Hi everyone,  

Sorry I've been a littel absent this past week. Starting last Saturday (Oct 8), I ended up having a severe headache that lasted for almost 4 days. Needless to say that I was off to the neurologist. Seeing that it has now been six months since my last round of testing...my neuro finally agreed that it is time to retest and see if things getting better (wishful thinking) or worse.

This Wednesday (Oct 19) I am off for my second CT-Angiogram...pending the results (and hopefully get a final diagnosis), I'll be making a follow up appointment with Dr. Connolly.

Oh, and my Neuro said the headache was most likely a migraine.

Wish me luck...
Greg

Greg,

I am so happy to hear that your
Quote:

"neuro finally agreed that it is time to retest and see if things getting better ."

Did he/she not want to do further testing prior to this severe headache? [smiley=huh.gif]
I know that they have to see if patients warrant furthers testing, etc, but as a patient myself, I personally feel that nobody knows their body better than themselves.  Of course, I'm speaking from my own personal experiences and outcomes.  [smiley=twocents.gif]  Please don't let the docs determine if/when you should get treatment if you truly feel something is not right.  Remember...2nd and 3rd  opinions are always just around the corner... ;)  Can you contact Dr. Connally's office about this?

So, your neuro said your 4-day severe headache was most likely a migraine? Oh boy... :-[  Did he give you anything for it?  If you don't mind me asking, what (if any) symptoms did you have?  I remember having migraines and they were #$&*(@&, but I never had any that lasted that long.  Wow, Greg...I'm sorry to hear about your experience! :-[

Greg, just remember, you're in our prayers.  I do hope for good results from your CTA on Oct 19th.  ;)  I know you've had this done before, so you'll do just fine.  :D  Please keep us posted.

Take care,
Shan

Hi Greg, [smiley=wave.gif]

Any severe headache, like a migraine, lasting for 4 days,  [smiley=JAW_DROP.gif] in my opinion, is extremely serious and warrants immediate medical treatment. [smiley=twocents.gif] I, like Shan am curious as to your headache symptoms and what, if anything, was done in the interim.

I'm sooooo very glad to hear you are having a CT angiogram.  [smiley=thumbsup.gif] The angio should shed some light on whatever it is causing your headaches and hopefully you can get some type of grip on your condition.

Please keep us posted about any treatment and your test results. Greg, quite frankly, I am very concerned about you.  [smiley=worried.gif]

Perhaps I'm misunderstanding the circumstances but I get the feeling the docs aren't being aggressive enough with your treatment/diagnosis.

Let me know what's happenning with you.

Hugs, [smiley=hug.gif]

Lore

Hello Lore, Shan and Everyone Else,

Unfortunately, I don't want to waste the energy required to vent about my neuro and my insurance, as I have done that in a couple of other posts.

Needless to say that the headaches that I experienced last weekend kicked me in the butt to get moving again. The headaches were on and off for four days but NO other MM/TIA symtoms were present. Although they were primarily in the left side of my brain (where I may/may not have quasi MM, as might right side is normal), the headaches did move around from front to side to back....and given no other MM/TIA symptoms no one seemed concerned.

However, I must add that it was me who suggested that we get moving on this and run the second CT-A. Luckily CT-A's are covered by my insurance where Cerebral Angio's are covered, but the doctors in my area who perform the tests are not. I am hoping that I can use the new CT-A and help from my neuro and Dr. C to convince the insurance company to cover the Angio as "in-network".

Needless to say that I am anxiously awaiting to have the CT-A done tomorrow morning and getting the results back latter this week (I hope). I have also requested that my neuro collect all of my test films and data, as I will be scheduling another appointment with Dr. C. I am also in contact with another neuro who was recommend by PatM and TomG at Columbia.

Thank you all for the concern. Please know that I now have renewed vigor in getting a final diagnosis (with or without the insurance). Needless to say, I am not looking forward to having any surgery....but I do have the desire to be "normal" again and will do what ever it takes. Also, even though I vent about my neuro, he has been great....just a little wishy/washy at times in deciding next steps.

