Should I do surgery?

[minnie76]

I thought I was out of limbo land...

Mother of 3, married for 12 years Lives in the Toronto area

Oct 2011 - Back from a cruise ship
Bad ear infection / Tinnitus / Very Light Headed for 2 months
Weird buzzing sensations all over body..especially in head!!

Jan 2012- Blood work all normal
MRI- Shows lesions report states "excessive Demyelination for someone of her age group"35 at the time

Neuro says prob from migraines. By then my arms have been falling asleep at night, but told it's prob carpal tunnel.

Orders another MRI in July to see if there's progression.

April 2012- BALANCE test at Toronto Gen Hosp to rule out Meniere's and to see IF there is a cause for my lightheadedness...1 test came back with abnormalities but ENT doc says my symptoms are not matching the test results (poss loss of VEMP in right ear...I would feel like I was falling..but never felt that)

July 2012 - 2nd MRI states no changes in number or location of lesions...

Lightheadness back from July-Sep 2012
On and Off fatigue - weird feelings in legs- muscle twitching-muscle weakness-left side of face feels weird..but nothing last over 24hrs

Neuro says "not MS, cause your MRI would have progressed" not happy about that answer

I go see an MS specialist in Sep 2012...by then I've been getting weird facial buzzing

MS specialist agrees with Neuro1..not MS...
Sooo happy!
says that if any of my numbness last for more then 24hours to come back and see him.
To make things more complicated...I have a cyst behind my cheekbone(stable for 5 years)...and that is prob Y I'm getting weird sensations.

Oct 2012- In hospital, I had visual field bouncing and saw twinkling lights only lasted seconds but weird. Neuro #3 wants to monitor me so I c him in 6months..and once again I get told the facial thing is from the cysts

Nov 2012 - till present -on side where the cyst is .. facial buzzing / burning/occasion stabbing pain..weird fullness of cheek for over a month!!! i feel like I have a feather tickling my face...I'm constantly scratching but i never get relief...stabbing pain is very painfull but lasts seconds and have had it a few times. Nothing takes the pain or sensation away not even Tylenol with codeine

ENT(seeing him for a few years to monitor the cyst) wants to do surgery (it's been soo stable for so long)
Y now am I getting any symtoms if it has not changed in size???

Question....should I go through the surgery and "Eliminate" this "Complication" it is the only symptom that has lasted more then 24hours (other then lightheadness)...what if it's not from the cyst..do I go through surgery???(not a financial ? cause I live in Canada)

Thanks for your time!
Minnie 76

[gomer]

Hi minnie...

Keep in mind medicine is part ART & part SCIENCE.

So many things are as simple as black and white.

Only YOU can decide what is best for you, as well as what you are most comfortable doing. Gather all the knowledge/information, about the surgery as well as the risks of the proposed surgery etc.

N short its a crap shoot if it will help with your Sx. One sticky point is if you never have the surgery, how will you know it was or was not the cyst?

Just my threpence (I am worth more than 2 cents ha ha)

Gomer Sir Falls-a-lot

[minnie76]

Hi Gomer!

Thx...that's what my husband is saying...he thinks I should eliminate the "factors" as much as poss and see if I'm still going through my weird symptoms.
I'm just curious as to why ALL of the sudden this cyst is causing these issues..or could it mean that I'm getting worse(neurological)

I just called my Rheumy..not all blood work is back but my Vit D levels are 68..not crucial but on the lower side...
I had been taking Vit D..but stopped the last couple months.
My fam doc sent me to Rheumy cause in the summer my tissue around ankles and wrists swell...
I wonder if anything else is going to come up!
Funny cause my blood work in summer was ok.

Thanks again!
Minnie76

[22cyclist]

Minnie: You might as well do it if there is no real risks involved other than it is surgery. It will eliminate that question (is this or is this not related to the cyst). Then you can sort out everything from there.

In other words, if I were in limbo, I would do it myself I guess I am saying. It might make you feel better. It doesn't sound like you have trigeminal neuralgia, so eliminate that piece of the equation (the cyst) and go from there.

Just my opinion, I am not the one who has to go through surgery, so take it with a grain of salt.

Take care
Lisa

[FourPaws]

If the symptoms are troubling enough, I'd suggest going for it. The nervy stuff you're describing (numbness, tingling) could be from it putting pressure on nearby facial nerves. You'd have to ask the drs if they feel those could be caused by it.

Narcotics work very poorly on the nerve stuff you're having. The drugs of choice for them tend to be the antiseizures such as gabapentin. You'd have to weigh how much they are troubling vs the side effects from those drugs. For me, it's worth it, but a lot of my nerve stuff is very painful.

[JerryD]

I am happy to hear that you are aware of your vitamin D levels. Do you also know your vitamin B-12 and magnesium levels. There is also a 'new' thought in medicine involving the levels of hormones as they relate to MS diagnosis. Estriol, testosterone and many other hormones may be a factor that medicine has been overlooking in MS treatment. I don't know for sure, but something has been missing in MS treatment for a long time.