Please Welcome Roger Rabbitt!

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

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/17/2011 7:51 PM (GMT -6)   
Hello Roger! I copied your post from another forum and took the liberty of pasting it here on HW at the request of another member, and actually by invitation of your post as well.

Hope this helps you, and we would like to Welcome you to the CP forum!

SE wink



Roger Rabbitt wrote:


Hello all!

As of last week I was diagnosed with this disease. I will say I am floored and can't imagine what I am about to endure. My Faith in Christ it strong, but like any normal human, I am still in shock. God has a reason for this, but I am still not sure why.

A little back ground on me. I am a 45 Hispanic male,Police Officer, 6'02", 270 lbs. I have had Hypertension for as long as I can remember and have always been on meds for that. A couple of yrs ago I was diagnosed as type II Diabetes. Also on meds for that. FYI I have lost 53 lbs, due to my diabetes. I was 323 lbs a yr and half ago.

2 yrs ago(may 09) I was in a car wreck head on, and things seemed to spiral for me. I expierenced neck and back pain, since then. I took it for what it was worth and continued on. x rays at the time of accident showed what appeared as herniated discs at different area, oh well so I thought.

Fast forward 2 and a half yrs now. I took a fall about 2 months ago, here at home. Pain in my left buttock, down my left leg etc Simple signs of a disc flaming a nerve, so I thought. MRIS were done and that was the prognosis, OPLL. That was a hard pill to swallow, as I am deathly scared of back surgeries.

A MRI of my neck and mid back were ordered 2 weeks ago, and look what shows up OPLL. I felt like I was in a daze as he was telling me what was going to happen, what could happen etc. Till now my mind is in a blaze of disbelief. Compound that with what seems to be very little to no great knowledge of this disease and numerous ways to treat and not to treat it. I live in Hickville, but the doctor, who is a spine surgeon assures me he knows what he is doing.

December is my first surgery on my neck and lower back. Basically he is going to cut the bones at the vertrabraes to give the spinal cord more "room" wow He says he would like to go through the front, but may go through the front and back, depending on how things go.

Here is what I am having a really tough time with. He assures me in best case scenario. 3 nights in the hospital and 4 days. 2 weeks at home and then off to light duty. Just doesn't seem feasible to me, and everything I have read has been no where close to this.

Other symptoms for me? Drop foot in my left leg, neck, upper and lower back pain, headaches(which I never ever had headaches in my entire life) till now, blurred vision in my left eye, very unsteady gait and unbalanced when walking. The pain is VERY manigible and at times more of a soreness to me. So why the surgery? Doctor insists if I take another tumble or another car wreck, I am a sitting duck for paraylisis. Sorry so long and thank you for your time.
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"

Post Edited (Screaming Eagle) : 10/17/2011 7:36:07 PM (GMT-6)


misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 10/17/2011 8:22 PM (GMT -6)   
Wow, really sorry to hear about your diagnosis. I really hope you get some good help soon and are able to confront this. I admit I have never heard of it either until you posted this. I'm still not completely sure that I understand what OPLL actually is aside from the medical terms, but it does sound very serious. I pray that you get the absolute best help on this, and I am glad that you have come here.

Thanks for posting, and welcome! :)

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 10/17/2011 9:26 PM (GMT -6)   
Welcome Roger Rabbit,

As you indicate that you live in Hicksville, you really should consider finding a prominent doctor for a second opinion. Personally, I've learned to seek second or even third opinions when it comes to significant medical decisions. I recently declined a procedure recommended by a doctor after another made it clear to me that the first was wrong.

There are many doctors who are "quick to cut" as one doctor I know described the attitude of another. Some doctors are more interested in money, adding to their surgical repertoire, or other self-interested motives. So you should look into the outcomes for the specific condition you have been diagnosed with and the procedures the doctor has planned.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/17/2011 9:51 PM (GMT -6)   
Roger Rabbitt, welcome to the board. That sure does seem like a lot to take in at once. I would definitely seek out a second opinion from another surgeon, and tell that surgeon you are wondering if conservative treatment would be appropriate. Explain your concerns about spinal surgery.

I would guess the doctor is recommending spinal surgery due to your neurological symptoms - drop foot, unsteady gait, balance problems and headaches. Would you prefer to live with those symptoms rather than have surgery? The doctor may just assume you want those symptoms resolved. It is also possible they are recommending surgery so that those symptoms do not get worse.

Write down all your questions for the surgeon before your appointment. If you decide to get a second opinion, see if there is a teaching hospital near you. It might be a bit of a drive, but teaching hospitals often know the latest treatments and all your options. There is a list of teaching hospitals on wikipedia, although it is not complete.

en.wikipedia.org/wiki/List_of_university_hospitals
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Roger Rabbitt
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/18/2011 1:07 AM (GMT -6)   
I believe the main reason for the surgery is the risk of paralysis. Like I said the pain is manageable, but seems the doctor is wanting to do the surgery for that reason. Most the time it feels like more of a soreness, then a pain, in the shoulders, neck etc. Now my gait is bad as well as my drop foot.

The drop foot can not be corrected, maybe some improvement to my balance and gait, with surgery. My biggest concern? Very little is known about this, so it seems. Variations in treating etc. The thought of repeated surgeries, walking with a cane, disabilities etc

I need to point out. I get around great. I have no limitations(weakness) in my arms, legs(cept the drop foot) My strength is all there. Just the thought of the surgery, and loss of some or any restricted movements, which is a possibility, lingers in my head.

I guess I keep telling myself I'm a sore alot, but I am on the brink of wheel chair bound and a parapeligic, so the surgeon says. Thanks for all the replys, and God Bless. I hope I can find more people on hear who have this condition and can give me better insight.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/19/2011 7:04 AM (GMT -6)   
Hi Roger, and welcome to HW.

I agree with Heather - make a list of questions before you see the surgeon. Can you also take someone with you - your partner if you have one, or a close friend? It's useful to have someone who can not only provide a bit of moral support but be a second set of ears and brain. It sounds like what you're dealing with is quite overwhelming and there may be a lot of things said that you just don't take in.

All the best,

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 11/6/2011 1:17 PM (GMT -6)   
roger, go to nord rare disease sight. to see members with opll. 2 are having surgery 12-11. there are almost 30 members with opll it might help to talk with them. socaoceanlover

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/6/2011 11:01 PM (GMT -6)   
welcome, roger. your story was tough to read, you have been through a lot already, and you have a lot in front of you.

You need a top rated specialist and surgeon to do the delicate and intricate work ahead on you I wish you the best as you move ahead

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 9:32 AM (GMT -6)
There are a total of 3,005,049 posts in 329,191 threads.
View Active Threads


Who's Online
This forum has 161760 registered members. Please welcome our newest member, Adrianna1023.
342 Guest(s), 8 Registered Member(s) are currently online.  Details
SoMuchFun, Sr Sailor, sebreg, leelee112233, C_G_K, Tudpock18, AimeeOx, Anna7ella