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Chronic Back Pain for Over Half of My Life. I'm 23.

Started by NikitaYvonne on 04/19/2010 7:39pm

This is my first time visiting this site which I was referred to by my dr. I just had my first appt with a neurosurgeon today. I've been having problems with my back since appx age 11. There was no known reason for the onset but since it began around the same time as my patellar tendonitis, it was deemed 'Growing Pains', that I would 'grow out of it', and was dismissed. Being 11, I accepted that 'diagnosis' and went years wondering when I would 'grow out of it'. I tried seeing other drs. I had X-rays. Nothing. PT over and over. Nothing. TENS Unit. Nothing. I'm now 23 going on 24 next month and I just found out in Dec. 2009 what was wrong with me. And of course over all this time it has only gotten worse and the pain has been traveling up my spine little by little so now I have it all the way up to my neck.

So now I'm facing the probability of surgery, and I'm terrified. I havent tried shots or anything yet and I dont know if I will try that first or not. I think I may be beyond the range of that being helpful. I have 3 annular tears in 3 discs. Two are 1st degree, and the third is a 4th degree in my L5-S1 and from the discogram I had it is leaking atleast 30% of the way around my disc. I have some bulges/herniations and hypertrophy of the ligamentum flava from years (over half my life) of inflammation. It is chronic- no painfree periods. I was informed of it being genetic as well which makes me worry about my son.

Ive been to: 4 Orthopedic Dr.s, 2 Chiropractors, PT numerous times, A Spinal Specialist who ordered my MRI and I was once again dismissed because everything 'looks normal'. A PA at a different practice picked up on everything the so called Spinal Specialist missed. Yes, I am bitter with him. He didnt even seem to want to help me. He had a bad bedside manner. I think he thought I was just trying to score pills or something. I have NEVER gone to a doctor for my back asking for pills. I've only asked one thing, "What is wrong with me?! Why am I always in pain?" I've seen a Pain Mgmt Dr who did my Discogram, and now today my neurosurgeon.

Is anyone else dealing with these same symptoms? Why is this happening to me so young? I don't want to be in pain for the next 50 years, or however long I live. I've been in pain over half my life. I'm ready to wake up and not be in pain.

Please, help.

~Nikki

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11 Responses

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Hi Nikki -

I totally understand where you are coming from. I too have 2 herniated discs at L4/L5 & L5/S1. Both have annular fissures/cracks. I have seen 3 different Drs., and only 1 has given me any diagnosis... Degenerative Disc Desease. I tried all of the "Conventional" treatments. 2 epidurals or Selective Nerve Root Blocks, Facet Incetion, no relief from either. Started having SEVERE sciatic pain in left leg after the SNRB. In my experience, no Dr. is going to offer a surgical opinion until you have met/tried these useless procedures. Also being that I am in Human Resources & deal with Benefits, most Insurance companies force you to do the shots, PT, etc. before they will approve surgicaal options. In my case, my surgeon wants to perform a double lumbar fusion with instrumentation. Given everything I have read on this site & my own independent research, I have come to the conclusions that a fusion surgery at such a young age is one of the worst things a person can do. So many people have failed fusion surgery because Dr's rush to fusion for problems that will not be corrected by it. A fusion surgery will correct the mechanical issues with your back, BUT NOT THE PAIN. For me, I have elected to have a permanent Spinal Cord Stimulator implanted in my back. If you have ever been to a Chiro & been put on a TENS unit, it is the same thinng, but surgically place in your spine. It basically masks the pain signals as they travel up your spine & to you brain, so that the brain receptors manifest a "tingling" feeling from the effected areas causing the pain, but do not register the actual pain. Just a suggestion. Check out Medtronic.com for more information. Unfortunately, now that you have a beter idea of your actual issues, you will likely have to jump through the hoops of the "Conservative" treatments before anyone will present you with a surgical option. Just note... Fusion (especially at your age) is the absolute LAST RESORT. If you settle on a surgeon (and be thourogh in your search... 2, 3, 4 opinions) & they jump straight to fusion, go find someone else. Continue with the Pain Mgmt Doc. I am fortuate that I have found one that is very good, and thus have been able to deal with the pain for a year now while I tried the other treatments, and now have a surgery scheduled. You can also check out stimulator trials on You Tube. The nice thing about an SCS, is that you have a trial procedure B4 you commit to the permanent implant. It is like a test drive. I am too the point that I cannot walk without a cane, and have had to get a handicap parking pass. When I did my trial implant, the pain was GONE. Repeat...GONE. No cane needed, and was able to take about 50% less pain med than before. Hope that helps. For more information on different surgical & convetional treatments, check out centerforspinecare.com. They have an abundance of information & videos of actual procedures. It is the website of my surgeon. He has been voted Top 10 in Dallas for over 10 years in a row now. Good luck to you, and I hope you find help somewhere. None of us should have to endure neverending pain. Regards, BW

