Update on PM Clinic

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LLPLUV
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Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 12:17 AM (GMT -7)   
After phone tag all day Thursday I finally reached the Patient Coordinator yesterday morning.  I had to come home after 2 hours of work, ran out of pain meds.  I called this person back and she answered!  My husband had spoken to her on Thursday and told her all about my pain in the butt doctors office and how the referral wasn't faxed for over 2 weeks. Which left me without medication.
 
Friday when I spoke to her she gave me an appointment for this morning at 7 am.  I have to be there 45 minutes early and have to go into Nashville but not a big deal I would drive to Alaska at this point.
 
I could only sleep until 2 am the kidneys are so painful right now it hurts to lay down, sit down or just about anything right now.  So I'm posting in a sleeping house without any lights now.  I have sat here and put all my records in date order.  By labs, surgical, office and Dx's.  Hopefully he can scan through them efficently. 
 
I wanted to thank everyone on Healing Well for giving advice which I used and for all the information I have received.  Since joining this site I have found a group of people who I can relate to.  I also want to thank White Beard you have helped me more than you will ever realize.  The information you sent me opened a new world up to me about my disease.
 
So thank you all
Laurie
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 4/3/2009 12:26 AM (GMT -7)   
Laurie,
I'm up in the wee hours and saw your post, and wanted to wish you well this morning! Let us know how it goes.

Hugs,

PaLady

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 12:44 AM (GMT -7)   

I will keep everyone informed when I get back.

I guess we both are having a bad night  confused

I hope you get some relief and find a bed


Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


LLPLUV
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Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 8:48 AM (GMT -7)   

Ok I just typed out a whole statement and it disappeared... turn

The doctor came into the room after studying my chart with all my records including blood work and scans going back 10 years.  He asked me what my pain felt like so I told him. That is hurt to breath, move, sleep and eat.

He looked at me and said he has only seen this one other time.  Its called Urological Reflex Sympathy Dysfunction.  He pulled my scan out and showed me over the years the damage my kidneys, bladder and uterers have been through.  All the inflammation, scarring and swelling.  I guess it never healed properly and caused nerve damage.  So know if I do anything pain receptors go on high alert even if they theres nothing wrong with them.

So he put me on Percocet 10/325 4 times a day, increased my Trazadone and told me to continue taking my celexa.  In two weeks I have my first of 3 Lumbar Nerve Blocks.  He doesn't know if they will even work with having this pain for over a year and a half.  But hes hoping for some relief.  He says this is permanent???  He told me I should of complained alot earlier.  I DID!!!!  But I guess I didn't have the right doctors.

So does anyone know anything about this syndrome?????  I still haven't even googled it yet...


Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/3/2009 10:00 AM (GMT -7)   
Sounds like you got a good pm doctor, you keep him and hopefully things with get a little
better, athough as for the injections they are not permanent and I'd question that, but they
might help, you never know it's kinda like playing black jack, they work really great for some,
they work pretty good for others or like me they don't do nadda... and I keep hopeing for the black jack...
Keep us posted
Lots of soft Hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/3/2009 10:38 AM (GMT -7)   
LLPLUV
I am glad you have seen your Pain Specialist, I do hope he can help you! Take care of yourself and of course Good Luck to You

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/3/2009 11:43 AM (GMT -7)   
LL,
Nerves are so challenging because they can die off but they can regenerate. And you don't know if either will happen, or will happen in the right way. The injections are worth a try, and sometimes it takes a series of them to know if they'll help even in the short run, but if they are able to isolate the nerve causing the worst pain there is a procedure called Radiofrequency, which sort of injures the nerve (some here have had it0 so it no longer sends pain signals. But they've got to be able to isolate the nerve pain first.

Nerves can also die after 1-2 years, which is probably what your doctor was referring to. Sad but true, it happens to many of us. If only many of us had the right treatment faster maybe, just maybe....but that's what we hae to grieve. You still have some hope, though, and it's great you've found a doc who identified it and can point you in the right direction. Don't give up!

PaLady

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/3/2009 2:54 PM (GMT -7)   
LL,
It sounds very similar to Reflex Sympathetic Dystrophy. I think if you do a search for that, you will find a lot of information that may help you. I dealt with RSD for a number of years, and it sounds like a related syndrome.
Basically, there are two "nervous systems" in your body, sympathetic and parasympathetic. This syndrome causes the sympathetic nervous system to interpret pain signals at high alert as your new PM described to you. It sounds like he knows his stuff, so I'm glad that you found him.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 4:18 PM (GMT -7)   
mrsm123 thats what he called it Reflex Sympathetic Dystrophy and used the other name. I believe its the same thing but who knows I'm not a doctor plus he talked alot couldn't get alot of what he said. He seems to know his stuff. The only rare thing he said was its effecting my Urological system. Kidneys all the way down to the bladder. No wonder I can sleep at night my husband has had two surgeries for a rotary cuff tear and he tosses and turns. It kills me. Its as if I breath wrong it hurts. The PM said when a normal person goes to the bathroom and pees its a normal sensation mine is all PAIN.

I'm going to research the procedure. He says its like an epidural someone also stated that earlier in the thread. I've had two of them so I think it will be a breeze. Plus he says he uses an IV sedation. YIPPEEEE! I just want to make sure I can go to work the day after. I hate missing work I like my job to much to miss time plus I like the money...
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/3/2009 4:32 PM (GMT -7)   
LL,
The newer name used is Chronic Regional Pain Syndrome (CRPS). It's what they used to call Reflex Sympathetic Dystrophy (RSD), although a lot of people still use that name.

