Hi my name is Sherry, I just started using this site at the beginning of April.  I initially posted a message to find out about the nerusurgeon that was in Chicago.  Since then I have had my angio.  I had it done in Chicago on the 6th of April.  It is now the 19th and believe it or not I still do not know the results!!  I spoke with my neurologist last Friday and he said that the team of doctors that go over the cases had not had their meeting on that Tuesday as planned.  Then my doctor tells me that he is going to South Korea to consult with the goverment, for what I don't know.  But I will have to wait until he gets back on the 23rd to find out the results.  He finally gives up some control and says he will have a neuro nurse call me with the results.  When I talked to her that following Tue I was expecting to have some kind of info on my angio results.  What I find out is that The surgeons that are suppose to be looking into my case are at a conference in Florida somewhere.

Of course at this point I am livid to say the least!!  
I asked her to please get me a copy of my nova study, my functional mri and my angio to me so that I can send them off for a second, third or even fouth opinion.  My plan is to send them to the doctor in California that so many of you speak so highly of.  Also to a doctor Fessler in Detroit and Dr. Kopitnik in Dallas(I was under his care prior to moving back to Michigan).

I have not had surgery as of yet, I have been on blood thinners since my diagnosis in Dec. of 2000.  I went several years with no symptoms, after that I have had minor tias.  Over the last few months I have began having a gut feeling that it is time to do something!!

I want to know if anyone has had problems with short term memory loss?  I find it hard to stay on task at work and to be able to start something, have to run to something else then be able to remember to finish what I was doing to begin with.  Also within the last couple of months I can hear a whooosh in my ears, my doc says it is because it is close to the auditory.  Sometimes it is soooo loud it drives me crazy!!  I find it hard to concentrate on anything.  Sometimes I think I would rather be hearing voices!!!!  

Anyway, I'm sorry I kind of went on and on but I felt like I needed to vent and it's reassuring that I can to this to people who are in the same situation.  If anyone has any suggestions or comments for me please give me a line or two.  As it stands I won't be hearing back about my angio until at least the 24th.  Looking forward to hearing from you guys!!
                                 Thanks all,   Sherry

Sherry,

I also live in Chicago and have MMD.  I saw some neurologists at Loyola and while they were very good doctors (could use some lessons in bedside manner, though), I agree with Mar that many doctors who don't have the experience with MMD don't understand the urgency of diagnosis and treatment, especially since you are having symptoms.  My doctors here were in disagreement about my diagnosis and I needed a second opinion.  I don't know where you had your angio done, but there is no reason they shouldn't be able to get the study on a CD for you TODAY!  When I had mine done, I overnighted them to Dr. Steinberg and they got back to me right away.  Within a few days, I was scheduled for surgery and on my way to Stanford.  Dr. Steinberg and his team are AMAZING.  They are dedicated, kind and compassionate people and are definately the best team around.  They will evaluate your films and give you their expert, honest opinion.

As for the short term memory loss, a lot of us experience the same thing.  It is really frustrating for me.  If you look at some older posts on the board, you'll find some posts where others talk about things they do to help compensate for this deficiency.  (I would find it for you but I've gotta run out the door).

If you want to talk or need any help with anything, send me an e-mail tuknits@gmail.com. 

Best of luck to you.  Hope you get your answers soon.

-Tracey

Sherry, Again Welcome to "OUR" Family I would just like to tell you that my Drs. in Florida let me keep having tia's  for almost a year till I had a tia on Christmas Day 1998 then a right frontal stroke on Dec.27th ( mouth crocked, drooling and sounded like I was drunk----and I Don't Drink Alcohole ) Then they finally done my first surgery on New Years Eve. 1998..........
When I started having Tia's a little over a year later and that Dr. said let's just wait and see-------I imediatley got a new Dr. had an angiogram and surgery a week later....
There was NO COMPARISON in my surgery's......
First one took 13 hours ( The Dr. had never done a MM person before AND IT SHOWED------almost 2 weeks in a coma, the brain of a 7 year old (my kids say more like a 5 yr. old) for about a year....
Second surgery (Dr. had done several MM surgries) took 5 1/2 hours was home in 4 days (would have been 3 but my blood pressure was high so I stayed an extra day)      Was Out shopping the day after I came home.  NO PAIN......1st surgery Lots of Pain even had to go to ER for pain shots a couple times.......
I don't want to scare you-----I just want you to know It Does Make a Difference in a Dr. with experience......Good Luck  and don't Wait----as I do feel like having 2 strokes and surgery within a week is why I had So many problems and That is Why when I had the angiogram in 2000 and the Dr. said You know You will have strokes but you can wait and I said NO I want surgery ASAP,,,,So I had surgery the following week.....

