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  #1  
Old 12-10-2007, 04:10 PM
Mary1989 Mary1989 is offline
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Hello!

My name is Mary and I am 18 years old. I've been diagnosed with DDD of L5-S1 and L4-L5. My surgeon and I have gone through several treatments, including physical therapy, steroid injections, and plasma disc decompression.

Plasma disc decompression was the last option, and I go back to him on December 18th to decide about surgery. Before I ask my question, let me give you a little background on myself/expectations from my surgery.

I was an avid athlete and horseback rider prior to being diagnosed. My DDD was ruled as hereditary, because of its rarity at my age. I was diagnosed a year ago, and since then have been undergoing various treatments. My greatest desire is to get back in the saddle, literally. I fully understand the fact that I will never compete again, but I want to be able to do some casual groundwork and trail riding.

My two surgical options are Charite ADR or fusion. Since L4-L5 is the badly herniated disc, my doctor only wants to operate on it at the moment. I am completely torn between these two options, because I have heard so much good and bad about both.

In the end, I just want to walk again. I want to go out with my friends and not have to leave halfway through a movie because I can't sit any longer. I want to be able to know that my legs won't randomly give out on me, and that I can go to college. Will ADR give me that? Or is fusion the better option.

I look forward to your responses, and thank you all so much for your help.

EDIT: I wanted to amend my post to include the fact that I have developed arthritis in my facet joints as a result of this. When I went to PT it was also discovered that I have mild scoliosis.
__________________
Dec 2006 - Diagnosed with DDD of L5-S1 and L4-L5
March 2007 - October 2007 Began physical therapy.
Steroid injections (3).
Referred to a Neurosurgeon
Referred to an ADR specialist. Plasma Disc Decompression
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  #2  
Old 12-10-2007, 05:28 PM
Grizz Grizz is offline
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Hey Mary,

I am 52 and had a Maverick disk implanted 1-12-2007. I also have a 20 year old daughter and will speak to you just as I would to her. First of all, be patient and make sure you make the right decision. Two level ADR just hasn't been done too often in the US, but if both disks are bad at your age and you want to remain active you should research getting both of them replaced. ADR surgery is a major operation and leaves scare tissue which can make future operations in the same area much more difficult and dangerous. I would expect that you will see many posts to your questions and if there is a two level clinical trial going on in the US maybe someone could direct you to it. A good person for you to speak with would be Sue Hart. She has had both Charite and Maverick disks implanted, has daughters about your age, and has alot of professional experiance with horses. She was working with Stenum Hospital when I had my ADR done and I'm sure you could reach her through stenumhospital.com.

The best advice I can give you is to keep a positive attitude, do your research, and don't jump at the first idea you hear. If you do it won't be long until you will have your "normal life back".

Best of Luck,
Grizz

L4-L5 replaced with Maverick 1-12-2007
MVA 9-2005
Microdiscectomy 7-2005
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  #3  
Old 12-10-2007, 05:40 PM
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Harrison Harrison is offline
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Mary, welcome to our global community. At such a young age, I am sorry to hear about your lumbar problems. And thanks for sharing information about the plasma disc decompression, a newer “spin” on an old technique of microdiscectomies. Here’s one company’s approach (no pun intended).

I am wondering about your diagnosis as a result from “genes.” Did they say it was inherited because you were “too young” to have a problem like this? Here are a few things worth considering:

- there are many factors that cause DDD. My belief is the causes are multifactorial, e.g. pathogens, stress, trauma, heredity, diet, etc.

- more and more patients on this forum are “younger.” So we all need MUCH more information why this is happening to so many people of ALL ages. That's why I started the non-profit!

To answer your question, many patients who come to this site prefer not to fuse their spinal segments. That’s what arthroplasty is all about – preserving motion that should be there when you need it!

At such a young age, I would wonder about underlying pathologies that might be contributing to your lumbar problem. But before I go down this complex path, can you tell us more about any injuries you might have sustained? What other diagnostic procedures have you had?
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #4  
Old 12-10-2007, 05:46 PM
Mary1989 Mary1989 is offline
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Quote:
Originally posted by Grizz:
Hey Mary,

I am 52 and had a Maverick disk implanted 1-12-2007. I also have a 20 year old daughter and will speak to you just as I would to her. First of all, be patient and make sure you make the right decision. Two level ADR just hasn't been done too often in the US, but if both disks are bad at your age and you want to remain active you should research getting both of them replaced.
My current surgeon was on the team that got ADR approved by the FDA, and he currently teaches the procedure. He has never talked about doing both levels, simply because my L5-S1 level is barely degenerate and only slightly herniated. For the most part, it's healthy and I could go another ten years on it without anything bad happening. Just because of that, he's very reluctant to do surgery on both levels.

