Meeting with Surgeon

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/27/2011 1:27 PM (GMT -6)   
I want to apologize that this has taken so long. It seems like I'm either to tired to get around to posting, or something comes up that has me dashing out the door. I try to reserve my computer time to in the morning and late at night, and as such I tend to put myself in a time crunch. Still, I know some of your are curious to hear how my appointment went last Thursday.
 
So when last we left our heroine she'd had a successful SCSU trial back in February, having had the unit pulled on February 14th. That same day her Pain Management doctor said, "I'm sorry, but there just aren't alot of surgeons even willing to do the procedure, let alone yours, due to some severe negative issues post surgical; such as paralyization." I put my trust in my doctor though, and in a few weeks I was getting a call from a Spine/Brain specialist to set up an appointment for a consult.
 
Last Thursday, the 24th, I met with this surgeon. At first I was upset with the office staff's lack of communication: when you spend an hour and a half drive so you can wait for a half an hour in the waiting room, and another hour in the exam room before you even /see/ the doctor it gets a little upsetting. I was mildly ruffled by the time he got into the room and explained to him it would have been nice if his assistant had bothered to give me an update on the delay and checked to make sure if I was okay. Then it was down to business.
 
We talked odds, his success rate versus how often he performs the SCS unit implant, and alot of my fears were allieveated. The worst reaction he's gotten was one gal ended up with diminished control over one side of her body; that's a risk I'm willing to take given after that the worst thing that happened was two ended up with infections, but they were easily managed.
 
However we've hit a road bump. While I had the x-ray my PM doc had given me after doing my trial stim to show lead placement, I have never had a cervical MRI done. Yes, I know, somewhat appalling. I tried to explain to him that no one was willing to listen to me. When I mentioned my chiropractor found my neck alignement was way outta whack, my PA I was seeing at the time did an x-ray of my neck and didn't find any reason to MRI, and when I mentioned it to my pain doctor and how the theory was there could be something pinched, etc, hey dismissed it with the typical "oh, so you're a doctor now, are you! Trying to tell me how to do my job!" of course, that was also the bozo who said "I can't find anything wrong with you, there for your fine. Obviously it's all in your head." He was also the one that implied I was just there as a drug addict trying to milk Workman's Comp for everything I could. Boy would I love to be able to go after him so no one else has to suffer a misdiagnosis at his hands! I wouldn't even want money, I'd just want to know that quack wasn't treating or diagnosising people anymore and I'd be happy.
 
So I have the referal for the cervical MRI just to make sure that everything is still a go and that I don't have any unknown issues such as bulging discs or a narrowing. He checked my neck and I showed him I have full range of motion and no pain. The minor pain I have is located in my neck near the juncture with my clavical and is a result of the spreading pain of my condition. I found this surgeon polite and kind, and very sensitive to the nature of my disease. He wanted to do a quick physical test of limits and tolerance, and before he'd even lay a hand on me he'd always look me in the eyes and ask first "if I touch you here, is it going to hurt?" or "now is this loss of strength, or does it simply hurt to much if you resist?" I was so impressed with his manner in this way. Most doctor's don't think twice about you when you say you have chronic pain, and just grab and push without a second thought.
 
At least I can have the MRI done locally, and I've already got a follow up appointment set. I have discovered a few things from this trip. For starters I am not really able to make the drive over and back by myself anymore. (It's an hour and a half one way!) Even with my brace I was so swollen and hurt; for a few days afterwards the pain just wouldn't ease up from all the use. Not to mention that even though I took my pain pills with me, I was in so much pain my body tried to shut down and go to sleep during the drive home. So my Mom has already said she'll go with me next time to share the driveing with me. I also discovered that while my pain is spreading to the front of my clavical region and up my neck a bit, my nerves are not reacting to gentle stimuli.
 
So until April the 11th, when we discuss my results from the MRI, I guess I'm left hanging out here in limbo. I am convinced to have the surgery at least, but now it's a matter of whether or not my body can have it. Until then, what's waiting a little bit longer at this point.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 3/27/2011 1:57 PM (GMT -6)   
I don't think I would call it a roadblock. Maybe a speed bump at most. Sounds like to me this surgeon wants to make sure that you have the best possible chance of a successful implant and is proceeding carefully instead of rushing in and finding out after the fact that he should have done something different.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/28/2011 12:49 AM (GMT -6)   
Jim, I completely agree; again, another aspect of him that impresses me.
 