I'll keep you posted.
Greg

Greg,

How frustrating for you to have this happening with your insurance!  As if there's not enough to think about, so many people have to jump over the many roadblocks put in place by insurance companies.

I'm very glad you have a renewed vigor!  If you do have MM, it's not something to mess around with.  I'll keep you in my prayers, that you get to the bottom of this, and have a way to proceed based on the final diagnosis.  Hang in there, good luck tomorrow, and we'll be anxious for an update!

[smiley=hug.gif]from out west,
Jill    

Hey Greg,

Hang tight!  The ratio of guys to gals in here scare me as it is!  LOL

I'm sorry to here about the migraines.  I know they can be miserable.  I am on Toprol everyday for them and although it took a few months, I am pretty much migraine free now.  (knock on wood).

I hope all goes well.  Please keep us posted.

-= Dewski =-

Hi Greg,

Although I'm an insurance agent, insurance companies "frost my socks". What kind of nonsense is it when the insurance company covers the test but has no doctors in- network to administer the test? I would call your insurance company and demand they pay this as if it were in-network if you have to use an out-of-network doctor.  Here you are ill and having to deal with this BS!
If you need me to call and argue any of this I am more than willing to assist.  These insurance companies make it so difficult for people and no one wants or needs to deal with this ever and especially when they are ill.

Anyway, I'm glad a negative turned into a positive and you pushed the issue to get treatment.

I, like others, are on the edge of my seat waiting to hear your test results. Hopefully we women don't scare you [smiley=laugh.gif] It's just our mother instinct? or that we women just don't take any crap!  [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

We've all had to fight our own battles with this disease and if we can save someone else the grief, we're more than willing to assist. If we can comfort someone because we know what it is like to have a test or procedure or surgery then we want to do that too.

Keep us posted.

Hugs

Lore

Hi all,

I got home late morning for the CT-Angio. As before, the test was no big deal. I'm starting to like tests that take less time than inserting an IV line. Other than the wonderful flushing (ok burning feeling) when they injected the iodine, the test was a breeze. I think I was in the machine for less than 4 minutes.

Now its time for the fun 2 or 3 day waiting game for my neuro to get the results. Hopefully this will either confirm or reject the other test results and not leave us dangling in the wind.

Thanks again for all of the support,
Greg

::)Hi Greg  Tom G here,  can I suggest a very good neurologist?
    You need to see Dr. Randolph Marshall at NY Presbyterian.
 He works closely with Dr Connolly and is a Moya Moya Expert,  One of the few neurologists that really sees a lot of MM patients.  Dr Connolly's office can give you his number.  
    From my experience Dr. Connolly will have you see him any way.

Take care Greg and make the appointment NOW! :o

Tom G. :)

Hi Greg,

First of all, I'm so happy to hear that you were able to have your CTA, and that all went well.  I know the waiting is sometimes harder than the actual procedure (in this case anyway).

In regards to your insurance issue, I completely understand and feel for you!  In my situation, I was told that nobody here in my state could offer me the surgery (emergency double bypass) that I desparately needed, so I had no choice but to travel a neurosurgeon out of state.  And, when I say out of state, I mean across the dog-gone Pacific Ocean!  Anyway, I belong to Hawaii Medical Services Association (HMSA) which is part of the Blue Cross/Blue Shield Network, and they unfortunately could not offer me any assistance in regards to travel related expenses.  I'm very fortunate that Dr. Fukushima, due to his operating experience in Hawaii, is a member of HMSA!  Maybe I was asking for too much when I inquired about travel benefits, but I figured that if there wasn't any necessary life-threatening medical services that could be provided for me in my state, then my insurance would help defray at least some of my travel costs for me to obtain the necessary treatment I needed elsewhere.  Of course, I wouldn't expect them to send me all the way to the east coast, but to the nearest facility that could accomodate me...somewhere on the west coast.  :-/

I'm praying for good results from your CTA!  I go for my MRI/MRA next week Tuesday.....

