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confused! (Read 3799 times)
DeepG
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confused!
Aug 7th, 2009 at 11:38pm
 
hey guys, im 27 yrs old and was officially diagnosed with MM last year. I probably had it for a while before that but doctors didn't know what was wrong with me.

The left side of my face is paralyzed-that began in 2006. I can't smile at all so the doctors thought it was Bells Palsy. Finally i went to a Dr in Toronto and he said i had MM.

Now i have to schedule surgery. Problem is i just went back to school and I don't want to have to take a whole semester off. I know recovery times vary, but about how long does it take. The Dr told me  i'd be off work for at least 2 weeks..or at least thats what i thought he said. After doing some searching i've heard it takes months.

I just really don't know what to do...

any help/advice would be much appreciated!
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Lore
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Re: confused!
Reply #1 - Aug 8th, 2009 at 8:25am
 
Welcom DeepG,

The issue is MM is a progressive narrowing and closing of the carotid arteries so it gets worse over time (different progression for each person - progresses faster in some than others) and it sounds to me like you have already experienced numbness in your face so the sooner you are treated the better. The surgery puts you on a level playing field meaning after surgery you stand the same chance as anyone regardless of MM of having a stroke. Of course that is based on many factors as well such as lifestyle choices.

The point being you need to have the surgery to bypass the blockage. I understand you don't want to miss a semester of school but this about your life. Missing a semester of school means nothing if you don't have your health. If you treat MM sooner than later you can spare yourself possible additional paralysis and possible further damage (stroke and/or hemorrhage).

The recovery period is different for each individual and is based on a number of factors such as current physical condition, co-morbid conditions and how well you personally handle surgery. Are you having one or both sides bypassed?

I have seen some do very well after surgery and others not so well so again, it is very individualized.

I wish you well and please ask any questions and know we are here for you.

Keep us posted.

Lore    

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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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mg12061
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Re: confused!
Reply #2 - Aug 8th, 2009 at 1:00pm
 
Hello and welcome(sorry you need us though). As Lore said the first thing you have to consider is that thsi disease is progressive AND unpredictable.My daughter was diagnosed at 5 and is now 12 yrs old and because this disease progressed faster than we thought it would she is still recovering(will most likely never recovery completely) from her strokes caused by MM). Her first signs that we actually saw(she had a couple small strokes that we enver even knew about) was she was off balance. Within a month she couldn't use ehr right hand and arm(she regained this within months( and within another couple of months she suffered 3 strokes that left her with no use of her left side).She can walk now with the help of a leg brace but still has no use of ehr left hand and arm.The great news is that even though her disease had progressed to this level she's had no strokes since her surgery.It litteraly saved her life. Recovery from and success of the surgery seem to be much better if you havne't experienced strokes close to the time of surgery.My daughter unfortunatly ahd a stroke the day before her surgery,something we were not prepared for,but since she was getting worse so quickly we really ahd no option but to go ahead with surgery.She then had another after her first surgery which was devestating.My reason for sharing my story is always to be sure others know how seriouse this can get and how quickly it can(but not always) progress. I want to be sure others make their decisions knowing this. I  have a daughter who is in college and i know how hard it is to take time off for anything even if it means your health but please think about your future.You wouldn't want to be faced with recovery from a stroke along with recovery from surgery.There are some great links to specialists who are always willing to give a second opinion if that would help wiht your decision.Please feel free to ask away of you have any specific questions there's always someone here with an answer or a suggestion as to how you can get an answer.
Mary Grace
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rgrace5  
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Re: confused!
Reply #3 - Aug 8th, 2009 at 9:47pm
 
Hey DeepG, Welcome to our MM family!

I have to agree with Lore and Mary Grace, that’s great advice. They've both traveled this road long and hard. I know if I were diagnosed with MMD, based on the fact that this is a progressive disease and without treatment every MM patient is at risk for a stroke or hemorrhage, a semester at school would be the least on my list of priorities. I couldn’t get surgery fast enough to try and avoid that.

In my family’s case, my 20 year old niece was also going to college, and out of nowhere she had her first stroke, and the doctors’ here had little experience with this disease and advised her to wait for surgery. So she ended up having four massive strokes within weeks, and although she’s alive, (thank God) she will never again be able to attend college or have a normal life. I’m not saying this to frighten you, but rather to educate you to what this silent disease is capable of when you wait.

As far as how long your recovery takes, it’s different for everyone; no two MM cases are alike. It depends on so many individual factors, and naturally it would depend on your clinical status at the time of your diagnosis. Without surgery a patients’ condition worsens, so the longer you wait, chances are the longer your recovery period could be.

So please learn all you can about this disease, so you can make informative decisions that are best for your particular case.

My prayers are with you.

Mar
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jpsteffen
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Re: confused!
Reply #4 - Aug 11th, 2009 at 6:12pm
 
Hi,

My daughter's MM wasn't discovered until she had a major stroke and now after 2 more strokes she won't be getting back to college for two years at least.  She has had her surgeries and will be very happy if she can get back to school by the fall of 2010.

Please give yourself enough time to recover from your surgery with out the stress of classess and tests.  You can expect to feel pretty lousy for about 1-2 weeks. After that it is a personal thing.  Depending on the kind of surgery you are having it may take several months for all that extra blood flow to kick in. You may be suprised to find that you will do better at your classes when the benefits of the surgeries are finally realized. Thats why it is so important that you give yourself time to heal. Your brain is going to be a little angry right after the surgery so be very nice to it.

JP
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Becky
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Re: confused!
Reply #5 - Aug 12th, 2009 at 12:54pm
 
Welcome DeepG.
I got an associats degree before my stroke and was going back for a batchlors in Electrical Engineering. But I was getting married in the fall so I decided to take that semester off. Then I had a stroke the week after my honnymoon. So i decided I would go in the spring. I was bairly healthy enouth to work a 40 hour week and they were testing me all the time so i was week from the tests and medication. So school was on hold. Then they classified me to have MM and needed surgery. My surgery was in late September. The neurosurgen sugested i wait until spring. I know you want to keep on schedual with school but I highly recomend that you take the fall semester off. Like every has stated, you don't know how long your recovery will be, and if the slight chance of complication would arise you are not locked into school stuff. For me I startd my BS in EE that spring semester. I only took one class and worked 40 hours a week. My work is paying my tuition but I have to be part tiem school and full time working. I didn't do well as well as I had thaugh i could do. I slowly inproved my grades to where i am comfortable took about 2 semesters. Don't overload yourself right after surgery. I am now 28 and still trying to finish the degree, so close to being done. My husband and i realy want to start a family but school comes first.

I hope this helpes,
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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Bev
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Re: confused!
Reply #6 - Aug 13th, 2009 at 11:39am
 
My MM wasn't discovered until I had my first haemorrhage when I was 11 I has my second when I was 33.  I was lucky and recovered well both times but this cannot be guaranteed.  I have been told surgery is not an option for me but I do know that people on this site have had surgery and haven't looked back.  A lost semester can be made up but recovery from an MM attack may not be.
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