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Pacemaker (reply for Hayley)


bluegirl
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Hi again to you all and thanks for your replies to my message.

The reason I had a pacemaker in 2002 is because I had a 5 second ventricular standstill - that means my heart actually stopped beating and I might have died if it didnt restart!! SCARY!! :huh:

I have just been discharged from hospital after having spent 10 days in there when it was only a "day appointment"!!

They left me sitting in a wheel chair for over 5 hrs and then wanted to do a lumber puncture but they couldnt get me out of the wheelchair as I had seized up!!

I have had the lp and CT mylogramand loads of blood tests and am now awaiting all the results.

The neuro bods have now referred me back to my neurosurgeon with a view to possibly fusing my back.

Since being home I have been alone today for the first time, since coming out of hospital, and have already fallen over and had to crawl up the curniture to get up!

The have increased 2 of my drugs by trebelling them overnight and my body is so confused. They say that I have to take these high doses (gabapentin/neurotonin) if I am to have surgery as it will help with the pain, but now my right arm feels like it doesnt belong to me.

I am scared and frustrated but glad to know that I have this forum to rant and rave!!

Has anyone else gone thru the mill like me; gone from consultant to consultant and given more and more drugs to take? Im sure its their mixing with each other (if you know what I mean)????

Anyway, I just wanted you all to know that I am back home now and let Hayley know why I had a pacemaker implanted. Just as a matter of interest, 2 of the drugs I have been on have recently been withdrawn and I took these prior to my pacemaker being implanted and these withdrawn drugs are responsible for heart attacks/strokes and other problems. Does anyone know what Im talking about??! :)

I want to go and see Prof Mathias again, but the last time I saw him he said he was concrned about seeing me because it was a long way for me to travel (even tho my husband takes the day off from work and drives me to London) and that we should deal with things by post. Do you think it is worth my cntacting him again to be reassessed since I was diagnosed by the tilt table with POTS in 2002.

Anyway, best wishes to you all and thanks for your replis

Julia

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Guest tearose

Hi Julia! It must feel so good to be home! What a shock to go for a visit and then to be kept for 10 days!

I am worried that you are alone and not steady on your feet! I use a walker with wheels to get around when I'm that tipsy. You must be very careful because you don't want to fall or something and not be able to get help. Can you have someone pick one up for you? Can you have someone check in on you?

Yes, I have been through the "mill" with many doctors and tests. You should keep looking for information and answers until you feel satisfied. It is very tiring but remember, you must be your own advocate and fight for yourself. I think it would be a great idea to check with Mathias. He understands so much more about your condition and may offer you some important insights in how to proceed. He may suggest you go to see him or maybe there is some new information since he last saw you.

I hope the neurontin helps with the pain and numbness. I know that others have had surgery and maybe they can comment on that aspect. I just want to say please do rant and rave as much as you need! I think it helps to figure out what to do next!

Best regards, tearose

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Julia, it is good to hear from you and know that you are home from the hospital. How amazing that they would leave you so long sitting in the wheelchair! It is a reminder that so little in known in the medical community about the delicate nature of these type conditions. I am really sorry that you had to go through all that. Being alone must be frustrating for you. Is there any type of healthcare home visits that your doctor could order for you? If not, do you have friends or family that could stay with you or you with them while your husband is at work? This will be really important while you recuperate from surgery.

I don't have experience with the drugs you mentioned but believe others here do so hopefully you can get some feedback. Sounds like not feeling like your right arm is there is a serious effect and your doctor who prescribed should be consulted immediately.

The fact that you say you want to visit Dr. Mathias says that you have confidence in him and perhaps seeing him again would be helpful. I think I would take his travel concerns and find out if there is a way to get there without causing more problems, maybe even staying overnight if that would help you. It is good that your husband is able to take off and go with you.

I am so sorry that you are going through the mill again and hope that you will be feeling some improvement soon.

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