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new here...let me introduce myself (Read 4939 times)

nopi98

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With God....all things
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Posts: 33
Pickens, USA, usa, 431, 202, SC, South_Carolina
Gender: male

new here...let me introduce myself
Aug 11^th, 2008 at 1:14pm

Hi all...I am new to this board. I suppose I'll start with a quick history.

I was working out on the evening of Oct. 24, 2007 when my left side went numb all of a sudden. I barely made it to the couch when the left side went completely numb and my head started to hurt. I don’t remember much after that except feeling really scared. I didn’t know what was happening, the last thing I remember saying was 'I love you' to my wife and father who luckily were present at the time. 4-5 days later I woke up in the ICU at our local hospital. I was told that I had suffered a stroke and brain bleed...as we all know are related directly to the disease. At first the doctors (Doctor Know Nothings--as I like to refer to them Wink

) thought I had a moyamoya phenomenon. In which I showed the initial symptoms of moyamoya disease but not really have the disease itself. However a 2nd angiogram performed in early December (after I was finally released from the hospital) showed I had full blown moyamoya disease. I was told that there was basically nothing I could do and that there weren’t any surgeries or anything for that matter for what I had. (Hence the Dr. Know nothing name). As far as I know, I am one of the only cases to appear in upstate SC. I was told that I would have live a non-strenuous life-style and hope that I wouldn’t have another stroke…which as I am told will come anyway…and hope that it doesn’t kill me. I was lucky…God and my family was on my side. I have now since recovered from the stroke with little to no signs that it ever happened. I just can’t be sure that I will be so lucky next time.

So here I am…almost a year later and waiting to go this Wednesday (8/13/2008) to Emory medical in Atlanta, GA to see Dr. Daniel Barrow. I’m hoping and praying for the best, yet mentally (trying) to prepare for the worst…because although I’d like to think of myself as a “glass half full” kind of guy…when it comes to such serious matters, I’m afraid my thinking turns more to the “glass half empty” mentality.

I realize I’ve waited entirely too long to get my second opinion…but hey…better late than never.

Thank you DJ for creating this website….it has been helpful in so many ways. May God bless you and everyone here. Please keep me in your thoughts as I head out this Wednesday, and hopefully I can come back to report great news.

Here’s to the start of something great!!!!

« Last Edit: Aug 25^th, 2008 at 12:26pm by nopi98 »

He died for us...the least we can do is live for Him.

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Mar

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Re: new here...let me introduce myself
Reply #1 - Aug 11^th, 2008 at 2:00pm

Hi,

Welcome to our MM family!

I think it's a start to something great. You have your faith, our prayers, and a MM family behind you every step of the way, and now you’re heading to a doctor for some answers and hopefully treatment. That’s a great start!

There have been a few members here from SC who went to Emory and had Dr. Barrow as their surgeon. That too is great news. We see all too often many doctors who do not have enough MM experience, so that’s on your side as well.

My only advice to you at this point would be to learn all you can about MMD, so you and your family will be able to make informative decisions down the road you’re about to take. Surgical treatment is the only successful approach with MMD, too avoid that next stroke that’s waiting to happen, and I pray the road you’re on now will keep that second stroke from happening.

You certainly have my thoughts and prayers!

Please keep us posted.

Mar

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nopi98

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With God....all things
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Posts: 33
Pickens, USA, usa, 431, 202, SC, South_Carolina
Gender: male

Re: new here...let me introduce myself
Reply #2 - Aug 14^th, 2008 at 11:08am

Well I made it back from Atlanta with my visit with Dr. Barrow. I've gotten the news I was expecting the whole time. I need to have the bypass surgery...more so on the right side than left, but both need it none the less Sad

.

Thank you for your support in this.

I have some questions for those of you who have gone through this surgery.

First and foremost...Do you feel better?

What were some of the things you dealt with after surgery? (i.e. pain, any difficulties, heal time, etc.)

I know this next one is probably personal, but I need to ask so I know approx. what to expect.

I'm not a man of many financial riches...I barely have enough insurance to cover a trip to a family physician much less a neurosurgeon. I know that for this surgery the hospital is going to want something upfront...I'm just not sure what percentage.

Could some of you give me approximates of what this whole ordeal costs? (Hospital stay, ICU, surgery itself, recovery...etc). I realize everyone has a different story to report on...and everyones personal situation was different. But I just need an around about kinda thing so I can at least start to know what I am looking at here.

Also...if anyone knows of any kind of financial assistance programs I could look into...that would help GREATLY. Right now its our plan to have whatever fund raising deals we can muster at my church. But I know this wont be enough. So anything you guys can offer as far as programs etc. that I can sign up for for financial assistance would be very helpful.

Please keep me and my family in your thoughts and prayers. I dont need to tell anyone here how stressful this is. Just please pray that God helps me find my answers.

Thank you and God bless you all.

Fred

He died for us...the least we can do is live for Him.

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amy

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I love YaBB 1G - SP1!