GOOD-LUCK         Elaine Calvert

Thank you all for responding to me, over the last few months I have noticed little things about myself that just aren't quite right.  It's nothing that I can really put my finger on, but it's like I told my family, I am coming to the point that no matter what my angio shows I believe I will be going with elective surgery.

I have a husband and an 11 and 12 year old son and daughter that I have to be around for.  Most days I go on with my daily life with no problems, but there are those days when sometimes I feel like a time bomb about ready to go off.

I sooo appreciate everything thing that you guys have told me.  I'm not new to mm but having had so little done about it over the years I sometimes feel like I know very little about it.

I'm going to make sure to check out the links that mar told me about, I'm really glad to hear it's not all in my head!!!(

Thanks again guys!!!! ;

Hi Sherry,  I was diagnosed with mm in 2002. Had my angio at the University of Iowa Hospitals. They gave me the results the same day. I had to have two aneurysms coiled and then had bypass surgery a year later. I just don't understand why some doctors keep you waiting. I also have short memory loss. Like you I have good days and bad. Just live one day at a time and am thankfull for that.
   Take care, Skay

Sherry,
I don't know anyone who has been to University of Illinois Medical Center for MM.  My only experience with neuros was at Loyola, but I do know someone who had bypass surgery at University of Chicago Medical Center who was very happy with their surgeon.
Obviously, I am not a doctor nor an expert in MM, it just seems to me that any doctor who would recommend management by using meds would not be the right doctor (speaking to your past experience), as drug therapy has shown to be ineffective in the treatment of MM.
Absolutely follow your instincts about your body and your health.  If you feel like something isn't right - it isn't.  You know yourself better than anyone else.  Especially when it comes to MM, there are many doctors who just don't have the experience to recognize it or treat it properly.  I went through lots of doctors saying anything from MS to Parkinsons to it's all in your head (no pun intended).  I also had a doctor who wanted to put in a stent (also not effective for treating MM).  Others here have been through lots of similar experiences - wrong diagnosis, wrong treatment, no treatment, etc.  You have to be your own advocate and push for what you know is right for you.  I hope that you will have your answers soon and that you get the treatment you need.
-Tracey

sherry,
u do sound like ur drs are moving at turtle speed and yes most of us had to move the drs along rather than, them moving us along.  the only dr that was quick and referred me over was my optomologist who first discovered i had mm.  but everyone else took their time.  but i was diligent and started calling myself in my home town (hawaii) and to dr. steinberg's office and tried to get a hold of dr. fukushima also.  so first of all your angio you should have had the results no later than 3-4 days later, unless the radiologist dr. didn't know what he was looking for.  i asked for all my results on each test from my internist as i took them and also went down to pick up each film and cd from the radiologist dept.  so that way i know what they are looking at and have them on file if i need to send them away. 
yes memory wasn't a problem until i had my surgery and now i forget things like crazy and 1 thing that's kinda junk is that sometimes i can't remember how to get to a location but i know where it is but just can't figure it out.  anyway my neurosurgeon said nah that's not part of the draw backs but reading everyone's symptoms i do believe it's a symptom that occurs.  my dr is great take it but you can't put all your trust in them they are only humans.  how was your results???? u can email me

aloha
brandie

Well, I finally heard back from doctors.  They finally confirmed what I already knew.  I will need left side revascularization.  Will be meeting with neurosurgeon shortly to discuss plan.  Then I will have to decide who to use. 

The surgeon now is Dr.Sepideh Amin-Hanjani.

Please if anyone has heard anything about her or has had dealings with her let me know.

Thanks, Sherry