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Hi Nikki and BMW,

Nikki,
I do feel for you! I am 36 going on 37 and have also lived with chronic back pain for over half of my life. My back pain started at age 8. I was also told it was 'growing pains'. I believe my back issues were caused by a bad fall I had on my tailbone around the age 6-7. I have been to many specialist since the age of 18, when my back totally went out for over a month. I was bed ridden and missed school for a month because of this. At that time I was diagnosed with 3 herniated disks (2 major and 1 minor with an annual tear), DDD and Scoliosis. All doctors I have been too have not been able to determine if my scoliosis was from my fall or if it was developmental.
At the present time, I now have 4 herniated disks (3 major and 1 minor with annual tear), DDD, scoliosis (now have 3 's' curves including 1 in neck which affects my left shoulder and arm) and sciatica pain and numbness in both legs and feet. I also have bone spurs along my whole upper spine. I have been told I have the spine of an old lady. I have been through physical therapy many many times and have had spinal injections with no relief from either. When I was in my 20's each doctor I seen said I will definately need surgery at some point in my life, but felt I was too young to have surgery at that time. 2 years ago, right before I was laid off from my job, I was seeing a Pain Management specialist, who recommended me to a surgeon. I ended up going to a couple of other doctors to get other opinions. 2 of the doctors wanted to do a discectomy on 3 of the herniated discs and 1 doctor recommended I need a spinal fusion. Since I was laid off I could not afford the cobra insurance payments, so since then I have been without health coverage and have not gone through with surgery. I basically feel that my life is on hold until something can be done.

BMW,
I had wanted to ask you for your advise on working on a regular basis with chronic back pain? Before I was 'laid off' I had worked at my job for 13 yrs (11 of those years were as the HR and Safety Manager). The lay off was actually a permanent lay off. I was told that I was no longer needed and they told the state unemployment office that they laid me off. I believe I was 'laid off' because of my back issues, because I had started to miss a day here and there due to my chronic pain and I also believe because of all of my doctor visits. The new Operations Manager was not very sympathetic to my chronic pain. The last year or so while I was employed there were so hard because of my pain. I tried so many different things in order to get through each day. It was too the point it effected my ability to even think at work. To this day I am still looking for a job, but worry how I am going to be able to get through the day, as my pain has actually gotten worse. I can no longer walk at a decent pace and must slow it down and often walk with a limp. At times I get weakness in my left leg and feel the whole leg go numb. I also get quite abit of pain in my hips and groin. In the past 2 months I have actually resorted to going to the ER a few times because the pain was so bad. Since I have no insurance there is not much they do for me except give me a shot of morphine and muscle relaxer. My family doctor (he is the only doctor I still see for now for my back) prescribes me my pain medication, but said without insurance there is not much else that can be done. And with the economy in the state it is, jobs (I have to have a sit down job) are hard to come by. I just feel like I have hit a wall and not sure where to turn. Not sure what your opinion would be?

Well thanks for listening.
Rain

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HI Rain - Thank you for you response. I can totally sympathize with the pain & the work issue. I am fotunate to have a job (in HR Comp & Ben) that allows me to sit in an office for the bulk of my day. However, I do feel a bit scared sometimes because I am on ravel restriction & cannot fly. I work in a satiltte office in Dallas, but my Corporate office (where I report into) in located in NJ. My company was just recently bought out by a Large food & beverage manufacturer (don't want to say the name due to privacy rules on this site), and we are expecting a massive reorg in near future. If it was for the takeover, I think I would have been eliminated long ago. Iknow my current boss has NO sympathy fotr what it takes for me to get into a car & drive, sit, and work 8 - 10 a day in chronic pain. However, I made sure that MY HR rep had all od the medical documentation with respect to my situation so that if I were to be terminated, they had better cover allT's & dot all I's to ensure they are not in breach of ADA guidelines. Di you feel as though you could have a case if you contacted the DOL to discuss ADA discrimination? Would be worth a shot I think. Even though they may tell you that you do not have a case at the end of the day, at least it is worth a try. Have you though or tried to find a position that would allow you to work in an office setting vs. a plant environment?? Evr think about recruiting? This is something that you could do from home. Just an idea. There are so many facets of opportunity in HR, just being the Plant HR/ Safety manager does not mean you could not switch to a different specialty. For me, I am a technical HR person, and would not do well with a payroll system or excel spreadsheets. I am a data nered by trade... However, being open to diversification is important for someone in your shooes. Have you applied for medicaid.medicare? There are MANY genereican narcotic pain relievers that if your Dr. would be will to write the script, and not expensive to fill & would help you get through the day. Where are you located? Do you have any major universities in the area? A great thing about a university, if they offer a med program, is that they will take on pro-bono cases for the purpose of teaching, but can help you get the necassary surgery you may need at a faction of the cost, if any at all. If you would like to discuss further, you may email me directly at bmw1586@gmail.com.

