Fatherjohn - how are you doing with the SCS?

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PAlady
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   Posted 6/27/2009 9:53 PM (GMT -7)   
Fatherjohn,
I looked for your update thread and saw it was locked because of length, so I thought I'd start a new one for you, and return the favor!

How are things working with the SCS and doctor issues? I don't know if you're still in Arizona, but let us know how the trip was when you get a chance. I think I remember you were also going to take a little R&R time with your wife.

I sure hope the SCS is giving you what you wanted! yeah

Hugs,

PaLady

fatherjohn
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Date Joined Feb 2009
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   Posted 6/27/2009 10:13 PM (GMT -7)   
PAlady, now you want to get me with tears in my eyes. I am still in Arizona and I have been trying to drop in from time to time but not as much as I should. I had a wonderful surprise and enjoyable time today. I will start a new thread about that later. The back has not healed as much as I thought it would. You know when your PMS tells you you don't need pain meds for a simple thing like a SCS IThe mplant what are you supposed to expect. I have been pushing it a little harder than I should (not new for me). The SCS is working but my back gets tired easily and then I start getting cramps. I have sneezed too many times and it is starting to feel like I am ripping things apart but I know it is just due to the fact things are not healed. I run the SCS all day most of the time and keep adjusting it so the feeling does not get monotonous. It really does help distract from the nerve pain which is why we decided to go ahead with it. I just want to heal faster than I am. What is up with that anyway? My wife does not like it when I say I am feeling old. I think that means that she is married to an old man and that she could end up being an old lady. She has a long way to go to get to that stage. Although I kid her she can wear a red hat and purple clothes. I will be home on Tuesday and will hopefully be back on line more. I did just get a call and one of my teacher's adult daughter was found dead in her car apparently from a drug overdose. I will hopefully get more information tomorrow. Thanks for starting the thread.

Mrs. Dani
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   Posted 6/28/2009 12:25 AM (GMT -7)   
     Dear Father John,
 
       I hope I am not intruding.  I don't know anything about SCS except what ive learned last few weeks from you. But I do hope the scarring and discomfort / pain eases. *huggs*
 
       It is kinda cool thou to think your in desert too right now. I love the sunsets in High Altitude deserts, dont you? I really enojoyed Arizona about 1 hour before sun set and early evening. But now the drivers there....   I'm not in to conspiracys but.. whats with the tiny narrow streets? And just WHO tought those people how to drive? *sigh*
 
      As it is when someone has passed, I am sure you are going to have to delgate things quickly. I just hope you dont over do it. I have noticed your compassion knows no bounds there is no doubt about it. You will go to any legenths to help another soul in need.  But try to take it easy if you can. Gosh, what sudden awfull news. In my heart and prayers.
 
 
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


edt
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   Posted 6/28/2009 10:38 AM (GMT -7)   

PALady,

I had the honor of meeting FatherJohn and his beautiful wife yesterday for lunch.  I will tell you he is quite handsome, he has the kindest eyes and he is even warmer (hard to imagine huh) in person then on postings!  AND HE IS DEFINITELY NOT OLD!!  SOOOOOO FJ no more old man talk okay?

XXOO
Patti


PAlady
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Date Joined Nov 2007
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   Posted 6/28/2009 11:10 AM (GMT -7)   
Patti-
I AM SO JEALOUS! Ok, that's not a very spiritual emotion is it? LOL You will have to tell us many things (I hope a couple of other secrets) over time, but seriously, I'm thrilled you both got to meet. I so wish we all could meet eachother!

Fatherjohn,
Ok, your secret is out now. You are not old, but I sure understand feeling old! about the SCS - someone here on another thread (I can't remember which one) mentioned wearing some kind of a support wrap or something like that while they were healing from the SCS or pump implant. I was thinking maybe it would help to hold things more steady. I hope someone can add specifics to this as I don't know anything about it.

Are you saying you still don't have any BT meds??? I thought maybe you got some by now. Oh, that doctor of yours! GRRRR......

And I am so, so sorry about the teacher's child. How very tragic. Tragic. There are no words. And here with all you do to prevent such things, and I'm sure all that teacher does, even more of a heartbreak. I wish all of you strength to go through this.

((((((((((((Fatherjohn))))))))))))

PaLady

fatherjohn
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Date Joined Feb 2009
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   Posted 6/28/2009 6:31 PM (GMT -7)   

PAlady, the death of this young woman was sad. I had just talked to her father about getting her into one of our programs for women but she refused to go. It had been a long hard road for her family as she refused to give up the drugs that consumed her life. The figure that is given to day is that there are over 200 million drug addicts in the world and at least 20 million of them are in the US.

