I was in the hospital all weekend from saturday till late monday afternoon. I went to my nuerologist and there are signs of my MM progressing to my right hemishphere more specifically the a-1 segment artery of my brain wich is the artery that controls your left side. My left side as felt weak and I know now its cause of my MM. Has anyone else got weak because of the arterys that have been affected by the MM?

My daughter wasn't quite 5 yrs old when diagnosed so it's hard to know what she was experiencing but to us she appeared "weak".She was gettting wobbly when standing and walking,and I noticed she couldn't stand on one foot like when she had to get dressed she started to hold onto me to to put her pants on.As time when on she seemed to kind of lose control like when reaching for something she couldn't quite "get on the mark" it would take a couple tries.The day we took her to the ER she didn't want to stand up she COULD, but just wanted to sit or let me hold her.Not surte if this helps but I'm glad your "on top of this" and looking into it with your neuro.Keep us posted.
Mary Grace

My husband's narrowing is in the M1&M2 sections of the left side - he has had angioplasty twice to open the arteries - the artery closed almost completely back up after the first angioplasty - his symptoms have always been tightening in this face and jaw - his right arm and fingers tingle and are not 100% - just a little weaker than supposed to be.  Prior to his angioplasty, he had TIA's that included speach lapses, arm numbness (not completely).  We anticipate that the artery is closing again since he has had the weakness in his arm and hand.  We go back next week for followup.

I am sorry that you've learned your MM has progressed to the other side  :(  I know you've gone through a lot lately with having seizures and MM symptoms.  At least maybe this explains what is going on, and you can get treated for it.  I am sure that your weakness is MM related.  My daughter has severe, bilateral MM, and both of her arms have always been very weak.  It must be affecting her upper body more than her lower body, because her legs are much stronger.

Please keep us posted.  Has your neurologist recommended a second surgery?  Did you get an Angiogram, or MR Angiogram when you were in the hospital?

Jenny

Yes I have recently talked to another surgeon and he has told me that surgery is going to have to happen.. I have done an angio wich my nuerologist has said by the written report a artery has been blocked off that controls the blood flow to my legs... and it has blocked off another artery and all that good stuff... I have also done a spect scan but i wont know the results of those till this friday when i go see my surgeon...

Sending prayers and tight hugs your way...that all goes well this week with all the results and that surgery won't be too much of a wait.  Thinking of you, Carol

thank you for the support !! I do hope I dont have to wait long for surgery too as that can be a real drag !! I will be shure to post as soon as i get home from my surgeons visit on friday !!!

Extremelife,
I know that you must be scared and apprehensive about more surgery, but try to remember that with this disease, you must remain on the offense and be proactive.  I am proud of you and you will be close to my heart.
Good luck, Stephanie

Well I talk to my surgeon recently on friday.. Surgery isnt going to happen atleast for a while because on my right side I am still getting a really good amount of blood flow so surgery right now isnt necessary... ABout my left side unfortunatly the bypass that was done failed and the surgery didnt work... what ever syptoms i have because of the failed surgery I am forced to live with do to the small blood flow to the left....I have to hope my blood pressure stays a little high so more blood will get to the left side so i get just enough blood flow to the left side.... so I got some good news and some bad news but thats what happens you take the good with the bad... thanks for all the support and i will be shure to post any changes with me or any thing that happens

Extremelife1986,
                     Why can't you have surgery redone on your left side? It has been done before. Its probably good that your seeking another surgeon however I'm a litttle confused you said you aren't getting surgery but the new surgeon says surgery has to happen. Its probably me I misunderstood something. Just keep searching until you find what is best for you, we've all heard no before only to be followed by a right away by another surgeon. Hope it all works out, we'll be praying for you.
                              Nancy

Brad,

As someone who's surgery also "failed", I want to tell you that you really should be sending your films to a different  surgeon, one with MM experience.  It is absolute bologna that you "are forced to live with the small blood flow" on your left side.  I can't remember what type of surgery you initially had but I had the STA-MCA, which failed, but a couple of months ago they tried again with the indirect surgery AND another direct surgery using my occipital artery (as they couldn't do another superficial temporal artery of course).  Please, all you have to do is send your films to Dr. Steinberg at Stanford for a second opinion (or someone else!)- it's free!  Do not just accept that you just have to live with a failed attempt because that is not necessarily true- I'm living proof!  I can understand, because of monetary concerns, that you may not be able to go out of state for the surgery but, at the very least, by getting a second opinion, you will be steered in the right direction and , most importantly, given HOPE for a healthier future!

