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Quackologist Strikes Again

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Posted 7/8/2009 3:10 AM (GMT 0)
I have been very low key lately as some have noticed. I was in Arizona  for work and back at the school for Summer Quarter this week. Things have not been good. I have developed sharp hot feeling pains in the area where my SCS transmitter was implanted. I was told that it could take time for the healing and watch it. The SCS still works. It has gotten to the point that I could not drive, sit, stand. lay and I have been miserable. There is a small white rubbery thing hanging out of my incision (I believe it is a nerve). The pain gets very intense. I was so busy yesterday that I forgot to call the Dr. So I stayed home from work today and was going to call the Dr. Now which one, the Quackologist PMS, the surgeon or my PCP. I opted for the PCP. He is out all week but i made an appointment for next week. The PMS released me to the PCP so I thought that would be the right step. Next, I called the surgeon as I have a follow-up in two weeks and thought I would see if we could move that up. His nurse advised me I did not have an appointment with him as it was cancelled. I asked who cancelled it and she said the PMS. She said that was strange but advised me to go see the PMS. At this point I lost my composure and spent the rest of the day in bed trying to deal with the pain. I have not seen my PCP since I was released from my PMS so I have very limited pain meds and will be out before my appointment next week.

It appears that I will have to make a trip to the ER as I don't see any other options. I refuse to go back to the Quackologist at this point. I will fly to some distant land and find a witch doctor with chicken feet hanging around his neck before I go back to that guy. My frustration is showing a little. I wake up at night screaming as the sharp pains hit. My wife is fed up (with doctors) as she says she needs sleep. I am noticing the pain that this causes the family. I am due to hit the road for the next several days as well as a busy family schedule for the next two weeks. My daughter is showing her horse starting Sunday for 4 or 5 days at the fair. 9Many diffeent events) She has made the state 4H team and this is her last year so it is important. My son just received word he flys out next weekend headed for Iraq. We have known that was coming but did not know the exact date. In the mean time, some of you know the demands of work and I won't go into that. We all face these trying times and we know that there is not much people can do for us and we just have to go through it. I don't usually sound this negative so that shows where I am at.     

Posted 7/8/2009 3:19 AM (GMT 0)
Oh how awful!

I thought I had it bad. I do have a hot pain by my battery pack as well. They tested me, but it doesn't ever go more than 3 degrees above the rest of my body's temperature (of course, they test me with no clothing covering the pack, so I'm not sure how fair the trial is). It sounds like you have something really serious. If you lived in Chicago, I'd recommend my PM -- he could probably fix you up. Since that's not possible, definitely get it checked out. If you're right about the nerve sticking out, there's probably more surgery in store for you. If you somehow scrape by with a less serious diagnosis, I would suggest either Voltaren gel or getting a topical compounded gel with Ketamine 10%plo. I have that mixed up (they pulled me off the Voltaren until the Synthroid kicks in & my hair grows back -- mine is at C1, so the Voltaren was in my hair; it doesn't usually make your hair fall out) & it works wonders. Gets rid of the heat, the pain, everything. I reapply it 4-6x/day.

Feel better,
Frances
Posted 7/8/2009 3:27 AM (GMT 0)

Personally after all the phone calls to the various drs, the witch dr is sounding better and better. Good grief, what in the world is going on in these drs offices and why in the heck did the PM dr cancel your appt with the surgeon. Talk about the right hand not knowing what the left hand is doing. No wonder you are fed up, then to have this incredible pain on top of it. ER may be the place to head to since everything so far has been a bust.

Well, I am not really sure what to even post here, I am still sorting out the dr thing,lol. And these are the people we are suppose to have confidence in, yeah right.

I am sorry all of this is going on with you FJ. Wish I could do something to help you out. I lost my magic wand a while back and I have not been able to find that thing since. I think one of the dogs ate it.

Let us know what direction you plan to go with this thing hanging out of your incision.  

 

Posted 7/8/2009 3:28 AM (GMT 0)
PS- I think you are very wise not to go back to the Quack who put you in this position. I so wish I could do more, but I will say a prayer for you to be completely healed.

gb,
Frances
Posted 7/8/2009 3:59 AM (GMT 0)
fatherjohn,
I am sorry for the pain you are going thru. You are in my prayers and hugs to you. Don't give up.
cshelp
Posted 7/8/2009 4:08 AM (GMT 0)

Frances, to top it off tonight, I am recharging my SCS. I can't hardly stand the recharger on the incision site. I have placed a soft cloth between the recharger and the skin to try and make it bearable.  I have been running my SCS almost 24 hours a day. With no pain meds (just 1 7.5/500 at night) I have no options. I know my PCP will address that as soon as he gets back as he does not agree with the Quackologist but we signed the pain contract. Now that that is nolonger in effect, the PCP can step back in.

