L5/S1 Herniated Disc, L4 Bulging, Bilateral Sciatica all at
L5/S1 Herniated Disc, L4 Bulging, Bilateral Sciatica all at age 34...
I want my story to be known so maybe it can help someone else. Please feel free to contact me by e-mail- I WANT TO HELP ANYONE IN A SIMILAR SITUATION. Please excuse the typos, I cannot sit too long to reread & fix errors.
When things go wrong, most people say "at least you still have your health", not me unfortunately.
In 1985 I volunteered for the US Navy right out of High School. Halfway through boot-camp we were told to do as many regulation sit-ups as we could in one minute. I held my High School record for 73 sit-ups in 60 seconds. That's quite a feat, especially with me being 6' 7" tall. My back froze up & excruciating pain started after about 40 of them. The Navy did an MRI, said "you have a slightly deformed disc from birth so we have to annul your entrance to the service". That meant no benefits or anything. I was told I could fight it with a Navy attorney, but that would keep me stuck in Chicago/Great Lakes for at least another 6 months. I was 18, ignorant and wanted to go home- so I did.
Fast forward to Feb. 2001 after working as an EKG/ECG Technologist for 16-years and my hobby that whole time was collecting baseball & football cards. By 2001, I had donated over one million cards & over 1,000 personally obtained autographs to hospitalized children & never looked for, nor wanted anything in return. I was never financially "well off" by any means. No one ever handed me anything, I worked hard to be able to just get by comfortably and my hobby enabled me to do some good for others. I started getting moderate pain in my calves in both legs, more on the left. It was misdiagnosed in FL as simple muscle spasms from playing tennis. Three months later the pain was still on & off and now back
pain started just above my tailbone.
A sports medicine doctor ordered an MRI which I had to pay for out-of-pocket ($1,200). It showed a bulging disc in L5/S1 with an annular tear. Over the next 18 months everything was tried: trigger point steroid injections, two epidural corti-steroid injections, torodol injections, prednisone, every muscle relaxant & anti-inflamatory in the PDR. None of those provided more than a tiny bit of relief for a short amount of time.
I was pumped full of Vioxx, Bextra, & Celebrex and now have a 50% block in my RCA (major heart artery which caused two minor heart attacks).
I had to move back to my birth state (NY) to get Medicaid because I pretty much had to be homeless in FL to qualify. After 6 MRI's, a nerve conduction study, a discogram (which proved pain of "9 out of 10" at L5/S1), and physical therapy I now have a ruptured disc at L5/S1 (no jelly in between the discs at all) and a herniated disc at L4. Bilateral sciatica was diagnosed a year after the leg pain started. I'm officially "disabled" according to all my doctors & the state, but after being denied Social Security Disability THREE times, I'm still waiting to be approved WITH BINDER & BINDER AFTER THE FIRST DENIAL. I've been hospitalized over 12 times since Dec. 2002 for at least a week each time to get my pain back under some control. I was 1st denied Disability because "we could not obtain your medical records from 2003". That was the ONLY REASON I was denied... From what I've found - if you are not at least 55, they'll lie, cheat & steal to deny you over & over again.
I spent 8 months sleeping in my friends car (all throughout the winter) because I ran out of money completely after selling everything I owned that would someday be replaceable. My sports card & autograph collection was worth $50,000+. Now that's all gone. The personalized items that I had were in FL storage. I just lost sall that stuff a few months ago because I could no longer afford the monthly fee of $28.00, I just got by until then by selling on eBay. If it wasn't for eBay- I'd be dead by now. I've always had a high tolerance to medications which caused all kinds of problems with this pain & narcotics. I'm VERY careful with those meds because I don't want to become addicted to anything, however I cannot function without them. I went through every class of narcotic and am now on Methadone (not for drug addiction). In NY and a few other states, Pain Management clinics are using Methadone for chronic pain patients now. It was first tried on cancer patients and when that worked it went to people like myself. I get Methadone just like any other prescription at the pharmacy each month. IT DRIVES ME CRAZY TRYING TO EXPLAIN THAT TO MEDICAL "PROFESSIONALS" WHO HAVEN'T YET BEEN EDUCATED ABOUT THIS NEW BREAKTHROUGH USE FOR METHADONE...
