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Learn as I learn!

Mayo Clinic results will be posted as I undergo testing.

Aug 11th it all begins

Aug 11th- Met with Dr. Maria Aguilar. She has 2 theories 2 test and feels strong towards one. From all the descriptions of what I have experienced, She initially believes the STROKE and blood related issues are separate from one another!!! That is exactly what I thought as well… Her theory has a lot to do with what i said previously- The headpain, making myself dizzy by head posture, sleepy in that head posture- which no other Dr. saw any significance to. The tests she is ordering will prove/disprove her theories. Cardiology will further explain, if possible, the heart rate fluctuations.

Current Theories of Dr. Aguilar

Theory #1- The Stroke was quite painful which you all are aware of and not common to be so painful. She believes that I had a “Spontaneous Dissection of the Carotid and Vertebral Arteries” This became known recently in 1970. My Carotid artery had an ultrasound and was clear, but my Vertebral Arteries were never tested! This dissection of an artery is like having a tube and half of it folding over inside itself. This is quite rare! Only 1 out of 100,000 have this dissection and it accounts for only 2% of the strokes that occur. Of that 2%, only 10 to 25% happen in young adults. When a dissection happens, Multiple posterior circulation embolic stroke occur “stroke showers”. That is why it was so painful. An MRI/MRA needs to be done on the Vertbral Arteries which is your chest/neck area. This is the flow that goes to our Cerebellum and Thalamus. The tests can come up neg. of any effects because the body can repair itself, but I can still experience the pain for quite some time. Also, patients describe the pain as unlike anything they have ever felt and is rarely mistaken for a Migraine! (much of what I said)

At the Mayo Clinic entrance

Theory #2- There still are many unanswered questions about my heart rate and the fact that Strokes and blood flow issues are dominant in my family heredity. Her next theory believes I could have a “Patent Foramen Ovale”- PFO. Basically, we have a right and left atrium of the heart. If there is any type of hole/tear between these atriums, blood can become irregular,heart beat can be irregular, and number of problems can occur. NOW, I had a TEE test done which should have shown any signs of that heart condition. She states that it is hard to find or can be missed if not looking for it. I remember the hospital saying that they needed to test and see if I had a hole in my heart. I will talk it over with the Cardiologist and may not do the additional TEE test.

Current Schedule:

9am– Meet with Dr. Aguilar

11:20am– Coagulation blood draw

12:30pm– Oximetry Instructions. I wear a device to keep track of my heart rate and oxygen levels when I sleep

2:00pm– Occupational Therapy- I DECLINED

3:30pm– Physical Therapy- I DECLINED

Checking in to Neurology at Mayo Clinic

Aug 12th Schedule as of now

7:30am– Return the Oximetry

8:00am- Another TEE test I decided to decline the TEE test. I had one on 6/27 to specifically check for a hole in my heart. It came back Neg. and stating that all my valves were operating correctly. I would like to have a consultation with a Cardiologist to evaluate more. They reviewed my records but said the results I have are too vague for them to go off of. It makes it all difficult.

12:30pm- Tilt Table test- I will DECLINE. I will NOT decline. This test determines if I am getting lightheaded/dizzy in different positions. From there, they may be able to determine if it is heart related or not.

2:00pm- Cardiovascular 48 hr monitor- Mch-Ep test card.

More things to be scheduled. I need an MRI/MRA and a consultation with a cardiologist which is pending at this point.

Aug 12th- 9:30am  The MRI/MRA has still not be scheduled.

I am trying to get the Lab results done Aug. 7th with Dr. Nakhle faxed here for their review. Seeing an Endocrinologist here has to be determined.

Waiting is still taking place for a Cardiologist consult as well.

Mayo Clinic

Aug 13th– NO RESULTS… The tilt table test was not done either after all! I spoke with the tech. & the RN very extensively about my situation of symptoms & being a cash patient. The RN suggested that I speak with a Cardiologist first cause the test can always be rescheduled which is what I wanted in the first place but could never get an apt with one. He, RN, tracked one down and explained my issues and circumstances and he said he would make time for me. Review all my  records and then meet. After the meeting, he can determine if i need my heart to be tested further and if the need to be done here or back in Nevada.