After initialy dealing with so many doctor's that either treatment like I was wasting their time, or faking it, or being unable to help me, and losing one who'd been with me off and on since the start of all of this to cancer just a few months ago, it's nice to find a few that are sincerely compassionate and caring about their patients, and don't leave you with that feeling that they're just trying to make as much money off you as possible.
 
I knew I could count on my PM doctor to find me the best surgeon possible, and it seems he's done just that. Hopefully by the time I see him next month (probably later that same day due to the fact that he makes the effort to come from Las Vegas to Pahrump once a week) I'll be able to give him some good news. I am very lucky to have the doctor's I do. :-)

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 3/28/2011 12:23 PM (GMT -6)   
I agree with Jim! This is just a speed bump, or better yet, just a little bump in the road. He is checking everything to ensure success for you. I am appalled that no doctor did an MRI. After working in Radiology scheduling them for years it seemed like everyone that had neck or back pain was sent for MRI.

I still feel sorrow for you as I do all of us who have been told that there is nothing wrong with us and we are in it for the drugs, attention, etc. The laziness and arrogance of some who think that they know everything. I want to find the doctors who told me that and have them spend a day in my shoes to change their high opinion of themselves. Life doesn't work that way.

This surgeon sounds like he has great success with this procedure! You have so much hope in this and I am praying that the waiting will be worth it for you, also that the time passes quickly for you. If you have any MRI questions I or anyone else on here who has had MRIs can help you.

In the meantime, you are in my prayers. I hope your pay stays low, and that answers come soon! I am so happy for you Rhaevin!

HUGS<
Mindy

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/29/2011 1:30 AM (GMT -6)   
Thanks, Mindy! *hugs*
 
Not to worried about the MRI; won't be my first rodeo, as they say. The reason they never did one for my neck before was because I never had neck pain.
 
What had happened was with all my pain being in one arm, and it having been a few years since I saw a chiropractor, I had gone in and had them eval my upper back/neck area. And that's when we discovered the curvature of my neck was so off, it was curved the opposite direction. The chiropractor had hoped he may have solved the riddle behind what was causing my arm pain, but after intense traction treatments to correct it (which we did) my pain was not improved. I had mentioned to my PCP about the curve and he took his own x-rays, but found nothing that would merrit doing an MRI of my neck. Again, no pain there, and normal range of motion, so it was dismissed.
 
I am grateful we have a local MRI, but bummed at the same time. The last time I had an MRI done was in one of those big open air ones, which was rather comfortable, but painful at the same time as the position they needed my arm in was not comfortable in the slightest. At least I'm not claustrophobic, so once I get this one scheduled it should be pretty much a walk in the park.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/29/2011 10:47 AM (GMT -6)   

 

     Dear Rhaevin

    Good morning *hugg* How are you feeling today? Were you able to get the swelling down a bit? I sure hope so. After reading your update, I understand why you waited to post it. But, goodness I was relieved to hear that it was finally done

     Normally, I would have left after about an hours wait. I would approach the desk, let the ladies know that I just couldn't wait any longer and I needed to pick up my children. If I were in your shoes, I would have politely excused myself and set another appointment for early in the morning so I had spare time. I was shocked to read that after all that waiting he was such a great surgeon. I am SO GLAD you didn't leave!

    Really, the way you describe your visit with him was a huge relief. He sounds like he is taking every aspect of your condition, your health and you well being into consideration. He is a keeper in my book. I really like how he had a frank conversation about his success and failure rate. Not many will do that. Most would have given general statistics and nothing more.

    I have to say I was really surprised that you have never had a MRI done. You have seen so many specialists and I couldn't believe that through everything they have put you through not a single one requested an MRI!!! Yikes! Well, they are long gone, thank goodness, now you are finally getting one. How long ago was your last x-ray? I wonder what more has happened since then? Well, you will find out soon enough.
 
     It was so good to finally hear an update from you. I hope the swelling has gone down. I agree, that is way to long for you to be driving! Try to find someone to help if at all possible! Know you are in our hearts here!

 
*hugg*
   dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
Mail

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/30/2011 9:40 AM (GMT -6)   
*hugs* Thank you, Dani.
 
My Mom had started to wonder if making the drive, round trip, was going to be to much for me; it'd been forever since I'd tried to do it. Normally when I make the hour, to hour and a half drive to Vegas (depending on what part I'm headed to) I simply stay at my boyfriend's house, but this time I had decided to just go over and come back on the same day. Not going to make that mistake again! Thankfully my Mom has agreed to go wtih me for my next appointment; I'll drive one way, she'll drive the other, that way neither one of us is doing all the driving.
 