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floydada, USA, usa, 229, 215

Re: new here...let me introduce myself
Reply #3 - Aug 14^th, 2008 at 11:20am

I DIDNT EVEN KNEW I HAD THE DISEASE BEFORE I WAS DIAGNOSED BUT THINKING BACK NOW EVERY THING MALKES SINCE I HAD FAINTING SPELLS SOMETIMES ONCE A MONTH STARTING AT THE AGE OF 14 OR 15 I AM 41 NOW. I HAD MY SURGERIES IN 2000 AND 2001. AFTER THE SURGERIES I DONT HAVE FAINTING SPELLS BUT I AM TIRED ALL THE TIME. I WASW THAT WAY BEFORE MY SURGERIES TOO. I ALSO HAVE MIGRAINES EWJICH ASRE PRETTY MUCH CONTROLLED WITH MEDICATION. AND MY MEMORY IS SHOT. I THAT JUST GOES ALONG WITH THE DISEASE. AFTER MY FIRST SURGERY HAD HAD A STROKE WHICH AFFECTED MY SPEECH AND ABILITY TO COME UP WITH MY WORDS. I HOPE THIS HELPS

AMY

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Lore

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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: new here...let me introduce myself
Reply #4 - Aug 14^th, 2008 at 12:28pm

Hi Fred and welcome to the moyamoya family.

We all know how overwhelming the diagnosis of MM can be and the stress that comes with such a diagnosis. Just remember there is a wealth of information on this site and many have traveled your same road and will support you through this journey.

My brother had both sides operated on in 2005 and he had pain from the surgical incisions most likely some muscle pain as well but he never experienced headaches or other types of pain or dizziness as an example. Like you mentioned, it is different for each individual.

The cost of the surgery obviously varies by hospital and location and other factors. You can discuss the cost with your surgeon and the hospital. In general the cost range can be around $100,000.00 and beyond depending on whether one or both sides are operated on and how long you stay in the hospital and how long you are in ICU and if you experience extenuating circumstances. The costs are based on reasonable and customary for the type of surgery for your geographic location.

As for financial assistance, the hospital may provide payment arrangement options suitable to your situation. You may also want to ask them if they are aware of any other type of financial assistance that you may qualify for in your area.

I hope this helps.

Please keep us posted and ask any questions.

You are in my thoughts and prayers.

Lore

"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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lotsofkids

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: new here...let me introduce myself
Reply #5 - Aug 14^th, 2008 at 1:45pm

Well.....glad you made it here!

Don't worry that you've waited and now it's too late. It's really never too late and as you are at the surgery stage of things.....it sort of erases 50% occluded vs 100% occluded....because after surgery..you will be completely replumbed!!!

Anyhow...not to make light of things. I went to the docs for 5yrs with my moyamoya, only to be told there was nothing wrong with me. (they even saw it 2yrs earlier on a perfect MRA and the radiologist reported both coratids were blocked and said it must be "motion artifact" (a poor film) and stressed it must be repeated. The doc treating me was a Multiple Sclerosis specialist, and said all the tests came back negative....I don't have MS, just migraiges, fibro and some sleep apnea....go home and start stretching! Never telling me to repeat the MRA!!! (I should stretch his neck! lol)

Fast forward 2 yrs......after having a surgery for something totally unrelated.....which prompted two mini strokes......a new MRA was done and was take seriously.....hence my MM diagnosis.

I had my both surgeries completed Aug 2006 at Stanford with Dr Steinburg. I was 100% occluded on both sides and having reverse "negative" blood flow, if you can be worse than 100%...that's it!

I am now doing fantastic......well sort of! LOL ....I still have my days and some issues, but they are all a shadow of what they were pre-surgery.

The most significant improvement to note is my energy level and fatigue level is so much better now with good blood flow! It used to take me hours in the morning to feel I've woken up for the day. Now, it takes ten minutes like everyone else!

My dizzyness level has decreased so much as well as all the other sx's I had. Most are still on board, but just a shadow of what they once were.

As for the costs, I know them all to well......my insurance company and I went through some sticky appeals! (all finished in my favor...thank God)....but the bill for the two surgeries was over $300,000 (I believe my final costs were under $1000 plus my personal airfare & hotel expenses for 3 weeks in California. So, all in all....it cost me around $5000.

Recovery is better than you might expect for a brain surgery.This surgery is highly technical and dangerous, although, it is less invasive than going after a brain tumor. So recovering will be faster and less painful for the patient. You may have the first 24-48 hrs with a bad earache (I did) but after that....it wasn't too bad.

A couple black eyes....a cool battle scar...and a good story to tell your friends.

You will be fine.....you made it this far....!!!!

Keep us posted.....we'll be happy to hear the good news and all of this is behind you and you are on your road to a new lease on life!

smiles....Diane

Hmmm....seems I'm kinda "special" LOL

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lotsofkids

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: new here...let me introduce myself
Reply #6 - Aug 14^th, 2008 at 1:54pm

Oh... 1 more thing!....

talk to the hospital that you're scheduled for surgery with.....they can work arrangements out with your insurance BEFORE your surgery and hopefully accept in-full what they will pay. They may also have special rates for patients at the local hotels/motels for out-of-state patients. Or even a special on campus housing situation that you might be eligible for! It doesn't hurt to start inquiring.

