10 years of suffering and only 23!

[on pause]

Hi
This is my first post on here so bear with me...I'll give you the "Cole's Notes" first, its a long, somewhat detailed post!

2001- L5/S1 herniation, pain, sciatica, misdiagnosed
2002- L4/L5 herniation, pain, sciatica, many treatments tried
2003- Microdiscetomy surgery at both levels, reherniated the L5/S1 3 weeks later
2003-2008 tried a range of conservative treatments, no success, reduced quality of life
2008- severe left herniation at L5/S1, sciatic nerve damaged beyond repair, leg pain, weakness, numbness, especially in foot
2010- L4/L5 herniation, quit school, on disability support, surgery options being explored: 2 level fusion, 2 level lamenectomy (in 2 surgeries), disc replacement at one level, fusion at the other.


Back in 2001 (I was 13), I herniated my L5/S1 disc while throwing a ball. Due to an incompetent family doc and my age this was misdiagnosed as a pulled muscle. I eventually recovered somewhat and returned to baseball.

In 2002, I herniated the L4/L5 disc in the same manner. Again, diagnosed as a pulled muscle but the pain never went away in either side, and I had severe sciatica in both legs. MRI showed severe herniation at both levels. I tried physio, acupuncture, chiropractic, massage, several nerve blocks and medications, no success.

In 2003 had a microdiscetomy at both levels. While I was still barely recovering from surgery (which didn't relieve symptoms), I reherniated the L5/S1 disc again, just to the other side simply stepping out of the shower! I was in even more pain than pre-surgery and missed a year of high school trying to recover via conservative methods.

The pain eased a bit but never went away. My lifestyle was severely restricted (no sitting/standing/walking more than 30mins, which sucks when you are a teen!) I was able to complete high school a year after my friends and eventually made it to university in 2006.

The pain seemed to worsen during this time, so I became a part-time student in work load, though paying full time fees so I could use my parent's insurance for meds and treatments not covered by OHIP.

In October 2008, I reherniated the L5/S1 disc simply sitting in a chair, and this was the worst of the bunch by far! The disc bulged out 2.4 cm and destroyed the sciatic nerve root. I woke one day with the worst pain in my life; horrible spasms that wouldn't end, numbness, weakness, pain and odd sensations into my left leg and foot. I had to be hospitalized to help manage it as I was screaming more or less non-stop and not really coherent (I kept saying the same phrases over and over without realizing it). The next few days it eased and I have been without feeling in much of my left leg and with severe pain, sensitivity and just plain weirdness in my left foot since. I also lost reflexes in that foot and knee. I'm told this is permanent.

I never truly recovered from this incident. I was taking one course a semester in school, could not work again, and my life restrictions became even more severe! I could no longer go see a movie, go to lunch/dinner in a restaurant, walk my dog, nada! My social life disappeared and I lost contact with most friends during this time. I became severely depressed after being bounced from one doc to the next, many of whom said my problem was "in my head" or that "I was too fat" as if losing a few pounds would fix it! (By the way, I'm 5'10 and weighed 160lbs at the time...hardly fat!). It seemed my situation was hopeless. I gave up on taking meds that ave me bad reactions and just learned to deal with it and try to move on with my life. I also had to walk with a cane after this incident, as I took a few falls when my leg suddenly "gave out".

Most recently, I have herniated the L4/L5 disc again but to the right. If you can believe it, I was lying down when I felt the 'pop'! I now have severe sciatica down the right leg with some weakness and tingling. I have had to quit school as I could no longer afford to pay for classes then have to drop out half way through a semester without refunds. I still can't work and I am more or less housebound and must lie down most of my days. I feel I'm losing my mind from boredom and inactivity.

I finally found 2 doctors willing to help me out and truly LISTEN to what I'm telling them is happening in my life. I now have a few cards on the table surgically though neither seems overly optimistic about my outcome, but I have to try!

One option is fusion at both levels, though one doc said I would need to be in every 5-10 years for more surgery for life. Hardly seems like fun! another option is a lamenectomy at both levels, though done in 2 separate surgeries. My third option is disc replacement at the L5/S1 level, see how that works out, then fusion at L4/L5 if it is still troublesome.

It's a lot to take in and I honestly don't know which option is best, which is why I'm here! I would love to hear about your experiences with these surgeries (or others for similar problems) to help me make the best possible decision. No one wants to have surgery every few months, so I'm hoping to avoid that path. Any help would be greatly appreciated!!!

Christina

[Hooch]

Hi Christina,

So sorry you've been treated the way you have for so long. Was no surgery offered after a 24mm herniation? Amazing. Just ridiculous.

I'm under the impression it is difficult to find adr docs in Canada. If you have a fusion and disc replacement fuse l5s1 and replace disc at l4l5, not the other way around. You want a surgeon with plenty of experience with disc replacement.

If you cannot find adequate care domestically you can consider looking overseas, but it is not within everyones financial reach.

[Maria]

Hi Christina,
Sorry to hear about your back probs and thank you for listing your spinal probs the you did. Easy to read.

I would suggest contacting Mark (mmglobal) and talking with him regarding what's been proposed to date. I think it would be well worth your time. He's helped many of us here, myself included.

Does sound like there are options and that's always hopeful in my book. Just trying to figure out which option may be best is a somewhat daunting task hence the suggestion to contact Mark and check out how he may be able to help you.

