Three years and all's well

[mabeckoff]

Jennifer, i am so glad to hear how well you are doing 3 years after your surgery...
you are the kindest person, and always ready to share your own experience on
this forum....
it is nice when someone so nice has such good news!
wishing you an eternity of continued support from your new, straight spine...
glad to hear your heart problem is being treated and under control...

jess...& Sparky

I agree totally

[rohrer01]

Jennifer,
I'm just catching up on this thread. I'm so glad to hear that you are doing so well with your spine surgery!

I'm very sorry to hear about your heart problem. I also have a heart problem. It has actually bothered me since my late teens as far as I can remember, but was not diagnosed until I was in my 30's. It's called "inappropriate sinus tachycardia" or IST for short. It is where I have NO exercise tolerance without my heartrate skyrocketing and it will also skyrocket for NO reason at all. When I say that I mean 150+ beats per minute. It makes me very weak. I also have to take beta blockers. I've been on a couple that made me feel so sick that I told my doctor that I refuse to take them anymore because they make me so sick and I feel like I'm having a heart attack. He basically said, okay but when you get enough of it or it gets bad enough you'll take them. He had actually introduce me to a "new" one that still does not have a generic. My experience from the others scared me so much that I didn't try it. But as he said, I eventually got so bad that I finally said, okay. After my first dose, I actually craved the stuff! It was weird. We started off on the smallest dose and then went up one more. Now, I'm doing great, with no adverse side effects what-so-ever. If you want to know the name of the beta blocker, then you can PM me. I don't know if it is available in Australia yet or not, but if you're having trouble with your current med, it might be worth asking. It was designed for low side-effects and I can testify that it has been great for me.

Take care, and again, it's great to hear that you are doing so well otherwise. You are really one of our cheer-leaders!

Rohrer01

[JenniferG]

Thank you kindly Rockycarm and Melissa.

Rohr, it's great that you've found a medication that has zero side effects for you. I'll PM you shortly. I've tried a couple of different meds and the ones I'm on now, I tolerate best, though there's still that nausea and lethargy. I also get a burning in the back of my chest. But the good thing is, I'm normally an insomniac and the meds are giving me a good night's sleep most nights. They are Coversyl and Bicor.

I've had palpitations since about age 50. I thought it was menopause. I also thought, as I've got older, I don't handle stress as well as I should. If only I did something about it then. It gradually got worse until I had a suspected heart attack last October. That's when they did tests and found it. Dr. said it wasn't a heart attack (don't know what it was, even the paramedics thought it was a heart attack.) But it found the problem and for the first time in 10 years, on a low dose of meds, I'm not getting the palpitations. Perhaps this is why I'm sleeping better.

[Lilysaidwhat]

Happy Anniversary! I hope your celebration was great!

[Confusedmom]

Congratulations, and thank you for always being here!!

[titaniumed]

Jen
I have no idea what kinds of shots would be recommended when the time comes. The bone spurs have nothing to do with my prior surgeries, they are an age related thing along with the degeneration of the disc. They are in the front of the C5 vertebral body.

I’m sorry about your heart. It’s so hard thinking about all these other things now that we have made it through our scoliosis surgeries....I don’t know if you feel the same way I do, but I just cannot worry about these new things anymore. I will probably just take it day by day and let pain make my decision....

On a lighter note, the Brisbane wreck looks great. They have penetration diving into the ship, and can actually go into the Captains quarters and check out the bed. I can lay down if I’m tired, rest the neck. LOL

I don’t know if you ever read my posts years ago about underwater submersion, but de-weighting before fusion surgery is a good thing, and I temporarily cured my sciatica in the ocean. Now that I’m fused, I notice no difference at all as far as a break or release from gravity.

Janet

My new situation is in my neck....above my fusion. The C5/C6 level nerves control the shoulders and arms. I think as long as I can win at poker, that level is doing ok. (smiley face) As far as what type of surgery would be done, I have no idea. I will have to study this now.
Ed

[SpineTime]

Love your pictures!

Today marks three years since my surgery.

Jennifer,

Congratulations on your 3-year anniversary! Your posts are always so warm and kind. I wanted to share with you that the pictures in your signature line are some of the first (maybe THE first?) I ever saw of pre- and post-op fusion surgery. I remember thinking how much I REALLY don't want to have this surgery, but that I really DO want my back to look as straight and beautiful as yours! I also thought, in looking at your pictures, that you were probably in your 30s, and I was quite shocked to see your actual age! You are very inspirational to people like me who haven't had surgery yet, and I always enjoy seeing your posts.

I hope all will be well with your heart. I'm taking a beta blocker (atenolol) for heart palpitations, increased blood pressure and heart rate. So far, we don't know what's causing it, and my doctor doesn't seem that concerned, since I don't have any risk factors for heart disease. But I am going to push for him to do more testing. We've already had to increase the dose once, and yet the palpitations are back, with any little amount of activity I do. At first, the atenolol made me so drowsy during the day that I couldn't keep my eyes open, but luckily I was able to break it in half and take a 1/2 dose at bedtime and 1/2 in the morning, so no more drowsiness.

