Over the past two years, I have had three episodes of blurred vission, right arm and leg paralyzation, diziness, and being completely lethargic. Two years ago, my doctor treated it as stress and placed me on several seritonen uptake inhibitors, nine months later I was off the medication. After visiting the same doctor this January, I finally decided that it was time for a change. Lucky for me, I found Dr. Lyle Dennis in Bergen County, NJ. Later that week, I was off for a MRI/MRI, EEG, and a CTscan with contrast...two weeks later, I was back wth Dr. Dennis...

Dr. Dennis informed me that I have localized moyamoya in the left side of my brain. Based on his diagnosis, I was off to visit with Dr. S. Connolly at Columbia Presbiterian in NYC. (Based on the comments on here...he is the Dr. to see). Unfortunately, he does not fully agree with Dr. Dennis, as the "vessels showing shrinkage occur past the corotid artery". Now I am in a jam...both Dr's want me to have a Trans Cranial Doplar study, a Brain Spect Scan and a Cerebral Angiogram. The only problem is the doctors at Columbia are not covered by my insurance.

A few questions:
1) For those of you in the NYC/CT/NJ area which doctors did you use for a second opinion/diagnosis?

2) For all: did you go through the same type of diagnostic testing? or did you have other test?

3) Have any of you had conflicting diagnosis and how did you proceed?

4) How bad is the surgery and the days following? Panful? Did the surgery allow you to return to "a normal life". What limitations has it placed on you?

I also need to say thank you for the website, as I have been sitting here for over 2 hours reading the different topics....

Thank you in advance for your replys....for those in the NYC metro area....I'd love to chat in person, over the phone, or via yahoo messenger.

Happy Birthday to me....
Greg

Greg,

I'm not in the area, but wanted to give my support. The surgery is different for everyone, but it's the only way that I know of preventing a major stroke with MM. I know my son had the Cerebral Angiogram for a definate diagnosis. By my understanding it's the only test that shows the "Puff of Smoke" caused by MM.

I will keep you in my prayers. Sorry this had to happen to you on your birthday, my son had his stroke on Christmas break in 2002.

Rena

Hi Greg -

I'm not in your area - but pretty close.  I'm from the Philly area.  Sounds like you have an HMO??  You can always fight your insurance company.  When I was first diagnosed I had an HMO.  My HMO wanted me to see a doc that had little to no MM experience and I fought the HMO.  (Luckily, we went through annual re-enrollment for benefits at my work so I was able to switch).  

Anyway, it is important that you see a MM SPECIALIST...your wanting to see Dr. Connolly was the right move.

2)  When I went for my second opinion I took all of my films with me.  My second opinion doc didn't request any further testing as I already had multiple MRI/MRAs and a cerebral angiogram (THE definitive diagnostic test for MM).

3)  I did not have a conflicting diagnosis, but the people on this website definitly convinced me that I needed to have surgery.

4)The surgery is different for each person....and it differs for each type of surgery.  I had the EDAS surgery.  Pain itself wasn't bad at all.  After my first surgery they had me on morpine - which made me sick to my stomach.  The second surgery (a week later) they just gave me tylenol.  I unfortuntely had a stroke after my second....on the left side of my brain...but after some speech and occupational therapy I can say that I'm about 98% back to "normal".  I was out of work for 5 weeks (2 of which were in the hospital).

In terms of limitations, again, it depends on the person and the doctor.  I was only told to make sure I stay hydrated.  At my 6-week follow up I was told to be careful of tight things around my head (glasses, headbands, etc.)  Other than that, I do what I feel ok doing.

I know you have more questions.  Please feel free to ask - you have joined a great website and we are here to support you!

-Shari

Unfortunately, it is a PPO that has not at all been helpful. So far they have forced me to see everyone out of network, as they claim that they do not have any MM specialist in network. I am now working with my HR group at work to better understand the insurance policy.  :(

Greg:

May I ask what insurance company you deal with at work?  Is it Blue Cross Blue Shield?  

