Links to Multiple Sclerosis

[Caroll]

Hi Everyone

My name is Caroll, I am 45, Aussie and have lived and worked in Kuwait since last August.

I had a 4cm AN removed at the end of 2003 with further surgery 6 weeks later to repair a CSF leak.  My recovery was good after that despite fatigue, balance, hearing, equilibrium and eye problems continuing - though lessening.  The discovery of and surgery on the AN represented a major life change for me and less than one year after surgery I took a 3 week holiday in Egypt then 18 months later a 2 months trip to UK and England, and now here I am living and working in Kuwait.  From here I take every chance to travel.  My three grown children (19-14) live in Aus and I am going back for 6 weeks at the end of this month.  I am so looking forward to seeing them again.

I often now forget that I had major cranial surgery and chastise myself for getting so tired, so quickly.  Reading many of your postings reminds me of just what my body has gone through and that I shouldn't be so hard on myself

One thing that has been on my mind lately is if there is a connection between Multiple Sclerosis and AN.  I have searched the internet with no results either way.  I sometimes have a problem with slurred speech and forget words (very regularly - and this also occurred before the operation).  Other symptoms such as balance and co-ordination are definitely related to the AN.  From what I read MS "occurs when the protective sheath (myelin) around the nerve fibres in the brain .... become damaged" and ANs originate from the sheath surrounding the eighth cranial nerve.  At least that is how I read the information I have found.

Does anyone know of any links to MS?

Regards

Caroll

[Caroll]

Thanks Bruce

Your reply has certainly clarified the differences between the two.

Caroll

[Betsy]

Hi Caroll,

Good summary Bruce!  Many of us were diagnosed with ANs while testing for MS.  In fact, I was very surprised when the doctor called and said it wasn't MS.  The early symptoms can be very similar.  My Dad had MS, so when I was first diagnosed I kept asking if there was some sort of common link between the two....and the doctors assured me there wasn't.  Still, I think it's ironic that I have too many of the cells that produce myelin, and Dad could have used some decent myelin!

As to forgetting words, one of my doctors said that if the brain is moved (retracted) during surgery, the area most likely to be affected was the part that matches words to what you're trying to express.  I didn't pursue the issue...I'd heard enough by that point!  I forget words too sometimes (even without having surgery), and I'm starting to think it's just one of those things that comes with age.

I'm glad you posted, Caroll.  It's encouraging to hear that you're doing so well after AN surgery AND a csf leak!  Do you travel by air?  Any ear issues with the altitude?

Betsy

 

[lori78]

Hi--

I believe I was misdiagnosed w lupus (tested me for MS, the works....) 5 yrs ayo and they found my large AN last year.  I work as a music therapist for folks w MS and can say, while I don't KNOW, a conference I attended point to direct testing for MS.  I, too, have awfrul short term memory problems, losing the point of my story, and loss of words.  I think this i all part of recovery... my residents w MS get routine MRIs w no signs of AN.  So, no worries, I hope!

[Caroll]

Hi Betsy and Lori

Thank you for your postings.  While it is not fun forgetting words or having speech problems it is comforting to know that there are people out there who understand totally.  Most people just say "oh must be getting old" which is just annoying, I will always be 25 

The link with the brain moving during surgery might also be relevant before surgery too if one has a large AN which is pushing the brain as it grows?

I suspected (in fact I knew what it was) an AN in April 2003 and was properly diagnosed in about August - after some convincing my GP that I did indeed need to have tests and see an ENT.  I was living in a small country city in Australia which also meant things moved a bit more slowly as there are no specialist ENT surgeons in that town.  My first operation was in early November originally should have been late October but one of the surgeons was sick.  The second op was on 22/12/03 and I spent Christmas day in Royal Brisbane Hospital - very quiet and boring.  The surgeons were great,  very approachable with 10 years experience in AN surgery.  I was on the operating table for the first operation for 14 1/2 hours, the second just 2 hours and 8 minutes   The length of the first surgery was something I had not expected and did not find out till the afternoon before the originally scheduled surgery when the very honest Registrar set me straight.  Just as well I was asleep the whole way through

I generally have no problems with my ears on planes.  I have been flying regularly now for 9 years, the first 7 years of those were mostly in Australia on smaller planes, DC8 and Fokker Friendship size planes.  Occasionally my ears do get sore on some landings in the smaller planes.  I try to always remember to take chewing gum along just in case.

Well apart from teaching here in Kuwait I am also attempting to do a Masters in Training and Development and I really must now get in and do some study.  Forgetting words is not an issue when I am writing because there is no pressure and I can always go back to that bit later.

