Hey Everybody,

It's been awhile since I was last on here. I have already had the two surgeries; one with Dr. Stienberg and the other with Dr. Stephen Lewis over at Shands. Those were both five years ago. For about two years now I have been experiencing similar symptoms to those I had presurgery. They aren't all the same, but they are all neurological. I have been going from doctor to doctor and finally found a really good one at Mayo Clinic in Jacksonville who tried tests that were new to me.

Would you guess what he diagnosed me with? Yep, moyamoya! Well du'h, right? What he meant, however, was that I have it AGAIN, or rather in a different part of my brain. Have any of you ever heard of this happening?

I mean, I know the possibility is always there and not just for it to happen in the brain, but has this happened to anyone else? I'm just a little bit in shock and it leaves me wondering if it's ever really going to end. AM I just going to keep getting new areas of moyamoya? Help!!!

I am no expert but I think it could be possible. I don't think MM would just stay at the "circal of wills" (sp?) area. Isnt MM just a narrowing of vessiles so it could be anywere in the brain. Thank God you got a nurlolgest who knows about MM. My nurologest has me write a journal of symptoms that I have experenced (if any), and at our annual check up we go over things. Then if he feels I need a test or if I am freking out about something and I request a test to make sure I am okay he does. I showed a bit in another area but not sugnificant enough to worry about, but if MM is progressive then the monerting is there just incase. What could have happened in your case is it may have been there but to small so they fixed the larger problem and now have the ability to detect this one. i will keep you in my prayers.
Becky

Hi Jesenia! [smiley=vrolijk_26.gif]

Welcome back!! Long time no hear. I’m so sorry to hear you’re still having recurring problems. You've continued to be in my thoughts and prayers, cuz I remember way back you saying you were still having problems like numbness, double vision, etc. So it seems like your MM symptoms never really stopped over the years, even after both surgeries. [smiley=sad.gif]

I’ve heard of only a few members over all these years say they had an additional occlusion in the back of the brain after their surgery, and one of them said the blood flow from her prior surgeries were compensating somewhat, but not enough, and the other said they had to have an additional surgery, and they are doing great now. I’ve only ever heard of those two cases, so it may be uncommon, I don’t know, but I’m sorry in your case you’re still having symptoms. I don’t think it’s that a MM patient will keep getting occluded arteries after both surgeries, but rather it being your own personal factors involved in your case. In other words, you’ve always had symptoms and problems, even after both surgeries, so perhaps it’s your own personal reason/case. I don’t know your specifics, but perhaps as your MM progressed after your first surgery, as it usually does, that would explain your recurring problems back then, then it’s possible that the second surgery on the other side of the brain did not work as well as you expected and did not compensate the brain enough, who knows, I cartainly don't know, but there could be so many different reasons in your case, but it isn’t the norm for MM to continue into other areas of the brain, if the surgeries were successful. Not to say there isn't other issues involved though. See my point.? As you know, MM is a narrowing of the internal carotid arteries in the brain, but something like another arterial disease or problem is possible. Every MM case is differnt and we’re learning more every day. I just hope you get some answers.

As an added note, it isn’t that your MM is back again. It never really left. The surgeries are not a cure for MM, but rather the only option we have to increase the blood flow to the brain to avoid that inevitable stroke that comes with this disease. If a patient’s surgeries are successful, the brain gets the blood needed, so it doesn’t grow the collaterals (MM vessels) anymore. (Which helped compensate when you didn’t have good blood flow) That’s the success. But in some cases, like with an indirect surgery in some adults, they may not always get the adequate amount of blood needed, so they continue to have symptoms, even after surgery. Some others may continue with problems because of seizures, so it’s possible to have recurring symptoms and is why follow-up checkups are so important with MM patients.

I certainly hope and pray you get some answers and that’s it’s treatable. I don’t need to tell you the importance of an experienced MM neurosurgeon, I’m sure you’re already aware of that. Experience would be the key in helping your case IMO.

Please keep us posted.

Mar

Thanks Mar and Becky,

I realize that it never "went away." The way the doc put it is that I have another area of my brain that has a narrowing of the blood vessels.