Susie, I could use the magic wand. Maybe I can follow your dog around and see what is left behind. You might remember that I am not able to get into another PMS as I am on WC from another state and Drs in Oregon won't take out of state WC patients. Even my PCP told me that if I wan't already established with him, he would not be able to take me. I live in a small community of 15,000 and they are building a medical school here. I am going to get on the waiting list and see if be a training aid. I don't have options at this point for doctors.

Posted 7/8/2009 4:39 AM (GMT 0)
Fatherjohn,
I have been trying to read posts today and the site keeps crashing on me. I'm crossing my fingers on this response getting through, but yours was the first post I wanted to read.

Nix the quackologist. Absolutely. But having something that you think is a nerve hanging out - I truy think you should go to the E.R. and let someone take a look. Maybe they can also give you some better connections for doctors who might take the W.C. Is there any way that your regular insurance could cover this? It sounds like the surgeon is needed, but I'd be concerned that there is more damage being done by waiting. Please, do something soon. Put work aside for this. Please.

I'll be thinking about you and hoping you find some help. I'm going to close and hope I can get this to post before I crash again!

PaLady
Posted 7/8/2009 4:47 AM (GMT 0)
Fatherjohn:

I AM VERY CONCERNED about YOU!  I won't go into the whole story right now as I know you are in terrible pain, but after one of my battery changes I got a very bad infection, and had drainage coming out of my incision that was initially clear, and then it started to turn cloudy and puss filled.  I had a spot that we kept thinking was puss but we could not wipe it completely away, and after a day or two we realized that it was the generator of the SCS!  It is encased in white plastic which we did not know!  Everytime I ever saw one, it was titanium metal, but they encase the unit in plastic.

I'm so sorry for all that you have been through - I can tell you are in terrible, terrible pain, and I'm just so worried about you.  Please, please, have someone take a look at you.  I'm sorry if I sound pushy, but I tried to just deal with it myself as my doctor is 2 1/2 hrs drive one way, and by the time I went to see him, he had no alternative but to take the SCS out completely and I had to wait until I was free from infection for 6 months before they would put it back in.

Please let us know how you are doing when you can.

Lorie 

Posted 7/8/2009 4:53 AM (GMT 0)
John,
If I remember correctly, you have a Boston Scientific model. If that's the case, please call your rep & ask them to overnight you one of the old-fashioned belts (sorry I can't find mine or I'd offer to send it to you). They used to make the belts without the hole in the back. It does not charge as well, but they were 100% more comfortable. I think it is worth a try. They will probably protest, but it won't hurt the device in any way, shape or form & they are pretty good with customer service. Tell them that something is wrong with your incision site & you need the extra protection.

I am wondering whether it is possible for you to get in to a dermatologist. I had problems with my scar becoming keloid after surgery. It sounds like you probably have a neuroma, but I'm not a doctor & haven't even seen it -- it's probably just wishful thinking on my part, but I'm hoping for the best for you. If it is a keloid, you can get subcutaneous steroid shots that will make the bump go down & make the pain go away. It was pretty cheap -- I paid 100% to a pricey dermatologist & it cost about $50-60 total for 2 visits with shots (she didn't charge the second time). You should have a scan before doing that to make sure the leads & cords are in the right place & haven't migrated too close to the skin, but I'm told that typically they are implanted 2cm beneath the skin so that is plenty of room for a subcutaneous shot (it's like the tB testing, if you've ever had that done, just goes barely under your skin). My dermatologist also gave me Clobex - a super-potent topical steroid cream. It is not safe for long term use, but I got it for the first 3-4 months post-op & it helped with pain, swelling, discoloration & that horrid burning sensation.

Gosh, I just feel so badly for you. :( Take care of yourself.

peace & prayers,
Frances
Posted 7/8/2009 5:00 AM (GMT 0)
FJ after reading BlueJets post I would be scared *%#*^%@@ and get ahold of someone ASAP. Does not sound good.
Posted 7/8/2009 6:12 AM (GMT 0)
Fatherjohn if I knew of a witch doctor I would sing both you and me up. I'm still trying to FIRE my Internest Doctor I see him tomorrow for my pain and hopefully talk with him about getting my scheduled for a woman MD that actually knows how to treat people. I can't wait.

HARA - in pain and pissed off at the management of her health care.