As per the SCS, it is true that my PMS refused to give me any break through meds. He told me that he would turn it over to my PCP. I won't see him until sometime after I get back and make a new appointment. There is no doubt that he will give me BT meds. He was a little upset that the PMS was under medicating me. He knows that I am not one to want to use many meds but there are times when it is necessary. I took my wife and showed her around Phoenix today and then I took her on one of her favorite hobbies, shopping. I was able to keep up for several hours but then the pain gets too difficult to deal with in the back. It appears to be connected to the area where I tore the leads loose. I have an appointment with the surgeon after we get back and I will see what he thinks.

As per Patti's comments. After the way she described me, I had to go find a mirror and double check and make sure it was me she was talking about. I will agree that my wife is beautiful and much younger than me (at least the way I feel).     


edt
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Date Joined Dec 2008
Total Posts : 773
   Posted 6/28/2009 9:21 PM (GMT -7)   

Yes, FJ it was YOU I was talking about!!  I'm so glad you got to do some sightseeing today and I know that to be able to shop for a little while made you happy too! 

Today was a rather warm one here in Phoenix, we are heading into Monsoon Season, 112 degree temperature with 45% humidity and bright bright SUNSHINE...it was a really really hot....I ran (more like hobbled) for my pool as soon as I got back from a short outing lol.

Rest up and feel better!

XXOO
Patti

 


Scarred_for_life
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Date Joined Jul 2008
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   Posted 6/29/2009 3:06 AM (GMT -7)   
Father John; I have only one question for you....how did you get so lucky to get the SCS?? Did you have to go through the psych eval?

I'm probably looking at a year before I can even realisticly say that I MIGHT be eligible for it. Of course I'm not real happy about the whole thing, but what can I do but jump through more hoops and hope for the best. I really hope that WC does the procedure after this or Hubby and I are thinking about going through our private ins and see if they will pay for it then.....sue the pants off of WC!!

The SCS is kinda of a sore subject with me (can ya tell?) I just don't understand why we as patients have to go through so many hoops just to get the relief that we need. It doesn't make any sense.

Okay, off my band wagon LOL

Hugssss
Scarred
What doesn't kill us only makes us fight back harder! :P


straydog
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Date Joined Feb 2003
Total Posts : 13470
   Posted 6/29/2009 3:46 PM (GMT -7)   
FJ I am so glad to hear the SCS is giving you some relief. That sorry rat of a dr of yours should be shot for not giving BT meds, the idiot. Hope you can get some soon from your PCP.

The wrap PALady was talking about is a binder for people getting the pain pump implanted. I was not offered one and never heard of it until it was talked about on the Pumpsters site, had no clue what it was.

Here is to BT meds from the PCP and the SCS keeps helping you.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


fatherjohn
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Date Joined Feb 2009
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   Posted 6/29/2009 7:25 PM (GMT -7)   

Scarred (But Being Healed), I will try and give a short version of how I received the SCS unit. Of course I was injured 11 years ago and did not have surgery until 1 1/2 years ago. I was told to wait until I could not stand it any longer. My WC adjuster is great to deal with and I have been told by her that I use less medications and have cost them less than most of their clients. That has probably changed now. I am over $400,000 in the last 1 1/2 years. After the failed multi level fusion, my surgeon stated he did all he could. He did more than he planned to do during the surgery and said all that he could do is the next level up which will come some day. I went back to my PCP after my surgeon released me. My PCP is a wonderful man and we share respect for each other. He made a referral to a pain clinic (the best he said) but they would not see me as my WC is from out of state. I finally found the guy who just moved in and was building a patient base and was connected with my surgeon. They tried a tens uniy but it did not help. They tried more PT but it did not help. He set me up for the trial and said that I would have to have a psy eval. When I returned shortly before the trial he asked if I had the Psy eval and I said no as they did not call me and I was not given a name. They set up an eval but the PMS said that if my WC did not require one, then he would bypass it. I called my WC and they said bypass. So no Psy eval. After the trial, I was finally contacted for a Psy Eval. but I told them it was not being required. After the trial, the SCS implant was set according to my PMS vacation schedule. Then when he refused me meds after surgery, he said he was sending me to a Psy. Then on the day that he said he was sending me back to my PCP, I received a call for another Psy. appointment. I will calll as soon as I am back and cancel as I will defer to my PCP who is not happy with the care I have had and was concerned who was going to do the Psy. Eval and follow-up. My PCP is only concerned that he has never dealt with a SCS before but I can teach him all he needs to know. Just Kidding, I don't have that much pride. I am sure that Boston Scientific will come to his office if necessary. It is not the usual path but then I had to deal with a PMS that was not that caring either. I am choosing to think that he was trying to get his patient base set up and ran me through as fast as possible.

