Confused! Surgery is in 4 days!

I have been having some health issues for about 2 years now. It started dizziness, short of breath, passing out, heart rate dropping. My hemoglobin was 5.1, so a year and a half ago I received blood transfusions. I felt a little better, but still had troubles. My cardiologist has been there through all of this. She has ran holter monitors, 30 day monitors, tilt tests, eeg's, ekg's, etc. I have been taking 15 pills a day to regulate everything. Finally, in December I did the tilt test and my heart rate dropped into the 30's. My doctor said it was the most extreme case she had seen. So, she decided that in order to live a normal life and have kids, I need a pacemaker. Originally, I was diagnosed as Neurocardiogenic Syncope. Which basically means my heart, brain, and nerves don't work together the right way. My doctor now says my body's natural pacemaker just doesn't work correctly. So, I have surgery in 4 days now, and I am very confused!!! I had to go see the specialist/surgeon this past Friday. He walked into my appt. and had NO CLUE what was in my file. He had not read it at all!!! It was very obvious. He then explained that while my doctor is a very thorough doctor and in his practice, he didn't necessarily understand why I was receiving a pacemaker. He felt that it would not cure me 100%. I explained that I already knew that, but my cardiologist who did know my entire history, all my tests, and made this decision, had explained to me that this is the only way she felt comfortable taking me off all the pills to have a normal life and kids. She also told me I would possibly still have to take blood pressure medication (mine is 40 over 60 with no meds). Anyway, this surgeon kept trying to get out of the room to look at my information (a file 1 and 1/2 inches thick) and said he would talk to my doctor. He said he would call me by Tuesday or Wednesday. I told him absolutely NOT, and I would be calling both my doctor and him Monday morning, and they needed to have spoken by then. It took a lot for me to accept this surgery mentally, and now I am confused and bothered. Sorry this is so long, but I wanted to explain everything. Does anyone have any advice???? Please help!!! Thanks! :)

7 Comments

Confusion

by SMITTY - 2010-03-28 06:03:04

Hi Stephanie,

I can understand your being confused. At least I know I would be. Take a look at the following. Now I'm not presenting this as a contradiction of your doctor. Just thought it may give you something to talk to your doctor about.

"Pacemakers are a somewhat controversial treatment for neurocardiogenic syncope (also referred to as vasovagal syncope). Many studies have suggested the efficacy of pacemakers. However, a double-blind randomized trial showed that pacing therapy did not reduce the risk of recurrent syncope in patients with vasovagal syncope. The authors of this study concluded that pacemaker therapy should not be recommended as a first-line therapy for patients with recurrent vasovagal syncope."

If you want more conversation material, or just more information on your illness, take a look at the following web site.

http://www.dinet.org/NCS/ncs.htm#treatment

Good luck,

Smitty

Thank you!

by swatford - 2010-03-28 06:03:27

Thank you for your comment. My husband and I have decided to go through with the surgery as of right now. This surgeon just completely confused and upset us. I'll be 28 years old next month, so this is all scary!
I'm glad that you said the pacemaker has helped. My husband and I were confused after the surgeon's comments. I'm going to check out POTS and call my cardiologist first thing in the morning. I want to make sure that she explains my condition to this surgeon. My surgery is Thursday, April 1st early morning. I'll keep you posted! Thank you again!

Stephanie :)

Sounds Tooo Familiar to me.

by ccallahan - 2010-03-28 06:03:49

Swatford,

Your case sounds too familiar. I spent 8 years, 12 days and 11 hours with some, if not all the issues you are having. I was hooked up with Dr. Blair Grubb at the University of Toledo Ohio. I have written and am continuing to write for the knol page he started involving my condition. You can find my article there also. Look at the articles on POTS. Postural Othorstatic Tachycardia Syndrome. I have been diagnosed with this and since my PM I have noted passed out once. I still have dizziness and other issues but not near what I had. Wow I could go on for a long time. When is your surgery, Date? I would like you to read about POTS and see what you think.. just do a search and you shold be able to find it. Let me know. I will keep in touch today. I have to do something else right now and will be back on line in a little while. My private e-mail, which everyone is welcome to is:

revcallahan@callahanenterprizes.com

I think I may be able to help you out or at lease help you get some answers for your physicians. Do not give up and get tooo upset or depressed. Please stay connected to us and the site. Don't go away. I will back and will give you more info and hopefully some encouragement and help.