Now Methadone doesn't work anymore! I was on 80mg TWICE a day for almost a year, then it was raised to 100mg & I finally said "enough already". It was stupid, but I stopped taking everything for two months and lived in a wheelchair & severe-excruciating pain EVERY DAY. I went through full physical withdrawal (which is different from mental withdrawal which I didn't have) from the Methadone which is worse than Heroin withdrawal as per all doctors I told about this. The withdrawal lasted 21 days. I ate NOTHING & did not sleep (not even 5 minutes) for 9 days. Until then I didn't think that was possible, if I didn't experience it- I wouldn't believe it. All I could do was drink a lot of water which came right back up. After 9 days I could eat a bite or two of light food for the next 5 days, but still couldn't sleep. I was awake for 13 straight days!!! Every cell in my body felt like it was exploding. I was constantly shaking. My taste buds sensed things all wrong, my body temerature always seemed drastically wrong.
Can you imagine all that WITH SEVERE PAIN (or worse) ON TOP OF EVERYTHING ELSE?
I truly don't know how I survived. I had no one helping me. My family is dysfunctional so they basically couldn't grasp what I was going through. So they pretty much ignored everything instead.
"WHAT DOESN'T KILL ME MAKES ME STRONGER"
I'll know if that's true over the next few years. They never did surgery on my back because the best Neurosurgeon I saw (at the Hospital for Joint Diseases in NYC) said "the nerve damage in your back & legs is too extensive. If we operate, it will be like blindly throwing a dart at a dartboard." But now a NEW Neurosurgeon wants to try a minimally invasive disc fusion with pins, but I don't have a stable place to stay to recuperate after the surgery. That's what I'm waiting on now. I'm also waiting to see a psycopharmacologist that the hospital just hired. I don't know why they didn't have him TO START WITH! He's going to try & find something else to control my pain.
Thank God I did not get addicted to anything- I was very lucky in that respect. I never did any illegal drugs or drank alcohol after I was 20 or so, plus I saw it destroy the lives of some childhood friends which helped me greatly.
Any suggestions or comments would be appreciated. Other than Medicaid & Food Stamps I'm getting no help at all. I'm now living in an unheated small basement room (better than the car at least). I even wrote Mayor Bloomberg & one of his pee-ons sent a list of all the places I already tried to get help from over a year ago.
I can't say that I have the same problem that you do other than suffering with pain and having a naturally high tolerance to any med's (as does my father). I really understand where you are coming from. As I said I don't have problems with my spine persay, but I do have all over, unexplained pain. The first problem I had was no doctors wanted to listen and when they did they didn't believe me when I told them I had a very high tolerance to pain meds. They basically laughed at me. An example of my tolerance is on a couple of occasions I have had blood clots in my legs and in my case it was extremely painful. After trying several other things with no avail the doctor gave me Oxycontinin (not sure of spelling). While on the oxy I got no relief, I actually couldn't even tell I had taken ANYTHING. I probably affected me like acetominophin affects others.
Right now the strongest thing the doctor will give me is vicodin es. I rarely take them because I as well am afraid of becoming addicted and when I do take them it barely takes the edge off so what is the point.
As far as your pain problem goes, I am sorry to say, I have no answers. I am writing more about your living situation. I live in PA and don't know what NY offers. PA offers housing to low income families and people according to income. In our area they are apartment complexes and some are very nice. Years back when I left my ex-husband and had 2 and 4 year old daughters I was in the position that I needed the assistance. I got a nice 3 bedroom, 1 and 1/2 bath, 2 floor house/apartment. Because they went by my income at the time I paid NO rent, I only had to pay my utilities. A good place to start for information on these programs in your area would be the financial aid (welfare) office. I found while going through the rough time in my life, this type of information is not freely given, you have to dig. It is always nice if you know someone who knows the system. PA also has low income energy assistance programs that could possibly help heat your room/apartment. As I said there are resources out there you just have to do the foot (phone) work and find it.
My heart does go out to you!!!! I know from present experrience, there is nothing worse than living with untreatable pain. Your world ends up revolving around it.
