Post-Myelogram Update

[SandyW]

Justin,

Somehow I missed your continuing thread. Am so sorry to hear of the pain and the possible upcoming surgery.

Read all the links supplied in the thread and even though Dr. B's and Dr. F-M's solution is fairly new, it sounds like an excellent (and maybe the only) way to go. Surgery or pain.

Just returned a message to Dr. F-M and added "may God bless all at Pro-Spine during surgery of "Justin" and "Mark" assuming she will know who I mean! at least God will know!! I am positive that you are both in great hands and amazed at the great work these doctors do.

Thoughts and prayers are with you in the next days and weeks. Sandy Wade

[phylly]

Justin,
I continue to have you in my thoughts and wish you well with the upcoming surgery. I'll look forward to any new info you post. Will you overlap with Mark?
Phylly

[Justin]

I just received an email from Dr. Fenk-Mayer. Dr. Bertagnoli is taking time during the month of April for a private vacation (rare) and he will also be tied up the last week of April at the Spine Arthroplasty Society meeting in London.

My surgery will be on May 14th. I wish it was sooner, but this allows me to get some things straightened out on my end ($$ among other things) before I'm back on the operating table.

CL, I reply to your questions soon...I gotta run as my pain meds are making me feel extremely nauseous right now...

[Maria]

Sounds good to me in terms of having time to tie up loose ends and get it together.

It sounds good to have surgery *after* Dr.B's vacation vs. before it. That's actually one of my questions that I ask when thinking of having surgery with someone if it's of major magintude.

Anyway~ Yipppeee Justin! You're on your way or at least the path that sets you on your way!

[melodyl]

You have been so helpful to everyone on this site! I'm glad to hear you have a surgery date with Dr. B. May will be here before you know it! You (and Terry) know much more than most of us about pain and medications.....hopefully you and your dr. will be able to control most of your pain without too many side effects until the problem is fixed. You mentioned that your fentanyl dose was doubled? I was on high doses of fentanyl.....it was fairly effective at controlling my pain..... but feeling fuzzy headed with fatigue and loss of appetite were a high price to pay. Please keep everyone here updated......we all care about you and your health. Obviously impossible.....but wouldn't it be nice if all of us spine patients lived close enough to each other to provide personal support to each other? I wish I could send you some homemade chicken soup right now! Speaking of soup and appetite.....for any of you dealing with nausea or loss of appetite......I found a new product "Muscle Milk Protein Shakes".....you can get them by the case at Costco. Pretty tasty for a pre made liquid meal (1000 x better than Ensure) and it has 20 grams of protein which is sometimes hard to get enough of if you don't feel like eating. Healing hugs to you. We will all be looking forward to your recovery. Melody

[dshobbies]

Justin,

Having a date one month out is better than not having a date at all. It will go by very fast, except for the pain and all that goes with it. Until then and even after, take care of yourself.

Hey look, another 5 minutes. Time's just sailing by

Dale

[Justin]

Originally Posted by Cindylou

Justin, are you looking at just days ahead for your surgery??

I'm now going to have surgery on 5.14.09.

Only if you have the time, could you explain to me in "very layman terms" just exactly what happened?

To be honest, no one is 100% sure what happened. However, we are all in agreement that when I fractured the L4 vertebral body of my spine during my skiing accident in 1997 that the fracture healed incorrectly. In an attempt to "heal" the fracture, new bone was laid down in this area. This abnormal overgrowth of bone is called an osteophyte, or spondylophyte. Osteophytes are frequently seen in patients with Degenerative Disc Disease (DDD), as they are the body's attempt to help stabilize the spine seen during the degenerative cascade.

The osteophyte that is seen in my case was the direct result of trauma in which the area healed "too well." The interesting thing--I guess, unfortunate for me --is that this abnormal bony growth on my vertebral body is directly compromising the space in my spinal canal. Thus, the spinal cord, which is called the cauda equina at this lumbar level L4, is severely compressed due to this osteophyte--it's as if the cauda equina is being strangled by the overgrowth of bone.

In most cases, severe impingement of the cauda equina is seen following trauma, malignancy or substantial disc prolapse leading to one of the most feared complications in this area of the lumbar spine called cauda equina syndrome:

Luckily, I do not have any bowel or bladder issues and my symptoms did not present suddenly/acutely--these criteria would have required immediate surgical decompression of the impingement. These patients have a window of time in which to be treated in an effort to avoid the possiblity of permanent neurological deficits (bowel/bladder issues) and/or paralysis.

Some of the other stuff presented was over my head, but I really want to understand what has been happening with your spine. And how, what Dr. B is going to perform, will correct things.