Quote:
ADR surgery is a major operation and leaves scare tissue which can make future operations in the same area much more difficult and dangerous.
Yes, my surgeon was very up front with me about that. That's definitely one of the major cons I see to ADR, but at the same time, some fusion surgeries require an anterior approach. I'm not sure if I had fusion whether or not they would use that approach, but it's definitely something I need to know.

Quote:
I would expect that you will see many posts to your questions and if there is a two level clinical trial going on in the US maybe someone could direct you to it.
I would definitely appreciate that information if anyone has it.

Quote:
A good person for you to speak with would be Sue Hart. She has had both Charite and Maverick disks implanted, has daughters about your age, and has alot of professional experiance with horses. She was working with Stenum Hospital when I had my ADR done and I'm sure you could reach her through stenumhospital.com.
That sounds great, thank you for providing me with that information. I'll be sure to look her up.

Quote:
The best advice I can give you is to keep a positive attitude, do your research, and don't jump at the first idea you hear. If you do it won't be long until you will have your "normal life back".
I have definitely done copious amounts of research, including watching both surgeries on ORLive.com. This is certainly the very last resort, and we have reached it. There is no other treatment option now, and I have whittled my surgical options to these. I can only pray that I'm making the right decision and seek the help of people who have been through this.

Thank you very much for your reply, I found it really helpful.
__________________
Dec 2006 - Diagnosed with DDD of L5-S1 and L4-L5
March 2007 - October 2007 Began physical therapy.
Steroid injections (3).
Referred to a Neurosurgeon
Referred to an ADR specialist. Plasma Disc Decompression
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  #5  
Old 12-10-2007, 05:53 PM
Mary1989 Mary1989 is offline
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Join Date: Dec 2007
Posts: 4
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Quote:
Originally posted by Harrison:
Mary, welcome to our global community. At such a young age, I am sorry to hear about your lumbar problems. And thanks for sharing information about the plasma disc decompression, a newer “spin” on an old technique of microdiscectomies. Here’s one company’s approach (no pun intended).
Thanks for the warm welcome.

That's the company that provided the machine for my plasma disc decompression. Very informative and helpful website.
Quote:
I am wondering about your diagnosis as a result from “genes.” Did they say it was inherited because you were “too young” to have a problem like this? Here are a few things worth considering:

- there are many factors that cause DDD. My belief is the causes are multifactorial, e.g. pathogens, stress, trauma, heredity, diet, etc.

- more and more patients on this forum are “younger.” So we all need MUCH more information why this is happening to so many people of ALL ages. That's why I started the non-profit!
I am adopted, so very little is known about my medical history. Honestly, I was your typical high schooler. Not a lot of stress besides familial issues, my diet and weight were consistent and proper, and I had no spine trauma. My worst injury was a sprained ankle, which I had surgery on two years ago. According to my doctors, there was absolutely no reason for this to pop up in me other than genes.

Quote:
To answer your question, many patients who come to this site prefer not to fuse their spinal segments. That’s what arthroplasty is all about – preserving motion that should be there when you need it!
That's EXACTLY what draws me to this surgery. I don't want fusion because I am young, and fusion tends to lead to instability in other discs. However, at the same time, there are equally serious drawbacks to ADR. The surgical approach, slipping of the prosthesis, etc. My other huge concern is insurance.

Quote:
At such a young age, I would wonder about underlying pathologies that might be contributing to your lumbar problem. But before I go down this complex path, can you tell us more about any injuries you might have sustained? What other diagnostic procedures have you had?
The only diagnostic procedures that I've had are the typical MRIs and X-Rays, plus a discogram. And like I said earlier, I've never had any problems with my back. I've always been careful to lift with my legs and such, and no sports injuries. I hope that helps.
__________________
Dec 2006 - Diagnosed with DDD of L5-S1 and L4-L5
March 2007 - October 2007 Began physical therapy.
Steroid injections (3).
Referred to a Neurosurgeon
Referred to an ADR specialist. Plasma Disc Decompression
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  #6  
Old 12-10-2007, 06:04 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
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Mary, I sent you a private message...you should see a "new PM" tab on your screen.