Nikki - same for you. I have been researching these issue quite extensively for more than a year now, so if you ever have any questions, no matter how personal, please feel frre to contact me at the email address above. I am happy to help as much as I can. I just think that if we all band & work together, that we can get the answers we are looking for. Good luckto you both. Please keep me updated.

Thanks, Brandon

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Dang, that sucks. I'm 29 and I just found out that I have a herniated disc at c5-6. It's happened really fast and the pain is progressively getting worse. Now that I think about it, I've always had some pain. I am wondering the same thing---- is it just going to get worse and worse, since we're so young for this kind of thing? I do not want to have to take pain pill for ever! is there something that will make it go away? because i love working out and being active. These stories on here are scaring me. I will pray for us for a miracle!

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Sunny - I am so sorry to hear that you are having to experience these issues. Sounds like you are at the beginning stage, so not to be discouraging, but likely your situation will continue to deteriorate. My advice, find a well known neuro surgeon. Stay away from ortho specialist. Any doctor that says "straight to fusion", cut and run. Given your young age (not much less than mine), massive surgery like fusion will only lead to further complications down the line. Do not worry to much about the pain meds for now. Do what you must to get by & minimize you pain. However, research, research, research on other available treatments . Oh, and get many second & third opinions before you settle on a permanent doctor. I have faith in mine, as we have tried multiple different kinds of conservative treatments, but unfortunately to no avail at this point. I have settled on a stimulator instead of a fusion, due to the fact that a fusion may fix the mechanical issue with my spine, it is not a guarantee that it will relieve the pain in your neck & back. Good luck!!

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So sorry for your pain Nikki. Mine started at 16 and I just got surgery last month (April-2010).I am now 51. I have 2 brothers w/back and neck problems. My daughter is 26 and has had problems for several years. Doctors will always start with least invasive, and then move on. Of course, this leaves us hanging.and in pain. Your best bet is a Neurosurgeon. You have every right to be bitter and angry, but by now, they all (drs) should know your NO pill seeker. ASK for something, You cannot go on like you have been. Depression. Chronic pain causes it. (TRUE) If this surgeon says no to surgery, then try another. Get some pain relief, I am a big believer in medicine, it's out there, and sometimes the wrong people get it. Why? They cry and get angry. Get mad girl, you have every right. Also, my mother suffered for years and never went to the doctor.(just the way things were back then) As for your son, only time will tell. I have 2 sisters that got the lucky gene, both are now in their 40's and are fine. GOOD LUCK.

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Wow, I totally feel your pain. I am 25 years old and have been dealing with back pain since I am 15 years old. I had a baby last year and for the first time in my life I wasn't in pain while I was pregnant. I had to have a c-section and within 2 weeks of having my son my pain came back only this time it was so much worse. Somedays it was so bad I couldn't lift my baby out of his crib. Finally last December I went for an MRI and I have 2 bulges/herniations L5/S1 and mild stenosis. The pain has been so bad lately that I haven't been able to sleep. I have also been getting numbness/tingling in my right leg. I have done PT and that didn't help. I am so fustrated. I don't want to feel this way anymore. I want to be able to sit on the floor and play with my son like a normal 25 year old. I don't want to be like this for the rest of my life. I try and work out but when I do after I am in pain. I hope that we can help each other find something that works for the both of us!

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UPDATE:
I had my new MRI, X-rays, and CT-Scan on May 10th. The only thing is I won't know the actual results until late June when my next appt is. I have the discs the test center gave me to give to my Dr. and I have looked at them but I don't even know what I should be looking for. So that isnt too much help.
Also, In my attempt to try and be normal and do some gardening, I was kneeling (on a knee pad and kindasitting on my heels, ya know) and when I went to get up.... nothing. I couldn't get up. It's like my muscles were frozen and my legs were kinda numb (thats a given to kneeling though). I had been in pain the whole time I was gardening but I was trying to be focused on what I was doing. But it became too much and i needed to get up. I had to txt my fiance, who was in the house, and tell him I needed help. He had to pick me up- and even when I was up, it still took effort (and pain) to stand up straight and move my knees.
I do alot of things I probably shouldn't concerning my back. I don't like to have to ask someone to help me with everything. But is it good to be trying to do for myself trying to ignore the pain like I've had to do for so many years, or am I causing more damage?
Also, is there anyone out there in my position that's tried isokinetic treatment? I saw it suggested in another post and it seems like something a Dr. should have already ordered for me suring my many stents of PT.
-Thanks