Dr. Bertagnoli is going to "decompress" this area of abnormal bony growth through a posterior approach. It is a minimally invasive procedure and the technique used is muscle-sparing and only requires finger dissection of paravertebral muscles. In all honesty, this decompression is going to be very technically challenging. It is understood that Dr. Bertagnoli will probably not be able to remove the entire osteophyte. However, he will be able to remove a significant amount freeing the cauda equina of impingement (and hopefully freeing me of chronic, debilitating pain! )

The wide decompression required will inherently destabilize my spine, so Dr. Bertagnoli is going to place the Dynamic Stabilization System with the non-fusion coupler (DSS-"motion") behind my 2-level ADR. The DSS-"motion" will work in concert with my ADRs: it will continue to allow motion of my spine while providing much needed stability after decompression. The DSS-"motion" also helps eliminate/minimize unnatural flexion and extension.

Artificial discs are truly only "partial disc replacements." Thus, with the DSS behind my artificial discs it will create a "complete disc replacement." I'd be happy to explain what I mean at a later date.

Again, only if you have time. I know your schedule is crazy and pain levels are high. I am relieved that your pain meds were upped, at least for the time being. I do so worry about you Justin, and join Kathy in praying that pain free days are around the corner for you soon.

Thanks for caring about me. It's been extremely draining lately--an emotional roller coaster. The worst part is the uncertainty of my future health. Let's be honest here...I'll be 30 years old in November and this will be my 3rd spine surgery. When I was at Dr. Balderston's office the other day, I was by far the youngest spine patient in the room. This has been a constant in my life, as I've been sitting in waiting rooms regarding my spine since I was 14 years old.

When you get to the other side of all of this, you will be one helluva doctor!! No patient of yours will ever be able to say, "Dr. J just doesn't get pain." Amen to that brother.

Thank you so very much for your kind words. I've always had to work twice as hard as my peers, as I've suffered with chronic pain the greater part of the last 15 years. I will admit it has been a challenge and I've often asked "why me?" but I have to say it has shaped me as a person and will hopefully serve me well during my career. Even though my future spinal health is uncertain and this surgery has no guarantees, I do know that I will keep rolling with the punches.
Many hugs to you,

Cindylou (ps: do tell, do tell of the exciting news!)

About the exciting news: Hopefully, I'll be able to inform everyone sometime this week...I thought it would be much sooner, so we'll see.

[Kathy]

Justin,
I'm not on here for a couple of days and you get a surgery date! I was bummed when my surgery was scheduled 6 weeks out; but it went really quick. I stayed busy trying to get all the loose ends tied up, making arrangements and all the preperation. My doctor also had a spine conference of some type and went on vacation. So, I also got the refreshed version and it seems to have worked out for me. I'm sure it will work out for you too.

I know how it feels being the 'young one' in the dr's office. Sometimes you get the people who stare, like yo must be in the wrong place. It's almost like you don't qualify for 'real back pain' because you are too young. My family has even said stuff like, just wait till you get older, then you will know pain or is it really that bad. I have even explained to them that eventually this can lead to major problems (bowel/bladder issues), yet it is like talking to a wall. It's like if I'm not laying around moaning, groaning and complaining; I must not hurt that bad (the miracles of drugs). I have tried to explain to them, that I function, because I must. I don't have a choice whether I get up and care for my children or not, that's my job. That I push through the pain and make myself do certain things that are non-negotiable and if I had the option, I probably would lay on the couch and moan all day. I have also tried to explain that while pain meds do help, there is always some level of pain in my body at all times, that the medication just 'takes the edge off'. I tell people now, that I realize I just thought that I knew what back pain was, prior to having real back pain.
I can't fathom being in pain for as long as you have and starting so young. I was injured at 25 and felt the young stigma, so 14 must be un-real. I just turned 29 last month (had surgery right after my birthday, told my surgeon he was giving me my life back for my birthday... no pressure) I plan to feel better and enjoy my 30's way more than my 20's and I will pray for the same for you! On a side note, don't you remember when 30 seemed like a dinosaur? Now, we are looking down it's throat! BTW0- Were you class of 98? That was mine, just curious. Incidentally, I don't think 30, 40, 50, or 60 is old. (and I know 70 year olds that are more active than me, my father in law is 76 and is way more active than me.)

Here's to our 30's being AWESOME!
God Bless and I am praying for you and your wife,
Kathy

Ps. Is your wife going with you?

[Justin]

Hey Kathy,

I end up laughing out loud every time you post. You're too funny. I gotta run right now...but I'll answer two of your questions: I graduated in 1998 from high school and my wife is making the trek with me...thanks for caring.