Emergency Of Sorts

Symptoms and Treatments Symptoms - CIDP
1

I have been having skipped heart beats, feeling like my heart was going crazy for a yr or more with a lot of dizziness. I tell ppl all the time I feel like i am going to pass out. When I went into the day hospital over three weeks ago to have what will be my last IVIG treatment due to side effects and what appears to be lessened benefits, I told them and all they did was an a ECG which showed nothing, duh. These things come on me five or more times a day, last 1-5 secs and have lasted longer a few times.

At my insistence my neuro sent me to a cardiologist this past Monday (1/30)who put me on a 48 hr holter monitor. Turned it in at lunch on Thurs, got an immed call fr the Dr telling me to come to the hosp immed to be admitted into the CCU. I have a potentially fatal vtac arrythmia. That was Thurs. they put me on beta blockers which stopped them. First a heart cath which ruled out blockages and heart disease. Then they tried to induce electrical probs with meds, speeding up the heart. I was scratching my head, asking them “isn’t this like giving me a great allergy med then handing me a flower and expecting me to sneeze? I have the beta blocker in me”. Durr. They did that test, small reaction, stopped the blocker then the next morn put me on the tred mill for a stress test, less than 24 hrs off beta blocker, and induced smallish amts of bad arrythmias. SOOO, now this is day two with no bb med and they want me to turn flips in hall and Monday all electrical tests will be redone.

I INSISTED they bring my CIPD neuro in who is doing some research this weekend. The situation is if they can find a bad place on my heart that is on the right side they can go in and do an ablation (burn off/remove) the bad place fr my heart. On the left side, no. They will implant a defibulator and pacemaker combo device. If they do this I cannot have any more MRIs. I am a breast can survivor who lost both breasts to can and I have a brain tumor.

I need MRIs. I can find issues with autonomic system, (heart rhythm, blood pressure, diaphragm, body temp) with GBS. How’s about CIDP? I need help. Tomorrow is the day. I need info to point them to if none has been found by my neuro, from reputable sources. You know, medical sites. Thanks so much. I just feel this could be related, also what could be misconstrued to be hot flashes. I have those but had a total hysterectomy in 2002 and do not take hormones due to the breast can found 13 mos later so I do not see how these are hot flashes. When the autonomic system is affected that is as well.

2

So sorry to hear of your multiple medical problems. I can only add that my wife is a surgical coordinator and she commented when I read your post to her. She knows how frightening to a person a heart problem can be. It's horrible. On the other hand, some of her surgeons perform your procedure several times a day, several times a year, and have for many years. She says she can't recall them losing anyone over it. It's pretty routine if you are a heart surgeon. She says a really good thing is that the devices are much smaller today. As she sees it, you will come through it fine with the condition resolved. The MRIs. A bad side effect not being able to have them.

Just know, it's survivable, and you will be better off having the heart problem taken care of. One less thing to worry about as I think. Prayers and best wishes to you.

3

Ty for the encouragement. They are doing a EP study in the morning and will ablate if they find anything. I am very nervous.

4

Ok, FYI, my cardiologist told me that he definately feels that this V tach and my CIDP are related. He went in and did a heart cath, no blocks or coronary disease of any kind. Heart looks great. Went back in yesterday and did an EP study (thru both veins in my thighs and one in my neck) and found a place to ablate on the outside of my heart, but it was in the crease at the top of my heart. He tried 59 times and could not abate. I am having a defibralator/pacemaker implanted Friday which now complicates things as I cannot have MRIs now, and I have te brain stem tumor. He is implanting the single wired defib. so it will be easier to replace should a defib become avail. That is MRI compatible it will be easier to redo. They are experimenting in Europe and we have a pacemaker only, but no defib here yet.

5

Glad to hear your cardo is looking ahead. I'd imagine when the MRI compatible model is available the Cardo can convince the insurance that replacement is medically necessary. Some times we just have to tough things out. Be it what we have to do to live for another day, or a walk down a long hall when our legs are telling us to sit down. Hugs!