PS: Images are OK in private messages, but I discourage members from posting them within the discussion board. There's a long list of reasons for this, I'll explain when we catch up.
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #7  
Old 12-10-2007, 10:13 PM
Liz Liz is offline
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Join Date: Oct 2007
Posts: 195
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Hi Mary-
i'm so very sorry for what you are going through at such a young age. it's interesting that you have not had any accidents or falls and still have severe DDD at L4-5. I was diagnosed w/severe DDD at 3 levels at age 21 at L3-S1 w/tears in all 3. I was very athletic from a young age but only had my first MRI at 21 after I couldn't sit down from 3 days of learning to snowboard and falling on my tailbone... i should have stuck w/skiing (w/only face first falls)!! I was told it could be partly genetic but hard to tell since I did not have an MRI before. I have scoliosis and from what I've learned that may be in part due to diet. I was always very thin and athletic but still may have missed some nutrients... hindsight, who knows, but for another thread this is where some research money needs to be directed to... i'm super healthy now drinking all sorts of green concoctions. I also did horseback riding and gymnastics at a young age and was asked if i fell off the horse or onto my tailbone or SI at a young age. i ran and ran from kindergarten until maybe age 25 and skied and backpacked so who knows... pounding w/thoracic scoliosis was not a good combo for my lumbar spine. If you truly have genetic DDD of course you want to prevent a cascade effect.
that said, you are too young to see life passing you by and not be able to participate in activities that your friends are. i finally had a 2 level Prodisc ADR 3 months ago and i feel that i'm FINALLY turning a corner. it's been a brutal recovery for me personally and i'm far from sold if this was right for me, but also please know that so many people do very well from fusions and ADRs. they may not be here posting b/c they are out living their lives. i sat on a barstool tonight w/a friend for drinks and the pain was tolerable (although i'm not med free)... my friend even said how much better i seemed b/c i was not consumed by pain and i could enjoy a conversation. i'm planning to go hear a writer i like tomorrow night (prob an hour of sitting) so that will be the next test and maybe i'll pay the price afterwards but maybe i won't. i still have little sitting tolerance but i couldn't sit pre-op either so i feel that i'm one step ahead.
there are even people on this board that have returned to horseback riding post-op. it may be a year, but you could very well return to it and i think it's so important to have goals and say you WILL return to certain activities but know you will also have some limitations. maybe you wear a brace (and some hockey gear!) and you don't jump... with a strong core you may ride again but talk w/your surgeons about this. i may never run again which is hard for a runner to accept, but i WILL bike, hike, ski, travel, sit through a movie w/friends again. and you WILL survive college. you may need to get a seat cushion that has a tailbone cutout and lose modesty and take it to class for those horrendous wooden seats but you'll do it. i have one at home and at work. i survived grad school w/severe DDD but i also missed a lot of events b/c of my back. also, learn to ask to lay down at friends houses if you have not already... i love laying down and it lets you enjoy your friends more. i hate sitting!
if college starts next fall now is a good time to be evaluating surgery and what your options are to feel better before then.
i'm hoping by the time any adjacent degenerative effects occur either from my ADRs or from genetic reasons that stem cells or other regenerative technologies will be available.

take care and best of luck in your decision.