If I were you, I would check to see if Dr. Steinberg's office takes your insurance and get his opinion possibly.  He's located in Palo Alto, CA.  I know it's a long ways to go, but hopefully your insurance would cover it.  If Dr. Connelly does not take your insurance, then that could be a problem.  Dr. Steinberg's office would do all the tests that you need to have if they take your insurance.  

Greg-NJ1 wrote on May 11^th, 2005 at 8:48pm:

A few questions: 1) For those of you in the NYC/CT/NJ area which doctors did you use for a second opinion/diagnosis? 2) For all: did you go through the same type of diagnostic testing? or did you have other test? 3) Have any of you had conflicting diagnosis and how did you proceed? 4) How bad is the surgery and the days following? Panful? Did the surgery allow you to return to "a normal life". What limitations has it placed on you?

Hi Greg, [smiley=wave.gif]

Welcome to our MM family, and Happy Birthday! To answer some of your questions, here’s my opinion.

1) To start with, the most important factor in treating moyamoya disease, I believe, is having a doctor with experience, a mm specialist, but unfortunately they are far and few in between. You can seek a second opinion/diagnosis from a mm specialist right here, all info needed to do so is here on the website, under "Links" You simply send them a copy of your films. The best, I believe, is Dr Steinberg from Stanford. His credentials speak for themselves.

2) For more info on the the diagnostic testing procedures, it’s right here on the website: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571

3) It’s very common to find conflicting diagnosis/prognosis. That’s why we emphasize a mm specialist. One who knows not only how to do the surgeries recommended for the treatment of mm, but one who knows MM, the disease itself, and the correct surgery for your personal situation. One who knows from experience because they deal with it on a daily basis and knows the devastating possibilities of waiting, as many others in the medical community with less experience, do not. The consequenses are devastating. This is a progressive disease over time, with a possibility of a stroke, and I always suggest a mm specialist to prevent what happened to my niece.

4) It’s different for each person because of the many different clinical factors of each person, but I’ve heard people say they’ve had dentistry work far worse, as far as pain goes, and again, another reason we emphasize a mm specialist. DJ was sitting up in intensive care, putting together this website, the same day after surgery, for one example.

My best advice to you Greg is to read all you can about mm. The answers are there, the more you learn about the disease. You’ll find it comforting knowing you’re making the right decisions in a medical world that does not know enough about this disease.

Good luck with your insurance Company. With this disease being rare, many have fought and won, but again, I urge you to do your homework. That will help you in all areas in the future with this disease.

My thoughts and prayers are with you.

Mar

::)
    Hi Greg this is Tom G an old Bergen Co. guy I now live in Howell NJ Monmouth co. but I lived in Wyckoff and Ramsey (nice country up there.  
    Dr. Connolly is my doctor too and trust me you couldn't be in better hands.  I know that he will work with you with you're insurance issue.
    Pat M from our Moyamoya family here lives in woodcliff lake and she was operated on by Dr. Connolly.  I am a friend of Pats and I know that she would agree with me about him.  There are other doctors and this site lists just about all of them.  If you want to stay on the East Coast Drs Oglvy and Scott at Mass General in Boston are among the best.

If you want to talk, my number is 732-256-4090

Were here for you G Greg take care and glad you found us.

Tom

Hi Greg,

Welcome to the site - I hope you stay - there is tremendous support here.  I live on Long Island and my daughter has mm (she is 14, was diagnosed at age 10).  Her doctors are at LIJ, Schneider Children's Hospital, and they strongly recommended Dr. Scott in Boston.  It could certainly be worth a phone call.  Stay positive -

Susan

Dr. Scott or Dr. Steinberg seem to be the Number one with MM knowldege and experience, try another opinion its worth it, we've all live it.
                                           Nancy ;;D

An added note... I agree Dr Scott is a mm expert. I didn't mention him because it's been said that he primarily see's children and adults up to the age of 35, but never the less, an excellent doctor.

Mar

Well gang, I am still fightng with my insurance co. You got to love having a PPO...