I found out from his nuese that he did not show up until the surgery was half over and made jokes in the operating room about wanting to do the surgery himself and asked the surgeon if he could take over. I don't think he was joking. I am glad I had a good surgeon. This probably won't help but that is how it happened. I hope you get your ordeal straightened out soon. I can tell you that Boston Scientific told me the unit cost a little over $30,000. The trail unit was about $3500 plus the doctors and surgery charges. I just received a bill for the operating room and supplies that was $70,000. Then there were 3 doctors in the room and I know they all got paid.   


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 6/29/2009 7:33 PM (GMT -7)   
Susie, I am going to have to get in to my PCP as soon as I get home. I am also going to have to call my surgeon as I am in more pain than is expected. i know it has only been 3 weeks but I am getting sharp burning pains in my back in the area where we think I pulled the wires loose. The pains are coming more often and last longer. I took my wife to Tucson today and by the time we got back I was gripping the steering wheel and pulling myself forward as the pain was unbearable. We had not eaten all day so I took her to eat and could not pick my feet up or it cause the pain to increase. It feels like a hot kknife being jabbed in my back. I am back at the hotel and I can find relief only by laying down. I am trying hard to hold off on my meds as I have nothing for BT right now. I know my PCP will address it immediately when I am home. I will be flying home tomorrow and I will call and get an appointment for Wed.  
 
I don't have very good thoughts about my EX PMS right now.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 6/30/2009 12:16 AM (GMT -7)   
Fatherjohn,
I just had to comment my mouth dropped open when I read the part about your PMS wanting to take over the surgery!!! smhair

I hope you don't have to involve him in any repairs you may need; that it can be done with the surgeon and rep and if needed your PCP. And this craziness about the psych eval??? shakehead

Glad you will be getting away from that PMS! And I hope whatever happened with the leads can be fixed easily. But please take it easy. (I wouldn't even begin to suggest you might have been pushing it too much....not when you got to meet Patti! smilewinkgrin

PaLady :-)

fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 6/30/2009 12:34 AM (GMT -7)   
PAlady, no DR basking now. Well, just a little. I have had a difficult evening and I am trying every trick in the book to try and keep the pain down. The sharp hot piercing pain is in the area of the incision of the transmitter. When it starts flaring, I just grab for something. We have discussed going to the ER but I am not sure what they could do. I am hoping that it worn't be like this tomorrow as I get on the plane. One more day and then being home will always make things better. I will call my PCP before the flight and see when I can get in to him.  I really have been taking it easy, well eaisier than normal. Now what was normal. I have my SCS turned way up just hoping it makes a difference even though it is not intended to have any effect on this kind of pain. We will see how the night goes.

PAlady
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Date Joined Nov 2007
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   Posted 6/30/2009 12:42 AM (GMT -7)   
(((((((((Fatherjohn))))))))))

PaLady

edt
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Date Joined Dec 2008
Total Posts : 773
   Posted 6/30/2009 6:23 AM (GMT -7)   

(((((((((((((((((((((((((((((((((FatherJohn))))))))))))))))))))))))

I hope you feel better today!

XXOO
Patti


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 6/30/2009 7:43 AM (GMT -7)   
Thanks Patti, it was a very short night. It has started yet this morning and I hope it doesn't. I was just informed our flight was cancelled. They have us on a flight later this afternoon. There must be a reason we were not to fly out this morning. I hope your week goes well and that work for your husband continues to grow.

skeye
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Date Joined Mar 2008
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   Posted 6/30/2009 6:07 PM (GMT -7)   
Hi Fatherjohn,

I hope that you made it home safe & sound! I'm glad to hear that your SCS is providing you with some relief, but I'm still concerned for you about that incision! I hope that you didn't do anything too serious when you started to tear those leads! Hopefully once scar tissue forms & supports the leads, that searing pain will stop (although that probably seems like a long time from now). I'm sure that the surgeon will be able to sort things out for you in the mean time.

I'm so glad that you got rid of your PMS. Gosh, after what he did to you during & after your surgery! The guy should never be allowed to practice medicine again (in my opinion, at least), and certainly not pain management!! I hope that you'll be able to get in with your PCP soon & start getting some real relief! I rather have a doc who is somewhat uneducated about my condition (or implant, in your case), yet who cares for me & will work with me & help me find relief, than some doc who is certified in PM, yet is extremely arrogant & doesn't give a darn about his patients (and down right dangerous). This exact scenario is actual how I ended up with the doc taking care of me & my pain today (although my former PMS wasn't anywhere near as reckless as yours, just arrogant, uncaring, etc, etc, etc).

