Update on Rhaevin

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Regular Member

Date Joined Jan 2011
Total Posts : 230
   Posted 5/29/2011 12:37 AM (GMT -6)   
I know I've been gone for a long time; since they were sending me home from the hospital back on May 13th. May 23rd has come and gone, and my unit is now activated; I'm still getting used to it. The big blessing is that they placed the wires so they can cover pretty much all of my body; from my neck to my toes. The down side is that to make the pain in my neck bearable I have to turn my unit up so high that all the muscles in my arms feel like they're contracting painfully. Mixed bag, eh?
I'm still in alot of pain. Alot. I'm on a muscle relaxant now and it does seem to help a bit, at least in my neck. I'm suffering from loss of mobility in my neck. I can't turn to the right barely at all, and I'm decreased to the left. I can look up, but I can't look down. I also can't reach back and put my hair into a ponytail without excruiating pain. Seems like everything I do causes me no end of grief to my neck. For the first week or so I had to walk with a cane. Between being super dizzy from the meds, the loss of the mobility caused me issues as well. I still have to fully turn my torso to look at people, or see what noises are being caused by. It also means I can't drive. The few times I've driven, just around the neighborhood, it's been awkward not being able to look around. I leave my unit on, even for sleep, and it makes my toes tingly because of the range I've got; I think some fine tuning is in order as more swelling goes down and I continue to heal.
Sitting is also an uncomfortable experience, as well as sleeping. Primarily I sleep on my left side. These last few days I've been able to sleep on my back a bit, provided I use the right pillow beneath my neck to keep it from hurting or causing a migraine the following morning.
I'm pretty dependant on my family to help take care of me, and in the last week my neck pain has gotten worse; it's only one sided at the junction of my neck and shoulder on the right, and down to the scar at the nape of my neck.
The doctor's telling me the surgical sites are healing nicely, but the pain has me scared. The ways things are now I'm never going to ride again. I've hit another bout of depression that was so bad for a few days I could have sworn I'd missed my daily dose of anti-depressant. I felt worthless, unwanted, unloved (I broke up with my boyfriend, especially after he told me why he never visited me before or after my surgery, nor didn't even bother to call to check on me), like I'm a burden. I watch my father bust his butt in the yard working to get the ground re-leveled so we can try again to get the pool up.... and I can't help. The other day my pond filter sprung a leak, and trying to fix it had me in so much pain I was useless for the rest of the day and just napped. I hate not being able to do anything, I hate not doing anything more then sitting on the couch taking my meds and trying to ignore the pain as I try to find a comfortable pose to sit or recline in. And if I over do it (like the shopping trip to the mall my Mom took me on) I pay for it quickly; my head feels so heavy it hurts just to hold it up. I fear my neck will never recover and that my CRPS will use this as a chance to take up residence. It's not unheard of, it just means giving up more of my life to my pain.
With the unit on I'm getting relief in my hands (yes, both) but I'm not really getting any in my neck. If I want it in my neck I have to turn it way up, but that means the rest of my body feels like it's cramping.
Anyway, I've exhausted myself typing, but I just wanted you to know how things were going. Don't expect alot of activity from me as I continue to heal. Besides, numb fingers making touch typing complicated.

Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

Screaming Eagle
Forum Moderator

Date Joined Sep 2009
Total Posts : 5005
   Posted 5/29/2011 1:51 AM (GMT -6)   
Hello Rhaevin

You're news saddens me and I'm sure the rest of the members as well. I'm deeply sorry, you are having all this pain and suffering.

Maybe it will be a temporary thing, and as you heal, you will feel better, and the unit will do a better job of giving you some long term relief. I certainly pray that it does.
It's so easy for us to offer those three little words of "Hang In There" and at the moment it may not seem like much of an offering or comfort to you, but I do say and mean it with all sincerity.

Lets hope you have some brighter days ahead, but in the meantime please do take it easy and do not push it. Give it plenty of time, and remember you just had it put in, and the recovery time will be a few weeks.
One of the other members posted her experience, and I'm hoping you are able to find and read it, because one of the things she shared, was that the neck area was taking a long time to heal, and the progress was very slow.

I know you already know this, but I will say it anyway....we are here for you, so let us support you through this rough time in you're life. You are well liked here, and the members are sincere when they reach out to you. This is one of the few places above and beyond family and or friends, that you can count on for sincere support. Please believe that!

Don't give up on ridding again just yet. It has been two years that I have been off of my Harley, and I was so sure I would never be able to ride again, and was preparing in my head and heart to sell my bike. Well...today, I worked up the courage, and pulled "Pearl" out of the garage, and took her for a spin. It gave me some hope again, although,... I'm still not sure that it is in my best interest for my back. My point here is, that I was so sure, that it was impossible a few months ago.....so I'm asking you to keep that thought on the back burner until you have had plenty of time to adjust and heal. Keep the faith!...as best you can.

Are you taking "Pain Med's" for BT? Also, absolutely do not feel guilty that you cannot help around the house....anyone would understand that you need time to heal, and the seriousness of what you have just been through. You're health is the most important thing at the moment.