You need to get the name of someone in a Social Service position at the hospital that will be able to walk you through all of this. (ask your doc's secretary to find out who can help you) Once, hooked into the system...."they" will find all of these benefits and perks for you......maybe even discounted airfare!

Hopefully, they can help offset your costs and reduce some of the stress!

I also remembered an old post here on the board...it was called Medical Air Travel Resources
from Jul 22nd, 2004, here is the link for that posting:

http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=resources;action=display;num=1124824691

Best regards....Diane

« Last Edit: Aug 14^th, 2008 at 2:17pm by lotsofkids »

Hmmm....seems I'm kinda "special" LOL

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nopi98

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With God....all things
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Posts: 33
Pickens, USA, usa, 431, 202, SC, South_Carolina
Gender: male

Re: new here...let me introduce myself
Reply #7 - Aug 25^th, 2008 at 12:24pm

Thank you to everyone for your input, thoughts, and prayers. (DJ...if your reading this....you're the man for putting this website together. I can't say I'd know where I would be without it.)

I have my angio / arterio gram scheduled for next month. We proceed from there.

As for the costs....it looks like my family and I in for a doozy. But I'm doing my best not to worry about that part. God has taken this far and I'm sure He didnt lead me this far to leave me hanging. It will all work out:). I've learned through all this that faith in God is important. I'm just sorry it took something like this to make me truly believe in that statement.

Quick question....is this disease genetic, brought on, or both? I've gotten mixed answers on that one. The reason I ask...I have a little boy..(Noah) who is about to turn 1. And I just want to know if there is a chance he may have this. (I hope not).

I see this is a true "family" here. I hate that I have this, but I'm glad that I have all of you to lean on. Thank you.

God Bless you all,

Fred

He died for us...the least we can do is live for Him.

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Mar

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Re: new here...let me introduce myself
Reply #8 - Aug 25^th, 2008 at 1:28pm

Hi Fred,

As far as your question, is MM genetic, brought on, or both? All I can say is what we know so far, and that is… the cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities. There appears to be a genetic link, but I haven’t seen any information which assigns a specific risk level to passing this along to your children. We need more research to know for sure. The conventional wisdom seems to be to watch them for symptoms. Again, that’s why learning all you can about MM is so important. You would know the signs/symptoms, and get the immediate attention that this disease deserves.

Keep the faith my friend, the good Lord will provide. Good luck with your tests and keep us posted.

Mar

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lotsofkids

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: new here...let me introduce myself
Reply #9 - Aug 26^th, 2008 at 1:43am

as for the genetic link....they have long felt there can be a genetic (family link) with some of the asian population and MM.

Amongst the general population....MM remains a mystery for most adults. In children, it can present along with other disorders or diseases. But not always...sometimes it also remains a mystery for them as well.

Just recently, however, (in the last year) the University of Texas (in conjuncton w/stanford has isolated a mutated gene thought to be associated with MM. It is actually a mutated gene linked to AAA's (abdominal aortic aneurysm's) this is because MM is a vascular disorder....so it seems to have a link to heart vascular disorders (in some people) as well. It doesn't mean that everyone with MM will also have Heart problems....only that if one has a perpensity to have a vascular problem....they might also be at a higher risk to develop MM. (does that make sense?)

This site has info on that study....if you go back in the older posts. You should find the contact for that and if interested, they can send a saliva kit to be tested your way. Of 97 patients from Stanford with MM.....I was one of three that tested positive for the gene. I have since tested my 5 children (2 tested positive)

I have very little fear they will ever develop MM in the future, but they ARE at a higher risk of heart disease and I will take that as the more important risk factor here. I will of course keep it all in the back of my mind, if either of them ever start with headaches or strange sx's. They will have the fastest MRA done for them LOL

Anyhow....glad you are on a track and being worked up.....keep us posted....it'll all be OK....do know that!
Just...take it one day at a time....and come in here for research, support....or just a laugh.

Best regards...Diane : )

Oh...and for the record....I have no asian roots in my family history.....I am caucasion. Smiley

« Last Edit: Aug 26^th, 2008 at 1:47am by lotsofkids »

Hmmm....seems I'm kinda "special" LOL

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lotsofkids

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: new here...let me introduce myself
Reply #10 - Aug 26^th, 2008 at 11:34am

I just thought of one more thing.....

although they really don't understand why some people get MM.....it does sometimes present with other disorders. We see that the most with the Pediatric side of MM....however, with the adult onset MM....it can have a higher incidence with autoimmune disorders like lupus or sjogen's syndrome. Also as mentioned, people with vascular problems. Why is that? No one knows that answer. And why too are there many MM'ers with NO other problems except MM? These questions will be answered in time.....but how many years down the line? I don't know. There is not enough patient population to have the numbers to produce accurate stats on it.

(and maybe that's a good thing????)

take care.....Diane

Hmmm....seems I'm kinda "special" LOL

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