New Member - Hi All!!
 

I will try and make this concise, though it seems like nearly all of us have long stories.
I'm a married woman in her early/mid 50s with a daughter in college. In the Spring of 2011, after a lucky life of very good health, fitness and no back issues, my strong and young dog yanked on the leash and my low back went out. In that split second my whole life changed. A few weeks after the low back pain started I began to get very painful muscle spasms that ran from my low back straight up my spine to my shoulders and neck, mostly on the right side. These spasms were and still are caused by sitting, standing and walking. Sitting is unbearable for me with low back pain compounding the spasms. I can handle standing and walking a bit longer but that will result in the same symptoms as well. My first Lumbar MRI indicated a "broad central bulge" at L5 S1 and a smaller bulge to the left at L3/4. I later came to understand that I had a large, central herniation that broke through the posterior longitudinal ligament at L5 S1.
I have been lucky to not have any leg pain so far. This truly was a very central herniation. Pretty atypical, I've heard.

When this all started, I was the co-owner of a very successful, 10 year old motion picture editing company in NYC. I had worked in this industry for 32 years in total. I continued to work for over a year in horrible pain. After 10 months I elected to have Microdisectomy surgery at HSS on my L5 S1. After surgery, the muscle spasms went away like magic for 6 weeks, at which time they came back gradually over a month. The low back pain remained and I never received any kind of an explanation or hypothesis about why the spasms left but came back. So the surgery failed but didn't leave me worse off. At the 16th month mark I went on leave from my business and eventually had to dissolve the company and go on private disability.

I have had further MRIs that revealed a number of herniations in my Cervical area, with no symptoms yet and a good report on my Thoracic spine. My HSS surgeon told me that I had degeneration in my L5 S1 but that he had seen much worse. He strongly advised me to not seek more surgery and try more pain management options and see a physiatrist. I asked him then about ADR and, looking back, I realize all I heard from him were the possible horror story, negative outcomes.

So for the next year until now I have shuffled from one specialist to another getting no answers, remaining in pain, completeing one useless PT regime after another and continually getting told that my MRIs don't look too bad. What all of these doctors (with the exception of my new pain management doctor) have blindly ignored is that I CAN'T SIT, STAND OR WALK for more than 30 minutes. I can't work or do much else.

I'm pretty fed-up and ready to move on to surgery as my last hope to least partially regaining my life. I've also come to the realization (as mentioned by Harrison in his presurgery advice) that doctors, especially surgeons from top rated hospitals, are sometimes more interested in protecting their reputations than taking any kind of risk to help an atypical patient.
I'm very excited to become part of this community. I have many questions and am happy to offer any info I have gathered over the past 2.25 years.

Hi,

I think that most members here can understand the frustration that comes through in your post. As far as I know no one at this forum is a doctor so take all comments and replies as just laymen having gone through similar circumstances.
In reading your post, and I can understand your disappointment in PT.
My past physiatrist that did prolotherapy on me was very good although a bit off the wall. My current physiatrist was dead set against my surgery. I understand him though, as a Canadian, the statistics show that in 5 years your just as bad if not worse than you are prior to surgery. As I reminded him, THAT'S WHY I'M GOING TO GERMANY!

Welcome to our global community of informed patients. I hope we can help you get to a better place of healing and life! Out of the long list of lifestyle changes to improve one's health, what have you tried so far?

Thanks Stonewall & Harrison...
 

for getting back to me so quickly. I'll respond to both of you.

Stonewall - Well I'm a fellow Canadian and permanent U.S. resident since 1986. I know the problems of both the Canadian and US healthcare systems quite well. Generally the care and doctors here are great; just incredibly expensive. To date my anger is more about how "unresponsive" spine patients like ourselves get treated.
Please do get back to me. I'd love to hear about your surgery and how you are feeling. I'd also like to hear about prolotherapy as I'm not familiar with it.

Hi Harrison - Over the past 2 plus years, I have tried 4 rounds of PT, steroid shots (including an "epidural lysis for adhesions" to break up scar tissue), Acupuncture, Osteopathy, Bowen Therapy, McKenzie therapy, nearly every muscle relaxant, a hydraulic desk to sit/stand for work, Anti-Gravity chair. All these were of no help.
What has helped temporarily is: massage, myofascial release massage, my massage chair, trigger point injections with cortisone, ice, heat, stretching, moving around from standing to kneeling to laying NSAID painkillers and opiod painkillers. (Which I am now getting off of.)
For exercise I swim now. I tried several other low impact exercises (Elliptical at gym, walking, etc.) but they only aggravated my muscle spasms and LB pain. Unfortunately, the swimming does not help my pain but it is good for me. In my former life, I was an avid cyclist, walker and hiker. I loved racquet sports and gardening too. I take vitamins and am up and down with sticking to a good diet.