Anyway, Tuesday afternoon I finally had my TCD. My neurologist won't comment on the results until I have my SECT and Cerebral Angiogram. The insurance is giving me a hard time about the CA. I am waiting to hear the date for my SPECT, as the radiologist who is running the test will not allow the test to be run until he reads my charts/x-rays, etc. He has promised a call on Monday...as I am hoping to have at least the SECt finished before I take a much need vacation over Memorial day.

Yes, a vacation. My girlfriend has been so incredibly supportive through all of this...going to doctors apointments, researching.....and most important...Keeping me sane and giving the most encouraging support. She has never been to Niagra Falls, so as a thank you (if you can ever thank anyone for this type of love and support)...we are off to Niagra Falls for 4 days over Memorial Day....

I actually took a sick day on Thursday, as I had the worlds worst headache. Mostly alergies I believe, as I didn't have any other MM symtoms that I have been exeriencing. Besides, I needed the break.
I finally managed to meet with my HR department at work in order to get a better understanding on the insurance situation.

Thanks again to TomG. I'll be giving you a call over the next few days.

Thank you all for your encouragement and support.

Have a great weekend,
Greg [smiley=bow.gif]

Greg,

Glad to see that you are moving quickly on this.  And it's really good that you have gotten one test out of the way and that you met with your HR department.  How did that go?  Did you gain anymore useful information?  

It sounds like you've got a great girlfriend.  That should be a fun trip to Niagara Falls.  

Just a little note.  You can have headaches without having any other symptoms.  I had headaches for a month.  I would have one everday and not experience any other symptoms while I had them.  Also, I would try to take aspirin for them when I did have them, and nothing would help them to go away.  They would usually last all day.  You might try taking some Tylenol and see if it helps your headaches.  I would get some others opinions on the boards to see if they experienced headaches and if they would go away by taking any aspirin.  As everyone here has said, everyone is different.  

Michelle

Michelle,

Thanks for the comments...

As for HR....they were speachless...and need to further look into our medical benefits. The only good thing is that they congratulated me for opting for the best coverage that we have. Luck for me I decided to spend the extra $40 per month...otherwise who knows.

One test down....a bunch more to go...and I'll keep you all posted.

Unfortunately, I need to watch what I take for headahces, as I have been taking two asprins a day (required for my cholesterol medication). When things get really bad, usually an Advil works. I'm pretty sure that Thursday was due to allergies as I fell asleep with my bedroom window open on Wednesday night....and the pollen counts are SCREAMING in northern NJ.

And, I feel truly blessed to have Olga in my life. We only started dating in August. When I was preliminariliy diagnosis with MM, I actually told her if she want to leave, I would understand....she just gave me a big hug and kiss.....and she has been by my side ever since. (Sorry to all the macho guys out there.....but I feel truly truly blessed to have her in my life).

Have a great weekend, as I am off to enjoy the beautiful weather today.
Greg

Hi Greg.  PatM is my sister.  She's the one TomG mentioned as having had two surgeries performed by Dr. Connolly at Columbia Prebysterian.  Getting a second opinion is great.  I can't remember the name of the doctor who, along with Dr. Connolly, figured out that my sister has moyamoya and not the cerebral vasculitis she had initially been diagnosed as having.  The intense steroid treatments for that nearly killed her and have done permanent damage (on top of what moyamoya does to a person).

Diane

Hi Greg------Pat M here.......the name of the doctor who initially diagnosed me with moyamoya was Dr. Ralph Sacco, the head of the stroke department at Columbia.  He is a fabulous neurologist ---his number is 212-305-1710........also, when I had previously spoken with Dr. Connolly about a year ago, I recall him mentioning that there were employees in his department that helped people deal with the insurance companies.  His secretary, Pat, might be able to direct you to the right people.  As you probably know, his # is 212-305=0376.....Let me know if you're at Hackensack for testing......I work in Hackensack and I can drop in and give moral support, ok?  Thinking of you andpraying for you.......Pat :)