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1917408 tn?1421952040

I am Herxing and My Daughter is Having Surgery.

My 17 year old daughter got hit in the solar plexus with a football, right over her pacemaker. She only got it because of a major allergic reaction to a dental anesthetic and it has never served a purpose in 8 years. Unfortunately, she can't feel it under her skin after the impact and she gets occasional sharp pains in her abdomen. We are thinking it dislodged and is dangling by the wires. We are headed 200 miles to most likely have it removed, but apparently that is more invasive than we thought it would be. She has to be in CICU for part of the week and will most likely not get out of the hospital until Friday.

I am feeling horrible from my Lyme treatment and even though I took a brief break from the ABx, I woke up w/ a 101.5 fever and even w/ Ibuprofen, it is still around 100....it should be 98.6 for those of you on the metric system. I don't think I have something else going on, but I am nervous about being contagious around sick babies and children. I am very worried I will have to wait this out at a hotel or something, and I can handle stressful situations very well as long as I am not out of the loop, but I don't know how well I would do stuck in a hotel room! Her boyfriend has to work and wasn't able to come along. He is not doing well with not being able to be there and I am really starting to empathize with him! She has wanted it out for years, but now she is nervous, too :)

My LLMD did not call me back today and we are supposed to be there for Pre-Op at 9:30am. I am a bit uncertain if I should go but I really think it is just herxing which is supposed to be a good sign (no matter how awful I feel) that I am killing off those nastly little bacteria.  I am just venting I guess :)
14 Responses
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2034625 tn?1392643292
Just wanted to let you know that you're all still in my prayers. Your daughter is lucky to have such a great mom staying so informed about it all and standing behind her in all of this. Take care both of you...

Hugs,

Laura
Helpful - 0
1917408 tn?1421952040
I have been doing a lot of research into this and while vasovagal syncope usually only slows the heart, it is not unheard of to entirely stop, usually it resets itself w/i 6-10 seconds as opposed to her 15-16 seconds. Both times the doctors have run every test imaginable and all of them come back normal. When we chose to put in the pacemaker last time, it was really more of a safety net, after 6 uneventful days in CICU, just in case there was something not showing up on the tests. While we have all been through the frustration of multiple normal test results in the face of an obvious medical problem, at least we were not confined to cardiac intensive care and tethered to monitors and external pacemakers the size of an accordion while the doctors tried to figure it out! There are only so many tests that can be done and so many days that can be spent in CICU; resources are not unlimited. Pacemakers are the only treatment available when the trigger is not clearly identifiable and especially when it is suspected to be a combination of things. One of the electro-cardiologists even mentioned her frustration with the lack of ongoing studies of patients with this problem. They seem to stop shortly after the insertion of a pacemaker. Most of those people however have incidents more frequently than every 8 years! I think that, unfortunately, this is likely to be yet one more medical issue where there are no clear cut answers. This time, we chose to go w/o the pacemaker (after only 3 uneventful days in CICU)  given the 8 years between incidents, but we are still undecided and will discuss it more at her follow up appointment.

She doesn't seem to have any issues w/ difficulty coming out from general anesthetic, she wakes up almost immediately and completely coherant w/i a few minutes. (she has only had general for the insertion and removal of the pacemaker) The problem didn't start up until the anesthetic was wearing off each time.

Thanks for the suggestion of the hypnosis, Niko. I doubt that is going to be something she will want to try. She is a bit accident prone and active in things that are likely to result in stitches, (horses, skiing, carpentry, etc) and on top of that, had to have a bunch of baby teeth pulled that just refused to come out on their own which is the reason for the frequent lidocaine shots in the last 8 years.  I have given myself stitches w/ no anesthetic and my husband and his mom have had teeth filled w/ no deadening, but for some reason, I just don't see my daughter going for something like that. I am all for alternative medicine when practical, but that is really out there. I hope it doesn't come down to that for her.  

Thanks again guys for all your support and suggestions!

I am so glad to be home! I don't know how much longer I could have survived in that hospital w/ 80 degree rooms! I thought they were supposed to keep the temperature down to combat germs. Stress combined w/ being overheated and way too hot to sleep was a very bad combination for me! Being in an environment with so many sick children and so many worried families that it just felt like the whole place was resonating w/ stressful energy, and sharing an elevator w/ a mother who had just lost her son to an accident was very clarifying and really made it easy to realize that my own health concerns could be much worse!
Helpful - 0
1530171 tn?1448129593
Hi Val.
If  anesthesia is the  only suspected factor in an arrythmic cardiac episode and the reason for your daughter's  pacemaker, then this is a  poor medical decision, when the underlying mechanism and  cause has not been 100% investigated and verified.
Suspicions, guess work, faulty electronics...
there are too many signs there's something not right!

On another note, another thing that would be of concern is the amount of anesthesia that any person can take, before something in the body "gives".
My wife swears that her memory has never been the same, after given anesthetics 5-6x in 3 years.
Medical Hypnosis would be a viable and safer option, if you want to check it out.

