 2006 and went home with the peg tube.  She has a wonderful head and neck surgeon and in Oct. when she went in for a swallow study, which she failed, he told her to go out and try to eat something soft like pasta and if she started choking then don't eat anymore of that type of food and try something else to see what she could eat.  She started with mac & cheese then lasagna.  She ate very slowly and focused on what she was doing.  She was also told to try eating with her head slightly bent forward with her chin towards her chest.  It worked and after 99 days of not eating anything by mouth we were thrilled.  For a couple of months she had to really concentrate on what she was doing so she wouldn't choke.  She had 6 weeks, 5 days a week, of radiation from late Oct. through mid Dec.  They had her keep the peg tube during this process.  After radiation was over they removed the tube.  She has been doing fine with her swallowing.  She still needs to have another surgery before June on the vocal cord at which point we are hoping that she won't need to have another peg tube.  Where was your daughter treated and what do her doctors say about her swallowing reflex?

Take care....Michelle

[Jessica1973]

Tony - No worries about sounding like my mum ... LOL!  I drove my self to the appointment - as I thought I was going back in to the open MRI as I did two days before. The lady forgot to mention to me I would be in the closed one, so they couldn't give me anything to help calm me while I was there.  Since I have to go back yet again in 3 months - I will certainly get some pills (prescribed ) to help me through.

Thanks for the advice though ...

J~ 

[MCLARKE46319]

Hi Chelsmom,

My daughter had an acoustic neuroma tumor.  She had the feeding tube down her nose first and then came home yesterday with the peg tube.  They told her not to eat anything but she could get down a thick nectare juice in the swallow test but that was it.  We are going to rehab for speech and physical therapy ( which she really doesn't need).  Have you heard of Vitastim?  They put these low dose patch things on your throat and stimulate the muscles and help with swallowing.  Unfortunately, they do not have scientific studies to show their success rate but the studies they have done on their own were really remarkable.  Our ent doctor said it wouldn't hurt her so we may give it a try if the speech therapy doesnt work.  How old is Chelsea?  My daughter Meagan is 25 and just got married last April.  It was a shock for her and us when they found this tumor.  She has a very positive attitude and she wanted me to check to see if anyone else had a swallowing problem.

Thank you for sharing because it always helps to know of other people who have had this and got through it or people who are going through it right now.

Maureen