PaLady

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/3/2009 4:37 PM (GMT -7)   
Wow everyone knows so much on this board. Will I get that smart the longer I visit here? I started to feel overwhelmed. I already have genetic issues that there is no cure for now I find this out. Complications from my Dx's. I also wondered why it takes seeing so many doctors to finally come to this after so LONG! Sometimes I feel most of us fall through the cracks in the system.
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/3/2009 6:17 PM (GMT -7)   
LL,
Yep, hang out with us and you'll soon be a genius! smilewinkgrin

Seriously, we all bring some knowledge to the table (you, too) and when it's combined it's kind of neat. It is a shame more doctors don't know all the nuances and state of the art treatments, etc., but some do. Sadly, it's kind of like having to kiss a lot of frogs... rolleyes

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/3/2009 7:21 PM (GMT -7)   
LLPLUV
We all learn together, allot of times, when I see someones post I will look it up in my nursing books, and my human anatomy books my drug books, on line, all the resourses I have available to me. some things I know and just do a quick refresh on, other things, it is a learning experience! and I enjoy learning about new things! When I went back to school after retiring from the Air Force, it was was such a thrill for me, I think it was the best time of my life! After my divorce is finalized I have been thinking about trying to go back to school again, I don't know if I can stand it or not, but????? Before when I was first put on disability I took art classes, sculpture and drawing, because those classes I could get up and walk around and I didn't have to sit in a chair for any long period of time, and the instructors knew about my back problems and they worked with me so I could do the required work! Now I have trouble doing sculpture and drawing because of the problems I have using my hands and my arms! So I had to give those activities up. But.... maybe ...just maybe... I could find a way to manage to take some classes and get through them! It might sound funny or crazy but I love learning new things! I find it facinating and amazing, learning about how the human body works, and all about disease and how it affects the human body! There are so many things I find interesting and learning about them,.... well it, ...kind of..... makes me feel young, like I am a little kid and there is so much stuff that I find awe-inspiring! I guess I am rambling! But that is one of the things I love about this forum I learn so much from everyone here! directly or indirectly!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 4/3/2009 8:26 PM (GMT -7)   

Hi LL,

Wow, so glad you got into the PM dr and I think its wonderful he is interested enough in you as a patient to try and help you. That alone has to give you some relief. As I was reading about the appt and all the first thing that hit my mind was RSD. I remember when RSD first hit the medical community back in the late 70's. No one knew what it was, no one knew how to treat it. Some drs said it did not exist and I remember ins companies not wanting to pay for any treatment because it was so new and known. It ws something usually a physical medicine dr attempted to treat. It was as complex then as it is now. I worked for attys that handled worker's comp cases. The RSD that showed up in our clients was after a surgery, or some type of trauma generally to a limb, hand or leg. One gal had knee surgery, no big deal, developed RSD in her leg and lost use of the leg. Saw many get it after having carpal tunnel surgery. The patients skin had changes in temperature that was documented, the skin would be very shiny and sometimes really red and they always had incredible pain. Drs,. used xrays called thermograms in dxing some of this.  I cannot imagine the type of pain you are having.

Lets hope the the ESI help with your problem. They have been used alot in RSD and CP. Some people have results from them and some don't. There really is no way of knowing if it will help or not unless you try them. Another ting he may consider is the R/F of the nerve, I had it both on my neck and back. It worked on me very well. They usually say maybe they work 6 months to a year, but some have had longer results. But, again like PA said, they have to idnetify the nrve causing so much problems. I do know you like working and do not like to miss-please talk to the dr or nurse on when you can return to work after having the ESI. You need to give your body a brake sometimes.

Ok, now that you have the pain dr on your side you can next work on finding you a good PCP and thumb your nose to that other dr....Susie

 



skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/3/2009 9:45 PM (GMT -7)   
Hi LL,

I'm so glad to hear about your appointment! It sounds like this doc is perfect for you & is really going to help you! RSD/CRPS is an interesting condition from the prospective that it can encompass a lot of different types of pain. I've actually had a couple of doctors bring up the name RDS/CRPS when speaking about my condition, as my condition appears to be similar to how RSD manifests. Just in a very odd location.

So glad this doctor was willing to help you! Hopefully your new treatment plan will successfully reduce your pain!

Skeye

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/4/2009 6:29 AM (GMT -7)   
PA your sor right "Sadly, it's kind of like having to kiss a lot of frogs..."

Whitebread I think most of us have alittle of what you have wanting to learn. Knowledge is food to me. MY GOSH having to give up the arts!!! But I i know how you feel its like taking parts your arm. I love to paint, quilt and crochet. Not much for awhile it hurts to much to stay seated.

Straydog I have to have three of these procedures over three weeks. I really can't miss to much work. I have made myself priceless at work I am the only one out of 300 employees that can do my job. But I still have 60 vacation hours if needed. I just will have to break down and inform them of my CP. My doctor said I will have to but its so personal before I do I will have to think really hard if there are other ways to take care of this without telling them the exent of all this.

These are times in my life I wish my mother was still alive. She was like White Beard so helpful and wonderful. I guess its the nurse in them.
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/4/2009 11:57 AM (GMT -7)   
LLPLUV

I Thank-You for the compliment! "You can take the Nurse out of Nursing but you cant take the Nursing out of the Nurse!" And I bet your mom would have agreed with that statment!

I wish you well!
White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

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