Rev. Chuck

Exactly!!!

by swatford - 2010-03-28 07:03:53

Smitty~
I have previously read the exact thing you posted. The thing is my doctor originally diagnosed me as neurocardiogenic syncope, however after more tests, she says that my natural pacemaker just doesn't work correctly. Thanks for your post! I'll keep everyone updated!


Renee~
I'm very, very confident with my cardiologist. The whole reason I got referred to her 2 years ago was because she was the #1 cardiologist in our area. My husband said almost the exact same thing that you said, Renee!!! Thank you for your comment! It reassures me that I am making the correct decision. :)

Swatford

by brooke1803 - 2010-03-28 08:03:32

Hello. I am right now sitting in the hospital 2 weeks after having my PM implanted. Why am I in the hosp. because my Cardio. explained the same exact thng as your Cardio said...syncope is the prob. i have. the pacemaker will indeed keep my HR up..i was holding steady in my teens..20's and 30's resting or wandering about, a few weeks before my surgery I started passing out more freq. So here i am..being told the PM will indeed hold me at a steady 60 bpm or above IF my heart wants to pace for me, BUT will not fix the syncope... I will continue to run 73/38 or lower BP.. how to solve it..i laff at this..drink more!!! Tomorrow I will have uhmm I dont know what its called, the test dome where they numb your leg and go up through there to look at your arteries. Just to make sure I dont have some underlying problem..causimg me to continue to black out. (i did yesterday which led me to be here in th hospt.) Listen:: do not be scared of the surgery, be excited you will FINALY holdat a normal HR... be able to have kids and yes a normal life, I mean I had kids and normal life until one day I woke up with a HR in the 30s wich rendered me almost unable to take care of my children. Since June I have been like this..NOW I can take walks with mu girls and laff with them with out feeling light headed, or dizzy. It will well worth the surgery!!! Even if they cant fix the syncop..(BP) problem... the PM will have you laffing and walking in no time!!!

Good Luck!!!!
Brooke

Typical medical situation

by ElectricFrank - 2010-03-29 02:03:44

It really sad that at the times when we are feeling lousy is when we we need to muster all our energy to deal with the docs.

At this point it seems like a pacemaker is a good option for you. Once you get the pacer and get it adjusted properly I would try to get off any meds you have been taking. This gives your body a chance to adjust to the new environment with the pacer. All too often they start a person down the med route to try to avoid needing a pacemaker (which may be a good idea), but they after finally implanting a pacer they continue the meds.

The pacemaker surgery isn't all that bad. One suggestion for after the surgery is to sleep on the side opposite it and put a pillow in front of you to support the upper arm. The idea is to keep from squeezing the surgery area which can hurt and interfere with sleep.

frank

Surgery went great!

by swatford - 2010-04-12 08:04:00

Hey everyone! We actually decided not to go with the surgeon that I talked about in these posts. He was a completely egotistical jerk, and I just didn't feel comfortable with him. So, anyway, my cardiologist found a surgeon that Rocked! And, I had surgery the day after I was supposed too! :) I was in the hospital for just over a day, and slept completely through the surgery. I woke up rather well afterwards. It was rough to sit up, and sleep on my back, but hey at least I'm healthy! They put me on percocet after surgery, but it made me soooooo sick, that I had to quit taking it. Just taking tylenol if I have pain now. I have found it VERY hard to not use my left arm, and I am paranoid that I might pull a lead loose!!! How will I know if I did???? I went back to work today, and felt great other than a little soreness below my collar bone. My first checkup is tomorrow, so I'll let everyone know how it goes! Thanks for all your support! :)

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