I go back to the Mayo Clinic on Wednesday to meet with the neuro surgeon. If I like him or maybe even if I don't I'd like to go back to Dr. Lewis over at Shands or if I'm able even go back to see Dr. Steinberg in Cali. Right now I'm leaving all my options open including the one that says maybe I don't really need more surgery. But that one's probably just wishful thinking. :-/

I'll be back on here to post an update and probably ply people with more questions!!

Thanks! :)

Hi there!

I'm really sorry to hear that you have another "narrowing of the blood vessels".  That must be really hard to handle after going through two operations.  

I have unilateral MM and had an operation in 2005 but in a couple of years ago Steinberg said that it has hit the other side of my brain.  I'm checked every year and every year is a possible operation.  I know how horrible it is to think of facing another operation.

Please let us know what the doctors say.

The best of luck!  

Monica

Well I just  got back from a short stay at the Mayo Clinic in Jacksonville. Initially the doctors thought that maybe I had a combination of ischemia and seizure activity, but predictably it's just ischemic issues that I have.

What they found was that the right brain surgery that I had in California did not support the blood flow that I need. At the time fo my surgery, the vessels involved in the bypass were too small for a person of my age, but Dr. Steinberg was still able to perform the surgery successfully. Unfortunately I need more blood flow to that part of the brain so I require a third surgery. If I could, I'd go back to Stanford to have it done, but it's looking like I'm going to have it in Jax. Thanks for your concern!!!

Jesenia

I am sorry to hear you have to have another surgery. Do you have the EMS surgery? EMS - indirect bypass -> muscle (and it's bloody supply) is laid down on the surface of the brain and left to grow.

My vessel they were going to do the bypass was to small so they got one from my forhead and they did the EMS surgery at the same time.
I was lucky they discovered my templ artery was to week so I didn't have to go back for another. My STA-MCA does not have enough blood flow to do its job but since I have the EMS it supplys most of the blood flow to the MM spots. The sucky thing is I now have a permint soft spot, but I think that is better then not having good blood flow!

Please keep us informed of what you are having done and when.
Becky

Hi Jesenia,

I encountered the exact same experience as you.  I had a second surgery on my left side using the ocipital artery with an added boost of an EDAS surgery performed at the same time.  So far so good.

I will be very interested in hearing of your future surgical plans so keep us updated.    

Lisa

My surgery has finally been scheduled for the 25th of this month. I don't know what to call this procedure. He's basically scraping off the inside of the skull which apparently carries a bunch of vessels and then removing the membrane that covers the brain and putting the scraped off portion directly on the brain. He'll do that in a large area on the top right and then in
I feel really comfortable with the surgeon, how he explains things, and why he feels that this is the best procedure at this time. I just ask that you all be praying for him on the morning of the 25th!! Pray for steady hands and that the procedure goes as planned. God has been guiding this process since the betwo smaller areas towards the back on the right side as well.
ginning and I trust that all will go according to His plan. Thanks to all who have been praying and asking about me.

Jesenia

Something else to see "Moyamoya...again"....if that is what my Cara is currently experiencing....she never had these little so called "TIA's" (not what they are called but similiar) before her two surgeries...she had two types of surgeries on both sides back in July 2004 and Aug 2004....just turned 11 yesterday but experiencing up to 10 episodes each day.  Currently have plans to fly her back to Phx Childrens Hospital to have more tests.....two years ago they put her in the hospital to check if those little TIA's were seizures...and confirmed she isn't having them.....they do not really know why she has these tia's...she has gone through months without them....but the past 3 weeks they have been happening every day.   We finally got a call from the neurologist in Kansas City....and she may be going there  instead.   From all I have read...everyone has had these "before" surgery.....Cara never had one until after her surgeries....since then has had maybe over thousand (total)...very quick and small but now it kind of lingers longer.

Jesenia....you are in my prayers.

warm hugs,  carol  

Thanks Carol [smiley=wave.gif],

I have no clue hy I'm having them again either. I had surgery planned for today, but that got cancelled as of last Friday night. Teresa from Dr. Steinberg's office called and said that he didn't want me to have the surgery that was planned in Mayo Clinic.

I now have plans to fly back to California for more tests and a possible surgery. Don't know who will get to the doctor first, but as soon as I find out why I'm still having these, I'll let you know.

Wish you the best,
Jesenia

Hi Jesenia,
You're in the most capable hands and in my prayers.
Best of luck.
Kim