also, be sure to get a 2nd and even 3rd opinion if possible before you undergo a 2 level surgery of any kind.
liz
ps... by and large patients that have one level ADR at L4-5 do very well and the best according to clinical research, but of course there are exceptions as noted on this board.
__________________
scoliosis; 1998 snowboarding injury->DDD L3-S1 w/annular tears/protrusions; 2007 episodes of rt foot drop
2007 Prodisc ADR L4-S1
L4-5 Prodisc tilted/facet issues; old L5 nerve damage
2009 L4-5 Prodisc ADR removed and revised to XLIF w/posterior instrumentation
massive hemorrhage from tear of inferior vena cava at right iliac vein due to adhesion from Prodisc op
2010 not fused; as a result of complications permanent nerve damage to lumbar plexus causing severe rt leg, hip, groin pain
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  #8  
Old 12-11-2007, 08:20 AM
Lisibug Lisibug is offline
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Hi Mary. I'm sure sorry to hear you are already having significant spine pain. I rode horses too, from the age of 6 and started developing back pain at 13 and had to go to the chiropractor 3 times a week for a year. I've had back pain and subsequent neck problems ever since. On horses, I was fearless and pretty much a maniac. I'd watch the Olympics and try the high jumping. Taught my horse to canter on his own in a circle and I'd stand on him with one leg, the other up in the air, etc. Consequently, I landed on the ground a lot, probably about 300 times. Have you landed on the ground a lot? I'm guessing you have - I think everyone who rides a lot falls of at least to some degree. You may have injured yourself on one of your falls - I did, as x-rays showed evidence of trauma 30 years later, but I was never aware of that as a kid. I don't know what to recommend to you - the one thing I'd be concerned about regarding ADR at your age is that the expected life span of the disc is about 40 years and re-do surgery is difficult. I also know about the domino effect with fusion - this happened to me. I sure wish you every success, with whichever treatment you decide on. Please let us know how you're doing and what you decide to do.
__________________
Lisa
Back/neck pain with chiropractic treatment 3 x week in 1973 (age 13) for 1 year and pain since then due to falling off horses
headaches since age 17
Onset of severe fibromyalgia in 6/95, undiagnosed for 2 years while lived in UK
About 1998 o
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  #9  
Old 12-12-2007, 12:40 PM
Mary1989 Mary1989 is offline
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Quote:
Originally posted by Liz:
If you truly have genetic DDD of course you want to prevent a cascade effect.
That is the main worry of both myself and my doctor. I can't afford to be fifty and have a lot of my inter-vertebral spaces fused.
Quote:
that said, you are too young to see life passing you by and not be able to participate in activities that your friends are. i finally had a 2 level Prodisc ADR 3 months ago and i feel that i'm FINALLY turning a corner. it's been a brutal recovery for me personally and i'm far from sold if this was right for me, but also please know that so many people do very well from fusions and ADRs. they may not be here posting b/c they are out living their lives. i sat on a barstool tonight w/a friend for drinks and the pain was tolerable (although i'm not med free)... my friend even said how much better i seemed b/c i was not consumed by pain and i could enjoy a conversation. i'm planning to go hear a writer i like tomorrow night (prob an hour of sitting) so that will be the next test and maybe i'll pay the price afterwards but maybe i won't. i still have little sitting tolerance but i couldn't sit pre-op either so i feel that i'm one step ahead.
Those things seem so simple to other people, I don't think that they realize how PRECIOUS such mundane activities are for people with back diseases.
Quote:
if college starts next fall now is a good time to be evaluating surgery and what your options are to feel better before then.
Exactly. I made my surgeon promise me that he would make it happen, since I'm already a year behind.
__________________
Dec 2006 - Diagnosed with DDD of L5-S1 and L4-L5
March 2007 - October 2007 Began physical therapy.
Steroid injections (3).
Referred to a Neurosurgeon
Referred to an ADR specialist. Plasma Disc Decompression
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  #10  
Old 12-12-2007, 05:48 PM
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Harrison Harrison is offline
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Mary, I have a zillion questions. But for now...

You did not mention any bone density tests. This does not surprise me, given your age. Most patients and docs would not necessarily consider this; but I would like to see it as REQUIREMENT for all ADR patients. Or perhaps something even better...I'll explain.

Many spine docs rely on the DEXA Scan for assessing bone density. Most ortho docs get a qualitative assessment from the "traditional" imaging studies (X Ray, CT, MRI), that is, an indication of the bone density of a patient. And by the way, DEXA tests are not perfect either (search for DEXA across forums on this site).

That said, your femur and other big bones can have good density, and your spine may even look OK to a doc. But then fast forward to surgery day -- where some patients vertebral bodies turn out to be softer than expected. Why do you suppose that is? I've seen this in patients in their 20s and 30s! Even more, osteoporosis can vary across the spinal column; so some segments may be suitable for certain kinds of surgical procedures, while others disqualified.

I have my own ideas about these causes, which is why research must be done to understand some of these underlying pathologies. In the meantime, please consider getting your spine DEXA scanned before even thinking about any surgeries.

This is just one of many topics I can discuss with you; the phone is more efficient for both of us. Call when/if you want. In the meantime, I encourage you to email/PM/talk with as many patients as you can.

__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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