Lisa

[JenniferG]

Awww, thank you Lisa! What a nice thing to say. I hope that if and when you have surgery, you are as fortunate with your surgeon as I have been. It's amazing what they can do.

It's good that by halving your tablet you've avoided the drowsiness. Do you find you're sleeping better by taking half at bedtime? I think it's a good idea to try to find out the reason for your palpitations and increased blood pressure. So far all my tests have been non invasive: ecg, echocardiogram, stress echo, holter test and cardiac MRI. I was hoping to avoid the angiogram and so far the cardiologist doesn't think it's necessary. But I may yet have to have it if for example, my blood pressure increases, or the palpitations return. Mine are not associated with exercise, I used to get them sitting watching tv or on the computer!

[rohrer01]

I hope all will be well with your heart. I'm taking a beta blocker (atenolol) for heart palpitations, increased blood pressure and heart rate. So far, we don't know what's causing it, and my doctor doesn't seem that concerned, since I don't have any risk factors for heart disease. But I am going to push for him to do more testing. We've already had to increase the dose once, and yet the palpitations are back, with any little amount of activity I do. At first, the atenolol made me so drowsy during the day that I couldn't keep my eyes open, but luckily I was able to break it in half and take a 1/2 dose at bedtime and 1/2 in the morning, so no more drowsiness.

Lisa

Lisa, you could ask to be tested for what I have. Although, my blood pressure is low before the beta blocker. I also tried atenolol. If I was even 10 minutes late for my dose, I went into full tachy where all I could to was to lay on the bed until the med kicked in. It was aweful! Okay, I'll let the cat outa the bag, since you all are naming your meds. It's Bystolic (nebivolol) but there's not generic, yet. I didn't want to sound like a drug rep.

Ed,
I have a bone spur at C5 as well. It points inward toward my spine but is very, very small. Nothing to worry about, yet.

[SpineTime]

Awww, thank you Lisa! What a nice thing to say. I hope that if and when you have surgery, you are as fortunate with your surgeon as I have been. It's amazing what they can do.

It's good that by halving your tablet you've avoided the drowsiness. Do you find you're sleeping better by taking half at bedtime? I think it's a good idea to try to find out the reason for your palpitations and increased blood pressure. So far all my tests have been non invasive: ecg, echocardiogram, stress echo, holter test and cardiac MRI. I was hoping to avoid the angiogram and so far the cardiologist doesn't think it's necessary. But I may yet have to have it if for example, my blood pressure increases, or the palpitations return. Mine are not associated with exercise, I used to get them sitting watching tv or on the computer!

I don't think my sleep has changed by taking a half tablet at bedtime. It almost always takes me a while to fall asleep (probably 30-60 minutes?) even if I'm really tired and sleepy. I haven't noticed any difference with the beta blocker. Strangely, when I'm in bed trying to fall asleep is when I really notice my heart pounding. I know what you mean, it's not a good feeling to feel your heart racing or pounding when you aren't even moving!

Other than blood tests that were all normal, I just recently had a carotid ultrasound, and that came back fine. No problem or blockage in the carotid arteries, so that's good to know. I'd like to have the tests you mentioned, and I plan to ask my doctor about it. I did do some reading, and apparently people sometimes just have it happen where they feel their heart beating really hard and/or fast, really being aware of it, and yet nothing is wrong, or at least they can't find anything wrong. So we'll see. I just feel very uneasy about it, and I don't want to ignore it.

[SpineTime]

Lisa, you could ask to be tested for what I have. Although, my blood pressure is low before the beta blocker. I also tried atenolol. If I was even 10 minutes late for my dose, I went into full tachy where all I could to was to lay on the bed until the med kicked in. It was aweful! Okay, I'll let the cat outa the bag, since you all are naming your meds. It's Bystolic (nebivolol) but there's not generic, yet. I didn't want to sound like a drug rep.

Oh, that sounds awful! I was very sick with a virus that attacked my thyroid (at least that's the theory) almost 5 years ago, and it caused me to be hyperthyroid for several weeks (then hypothyroid, then completely back to normal). One of the many symptoms when I was in the hyperthyroid phase was tachycardia. My resting heart rate was 142. When I finally went to Urgent Care (after feeling horribly sick, almost like the flu, but it was off and on, for over a week) the nurse took my pulse and asked me if I'd just been exercising in the waiting room! They sent me to the ER, and they gave me fluids and hooked me up to an EKG. Before they figured out what was wrong, the nurses kept asking if I was nervous or anxious. I guess they thought maybe I was having a panic attack because of my heart rate. Nope. I was calm as could be! They kept me in the hospital for 3 days, running tests and making sure it was really just a virus and nothing more serious with the thyroid. They had me on a beta blocker then, but I don't remember the name of it. I could look it up. Are we not supposed to say the names? (I'm not a drug rep. I could never sell anything! lol) But seriously, I will ask my doctor about doing more testing. I don't like just treating the symptom and not knowing what's causing it.