Posted 7/8/2009 6:53 AM (GMT 0)
I have finished charging my SCS and now have an ice pack on trying to put the fire out that seems to be burning. The thing hanging out is probably a material they used to stitch up the muscles inside the incision and the end is just hanging out. If true, it should disolve. I will call Boston Scientific in the morning. I am also going to call my PCP office in the morning and ask if there is another Dr. that can see me and if not advise them I will be going to the ER. I did some checking with someone who is an office manager at a Dr. office in another state and was advised to turn the Quackoloigist into the State Medical Board. I was told that it is part of the billing to be seen by the surgeon for 2 post op visits. To have the PMS cancel my appointment that is part of the care that is expexted should be reported.  I will check out the dermatoligist as well. I know that you all know that you are amazed at how lousy you can feel when you think the worst is over and you are supposed to be getting better.  
Posted 7/8/2009 6:56 AM (GMT 0)
What if we started a Donald Trump style reality show with doctors as the "contestants". Wouldn't it be great to give them all these tasks involving treating people and then get to say YOU"RE FIRED to them one at a time! Wouldn't it be great to just walk into the doctors who have treated us poorly and just FIRE them with abandon. Without worrying about whether we had a doctor to replace them because we of course would know there were plenty of great doctors available to us in our local area???

Just fantasizing.

PaLady

FJ - We were posting at the same time. Glad you're going to get some help ASAP. Whatever is hanging out shouldn't be, and I'm with Susie and bluejet on this! Hugs!!
Posted 7/8/2009 9:39 AM (GMT 0)
If it makes you feel any better, the IPG pocket for a Boston Scientific implant can't be more than 2cm below the skin and still charge. Even in skinny people, it's well above the range for any muscles or nerves to pop out. It's more likely that it's just some fat or dead skin tissue. Of course, "just" is relative when something is hanging out of an incision, huh?

Also, never discount a doctor with chicken feet hanging around his neck.. I went in for an appointment not too long ago and my (very male) doctor was wearing this outfit:

Instead of the face mask, he did his own make-up which was FAR worse than the mask ever dreamed of being! He made Tammy Faye Baker's make-up back in the day look tame!

When I inquired about his mode of dress for the day, he explained that he had a "gig" right after my appointment and decided to get dressed before I arrived, because he knew I'd get a kick out of it - or at least understand the unconventional dress. I stopped short of asking him exactly what constitutes a "gig" in his off hours. smhair tongue
Posted 7/8/2009 2:17 PM (GMT 0)
Look and see what hospitals your surgeon has priliges at and go to that ER and have them call him in
asap, just my advise, otherwise I agree with PALady just go to the ER...
and PAlady I have a few Doctors that sure wish I could put on "Your Fired!"" lists,...
Lots and lots of Prayers and well wishes to you FatherJohn...
very very soft gentle hugz.....
((((((((((((((((((((((((((((FatherJohn)))))))))))))))))))))))))))))))))))
Posted 7/8/2009 5:35 PM (GMT 0)
Dear FatherJohn,



Good Afternoon *huggs* It is good to hear from you. Sounds like the family is BUSY! these next few weeks . I hate that the SCS implant procedure was handled so carelessly and now! because of their lac of care you have to go through MAJOR life changes while struggling with pain. I'm so disspointed in your doctor. And you know? That witch doctor? Do they accept Insurance? I might wanna give it a try too! .... Uuugh, the ER. confused 20hrs of germ goodness. Gosh I hope they can help thou.



*huggs*

dani
Posted 7/8/2009 5:45 PM (GMT 0)
You can put them on my You're Fired list....LOL

HARA

Posted 7/8/2009 7:17 PM (GMT 0)
Fatherjohn.....

I am so sorry you are going through this nightmare. I wish I could just shake my head and say "I just can't believe this"........but as the owner of both a Advanced Bionic Stimulator and a Medtronic Intrathercal Pump I can say with experience bad things happen to good patients. There are a lot of top tier Pain Medication doctors out there that are more worried about what they are going to have for lunch, their golf game, or God only knows what - except their patients. My first two doctors were horrific - they talked a good line, answered all of my questions with appeared to be well documents information. However, when it came to the actually surgery, patient care, and follow-up they were either MIA or the answers and solutions were so full of crap I am lucky they did not kill me. The trick is surviving  this calamity and locating a caring and well trained  PM that is WILLING to accept you as a patient. Does the Oregon WC Bureau have a list of approved SCS doctors? Could your PCP refer you to someone on the list? When I went in search of a new doctor, I called my Advanced Bionic Representative.  Since many of the reps actually scrub for surgery, they have a fairly good idea which doctors are committed to practicing good medicine. I also contacted the Ombudsman for the hospital in which I had the first surgery. They helped me identify qualified pump doctors in the immediate area. By working with the pump manufacturers rep and ombudsman it was able to locate a fantastic PM doctor of loads of pump experience. I have to honest, switching PM pump doctors can be very hard. Many doctors refuse to accept pump patients where a different doctor implanted the pump. My new doctor is a miracle worker. He has combinations of medication that the old one never thought about. I can always get in the office within 24hrs. if there is a problem. So they are not all incompetent - but there is a great deal of money to be made implanting there devices - implanting is just the start of a long relationship.