Take care,
Shan

Hi all  [smiley=hiya.gif],

Well, I finally met with my Neuro to go over my 2nd CT-Angio.  The good news is that abosultely nothing has changed since my 1st CT-A six months ago. However, it is clear that there is something going on with the left MCA. The right side looks completely normal, while the right side is showing a restriction in the vesel (and the vesel is narrowed past the "restriction")...there are a few rather large "by-pass" vessels around the restriction.

Needless to say, everyone is confused at to whether I have some form of quasi-MM or vasculitis, or.....

The bad news is that my neuro does not want to do anything further at this time. He would like to wait and re-run the CT-A and MRA in one year to see how things progress....

Well, needless to say, I am off for a second opinion. I did manage to get my films for my MRA/MRI and CT-A. First thing Monday morning, I am going to make an appointment with the Neurology Department at Columbia Presbeterian.

I must admit that I am exstatic to see that things have not gotten worse.

Have a great Halloween.....
Greg

Hi Greg,

I'm grateful to hear that it looks like nothing has progressed since your last tests; however, I am even happier to hear that you are seeking a second opinion!  It doesn' t hurt... I am so glad that you are being proactive and not going to just "wait and see...."  [smiley=thumb.gif]

Have you had any recent headaches lately?  Sorry for asking, but what was it that your dr gave you for them?  I think you meant to say that you had some "restriction" in your left side vessel, but your right side looks okay, right? [smiley=huh.gif] (jus' want to be sure...but I think I know what you meant).

Well, I'm so proud of you seeking a second opinion!  Remember... It wasn't until my THIRD opinion that I was properly diagnosed and advised that at this point I had to have an EMERGENCY surgery!  I had exactly  [smiley=eek.gif] 2 days to travel to North Carolina from Hawaii!

Way to go Greg!  I'm still waiting for my test results...I'll let you know how they turn out.  Thank you for your update!  ;;D

Take care,
Shan

Hi Greg,

Well, don't know exactly what to make of that news. :-/  It sounds like the standard case of "hurry up and wait" that I always hate to hear about.


Quote:

Well, needless to say, I am off for a second opinion.

Very glad to hear that!  You need a definite answer my friend and quick!  If nothing else than for your own sanity!  If you don't receive a satisfactory answer from Columbia send the films elsewhere.  In fact, it wouldn't hurt to send the films to Columbia and Stanford to compare the answers you get.  Might be quite interesting actually.    As for the neuro who told you to wait for a year and see how things progress  [smiley=ohjez.gif], well, I personally would dump him faster than a spoiled container of milk!   [smiley=twocents.gif]

Sorry to hear that the process is taking so long for you Greg.  I hope you get some answers very soon but in the meantime, don't give up!  [smiley=hug.gif]

Lisa

Greg,

I'm sooooooooooo glad you are getting a second opinion!

There's nothing changed but there is something wrong (restricted vessel)  [smiley=confused.gif]

The doctor that said wait a year is obviously not the doc to take care of you. Ya think?  [smiley=yikes.gif]

Good God! My brother Kevin (Cubbie) was told the same thing. Not once but several times. I immediately got on the internet, the phone and finally found MM.COM and that led me to Dr. Steinberg at Stanford. I sent Kevin's films and in a few days had a telephone call and the message was clear. Kevin needed surgery and he needed it now! Had I not been pro-active, Kevin would not be alive today. He had minus 2 bloodflow on the left and only plus 15 on the right plus he had a dissected right upper internal carotid artery at the bifurcation. [smiley=JAW_DROP.gif]
Not to mention he had already had a significant stroke and was brewing for another as his speech was worsening, his ears were purple, his skin was gray and his balance was way off. I realize you are not as bad off as Kevin. The point is you HAVE to be your own advocate. I know how much energy it takes to deal with all this. Been there - Done that. I simply don't want you to end up like Kevin. I'd like to see you avoid a major event like Kevin had.

Lisa makes a good point. I'd send my films to Dr. Steinberg at Stanford and compare the two. [smiley=twocents.gif]

You hang in there. We are here to support you through this journey.

Keep us posted.

