37 want normal life back

Hi michele susan again still not getting any answers .I have a Guaint Ultra Signia model 1290 FDA said it was recalled in sept 2005 mine was implanted in sept 2006. I am still in pain passing out chest pain ,pain in arm you can feel to me like the lead in poking out on top of pacemaker and on side cant raise arm above my head . guidant said my seriel numbers isnt on recall .........................................................had cadionet moniter on for 21 days .doctors said everything okay..Had pacemaker check up from dec 11 to dec 18 my data was full ,does it store data after you have epasodes?pacemaker kicking in 6 to9 times or more aday but taking longer for heart rate to go back ti normal . What does that mean?looking for another doctor to relocate it but,was told it may make pain I havenow worse.BUt so painful i cant take it anymore ready to lose my mind lpease give me any advice before i lose my mind! my doctor makes me fill like its all in my head .I know its not but very depressing when no one belives what i am feeling or going thru Iam so glad Ifound this website it makes me like i am not alone out there. Also how do i see if anyone else answered my first message after being posted it. thanks for listening hope to hear from someone.

7 Comments

Getting Your Life Back

by SMITTY - 2007-12-25 04:12:05

Hello Michelle,

I recall your post back in November because my wife and I discussed your situation and thought you were being mistreated then. I didn’t comment because I thought you had already gotten better information than anything I would have to offer. But I see things have not gotten better and it looks like they may even be worse.

My opinion now is that you are running into that stone wall so many of us that get pacemakers are confronted with. It is hard to believe that a doctor could be so uncaring as too not make a greater effort than you have received to give you your life back. As has been suggested before, the best course of action could be to find another doctor, but not knowing your location or circumstances I can understand how that may not be a realistic option for you. So rather than dwell more on that subject, I have a suggestion, if you are located in the U.S.

Print out both of your messages to the Pacemaker Club and mail them to the hospital administrator where you got your pacemaker. Wouldn’t hurt to send a copy to the doctor either and an attorney if you have one’s name you can use? Now I say MAIL them because if you went in and tried to verbalize your problem you may be met with an attempt to intimidate you. This is a favorite trick of some hospital personnel as many people will drop the subject rater than face more of that abuse. But, usually, a hospital administrator will be concerned about having the hospital named in a lawsuit, be they guilty of anything or not. Also, that hospital has to stop and think that if that doctor has one patient so mistreated and unhappy, how many more does he have in the same situation.

But I truly think it is time to give that doctor and anyone else possibly involved the mule treatment. In case you are not familiar with that treatment I’ll tell you what it is. A mule is a very stubborn animal and sometimes, it is said, that you have to hit him between the eyes with a 2 X 4 to get his attention before he will comply with your request. So if that is what it takes to get the care you deserve, so be it. Of course, if you do this you must be prepared to face one very irate doctor.

I wish you the best,

Smitty

Hope this helps

by TKS - 2007-12-25 09:12:42

Susan M,

If your Dr. makes you feel like it's all in your head find another Dr. and get a second opinion. Or a third or fourth if necessary. I also have a recalled PM and that was implanted about same time as yours and I don't have any pain. A little discomfort now and again but nothing like you describe.

Some other advice is get some counseling too. I was very depressed after I got my PM...it was shock to have to get one. I was in pain and cried non-stop. I went to counseling and helped a great deal. Counselor made me realize that the pain would go away, and that I was lucky to live in time when technology could help me feel better once I got over the discomfort. But you sound like there are issues with placement and the PM itself. Please find another Dr. You may need meds plus the PM...I have to take meds to keep heart rate somewhat nornal.

Good luck!!!

Theresa

Hi michele susan.

by Gellia2 - 2007-12-25 09:12:50

Please don't give up! If your doctors have checked out your pacemaker completely and all is well, maybe your shoulder has frozen on you. It's an EXTREMELY painful condition that can come from any type injury including surgery.
If you can take NSAID's, like Ibuprofen (Advil), try that and ice your shoulder. I had this very painful condition and it took over a year for it to go away with physical therapy three times weekly (it REALLY helped - athough hurt like crazy), Ibuprofen and icing.
If you would like more information about this, just send me a note in my mailbox. I check in a few times a day.
If that is what it is, just know that it WILL go away. It may hurt badly in the meantime though.
Best to you,
Gellia

Be specific

by dward - 2007-12-25 12:12:29

In addition to the above advice, I would also say you should write down what EXACTLY you are feeling. In your description, you say you have chest pain, then you say "passing out chest pain"... Are you infact - passing out - or is this how you are describing the pain?
If the pain is in your arm too and you have been THOROUGHLY CHECKED, then yes, it could be frozen shoulder, which can be very painful.
I may be totally off base with this, but it does appear you are in panick mode. This is not good for your overall hhealth - at all. Indeed, if you are not getting answers from your Doc, then seek out another, but be specific in hwhat pain you have, when you have it, where you have it, etc.
In my experience, right after my PM - I thought EVERY pain I got was somehow related to the PM...
I hope you are soon feeling better!

...do some reasearch....

by Suzzy - 2007-12-27 09:12:40

and get a new Doctor. Do not know where you are located but; if you leave in the Edmonton, AB area....Uof A Hospital has a awesome pm clinic, and Cardiologists....are awesome as well.

All the best....

to gellia2

by michele susan - 2008-02-24 02:02:38

hi Michele susan here please write me back and explain what they did for you in physical therpy , i dont have insurence right now ,so maybe i can do the therpy at home by myself to get some relief .Thanks for your help and support from everyone Iamso greatful to all of yous.

Hello

by Hot Heart - 2009-04-08 04:04:02

I was just looking through old messages on here and wondered how you are doing now, I havnt got any aswers for you unfortunately, but do send you good wishes and hope you are feeling better.

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In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.