Hope it all goes well at the end, for your daughter, just don't let your guard down. Any assurances given by any doctor should be taken with caution.
Blessings to all!
Niko
Helpful - 0
2012515 tn?1353875525
Hey Val,
I'm sorry your daughter is having to go thru this. It's a blessing to have been at the hospital for this serious surgery and for all the kinks to work out with all this change.    Alot for her heart and body to adjust to.

I'm still lifting her in prayer and you and the rest of your family.:)

She has great support from you all and the doctors seem compitent!

Glad to hear you are somewhat better but take care of yourself.

I'm trusting the Lord to bring her through this safe and healthier.:)
Better days are coming ahead!

Hugs and blessings,
Tammy:)


Helpful - 0
1917408 tn?1421952040
Don't worry about having mentioned it. I definitely already have had it in the back of my mind since she perfectly described that MS Hug a few months ago. But really a short in her "bad lead wire" makes perfect sense to me.

She is w/o her pacemaker right now and the plan was to leave it out, but now that is up in the air.

Thanks again for the good thoughts!

Valerie
Helpful - 0
551343 tn?1506830518
Its a difficult situation for you all really. How do you trust, if you are not sure about the cardiologist and also not sure about the pacemaker either its very difficult. That is the problem with technology it is made by human beings and yes they can go wrong, and often do constantly.

Is she without the pacemaker now though?

What is the next step for her recovery?

I am sure you dont have to worry about MS honestly. One thing at a time Val, its enough having to cope with her and this pacemaker without worrying too much about other things.

Wish i hadnt mentioned it now to be honest.

Its just that auto immune does cause problems with local and deep anesthesia, its more to do with the epinephrine.....

Will you let us know how she is later.

Thinking so much about you all. Big hugs. Mariaxxxxx
Helpful - 0
1917408 tn?1421952040
Several things bother me about this assumption that we should consider this as simply a repetition of the incident in '04. When she was about to go under general anesthetic in order to put the pacemaker in, they assured us that local and general anesthetics worked entirely differently and that sensitivity to one didn't transfer to the other. As I can't sleep due mainly to trying to reason this situation out, I looked that info up and came up w/ this from a professor of anesthesiology at the Mayo College of Medicine in Rochester, Minn.

"Two broad classes of pharmacologic agents, local and general, can result in anesthesia. Local anesthetics, such as Novocain, block nerve transmission to pain centers in the central nervous system by binding to and inhibiting the function of an ion channel in the cell membrane of nerve cells known as the sodium channel. This action obstructs the movement of nerve impulses near the site of injection, but there are no changes in awareness and sense perception in other areas.

In contrast, general anesthetics induce a different sort of anesthetic state, one of general insensibility to pain. The patient loses awareness yet his vital physiologic functions, such as breathing and maintenance of blood pressure, continue to function. Less is known about the mechanism of action of general anesthetics compared to locals, despite their use for more than 150 years. The most commonly used general anesthetic agents are administered by breathing and are thus termed inhalational or volatile anesthetics. They are structurally related to ether, the original anesthetic. Their primary site of action is in the central nervous system, where they inhibit nerve transmission by a mechanism distinct from that of local anesthetics."

So, the fact that she has has the same reaction after both a local and a general, and yet she has had lidocaine for dental procedures and stitches from horse accidents, etc. at least 10x in the last 8 years w/o incident bothers me. He is explaining that as it has to be in combination w/ something else like dehydration or something, but I just don't know.

About a week after she got it put in, she said it had "moved", so we drove the 200 miles to see what was what and she basically got a pat on the head and told it couldn't have moved out of the little pocket they had cut into the muscle above her solar plexus. She has complained about the thing ever since and every complaint has been blown off, and most of us on this forum can completely identify with that! Well guess what, right after the surgery the surgeon told me that the thing was wedged under her ribs far more than it showed on the Xrays, which really made me think of what mokanalove had mentioned about her MRI looking normal and then the doctors spending 3 hours fixing all the problems that they couldn't see from the pictures and would never have acknowledged w/o the surgery. The surgeon also told me that a lot of patients have complaints w/ pacemakers put it in that location (which in normal for kids) and yet she has never had a complaint taken seriously. So the trust w/ her cardiologist is not that strong for me.

Your mention of sensitivity to anesthesia and autoimmune problems really has me wondering about another point. I have never experienced anything like the MS Hug and never mentioned it to Seville, but she described it exactly like I've read several members of the MS Forum describe it, but she was attributing it to saying her pacemaker was firing. When the put a pacemaker in a growing child, they put in extra lead wire so that as they grow there is enough wire to accommodate the extra height. Apparently her s somehow got kinked as this happened. They acknowledged that her lead was bad, and that SOMETHING  was running the battery down,  on her pacemaker, but denied that she could feel an electrical shock that would then set off something that apparently feels just like the MS Hug. (If she has this sensation w/o the pacemaker that is really going to open up a whole new line of concern!) I don't see why a short in that lead wire couldn't produce that same sort of sensation. It seems like pure common sense that a bad lead, an unexplained power drain and shock like sensations wouldn't add up to a short that would have some unpleasant consequences if it was happening in your chest! And yet she has gotten patronizing attitude about every complaint. This is the main reason she wanted the thing out, along w/ daily hiccups from pressure on her diaphragm which was also dismissed as not possible and yet confirmed by the surgeon yesterday morning along with rib pain and lung pressure due to the thing not being where it was supposed to be.  So yeah, the trust factor w/ her cardiologist is not really there at this point!