Caroll

[kat]

HI everyone

About 8 months after after my GK I had an episode of headpain and I put a question about it on a forum on the net but I now cannot recall which forum but it was not as well designed or frequented as this one . The answer was as follows " You will be in pain for the rest of your life possibly damaged by radiation from your GK and there is proof that it GK can cause MS "

Phew !!! This was not something I had come across in any of my reseach and I dismissed it as irresponsible and cruel nonsense
and said as much on the website which I have not visited since .

It is only now having seein this topic that I wonder whether there was any grain of truth in that statement .


Regards Kat

[Jim Scott]

Hi, Caroll:

For whatever it might be worth:

I had a large AN (4.5 cm) that, by the time it was diagnosed, had pushed my brain to one side of my skull.  Ironically, my symptoms were impossible to ignore (disequilibrium, severe fatigue and loss of appetite) but not totally debilitating, so I foolishly endured them for a few months (and lost 30 unwanted pounds) before seeing a doctor, having an MRI and finding out that I had an acoustic neuroma tumor residing inside my skull.  During surgery, it was necessary for the surgeon to move my brainstem 'slightly' (his words) but he assured me this very likely wouldn't be a problem in my recovery....and it wasn't. 

I don't notice the loss of any cognitive functions.  My memory seems the same as always, my speech is fine (I'm an inveterate talker, a remnant of my career as a radio broadcaster/D.J.) and I read as much as always as well as spend time on the internet, both reading and posting messages, as I do here.  No problem. 

I had a very experienced AN neurosurgeon (30 years).  I also underwent follow-up FSR treatments last autumn.  Neither the neurosurgeon or the radiation oncologist ever mentioned anything regarding links between acoustic neuroma tumors and MS.  Probably because they don't exist.  My symptoms were clearly due to the AN tumor and rapidly diminished following my 9-hour surgery last year. I've even managed to keep the weight off!  I realize that I was immensely 'fortunate' (I believe in prayer) and probably not your average AN patient in some ways.  However, while every AN patient doesn't necessarily experience my positive surgical/radiation outcome, neither does every AN patient (surgical and/or radiation) have resounding complications, even though some AN patients, unfortunately, do.  I believe that relating my 'AN experience' here has value because it helps balance the two extremes (quick recovery/hard recovery) and can encourage the newly diagnosed, who need to know that their AN diagnosis isn't the end of the world.  Life-altering to various degrees, yes, but, as I like to put it: surmountable.  You are proof of that and I thank you for posting. 

Jim

[Caroll]

Hi Jim
Thank you very much for that encouraging posting.  I too think it is important that positive results and outcomes are passed on.  I am absolutely under no doubt that accepting the tumor, having faith in a positive outcome (a positive outcome doesn't mean everything rosy but that things could have been worse), a degree of physical fitness, meditating and the support of loved ones were the main factors in my recovery - and of course an experienced surgical team.  By far in all of this though - a positive attitude has to be the most important single factor. 
I wish though I had lost the weight you lost
Caroll

[deea]

Hello Caroll,

to introduce myself....My name is  claudia,  known as deea on the board, I am 55  and was diag. with R/R MS about 11 years ago.  I  am now 55 and have beendoing quite well the past several years.  I have been on the injectable drugs for about 8 years,  Don't know if its been the drugs, or just the nation of the relapsing/ remittimg type if ms that I have,don't really care, but it has been great to be able to enjoy my grandkids.  In the the beginning I thought I would never be able to hold my grandbabies...in fact , I have been the Nana, full time daycare provider for each of my 6 grand kids, 2 of them for 5 years each and the others for the first year.  I would not exchange that time for anythiing,  The kids know and love their NANA, and their Nana loves each and everyone of them.  They are 1,2,3,4,5,and 11.  Quite a special bunch of kids.

To get to the link  between A  and MS....there just is not any, or at least that is what I have been told by several  neuro's and other Doc.s   Different ducks, not related, at all and I tend to agree, Just lousy luck.
 
I hope things are looking up for you.  Hang in there.  Things will seem better and life goes on.

Take care of yourself,
Deea                                                                     

[Dana]

One little factoid that might also clarify  the fact that there's no relationship between MS and ANs -- with contrast MRIs, multiple sclerosis shows up as little white dots in all different parts of the brain and/or down the spine.  MS isn't a tumor.  My husband was diagnosed with MS in the last year, so we've become amateur radiologists !!!!
Dana

[lori78]

Oh yeah!  Two months later... my POINT was I work w 60 folks w MS and none have AN.... if that says anything at all....