I hope I was of help to you and your living situation. As far as your pain I am very sorry I couldn't help. I just thought of something. I know I have heard of some type of pump that is implanted surgically. If I remember correctly its' purpose is for pain meds or some type of treatment of severe pain. If I happen to find any information about that I will forward it t you.
As I said, I do really hope things will fall into place for you. As far as your charity goes, hang in there I am a firm believer in "what comes around goes around" and charma. It may take some time but someday you will be repayed for your geneousity.
My name is Arrow and I post on the forum all the time. I am also a forum monitor.
I will be out of the country for a couple of weeks but when I get back I would like to send you two bottles of serrapeptase. It will help with your heart condition and it may also, hopefully, help with your pain. go to www.serrapeptase.info to learn about it.
If you send me a mailing address I should be able to get it to you by the first or sencond week in February.
Any suggestions or comments would be appreciated. Other than Medicaid & Food Stamps I'm getting no help at all. I'm now living in an unheated small basement room (better than the car at least). I even wrote Mayor Bloomberg & one of his pee-ons sent a list of all the places I already tried to get help from over a year ago.
James,
Have you tried dimethylsulfoxide (DMSO)? It could be something that will help your condition a lot. And you can get it cheaply.
I was able to get one through Amazon. You have a lot of choices and you can get a 4 oz jar for less than $5, with some going as high as $15. This one looks good: https://tinyurl.com/ytccus
If you try it, remember two important things:
1. Do NOT rub. It's not for massage. Just apply it over the approximate area of the trouble. DMSO goes through the skin in a few seconds.
2. Do NOT cover. DMSO binds strongly with water and covering the area can quickly dehydrate the cells. Not really a problem, because cells will rehydrate eventually. But it may be irritating.
(I'm a veterinarian who has used DMSO on numerous cases of dogs with complete hindlimb paralysis caused by herniated disks. They all recovered within a few days, one even after about 6 months of paralysis. I hope it helps you, too.)
So at least he heard of my idea. I sent another email to him telling him that there are other replies to his post and that he should visit the thread again.
I too have a herniated L-4 and was on oxycodone 10 mg 5Xday and oral morphine extended release 2X day. I had a cortisone injection last month. It did not work.
Since I moved to Mexico I cannot get nor do I want to continue the oxycodone or morphine. So I stopped cold turkey. Started using over the counter TRAMADOL 100 mg. twice a day. Danged near as good as narcotics. I also take an anti inflammatory, and tylenol.
DMSO WORKS FOR ME!!! It isn't a miracle and it only lasts for a couple of hours but IT DOES WORK. I seem to have back muscles near the herniation that spasm and bind up and the DMSO works on that.
For some stupid reason my bowel or colon really antagonizes the disc when it fills up even moderately. I use Polyethylene Glycol crystals plus another mild laxative to prevent my bowel or colon from swelling and causing agonizing pain. Magnesium Citrate drink works fast and well too.
I've got a 2nd degree spondy at L5-S1 that was greatly worsened two years by an auto accident. In addition, I ended up with a herniated disc pressing on the ventral cord at T9-T10. Before the accident I was pretty functional, able to do moderate gardening, backpacking, housecleaning, and most important of all - I was usually able to sit without pain.
But now, after the auto accident, it's different. The mid back drives me nuts with cramping / spasming / crawling / tingling LOTS of the time but worsening a LOT when I use my arms for anything - like typing, food prep, showering, driving, etc. And the lower back has become a MAJOR issue with any bending movement, sitting, walking on uneven surfaces, standing still, any slight twisting movement, etc., etc.
Without taking MSM I'm a basket case. Pure and simple. I prefer taking the powder in water although whether in capsule or powder form, I take 5-9 grams daily. When I don't take it for days or weeks, when I walk it feels like I have bruises between each vertebrae.
For me, MSM is like pure gold. I rarely take pain meds for fear of becoming addicted. Also, I always find a brand that uses "OptiMSM". That way I can be sure it hasn't been imported from China.
L5/S1 Herniated Disc, L4 Bulging, Bilateral Sciatica all at
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