Have you obtained any surgical recommendations yet? I would consider getting opinion from some European docs, even if you are not considering it could be helpful to have their perspective. I understand the long haul of slowly watching the activities you love disappear. I am was, will be again, a triathlete and active cyclist. I am very much looking forward to being on my bike again next year!

Thanks TPatti
 

I really hope I can get back on my bike some day soon too. My husband has gotten back in to it big time. We used to ride together and were hoping to go back to Vermont to ride a tour we did years ago for our 25th this Sept. Oh well...

I definitely plan to consult both US and European doctors before making any choices along with considering fusion. (Which I'm pretty sure will be pushed by most US surgeons.)

I noticed you just had a big surgery. How are you feeling? How did you come to decide on the M6 and Dr.Bierstadt? Did you consult with him in person or by Skype?

Hi CDW,
I'm glad you found our vast family of supporters. I now exactly how you feel, because my pain was from full thickness tears in my bottom three lumbar discs. Something that was not visible on what three other docs (Orthopedics) called an unremarkable MRI. I didn't not have pain down my leg, so it was hard to stick to my guns about what and how I was experiencing/feeling. It would drive e nuts when each one looked at the MRI and would say, "Well, there doesn't seem to be too much going on here"...

While it is controversial, a Discogram might be something to consider. You can Google it and find more information. That's what found all three of my tears.

Good luck on your continued research. I chose to go to Dr. Blumenthal, at the Texas Back Institute. Even though I live in Florida. Others have gone to Spain and Germany.

Deb

Prolotherapy
 

Hi CDW321,


I'll give you info on the prolo as I hope it would work for you as the least intrusive procedure. Of course I'll share my experience with surgery, as many others will here as well. And the forum posters have a lot of very good info.


In 2003 I started having back problems, and I classified it just as that, back problems. From one specialist to another one I went. Xrays, MRI's and CT scans did show significant DDD but nothing specific as to why I was in so much pain. NSAID's didn't help. My rheumatologists started me on gabapentin, some relief, then to Lyrica and amitrypilene, more relief. I spent a lot of time at home sick and ended up researching what could be causing my back problems. Acupuncture helped but didn't last, the same with massage therapy. Somehow I figured needling techniques could work. In December 2005 I got my GP to refer me to the pain clinic and to a private physiatrist, a doctor J.D. Watson in Winnipeg. He was doing prolotherapy, I didn't know much about it other than it was a needling technique and I thought what the heck I'll do this until I can get into the pain clinic.
Despite the fact I thought Dr. Watson was a bit different, he was the best and most understanding doctor I have ever had regarding pain management. According to him, the theory behind prolotherapy is that the ligaments and tendons are so weak that the muscles must kick in to, in my case, support the spine. Since the muscles are always tensed they become overworked and sore. In my case it was my spine but the same is true, I'm told, about other areas in the body. He worked Tuesday to Thursday. I had my first session on a Thursday and was warned it would knock me off my feet, he was right. The one thing that convinced me that this could work was on the Sunday, as I was taking out the garbage, I noticed something completely different, at first I couldn't put my finger on it, then after a while I realized I was not with back pain. It only lasted maybe 30 – 45 minutes but that made up my mind to continue the treatment. He “worked” mostly on my middle to upper back which I think you said is where your pain is.
He started with injecting my with dextrose I believe, less than a year later he started to use sodium morhurate, then something he refereed to as P25G, every solution was a stronger irritant. The last session I had with him he hit me with the hardest thing he had and I walked out like nothing happened. Which is indicative that the treatment is working. The plan was for me to go in for a “tune up” every few months but he moved to Burnaby B.C. so I see another physiatrist at the pain clinic that won't do prolotherapy on me only trigger point treatments.
When I blew a tire in my lower back in 2011, well that's another story.
One more thing if you decide to try prolo. The injections are meant to cause inflammation that the body naturally fights off. High dosages of vitamin C was suggested during treatment. Sometimes the inflammation doesn't calm down. Normally the inflammation should reside in about 4 days but there were times my inflammation went unchecked for more than 4 days. What the doctor told me was yes that can happen, if it happens get back to the doc to hit you with lidocain. Acupuncture and massage therapy can also snap you out of a uncontrolled flare up.

Warning: prolotherapy can take a week or more for the inflammation to go down and the recovery time is generally 4 to 8 weeks for full recovery and growth. Lidocaine can lead to soft tissue damage, so it's best to try to use heat to help with the pain as much as possible.

Hi Anna,

The average time between my sessions was about 3 weeks. I believe my first and worst uncontrolled flare up was about 10 days and it was a close call as to whether to go back to the doctor or to go to emergency. Toward the end of my sessions even with the stronger solutions I bounced back much sooner.
What solution were you getting injected with?