Good luck and hang in there! Maria

[dshobbies]

Hi Christina and welcome to the forum,

Though most of us encountered our spinal problems as adults, we all still had difficulty adjusting to no life with constant pain. I can't imagine what this must have been like for a teenager, having to miss a year of school and everything else you've been through. I am so sorry.

From reading other posts, it seems the health care system in Canada, especially for spinal patients is somewhat antiquated. I don't know what your finanacial circumstances are but it might be in your best interest to travel to another country for your 'hopefully' final surgery.

I agree with Maria that you should contact Mark, GPN Artificial Disc Replacement ADR for help. He can arrange for internet consultations with the best doctors who can then help you decide your next course of action.

A double fusion at your age would probably lead to further herniations in the future at adjacent levels which then must bear the burden of the fused discs. This might have been what your doctor referred to as needing more surgery every 5 years or so. An artifical disc at L4/5 would probably slow that process but also may not prevent further degeneration. Then again, it might.

I've often claimed that choosing your right doctor is your biggest decision. Please contact Mark. He can point you in the right direction and help smooth out your decision making process.

You have a lot to learn and we're here to help as much as we can. Please post your questions and concerns as well as your updates often. It helps to know others experience the same problems. I do hope you find your solution.

Dale

[on pause]

Hi
I will definitely be in contact with Mark. Thanks for giving me a place to start.

@Hooch, I saw my original surgeon after having the 24mm herniation (the one that crushed my nerve root) and he was I guess having a bad day. After 5 hours of waiting in his office after he was called to emergency surgery (which I understand) he looked at the wrong imaging on my MRI, the fat content not the water content, told me I had simply pulled a muscle and that I was getting fat and should loose weight! His words exactly, and after that, he left! I sent him a detailed image, measuring the herniation size and mailed it to him with a strongly worded letter. I haven't been back to see him since.

From your experience, is there one ADR that is superior to another? I just found out about this surgery option yesterday, and though I've been trying to learn as much as I can, there is a lot of brand marketing that is tricky to get past and get an unbiased opinion. Though ADR surgery is fairly new in Canada, the doctor I lucked into does them quite regularly. I'm not sure yet which type he uses. He has gotten excellent reviews on Rate Md's and was highly recommended by Best Doctors, which is a private organization that fit a patient with the most skilled and respected doctors in their area. For anyone American reading, I don't want to rub it in, but the entire procedure is financially covered here in Canada, so going overseas and paying thousands doesn't seem like an option when I believe my doctor is very skilled. His wait time is usually 2 years but I was able to get an urgent appointment.

On a sort of side note, does anyone have any thoughts on why this is happening to me? I know I'm really young to be having these problems. My most recent MRI shows bone deteriorating around the discs, is that degenerative disc disease? Also, my discs keep reherniating with no trauma at all. The first two happened while throwing a ball, which doesn't seem like much trauma to begin with. To date, none of the 15 or so "specialists" have been able to give me an answer on why this is happening at all, the only ever try to help the symptoms. I want to fix the cause! I'm hopeful for surgery because by my logic, if there isn't a disc, nothing can herniate again! I just hope all the other levels cooperate!

Christina

[Hooch]

Hi Christina,

It is very unusual to herniate discs at such a young age (early teens). Disc degeneration and the process by which it causes back pain in some and not others is still not entirely understood by medical science. Hopefully the early trauma was just some sort of fluke or due to an earlier injury which set the degeneration in process. If it is confined to only the two lower discs that is a good indication that it's isolated so be confident in the rest of your discs.

I still struggle to understand that you were left with a 24mm herniation that was causing severe nerve impingement and not offered surgery. Not good enough. Hopefully at least some of the nerve damage isn't permanent.

If you've got access to an experienced surgeon that's great news. Be aware that adr isn't always indicated and sometimes a fusion is more appropriate... a common issue is facet degeneration. There is plenty of info out there about this on various forums and sites.

There are many lumbar disc replacements available now. There isn't a standout prosthesis that dominates the market. There are pros and cons to each, but to understand the difference requires a fair bit of research. If you are interested in looking through that sort of stuff u can pm me and I can give u a bit of a headstart. Each surgeon you consult with will generally have a prosthesis that they prefer to use on you... feel free to quiz them about it and how many ops they've performed.

I'd only caution that u do your due diligence.

Good luck,
Chris.

[dshobbies]

Christina,

Great news about getting an ADR in Canada. Another Canadian wasn't so lucky in just the recent past. As Hooch stated, there may be contra-indications which your surgeon will (should) look for before recommending them. Don't worry about rubbing anything in - we're all very happy when whoever's system works to their advantage.

Degenerative disc disease, DDD, is basically - you have a degenerated disc (herniation, bulge, unhealthy, etc.) which cannot function properly. Adjacent segments must bear the burden of this disc and they too begin to degenerate. The process can crawl up or down your spine. Not everyone experiences this degeneration and certainly with differing severities.

Fusion can also promote DDD and though the motion preserving ADRs were thought to stop it, studies indicate perhaps not - though to my knowledge most ADR studies are questionable.

Perhaps a neurologist can determine why this is happening to you - just a thought.

Let us know what your new doctor says.

Dale

[jsewell]

Christina
I am so sorry to hear of this happening at such a young age. I am glad you have found a good doctor that you trust. I believe that is the first step. Maybe you can discuss with him/her the options that you have. I'm not sure with your health care system how easy it is to get apts once you are a patient of a certain doctor.
I have nothing to offer in advice except what everyone has said to contact Mark.
I , much older than you at 53 have had severe degeneration and wonder the same things as you, what is doing this?
I am here for support, keep us posted
judy