Hugs  [smiley=hug.gif]

Lore

Greg -

Glad to hear you're getting a second opinion!  I would definitely do as Lisa suggests - send your films to Dr. Steinberg.  Perhaps then you'll be able to get a definitive diagnosis!  If seeing Dr. S is not an option for you because of insurance and cost prohibitives perhaps Dr. S can recommed a surgeon who participates in your insurance?  Just a thought....(just my opionion...yadda yadda yadda....)

-Shari

Hi all,

I just realized that I never gave you an update on this. I finally have my MRI/MRI and my new CT-Angio films and copies of all of my test reports. After spending nearly an hour with my dr. I am ore convinced than he is on the actual MM diagnosis. The good news is...if it is MM, it is only Unilateral, as the right side of the brain looks healthy and normal. Per the MRA/CT-A, the left side does show a "shrinking" of the corotid and several small (MM) bypass vessels.

Based on the few drs that my neuro consulted, they have not rulled out a severe case of Vasculitus.

At Tom G's recommendations, I have made an appointment to meet with Dr. Marshall at Columbia Pres in NYC. Unfortunately, Dr M is booked until Dec 12th. However, after speeking with his assitant, he feels comfortable in waiting (especially after my dr's recommendation of waiting).

My thoughts on Dr. M is that I will get his opinion on where to go from here and what additional tests that I need before I reschedule my next appointment with Dr. Connolly. I also figured that I will touch base with Dr. Scott for another opinion (luckily I am still in the 35 and under category that he usually will see), as I can drive to Boston in about 4 hours if need be.

The good news is that I am once again feeling normal. About three weeks ago, I woke up one morning feeling like my old self. Other than the past few days with this wonderful cold (please read that with TONS of sarcasm) I haven't felt the need for a nap and have had lots of energy. I know... this is not a reason to procrastinate...and I am moving forward....

Thanks again for all of your well wishes.
Greg

Greg:

I'm thrilled for you that you are moving forward and getting multiple opinions.  My best wishes for your optimal care.  

Trina

Well, after 5 weeks of waiting. Today is the day....Dr. Marshalls office just called to confirm my appointment for this afternoon. I was told to bring all of my films and test reports...I can't wait for this appointment, as it is truly time to move forward...

For those of you who don't know, Dr. Marshall is the neurologist who works with Dr. Connolloy at Columbia Presbiterian.

Wish me luck,
Greg

Good luck with everything Greg.  I will be praying for you.

Cheryl

Greg,

Best wishes to you on your visit today.

So glad to hear you are getting multiple opinions from neuros familiar with MM.

Do keep us posted on the recommendation from your visit today with Dr. Marshall.

Hugs,

Lore  

Hey Greg:

Did you just happen to get an appt. today?  That's funny if you did - I happened to cancel my appt. with Dr. Marshall today!!  If you had one before, then I'm sorry I cancelled, as we could have met up!  Such a small moya moya world!  :)

I hope you liked Dr. Marshall - he's great!  Let us know how things went.  

Trina

Hi all,

Sorry about the day delayed update. Well it is confirmed...Unilateral MoyaMoya on the left side of my brain.

I ended up having another TCD...this time with CO2 challenge. Not my favorite of all tests...but it is over. Needless to say...the CO2 did not cause the blood vessels to diolate on the left side.

So, over the next few days, they will be reviewing all of the test results and making their recommendation for moving forward.

I'll keep you all posted. Thanks again for all of the wishes and support.

I may be checking out for the next week or so....so just in case....Have a Happy Holiday Season.

Greg


PS....Trina....your right, its too bad we didn't have a chance to meet up yesterday...but my appointment was scheduled about 5 weeks ago....you are correct, he is a great doctor. He actually spent an hour with me talking about the disease and potential surgeries, etc. Are you particiating in their long term MM study? Hopefully we will get to meet up in Princeton.

Hi Greg,

It's been a week or two since I've been here, but I'm catching up on how everyone is doing and see that you have been "officially" diagnosed.  I'm just glad that you are being proactive and was able to get an appt.  It's been about 2 months since I saw my neuro, and they told me they are booked until next year!  :'(  well, you are in my prayers!  Please continue to keep us posted, Greg.  I know you're in good hands....and you'll do just fine.  You've got all of us for support as well!

Take care,
Shan