Aug.13th – Dr. Aguilar really wants me to have the MRI/MRA which I want to do as well. Nothing has been scheduled yet! I spoke with them and my insurance several times. Insurance buys me a little time. Otherwise, I would have to fork up 10K plus right now to have things done. INsurance won’t cover it, but things are happening too fast and the insurance is not caught up on their paper work. That’s all.

They are trying to schedule 1 for me today!!!

AUGUST 14th Schedule as of now.

7:00 am– Dr. Aguilar- She’ll want to review the MRI from the Hospital, which was overnighted as well as the endocrinologist tests, and the new MRI with me… that has to happen first!- CANCELED because of no MRI/A

1:00 pm- Meet with Dr. Jahangir to discuss possible heart conditions and treatment.- CANCELED because I didn’t do my TEE test even though he said he would see me and discuss my condition. Quite Angry this happened!

New updated scheduled for Aug. 14th

12:oo pm– Meet with financial services. Not sure what is going to be discussed. I’ll update after we meet. Rough News!!! Real Rough. Financial Services broke it down like this. The bill for the MRI will be around $14,000. My Insurance would probably cover about $950.00 of it!!! Mayo would then ask for 10% every month cause they want it paid in 10 mons. Not the, $25 a month as some of have indicated to me. It’s a tough call… I am really on the fence.

I called Dr. Aguilar’s Rn to see if she would be willing to look at MRI/A’s done by another clinic in Nevada. I waiting to hear back.

Waiting At the Mayo on Day #4

2:30 pm– Have an MRI/A of my Head, Neck, and Chest. Dr. Aguilar will review the results and call me with the outcome.

I will be cleared to head back to Vegas then… Following up with my heart rate will be my duty to take care of which I will further persue with Vegas Dr’s at this point.

August 17th-

I proceeded with the the MRI/A testing. When I got in there, I asked the tech if he was gonna give me the IV for the contrast dye. The Radiologist had reviewed the order and didn’t believe it was nec. I told him to double check with Dr. Aguilar cause I believe she wanted it. Good thing I did cause she did!

For those of you that have not had an MRI test, here is a little description. I layed in side this huge white tube. They secure your head from moving and you have to keep completely still. The test took about an hour.

Afterwards, I was really lightheaded and had a hard time standing… they took me to the nurses station and I had some water and they monitored my vitals for about 5mins. and then I was cool.

Now, when they gave me the IV injection, I could feel it make a sound in my neck which is way weird. I got 2 injections and it happened both times. Neither the tech nor the nurses have ever heard of anything like that. They informed me not to be worried which I never was about the sound and feeling I got.

Dr. Aguilar’s nurse, Pat Miller, called me apx 15min after the test with some important info of what will transpire: Dr. Aguilar is going to review the results this past weekend cause she is off on Vaca this weekend. From what she finds, RN Pat Miller will call and advise me with Dr. Aguilar’s recommendations. I may need to return for more testing or follow ups with Dr. Aguilar or she may instruct me to have some testing done that I can do in Las Vegas. It all depends if there is anything telling from the MRI/A. Regardless, there still is something to my heart rate/lightheadedness/and so on… I get to hurry up and wait again…..

Waiting for a test at Mayo

August 18th

Pat Miller, Dr. Aguilar’s RN nurse, at Mayo Clinic called today with the MRI/A results and advised next steps. The MRI showed all the old and same damage done from the onslaught. Nothing was seen to confirm the Vertebral Artery Dissection, but Dr. Aguilar believes strongly that is the cause. The PFO of the heart has not been ruled out yet. They would like me to have a CD of the TEE test sent to them to review as well. In addition, get a cardiologist to move forward in Las Vegas. Dr. Aguilar  would like me to have the Holter monitor and Tilt table test still which I could do here. After reviewing the CD of the TEE test, she may want another done, but at the Mayo Clinic. Even if the test at Mayo does not happen, she will want another face to face meeting and talk about what has been eliminated and what can and should take place with testing and my lifestyle.

I expressed the desire and concern about my fluctuating heart rate and rising blood pressure when I stand and that the Endocrinologist aspect should not be discounted. We have to move one step at a time though and that begins with me sending them the CD of the TEE test and finding a Cardiologist locally here in Vegas.