As far as the boyfriend goes....count you're blessings, that you were not married to him, and found this out before anymore damage was done. I agree his timing was cruel to say the least, but trust me, it would be, or could be worse to be married and have a spouse leave under the same circumstances.

If I could reach out and somehow magically give you some relief, I would do it in a heartbeat, but that is not really possible. What I can do though, is to keep you in my prayers, and I will most certainly do that, as I do for many others here on the forum.

We really do care, and you're not alone in spirit...were here 24/7 whenever, you need us.

Take care in all sincerity,

Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Forum Moderator

Date Joined Mar 2011
Total Posts : 1276
   Posted 5/29/2011 2:14 AM (GMT -6)   
Dearest Rhaevin, I don't think I can add much to what SE has said but know that you are often in my thoughts and I am sending lots of healing vibes in your direction.

CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Regular Member

Date Joined Apr 2011
Total Posts : 87
   Posted 5/29/2011 6:27 AM (GMT -6)   
Hiya Rhaevin

I am so sorry you are still in so much pain lovie. I am sure just like SE has said things may well start to get better once the swelling has gone down. I hope you start to feel some benefits from it soon lovie and until then, I send you lots of gentle (((((((hugs)))))))) and hold you in my prayers. xxxx

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/29/2011 3:32 PM (GMT -6)   
I'm glad you were able to post and update us.... you've been in the thoughts of many here.  But I'm so sorry for all you are going through.  The comments that others have made have kind of said everything that I feel....
But please know you are in my prayers.... and please know we are here for you!

Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 5/29/2011 5:07 PM (GMT -6)   
Hi Rhaevin I'm so sorry that you're still in so much pain. It's good to see an update from you though. I am sure it's hard to be patient when you're having all the pain, but you can make it. It hasn't been that long since the surgery, and like you said, there's still swelling and lots of healing to do. Don't forget that we are all here for you. (((((((((hugs))))))) You take care and don't worry about doing things around the house. I know your parents understand. Take it one day at a time.

love ya my friend,

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Veteran Member

Date Joined Aug 2006
Total Posts : 9661
   Posted 5/30/2011 12:09 PM (GMT -6)   
So, very sorry your in so much pain still, have you called the doctors office?
SE is right come here so we can try to support you. we all really do care...
I hope you heal up soon and are feeling better in the coming days...
Lots of Prayers and well wishes...never give up on your dream of ridding again...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Veteran Member

Date Joined May 2011
Total Posts : 636
   Posted 5/30/2011 10:41 PM (GMT -6)   
Hi Rhaevin,

My name is Shell, and I am new here, kind of just hanging out getting to know the place. I had a SCS trial a few months back and I remeber the rep saying that the programming can really be tweaked after your initial healing period is over. There are so many ways that they can change each mm of the device. They should be a able to make a program that turns down the toes in relation to the arm. It might take a while to get things perfect. Make sure you keep in good contact with your rep, they are there to work for you!

I understand what you mean about the cramps/weirdness. When I would turn the device up enough to get my feet covered, my arm would start cramping, tingling and jumping. They said it wasnt possible, because my device was placed lower, but it was consistently happening. Anyway, I really feel it has something to do with the RSD/CRPS, but thats just my opinion,lol.

I know its frustrating to sit and watch other people do the work, but right now getting that SCS to heal in place is your most important job. It is still real early, take care of yourself!

Big hugs,
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion non union with hardware issues. Fusions C5-6, L5-S1. SCS trial successful awaiting placement after fusion revison 6/11.
MEDS:Fentanyl Patch 25 & 12.5 mcg, Fentora 100mcg, Oxyfast 10mg, Morphine Sulfate 15mg, AtacandHCT32/12.5mg, Clonidine, Zofran.

Regular Member

Date Joined May 2011
Total Posts : 104
   Posted 5/31/2011 2:26 PM (GMT -6)   
Rhaevin, Like everybody else has already said, we all wish you a speedy recovery! When I had my back fusion done, even though it took longer to heal than my scs unit, the scs unit was soo much more intense! When I had my fusion, I had one episode "in" the hospital with back spasms, when I had my unit put in, as soon as I woke up I started screaming and crying in pain. All I wanted was my husband, he gets stuff done when I'm in pain! I'm 43 yrs old and we've been married 22 yrs, we're kinda close. As far as feeling like a burden to your family, even though I'm close to my husband, I still feel like that to mine. You're not a burden, you just want to feel needed, like you're still loved, and you are. As far as your boyfriend goes, of course it hurts, but you deserve better, if only there were a pill for that, boy wouldn't someone be rich! If it will make you feel better you can give me his address and I can go to his house and beat him with my cane! I'm only kidding! I just wanted to make you smile. I hope I don't get in trouble for that.

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 5/31/2011 6:38 PM (GMT -6)   
I am so sorry that you are in so much pain. I still have days of the same type of depression (as I'm sure most of us here do), but I feel like we are in it together. That's why I come back time and time again....especially when the depression is in it's worst stages.

I wish I had more words of wisdom, but they have all been spoken so well. I can only echo the sentiment that the others have made.

I wish you a speedy recovery.

All my best!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....
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