As for your right side- if MM has progressed to it, I don't understand why they aren't suggesting surgery either.  If you have MM on that side, your blood flow must be compromised in some way.  Yes, there are degrees of occlusion but , as you know, MM is a progressive disease so why wait until you have a stroke (or worse)?  

I hate to sound like a broken record but this all just doesn't sound right.  Please send your films for a second opinion.  One thing that many of us here have learned is that you can't put all your faith in what one doctor says.  We, as MM sufferers, must go the extra mile in order to get the proper care for this disease.

If I can be of any help in getting through all the red tape or getting a second opinion with a more MM specialized surgeon, please do not hesitate to contact me.

Lisa

I too am sorry to hear about your current situation, but I agree wholeheartedly with LisaH that you should seek additional opinions.  Just be sure that they are from MM specialists.  In my situation, it wasn't until my THIRD opinion that I was properly diagnosed with MM and even offered the option of surgery, and by then, I had to have "emergency" double bypass (STA-MCAs) within a couple of days!  I hate to think what could've happened if I just sat back and listened to my original neuro who said "there's nothing you can do..."  and that he knows others who just live with it.  In fact, he didn't even diagnose me with even having MM!  >:(  The thought of it scares the living daylight out of me :o so please, do consider seeking additional opinions.  ;)

Regarding your right side, I would also be sure it is being monitored closely.  I was told that I've experienced multiple TIA's on my opposite side (left), and I've recently been having headaches which is also quite frightening.  As you know, I'm still recovering from my surgery in May and the thought of having to have another one on my opposite side is just unimaginable for me, but reading other's experiences here on this site really brings support and comfort to know that I'm not doing this alone....others are/have experienced what I'm going through!  :D  So, please remember, we're all here for you and are keeping you in our thoughts and prayers as you make your decision on what to do next....

Take care,
Shan

Brad,
I cannot offer any adive that these fantastic ladies have not already offered.  Instead, I just want to let you know that you are in my thoughts and close to my heart.  Stay strong, hopeful and proactive! ;)
Take care, Stephanie ;;D

Thanks for all of your concern... To discuss why I cant have surgery on the right so is because has there has been some occlusions my surgeon said that the reason surgery doesnt need to happen is because there is some occlusions yes but there is still good blood flow and if you do a by-pass and there is no demand for blood the artery that was used for the by-pass would clot up and the surgery becomes pointless... so that should make some sense... It may sound like my surgeon doesnt but the surgeon I am seeing now has plenty of experience with moya moya and i have seen 3 diffrent surgeons all with moya moya experience and all three have said there isnt much that can be done for the left... I will be shure though to contact my original surgeon who did the surgery to see if he says what can be done...

I still think you should still send films to Dr. Steinberg he has been able to do a succesful surgery when several Doc have said no, Don't settle.
                                  Nancy

Amen Nancy!  Don't settle Brad!  I was in your exact same shoes one year ago this month.  I was failing badly and fast!  I was told by a couple of neurosurgeons (yes they had SOME MM experience!) , after my failed surgery, to go home and put my affairs in order.  Nothing could be done.  Are you really willing to accept that? [smiley=confused.gif]

I saw Dr. Steinberg after hearing from all the nay-sayers and when he suggested yet another, but different, surgery, I jumped on the chance to save my life.  In all honestly, I cried with relief!  I didn't end up having my second surgery with Dr. Steinberg because I had to stay in-state but he highly recommended my surgeon in Chicago and that was good enough for me.

You (and your family) MUST be proactive when it comes to saving your life.  I know it's tiring and frustrating but what is the alternative?   I ask you, what can it hurt to send your films to Dr. Steinberg (who has treated hundreds of MM patients) for a FREE opinion?  