I hope that you are feeling relaxed after your vacation, and ready to start afresh! I am very sorry to hear about your friend's daughter, though. What a tragic situation! My condolences.

hugs,
Skeye

fatherjohn
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Date Joined Feb 2009
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   Posted 7/1/2009 12:29 AM (GMT -7)   
Patti & PAlady, thanks for the huggs.
 
Skeye, I made it home finally. It was an ordeal but we are home. I have had to take my pain meds earlier to deal with the pain from the incision that comes onif I turn, stretch, lay wrong and sometimes if I just ly still. One more of the Dr to deal with. I think they get paid money to help us feel better. I will try that approach this week.

PAlady
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Date Joined Nov 2007
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   Posted 7/1/2009 12:55 AM (GMT -7)   
Fatherjohn,
I still wonder if that binder Susie mentioned that's used for the pump implants might be of any use for you to hold things in place. Course this is nothing but a shot in the dark as I know nothing about the specifics of the SCS other than what I've read on this board.

I sure hope you can get this fixed and get out of this rut in your road to recovery!

PaLady

anice
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Date Joined Apr 2009
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   Posted 7/1/2009 9:27 AM (GMT -7)   
FatherJohn, I am glad you are back. I know it was nice to get away with your wife. I just wish that you had felt better so you could have enjoyed it more. I do hope that you are feeling better now. Hopefully you will be able to get in to see the doctor and get some meds that will help provide you with much needed relief. You are always so busy. I wish that you could slow down just a little...But we all know that won't happen!!! Keep us posted on how you are feeling. We all care about you so much.
anice

fatherjohn
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Date Joined Feb 2009
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   Posted 7/1/2009 6:02 PM (GMT -7)   
Here is my report of the day for my wonderful HW family. Last night was not a good one. I did not get home until 11 as my flight was cancelled and then I had to find a later flight. By the time I realized it it was after 12 and I had not taken my meds yet. Only 3 or 4 hours late. I know it was my own fault. My loving wife finally said that we had to go to work this morning and she needed some sleep. I honored her and I finally went to bed at 4 and got up at 7. Sleep is over rated. It was a busy day as I had to meet with everybody that knew where my office was. I went to inspect several areas of the center and I wasn't watching as a door closed on me and guess where the door handle hit me. Right on the incision where the sending until was implanted. That is the same location that has felt like a hot kknife going through me. I could not leave as I had a 2 hour meeting set with all our teachers. You can imagine how I feel right now. So now you know how I am doing. I need to spend some time catching up with my friends here. This day will soon be over and we can start another.  I know that there are many others dealing with more important things so I will turn my attention to some of you.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 7/1/2009 6:53 PM (GMT -7)   
Fatherjohn,
It just seems like this SCS implant is jinxed or something! Or maybe you just need to stay home - or maybe wear a large barrel around to protect yourself! Maybe that's not such a bad idea? LOL

I do hope the door hitting you doesn't make anything worse. When do you next see your surgeon and PCP? Soon, I hope.

((((((((((Fatherjohn))))))))))

PaLady

fatherjohn
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Date Joined Feb 2009
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   Posted 7/1/2009 7:28 PM (GMT -7)   
PAlady, I was going to call today and see if I could get in but by the time I realized it, it was too late. My surgeon does not have Friday hours but I will try and get in the first of the week. Since my PCP is not acquainted with SCS units, I am not sure getting in to see him will do much. If by chance I get an opening tomorrow, I will head in. I have been doing some research and I know that there are times when a nerve is accidently sewn up with the closing of an incision. I am noy sure what could be causing this piercing pain.

Chartreux
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Date Joined Aug 2006
Total Posts : 9622
   Posted 7/1/2009 8:09 PM (GMT -7)   
FatherJOhn,
I'll hope you can get into the doctor asap..it'd help if you could lighten your work load some
as well, so try to take it easy while your still healing, we all need to follow that advise..
lots and lots of soft gentle hugz and prayers to help you get through this
weekend, with hopes that you get some low pain days...
Keep us posted when you can...
((((((((((((((((((((((((((((((((FatherJohn)))))))))))))))))))))))))))))))))))))))))
rest up okay....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 7/1/2009 8:42 PM (GMT -7)   
Thanks Char, I am going to try and be good. The emphasis is on try. I am frustrated but this is a busy time as we start classes on Monday and with being gone last week there is so much to be done. My son wants a day with me as well and I will make that a priority.
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