Nothing has ever shown up on the downloads of her pacemaker, and yet we all know that electronics malfunction, so how do we know that her pacemaker just doesn't record events. The big monitor she was on the 2nd time her heart stopped didn't record the event although numerous medical personnel saw the flatline and estimate it at around 16 seconds. They even called the manufacturer but there is no way to recover the info. We just got new very expensive event recorders on the locomotives and last week one was telling us we were going 337 miles per hour when we were going about 25 MPH....electronics DO malfunction! I don't think there is going to be an easy or an obvious answer for this situation.

Helpful - 0
551343 tn?1506830518
OMG Val i would have fainted myself.

I think you have to trust this guy it does seem she is sensitive to anesthesia. The good thing is if she is stable now the stuff has come away from her system that is a good sign yes?

I cant imagine being in your situation not at all. I am sending you huge hugs and prayers for your family.

I am sure she will be fine now.

Its so odd as sensitivity to anesthesia is a symptoms of autoimmune problems as well, so you yourself need to be careful ok.

I know how i felt after my sedation and my teeth.

I feel a lot better now i have heard from you. xx God bless Mariax
Helpful - 0
1917408 tn?1421952040
Her surgery went well and she came through recovery very well and even ate lunch. We went back to the hotel after lunch so I could take a shower since we had to be here at 6am. As soon as I got out of the shower, the phone rang telling us she had "fainted" and that we should come back right away. Our hotel was just a few blocks away but by the time we got back to the hospital, there was a crowd pouring out of her room. She had gone down again and her portable monitor said her heart had completely stopped again.....for the first time in 8 years, but as soon as they removed her pacemaker.

Her cardiologist (one of the top in the country) is saying not to worry, that it is vasovagal syncope that is triggered by anesthesia probably combined w/ dehydration, and that we can leave the pacemaker out and just make sure that whenever she has to have anesthetic of any kind she get a med that will increase her heart rate before, during and after. He thinks the next time she will have any episode would most likely be when she has a baby in 5 -10 years. He has three younger doctors who now work w/ him, an attending, a fellow and a resident, that seem a little less sure of that and are still talking about maybe having to put in another pacemaker. Her surgeon and his fellow are also thinking a new pacemaker is still a possibility. However, the surgeon says her cardiologist is very good and he would be willing to trust his judgement in our situation.

She is feeling fine again now that the anesthetic is completely worn off. We are just not exactly sure where to go from here. It will be interesting to see what the younger doctors have to say after they have their meeting w/ the older doctor. He came in from a day off and talked to us before meeting w/ the younger docs and I am wondering how convinced they will be that he is right after they all have their meeting.

I am feeling much better than I was, but I really hate to take such a long break. I hadn't planned on that at all, but I can't deal w/ that kind of agony while being stuck here at the hospital. My LLMD called back today and just said to get back on the ABx as soon as I can.

Thank all of you so much for your prayers, concern, and well wishes!

Valerie
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551343 tn?1506830518
Yes i am worried too. I hope it is all ok. Big hugs Valxxx
Helpful - 0
1896811 tn?1323978359
Just wanted to check and see how you all were doing. So much going on for you and your daughter:(

Hang in there! Lots of hugs (((hugs)))
Kim
Helpful - 0
551343 tn?1506830518
Hi val so thinking of you and your daughter. I hope this post finds her well and all ok. I just saw this post i must be going mad as i was on yesterday.

I am sorry you feel so poorly with your lymes treatment i hope it is because the little bacteria suckers are leaving your body lol. most antibiotics can make you feel really ill anyway espcially strong ones they use for lymes.

I am praying everything will be ok for you and your family.

Big huge hugs to your daughter. xxx Mariax
Helpful - 0
2012515 tn?1353875525
Val,
I'm lifting your daughter in prayer  and you too!
I will also be praying for all the med staff and drs/surgeons who will be a part of this.
As a mother of course you will be anxious and any others that love her but I know ther Lord will take care of her!:)

Please let us know how it goes.
Praying and hoping your fever passes and you feel better.

Hugs and blessings,
Tammy:)
Helpful - 0
2034625 tn?1392643292
Hey Val,

I'll be praying for your daughter that the surgery goes well and has the best possible outcome.  And for you as well.  I know nothing about Lyme treatments, but it would make sense that getting rid of the bacteria would be a difficult process.  I'm sure some of the others here with lyme experience will know something about this, but I wanted to let you know that I'll be thinking of you.  

Wishing you well and sending you hugs,

Laura
Helpful - 0
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