[smiley=twocents.gif]Lisa

AMEN!
LOL, Stephanie ;;D

Hi All

I am extremelife17 Mom. Maybe I can clear this up about  is surgery on the left side.  In Dec he had an indirect bypass done. The surgeon used the ONLY artey that he could use. The artery was small and he was hoping it would work. In order to ever be able to do another indirect surgery there has to be arteries that can be used. Brad doesnt have any. So he has collateral circulation from the right side to the left.  Even the surgeon who did the surgery Dr Day in Boston wasnt sure it was going to work. But the surgeon here in Florida at the university of miami and another surgeon both said that there isnt ANY arteries to use on the left. The right side however is getting good blood flow and has to be keep an eye on.  I will consider sending his film to Dr Stienburg. I have already spoken to teresa and if he can help he will contact the Dr here in Florida to consult . If anyone has advice please feel free to contact me.  

LynnPat,

Thank you for explaining Brad's left side situation. We can understand what you’re saying, but what we’re trying to say is… there are several DIFFERENT indirect procedures that a MM specialist could use to induce new blood vessel growth, and numerous technical considerations in those many surgical techniques. That’s where Dr. Steinberg, an EXPERT, comes in. That’s all we’re saying. It sounds as though you are speaking of only one technique that was used in Brad’s case. Lisa is saying, with a specialist, they may know of an option to save Brad's risk of a stroke, as it was in her case. She was relentless, and sought many opinions from good neurosurgeons, but to be blunt, they said, sorry, you have no artery to use, so go home and wait to stroke and die, yet there WAS an option.  I've seen cases where Dr. Steinberg used any source that was made available, to attract new blood vessels. It's been done.

We are not doctors, and we don’t know Brad’s specifics, but we DO know that there are several procedures or combinations of procedures that may be tried, and we’re urging you to seek someone who we believe may have an answer, thats' all... rather than to leave it as Brad stated, there isnt much that can be done for the left.

We only have his best interest at heart, as you do, and want him to have every option considered before we give up.

[smiley=twocents.gif]

Mar

Just wanted to remind you that there is a HUGE difference between someone who has experience in MM than a MM specialist.  Someone who has experience may only have done a couple of surgeries; whereas, a MM specialist has done over hundreds of them.  That's why you should really get another opinion from Dr. Steinberg.  

Just my  [smiley=twocents.gif]
Michelle

Thank You MAR!!!!!

You always seem to to get me thinking. I am going to send the film to Dr Stienburg to see what he says. We havent given up the fight. But reading eveyones post makes you want to fight harder. So Thank you for that.  I will keep everyone posted on the out come

Lynne

Good job Lynne thats what we wanted keep on fighting!

Hello,
Keep up with journey, it seems that you get answers,but all Drs. have their opinion. I've learned that. Go beyond and get more opions.  I think there's alot of DR. Steinberg's work invested in MM friends. He's a specialist and well respected. It definately could change Brad's path for the better. It is well worth it. I hope Brad , you and your family the best. Please tell Brad to take it day by day the sun does shine, the rain does fall, the seasons change and we continue on.
He has alot of supporters who know the real deal we all have been there in some way or another.  Good Luck!!!
 Your MM friend Lena

Lynne,

That's the spirit!  ;;D  Press on and continue to be persistant just like how Nancy was in finding a neuro she felt comfortable with for Mandy.  When I read posts like your and Nancy's recent posts, it gives me renewed energy and fighting power to continue to conquer and learn more about this disease and not give up...even through all of the challenges! You may get frustrated by all the roadbumps, but continue to have FAITH and know that we're all here for you, Brad and your family!  ;)

Take care,
Shan

I just wanted to say thankyou so much for everyones hope and prays that have been giving me. The over whelming response of support means alot especially at someone my age of 19 when and because with MM and the surgery prevents me from doing alot of the normal things a normal 19 year old can do... Thankyou so much for the support and Me and my family will continue to fight and when my films are sent to Dr. Steinber I will be shire to tell everyone what he says!!!