[rohrer01]

Oh, that sounds awful! I was very sick with a virus that attacked my thyroid (at least that's the theory) almost 5 years ago, and it caused me to be hyperthyroid for several weeks (then hypothyroid, then completely back to normal). One of the many symptoms when I was in the hyperthyroid phase was tachycardia. My resting heart rate was 142. When I finally went to Urgent Care (after feeling horribly sick, almost like the flu, but it was off and on, for over a week) the nurse took my pulse and asked me if I'd just been exercising in the waiting room! They sent me to the ER, and they gave me fluids and hooked me up to an EKG. Before they figured out what was wrong, the nurses kept asking if I was nervous or anxious. I guess they thought maybe I was having a panic attack because of my heart rate. Nope. I was calm as could be! They kept me in the hospital for 3 days, running tests and making sure it was really just a virus and nothing more serious with the thyroid. They had me on a beta blocker then, but I don't remember the name of it. I could look it up. Are we not supposed to say the names? (I'm not a drug rep. I could never sell anything! lol) But seriously, I will ask my doctor about doing more testing. I don't like just treating the symptom and not knowing what's causing it.

My curves are similar to yours except much, much higher. My doc seriously wants to wait until they are over 60* before he'll do surgery and I can't get a second opinion because of my insurance. I just recently had a minor surgery, like I've had several times before and am sick on top of it, so even considering surgery right now literally makes me nauseous.

One really bad time that it (my heart rate going out of control) happened to me I couldn't even count my pulse because it was going so fast, well over 200. I went to the wrong hospital. I was too scared to go to the good one an hour away. I was afraid I would die before I got there. They treated me like garbage and sent me home in an arrythmia and did absolutely NOTHING. I ended up going to Mayo Clinic to get diagnosed. The symptoms of IST are a high resting heart rate, exercise intolerance, and tachycardias for no reason. The actual heartbeat is a normal sinus beat, just really, really fast. Another time, I almost collapsed taking my son to the doctor and the doc freaked out and got a crash cart in the room. My resting pulse then was over 160. The main symptoms I get are pure fatigue, like I just can't do anything, not even sit or stand up straight. Look it up on the internet. You'll get a ton of information on it.

Oh, and a couple of years ago, I had wrist surgery. You know all the things they ask you before you go into the room (if you've ever had surgery). The nurse asked me about my heart and I told her that I have Inappropriate Sinus Tachycardia and she actually started laughing! I asked her if there were something funny about that... I'm guessing she'd never heard of it before and thought I was making it up. Talk about insensitive and ignorant!

I hope you get the answers you are looking for about your heart. No, I don't think there is a problem mentioning meds on the forum. I guess I didn't feel comfortable at first because it was an off topic med, like not scoli related.

Take Care,
Rohrer01

[JenniferG]

I don't think my sleep has changed by taking a half tablet at bedtime. It almost always takes me a while to fall asleep (probably 30-60 minutes?) even if I'm really tired and sleepy. I haven't noticed any difference with the beta blocker. Strangely, when I'm in bed trying to fall asleep is when I really notice my heart pounding. I know what you mean, it's not a good feeling to feel your heart racing or pounding when you aren't even moving!

Other than blood tests that were all normal, I just recently had a carotid ultrasound, and that came back fine. No problem or blockage in the carotid arteries, so that's good to know. I'd like to have the tests you mentioned, and I plan to ask my doctor about it. I did do some reading, and apparently people sometimes just have it happen where they feel their heart beating really hard and/or fast, really being aware of it, and yet nothing is wrong, or at least they can't find anything wrong. So we'll see. I just feel very uneasy about it, and I don't want to ignore it.

Best of luck getting the other tests done. Having a heart problem is a bit scary and you need to know everything that should be done has been done.

[Pooka1]

Congratulations Jennifer!

Sorry to hear about the heart thing. Aren't there a few choices for beta blockers? Can't they try you on another one?

I have heard that they will put Marfan's kids on beta blockers for life in order to avoid the aortic enlargement (and even ameliorate some that might have already happened). I called into a medical radio show about long term usage of beta blockers as for these kids and they said there is no problem.

Good luck.

[rohrer01]

Congratulations Jennifer!

Sorry to hear about the heart thing. Aren't there a few choices for beta blockers? Can't they try you on another one?

I have heard that they will put Marfan's kids on beta blockers for life in order to avoid the aortic enlargement (and even ameliorate some that might have already happened). I called into a medical radio show about long term usage of beta blockers as for these kids and they said there is no problem.

Good luck.

Sharon,
There are a ton of choices out there. Unfortunately, at least in my case, if a person has asthma or other lung conditions, the choices become quite limited.

I also read on the internet somewhere doing some research on Marfan's and scoliosis, etc. that scoliosis being in the connective tissue class of disorders can make one prone to mitral valve prolapse. It didn't necessarily say you had to have Marfan's, too. I can't cite my source because it was a long time ago, but it would be worth looking up for those of us with scoli. Like I said, I don't remember where I read it, but if you can find a research paper on it, since you're so good at that, I'm sure the rest of us would be more than interested. Otherwise, everyone is responsible for themselves anyway. It just seems, now that someone brought it up, thanks Jennifer, that quite a few scoli's seem to have some heart issues. Fortunately, they seem relatively minor as compared to some of the major, major heart problems.