Unfortunately the swelling in my hand hasn't gone down much. I've tried not to use it alot over the last few days (not since Sunday) but the warmer weather is coming, and I fear I will only get worse from here on out. It's annoying, to say the least. Not only is it swollen but it's stiff as well. It means I'll have to start holding things in my left hand as I won't be able to trust the right to keep a grip on anything. The sensation decreases, the whole hand swells, and the joints feel thick and become painful to bend, and though the nerves will tell me "I got it!" I'll watch it slide right through my fingers and fall to the floor.
 
I'd had a couple MRI's done of my wrist and my whole arm (from the shoulder down) but not the neck. The last set of x-rays I had taken of my neck were well over a year ago, so I'll be curious to see what the MRI reveals. I'm scheduled for tomorrow, Thursday, around noon.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 3/30/2011 10:12 AM (GMT -6)   
Rhaevin
 
I think it is great that you are having the MRI done on your cervical spine, it makes no difference that you have full range of motion in your arms and hands or normal reflexes, that does not mean something is not wrong! I know that from past experiences! Pain in your hands and arms, either one or both, is often one of the signs, or symptoms of something being not right in your neck! Let me assure you you are not the first one, nor will you be the last one that the Doctors have ignored this this and not wanted to do further follow-up on. The key thing here is persistence, and getting them to listen and do the proper test! So I applaud you on sticking to your guns and getting them to listen to you and ordering the tests needed! I do hope there is nothing wrong with your neck, but if there is, they can finally treat it and get it fixed! Untill you have your MRI just be carefull on what you do, as you do not want to make anything worse if you do have a promblem with your neck!
 
Keep us informed on your progress! and I do wish you well and hope that everything works out well for you! Good Luck
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, 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 I am White Beard with a White Beard!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 3/30/2011 10:41 AM (GMT -6)   
Rhaevin, i am sorry for all that has gone on with u so some quack can make a buck. On the other i have never felt so accepted by everyone all of us having different yet the same. i cant tell u howmany times i have been accused of just being a junkie, when i was on methadone it was madness. although i would never wish ill will on anyone i would like to ask some of these doctors to walk in my shoes for 1 day, 1 hour even and then tell me its in my head. keep your chin up we a so fortunate to have headlingwell to vent with people who know how it is and what it feels like. good luck

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/31/2011 12:59 AM (GMT -6)   
NiNi, that's why as much as I know I probably could force to have Workman's Comp re-open my case, given I have now two fantastic doctor's that can document everything that has happened to me since my injury and prove that my current disability is a direct result of that fateful day on the job.... that I don't want to. I don't want to lose the ability to pick the doctor's I see, and while it'd be nice to have my mileage reimbursed, at the same time it was their Pain doctor they told me to see that treated me the worst. 
 
WhiteBeard, I certainly will! I confess to being nervous about tomorrow. It's not the procedure I'm worried about, but the results that have me jittery. I'm affraid that they'll find something that'll make doing my surgery for the SCS implant null and void. It's not even the possibility of finding something wrong in my neck, though honestly if they do I'll be pretty surprised. It's just the fear that I've come so far, and to now be so close to getting my stimulator to deal with all the worsening pain my entire arm... especially before summer fully hits... and then discover that for some reason I won't be able to do it. I know this is for the best, I appreciate that the surgeon isn't just walking into this blind, that he's doing everything possible to make sure this surgery will be a success and have little to no side effects to me. I really do appreciate that he's double checking everything; operating in someone's neck isn't something to be taken lightly. It's just that for the last year and a half one reason or another has stalled the process of trying to get my SCS unit. I'm so close now. I'm gonna do my best to think positively! 

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/31/2011 3:38 AM (GMT -6)   
Will be thinking of you x
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 2:12 PM (GMT -6)
There are a total of 3,006,518 posts in 329,346 threads.
View Active Threads


Who's Online
This forum has 161836 registered members. Please welcome our newest member, princesspoopsalot.
292 Guest(s), 17 Registered Member(s) are currently online.  Details
bobmars, HeartsinPain, mattamx, PeterDisAbelard., tickbite666, Andrina, sebreg, zack36, Hibee, ks1905, InTheShop, Envsciguy, princesspoopsalot, Bubbatc, Anna7ella, Jemyl, AUniqueName18