Has anyone had a hard time trying to see a neurosurgeon while you are only having TIA's?  I have morning glory syndrome and now that I know what a TIA is I know I have been having them for quite a while. 

I was sent to the ER in July by an urgent care because I was having stroke like symptoms.  They did a CT and didn't find any acute spots and sent me home, the symptoms had passed by the time I was looked at.  Before that I would have weakness, double vision, numbness and confusion, I just thought it was from being tired (am tired all the time).  On the CT scan they never noted the abnormal eye so who knows if they really did a good reading. 

I've been having hormonal issues, pituitary related and was able to link it to my eye issue (from what I have read fro studies and papers published morning glory syndrome has a 40% chance of having moyamoya and also has pituitary issues related to it) and had to convince my gp to do more testing.  My GP finally ordered an MRI, it showed my pituitary is asymetrical and off to one side.  I sort of expected that but the report also said small vessel disease and nospecific ischemia which concerns me.  It was with contrast but I just don't trust the radiologists there to do a good job if they never noted the obvious eye deformity. 

I've been having headaches, now to the point it is every day, they come and go not in the same spot each time.  It is almost that my GP has washed his hands of me, he admitted he knows nothing about either syndrome and wants to see me in 3 months.  He wrote out a prescription for evista (in addition to all this I have bone issues) and on the FDA website there is a big caution about increased stroke risk with the medicine (I just don't trust anyone anymore).  So I am not taking it and he is upset with me. 

I took it upon myself to try to get an appointment with Dr. Lewis, can anyone give me some idea how long it takes to actually hear back.  It has been a week and I have tried calling but the person I talk to who deals with new patients cannot tell me anything. 

I'm just so frustrated and scared, I have a 10yo and I need to be there for her.  My uncle died from a stroke when he was 48 or 49 which is just a few years older than me.

Hi sv,

Getting in to see a neurosurgeon should NOT be that difficult! From everything you're saying about your current condition, you can't take no for an answer from anyone or even "I'll see you in three months" things I have heard several times myself from that community.

I wonder, is the Dr. Lewis you mentioned Dr. Stephen Lewis the neurosurgeon at Shands? I had my second surgery with him and he responded in less than a week to my e-mail that first time around. When I contacted him I already had a diagnosis of MM which may have made the entire process easier. If you're interested, I know the name of a couple of neurologists at Shands that would be a good first step to getting a diagnosis if indeed you do have MM.

I wish you all the best, sv. Please let me know what I can do to help!

freckles

I would think the first step to take would be to make an appointment to see a neurologist before you try to get in to see a neurosurgeon.  Because the NL will make the diagnosis and then be able to get you into a NS.  And from our experience, the NL that made the diagnosis was able to find the NS that had the experience with Shelbi's condition. Or if your condition is something that doesn't require surgery then you wouldn't need a surgeon.  But I would most certainly call and get in with a NL ASAP, if you are having TIAs.

Hope it all works out.
Tina Peters
Shelbi(daughter)-MoyaMoya, Chiari Malformation, Basilar Invagination, Syrinx

I agree with Shelbi about seeing a neurologist but the sad thing is there are so many who have no idea what moyamoya is and don't even consider it. Look for one that does. Then go from there. I was lucky to find one.

Thanks everyone, I feel sort of out there on my own with this because my GP openly admitted he knew nothing about either syndrome.  Because of this he was of no help, did nothing but give me lab orders and tell me to come back in 3 months the last time I was there.  Oh and he prescribed evista (have osteopenia) which has a warning about stroke risk so I have lost all confidence in him and have to find a new GP.

I wasn't sure who I should see next since I have read so much about people have a hard time getting a diagnosis at first.  I guess that was what prompted me to contact Dr. Lewis in Gainesville.  I won't have to worry though because they apparently don't want to see me since I don't have a formal diagnosis.   I'm just not a peace with waiting to see if something else happens, 40% seems a bit high to take a wait and see approach.

Freckles I do need the name of a neurologist, probably at Shands because I really am concerned that I have someone who is aware of moyamoya.  I just feel like my doctor is guessing that I don't have it simply because it is rare and he has never seen anyone with it before. 

I've done nothing but cry since last Thursday, am exhausted and dealing with the daily headaches and fatigue for the last few months I am just not up for a huge fight to try to get an appointment. 

SV,

I am sorry that you are having such a difficult time.    Finding answers regarding my daughter's MM was a battle at every turn for 2.5 years, so I understand how trying it can be when every encounter with medical professionals is a non-productive struggle. 

But don't give up![smiley=hug.gif]  You will find the strength you need to find the answers you deserve.

I'm not exactly clear on this, but it sounds as though perhaps you do not yet have an MM diagnosis at this point?  Is it possible for you to contact Dr. Steinberg at Stanford?  He is the expert on diagnosing and treating adult MM in the U.S.  You should be able to find his contact info at the very start of the "Surgeons w/bypass experience" section.

Best wishes to you,

Jennifer

Thanks for all the replies.  I did end up getting in to see Dr. Lewis, it was a matter of my GP not conveying the correct info to his office.  I had my CTA this morning and it ruled out moyamoya, my neurologic symptoms are more likely related to my celiac disease/pituitary issues so I'll be seeing a neurologist concerning this. 

It gave me some peace since I do have morning glory syndrome which puts one at a much higher risk for moyamoya.  I do have to agree with those who have posted about Dr. Lewis, he is indeed a wonderful doctor as was everyone I encountered at Shands in Gainesville today.