I am pregnant for the 1st time.  This is my lifetime dream... the pregnancy would be going perfect if it weren't for seizures.  I had another one yesterday... while my husband was at work.  I just moved from Texas to Kansas (Army life).  I just met with my OB/GYN a couple weeks ago, I tried to talk to her about my health issues... but she blew me off and said, "I have had patients with the same issues, you are fine, you don't need any special attention."  If I wasnt' 5 months pregnant... I would change doctors.  I meet with my Nuerologist on Friday... I am taking my MRI images with me and I would not sign a release for my old medical records from my past Nuerologists.  I told the staff that I wanted to start new with this Nuero. because I want him to look at my stroke, I had it 12 years ago... when I was 14, and my blocked main arteries in my brain from his own point of view.  I have tried to get a Nuero. to look at my blockage, but they won't because they read old doctors notes and go from there .  

This is so hard on me and my husband, to get the special medical attention I need... I am going to doctors and delivering room an hour away.  Because I can't drive my husband has to convince the Army to allow him off to take me.  I just wish for once, I WAS NORMAL!!!

Well, I am going to get off here... I am just glad that for once in my life I have someplace to post my fears and there are actually people who understand... Thanks.  

Brandi



July 17th, 2007

I want to THANK YOU all for your support.  I am working so hard on this doctor situation.  I went to my Nuerologist's appointment, and he refused to see me.  I told his head nurse that I am not bringing any medical records from my last Nuerologist (but I will, and did, bring my resent MRI images) because I wanted to start fresh with him.  They knew this weeks ago.  He waited until I showed up at his office to tell me because I am not cooperating with him or his staff he won't see me.  I am so mad, because I can't drive... my husband had to take another day off work to take me and we had to waste gas to travel a little over an hour to his office to be turned away.  We can't afford this.  Since I can't work right now, I think I am going to have to get on WIC.  I just can't figure out why the doctor didn't just tell me on the phone 3 weeks ago he wouldn't see me if I didn't bring medical records.   I could have saved money and time on finding a NEW Nuerologist.  I need to do that ASAP since I have had 3 siezures this past couple weeks.  I asked my High-Risk Pregnancy Doctor what happens to the baby everytime I have a seizure... the baby stops getting oxygen... I am scared.  I don't know what to do, I need to get a Nuerologist to take my medical levels and most likely up my meds..  To get a Nuerologist it takes about a month.  I still have that stupid OB/GYN that blew me off, because I don't have time to get a new one.  And I don't think me insurance will let me change OB/GYN right now, since I have changed Nuerologists 2 times and Primary Doctor once in the last 2 1/2 months. 

I have an appointment with my Primary Doctor tomarrow... I am going to beg her to send me to the Nuerological Department at Kansas State University.  I have not been diagnosed with MM because I can't get a doctor to listen to me.  Universities love to research people and rare disorders.  I just learned about MoyaMoya a couple months ago by watching Daphne's story on Discovery Channel.  My husband and I watched it and got excited because I was relieved that there were more people out there that have lived their lives like I have.  And there is a name for the health problems I have.  The doctors I had when I had my stroke and since then said this has never been seen by them and there was never a name.  The reason I had a stroke at age 14 is because ALL of the main arteries going to my brain got so much blockage that they completely shut down.  This had to have happened sometime in my childhood,  they think, because a new set of vessels grew around the arteries to keep blood going around the blockage.  The doctors never did anything, so I still have all the blocked arteries in my head and the small vessels are pumping the blood to my brain.  The doctors say I am fine, but how would they know if they have not looked at me in 12 years.  I don't trust that, and now I am not only trying to supply enough blood for myself... but for my daughter that is growing in me.  I don't understand why doctors hate when people know they need to look from a different angle.  No matter how much a doctor knows, there is still more to learn.

Sorry for going on and on, I am just scared.  I appreciate everyone's support... I am listening to everyone's advice.  I am not giving up on finding a doctor who will be open enough to listen to me, eventhough I am not a book.

I will keep you all updated, AGAIN THANK YOU ALL.  I feel like I have found a new family...
Love Ya'll, Brandi & Laynee' (the baby)

Brandi,

I am sorry for what you're going through.  I completely empathize with your desire to want your new neurologist to look at things for himself.  Neurologists can be a tight knit group and they often don't like to question one another (probably true for any specialty).  I remember before Daphne was diagnosed, before we would take her to a new doctor, I'd have the hospital send all Daphne's records directly to me.  Then, I could pick and choose which ones I wanted the new doctor to see (and I could also make a copy for myself, in case I wanted to keep searching for a better doctor!).   I know that it's not what the doctors always want you to do, but - hey - it's your life, ultimately you're the one who has to deal with the consequences if a diagnosis is overlooked.

I hope your new neurologist turns out to be a good doctor.... maybe he/she even would know an OBGYN doctor who is particularly experienced at high-risk/complicated pregnancies.  I sure would ask!

If you don't have luck with your neuro meeting, please post back here right away... there may be people who can direct you to someone more qualified with your issues.  It certainly seems like you've been overlooked. 

Jenny (mom to Daphne www.daphnestory.com)

Brandi,
     I know that you are going through a difficult time, and I am sorry that you have to deal with the health issues along with the pregnancy, However; FIRE that silly OB/GYN doctor that will not listen to you.   One of the worst things that any person can have is a doctor that will not listen.  I have fired several of Tammie's doctors over the years.  The first time they give me the impression that they are not listening or blowing me off I confront them about it and typically they take a smarter than thou approach.  I simple get up tell them "Your fired, and I'll be in touch with my insurance company about your behavior".  The sensitivity of your condition warrants doctors who will listen to you and coordinate your care with a neurologist of repute.  The pregnancy itself is the easier part of your health equation at this point and time, and as such switching OB/GYN's to obtain one that will listen and talk with a neurologist will benefit you more than staying with your current closed minded DR.   Sorry for rambling but I made the mistake of trusting a doctor once, and now I question everything they say and recommend.

Joe

Brandi,
    I hope things are going good for you.  I just found out that I am six weeks preagnant and I live in the Kansas city area also I was wondering if you had found a good ob because I am looking for one.  I am very scared about what my happen during delivery my neurologist said I should be fine but if something were to happen I dont know what I would do because I already have two children to worry about and I have to put them first.  Im confused about what to do if you have any suggestions or know of a good ob could you please let me know.   Good luck and I hope everthing is going good for you.
                   missyw

My daughter had 2 children and did really well.One is 7 and that was like 7 months after her surgeries and the other little girl is 3 1/2.Never been sick a day for 8 years but last week had a seizure and now doing things that she wouldn't normaly do.She has been a funeral director for 7 years and worked at least 50 hours a week.She was one of the top 9 directors from Houston/Austin.