One thing someone did remind me of was that PM is a rapidly changing field. The majority are anesthesiologists, but not all of then have completed the advanced training necessary to manage the newer surgical interventions.  Some PM's are doing their own surgery will little or no surgical training. Good luck and my prays are with you.

Posted 7/8/2009 7:59 PM (GMT 0)
I believe that frivolous lawsuits are one major thing that got us started down the wrong direction where pricing goes.

But I also believe doctors need to be responsible.

GET A HARD COPY OF EVERYTHING AND SUE THE PANTS OFF THIS GUY.

DON'T SIGN ANY WAIVERS RELEASING HIM OR THE HOSPITAL.

START LOOKING FOR A REALLY GOOD ATTORNEY QUICKLY.

Talk about 'CHRONIC PAIN'!

Best luck to you, FJ.
I really really really hope thing turn out extremely well in your favor.
Posted 7/8/2009 8:53 PM (GMT 0)
Fatherjohn! Your post made me shudder -- more than shudder! The fact that you now have something hanging out of your incision is HORRIFYING! I'm glad that you are planning on going to the ER (if you haven't already) because someone definitely needs to take a look at this! I don't blame you for not wanting to go back to the PMS -- I wouldn't either, after what he did to you!! But canceling your appointment with the surgeon? That is just ridiculous. Inhumane! What would ever compel him to do something like that?! You just had surgery, for goodness sake, it is usually required that you follow-up with the surgeon post-op, to the point that they will track you down if you haven't! I really hope that everything is okay & this pain isn't permanent! Please let us know what happens! You'll definitely be in my thoughts & prayers! Enjoy the time you have left with your son before his deployment, if you can. You must be both proud & nervous! ((((((((((((fatherjohn))))))))))))))).

hugs,
Skeye
Posted 7/8/2009 9:07 PM (GMT 0)
I just tooka short break here at work and don't have much time. I had an interesting call this morning from the Quackologist's office. They called to remind me that I had an appointment with a Psy. at 8 am tomorrow. I advised them that for some reason the PMS cancelled my appointment with the surgeon and released me to my PCP. The individual then stated she was placing me on hold. She came back and said that the Psy. appoint was also canceled. I then told her I was not happy with what was going on and she put me back on hold. When she came bac she appologized for calling me and hung up. I will try and rerspond after getting home tonight after getting off work. My travel plans have changed as I am leaving at 4 am in the morning and will get back at 1 to 2 am on Friday. I can't take pain meds while on the road so I will wait until Friday to get this straightened out. I was asked to spend Friday and return home Saturday so i could attend a big event Friday night and I told them I was not able at this point to extend any further.
Posted 7/8/2009 9:38 PM (GMT 0)
Fatherjohn:

I honestly don't know how you keep pushing yourself the way you do, I'm really concerned for you.

Please let us know how you are doing when you can.

Lorie
Posted 7/8/2009 10:18 PM (GMT 0)
fatherjohn
I do hope you will be alright on your trip! Please be careful, I have read all the post, and you certainly are in a terrible position! What can I say that all the others haven't already said? Take care my friend! I wish you well, and hope you have a very safe trip!
Peace be with You!
White Beard
Posted 7/8/2009 11:59 PM (GMT 0)
FatherJohn
Prayers my friend and lots of soft hugz...
(((((((((((((((((((((((((FatherJohn)))))))))))))))))))))))))))))))))))))
Posted 7/9/2009 1:04 AM (GMT 0)
John,
I definitely think a call/letter to the State Medical Board is in order. But first you need to figure out how to get that wound taken care of. Please do go to the hospital to at least rule out anything serious (infection, burns, or such). If that's okay, then I will be wishing the best for you on your trip & hoping that you can get in to see a doctor (or maybe more than one) as soon as you get back. I would think that if you tell the surgeon's office that you have a serious problem with the incision site that they ought to be able to fit you in for 5 minutes so the doc or a PA could take a look at it. Surgeons tend to be pretty careful about those kinds of things so they don't get sued. Tell them something is horribly wrong and that you don't want to end up dead or with a massive infection or anything (yes, I know perhaps it's a bit overly dramatic, but who cares whether there's actually something horrible or not, they ought to check you out & sometimes that's the only way to get them to take you seriously :)

For your own peace of mind, I do want to say that really awful complications like that almost never happen. It is far more likely that is is something really painful, but not actually dangerous. Still, though, the surgeon needs to get back involved in your case. When you meet with him, you can explain the situation with your PM & ask him if he will continue caring for you until you can find a new PM who takes your insurance. Take care of yourself, my friend.

blessings,
Frances
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