Big Oops

[Gnusgal]

Another update

Another update

As I told you all yesterday, my middle finger on my right hand has been twitching. It's not constant, but is has been going on and off for the last two days. I called my EP the first day (because she said to report anything unusual, and I'd call THAT unusual) and left a message with her nurse. She and I agreed that it probably wasn't a big deal, and not to worry about it. But she said she'd talk to the doctor and if I didn't hear back from them to assume that meant not to worry. I didn't hear back that day. However, yesterday morning I got a call from the nurse. She asked me a few questions (Is it just the one finger? Is it constant? etc.). Then she said that she had talked to the neurologist I'd seen in the ER on Friday. He thought it MIGHT be a "focal point seisure" (Sp?), but he's never heard of it happening in just one finger, usually the whole hand. I was told to call her this morning if it continued and it has. Though it seems to have slowed down in frequency since last night. As a matter of fact I haven't had it happen this morning at all. But I will call anyway.

My question is, has anyone heard of "focal point seisures" before? And if so, do you know what causes them? Is it a pinched nerve or something in the brain? Hopefully I can get some answers from the doc today.

Thanks for "listening."

 

[Guest]

Since you are going to find out today, any speculation on our part would just muddy the waters.

 

[Gnusgal]

In the ER AGAIN!

In the ER AGAIN!

Well, after talking to my doc's nurse again today and letting her know that the finger twitching was still going on she talked to the neurologist I'd seen in the ER and called me back. He wanted to examine me, but he doesn't actually have an office, he just sees patients in the hospital. So I had to go into the ER to see him. Apparently he'd been under the impression that the twitching was constant, even though I'd informed the nurse that it was intermitant. He ran another CT scan (this time with contrast) and there was still nothing there. All the little muscle tests he did were normal as well. He wants me to have an EEG and to start seeing a neurologist of my own. He gave me some names to call. The really annoying thing is, ever since this afternoon, I have not had any more episodes of the finger twitching. Is there really any point in doing the EEG or seeing another neurologist? I already have to take off from work on Monday for my TEE (that probably won't show anything) and I really don't have many more sick days left. I only had 8 this year and I've used 4 already. The school year has barely even started. Being the only income in the family, I really can't afford to start being docked pay for every time I'm absent.

This is getting VERY annoying and worrisome. I don't know how much longer I can take this added stress. I though I'd have the surgery, then feel better for a long time, just like the last OH surgery I had. I went a full year, almost, before I had any more problems, and that was just atrial flutter that was able to be controlled by meds. I then went three more years without a problem, for the most part. Now I'm suddenly a frequent flier to the ER. It's pretty sad when one of the nurses in the ER says to you "You're back again?" I'm really regretting this surgery. It seems to be making everything worse! I know, I know, it's purpose wasn't to make things better, only put off transplant awhile longer, but I'm almost thinking I'd rather just get the transplant and be done with it.

Sorry. I suddenly needed to vent. Wasn't expecting to say all that. Just wanted to update everyone on the situation.

 

[Guest]

Venting here is cheaper than a psychiatrist AND you don't have to take time off!!!!

 

[Blanche]

Venting here is a good thing!!!!

Venting here is a good thing!!!!

You need to get out your frustrations and concerns. Everyone here is in your corner. All of the stress you are under can't be good and may even be causing some of your problems. Of course, the stress itself is a terrible problem. I would hope that you might find ways to reduce the stress some. Reading poetry or a good book, a bubble bath, and petting cats help me when I get tightly wound-up. Wish I could advise you on the EEG and the neurologist. I tend to take the hard road, better safe than... I rather think that if you don't follow thru with what was ordered by the ER doctor, you'll stress out even more. I'll hold you tightly in my prayers and think good thoughts for you. You will get beyond this and better days are ahead.
Kindest regards,
Blanche

 

[Kim]

Niki,

Please try and relax!

From my past, I know for a fact that any physical symptom I have escalates when I worry about it .....in fact the symptoms usually get worse until I have been reassured that there is nothing wrong!! Then they usually go away. It is amazing what our mind can do to our bodies! You are doing the right thing by letting the docs know your symptoms. Take it one day at a time and Iwill keep you in my prayers.

 

[joy]

Hi Niki, I don't mean to pry, but why exactly are you going to be needing a transplant? I was just wondering. It is a scary thing, and I will be praying for you every day. Let us know how your TEE goes today...Try to relax, and when you need to vent we're here to lean on!

 

[Gnusgal]

No problem, Joy.

No problem, Joy.

I was born with complex congenital heart defects: Situs inversus totalus (all organs on oposite side, in mirror image, from normal), ASD and VSD (holes between left and right sides of heart), Pulmonic stenosis (narrowing of the pulminary artery), congenitally corrected transposition of the great vessels (the ventrical that is "built" to pump to the body pumps to the lungs, and vice versa).

It is the cctgv that points us towards transplant. You see, the smaller ventricular muscle is being forced to do the majority of the work in my heart (pump to the body) and over time it gets weaker and weaker. Right now all we can do is try to make its job easier until such time as there is no other option BUT transplant. When I was little they didn't have ways to do tranplants on people with my "backwards" anatomy. But now it seems they have the capability. After my first open heart surgery (to close the ASD and VSD) the card I had at the time thought we may have eliminated the need for a transplant. But that was based on the info of the time. Unfortunately, rather than getting to read about how doing this or that will effect someone with my heart defects, I get to help write it for those who come after me. Doctors now hold little help that anything they do will completely eliminate the need for transplant in me. They just do all they can to postpone it so that technology and research can come up with something that is a lot less risky (who knows, maybe I'll get to have a geneticly engenered pig heart... ). But hopefully that won't be for quite some time now. (crossing my fingers as I type, which is making it difficult to type... )

Hope that answered your question, Joy, and didn't get you TOO confused. I confuse medical professionals all the time...

 

[Creed3]

Niki:
I know from experience that stress and anxiety can make your fingers tingle/numb etc....I am not saying that this is what it is, but try to keep yourself calm if you can. I know that is easier said than done. I also agree that you should have the tests done. It is definately better to be safe than sorry. I'm sending out my prayers to you. I'm sure everything will be fine.

Take Care!
Creed

 

[Guest]

Niki,

You should probably change your handle to Alice in Wonderland, because I think that you went through the looking glass.

Hope you see that as humor to try to make the best of a tough situation.

 

[Gnusgal]

Al,

Al,

Humor noted and apreciated.

My family and I joke around all the time about how I might have come out this way. The most popular vote is that as I was waiting in the line to recieve internal organs I thought someone called my name, so I turned around and POP they put them in backwards. But I kinda like your looking glass theory.

I am indeed a bit "strange" but at least I'm unique! My hubby calls me (lovingly) his "little mutant." And the thing I find the FUNNIEST is that just about every time I tell someone new about my heart being on the oposite side, they ask me if I use my left hand for saying the pledge. I have to answer no because when I was in preschool I got in trouble for doing just that (my parents had joked about it when I was little, and I took it seriously). I was told very sternly by the teacher that I was using the wrong hand, and my heart was on the other side. Being the shy kid I was I just started balling. But it sure was cool when Mom was able to correct her!

 

[Guest]

You know, I thought about that but didn't think it was funny enough. Glad you have been able to laugh about it.