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Hi Nikki, It makes me so sad to read your story. I am not as young as you but share your fears about being in pain for the rest of my life. I am 36 years old and have suffered back pain off and on since the birth of my first child at 23. In the past 2 years it hasbeen chronic with excruciating sciatica down both legs that can cause me to be unable to walk. I have been hospitalised 5 times in the past 18 months, have had a discectomy, seen numerous physiotherapists, undergone hydrotherapy, worked on my core strength and I am still suffering. I recently spent 3 weeks in rehab hospital after another hospitalisation. I am currently not allowed to sit down, or drive or get in a car. I'm sure you can imagine how hard that is with 2 children. I have two girls aged 10 and 14. Thankfully they are old enough to do most things for themselves but they feel angry and saddened that mum can't do much with them. My eldest has played soccer for the past 2 years and I am yet to see a game. My husnand is a huge help but he commutes to the city 1.5 hrs each way, comes home and has to do most of the house chores as well. It takes its toll on him and our relationship. My frustration is that inspite of my MRI clearly showing a disc bulge, degeneration of the spine, stenosis of the spinal canal and arthritis my neurosurgeon does not want to do any further surgery . This leaves me stuck taking huge amounts of pain killers, continued physio and to be honest I cant see an end in sight.
This is my first time on this site and would love to hear from anyone going through similar issues. It would be great to chat regularly with people who understand. I find my friends don't really grasp how hard it is and to be honest I think they are sick of hearing about my back lol!
Nikki you are not alone. I know many people have benefited greatly from surgery ( my aunt is pain free now!) and I hope that it is successful for you. I wish you the all the best for surgery and hope that it means an end to your suffering.

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Before I get started, please let me give some advice to the employed. Never ever tell your employer about your back problems!!! You will risk losing your job and your insurance. It happened to me. But I got smart. After changing professions to something easier ( I became a Switchboard Operator), I worked until I couldn't even answer phones and type. I had become totally disabled by my DDD and need for a fusion. Knowing this, I contacted Human Resources, applied for and got approved for beginning my disability insurance. Once that was taken care of, I came in just once more: to notify my supervisor and co-workers. I left work that morning feeling victorious. I felt much better than the day I was fired from the better-paying job. (After telling them 3 days prior I had a herniated disc.) Disability insurance pays you in addition to Social Security Disability, until the age of 65, up to a total of 60% of your former salary.
Now, for the gist of this. If you have DDD and arthritis in your spine, I wish you the best. There's no way to predict the progression of the disease, but given your youth, I worry about what may happen.
I was 39 when I was told I had spinal arthritis in 1994, I had a previous severe neck strain, and several lumbar strains. I needed L4-5 fused in early 2006. In late 2009 I was told I needed to have 8 more levels fused above and below. A month ago my surgeon did an MRI on my neck. The degenerative changes are so severe and varied I need to have this 2-part, 4 level fusion surgery, and soon.
As you can see in some cases degeneration can progress rapidly. A fusion can hasten that in adjacent levels, but can also be necessary for your spine to function properly.
Suggestions:
If you can exercise, DO! But know your body too. If simple PT exercises give you electric shocks down your spine so strong they make you curl into a fetal position, DON'T DO THEM! That also happened to me.
Keep your weight as close to normal as possible. I was overweight when this started.Now I am barely able to walk at all, even with 2 canes. I have put on even more weight, and it all pulls on my spine. I'm sure this also hastened my degenerative process.
You will love some Drs. and hate others.Change your Dr. if you need to, but expect to do so with some difficulty if you're on narcotics. If you can get to a pain clinic they are usually less afraid to prescribe them.Also most Drs. won't give them to you long term unless you've been seen by a pain clinic if one is available to you. It keeps the DEA off their backs. Still explore other options, like pain patches such as Lidocaine and Fentanyl. Haven't tried the latter but Ive heard good things about them. I use Lidocaine patches on a regular basis and I love them.
You may want to reconsider the chiropractor. If your ligaments are in bad shape and are not stabilising the spine adequately, you may do yourself more harm than good.
Regarding pain for the next 50 years.Whether you will or not is unknown. Ive learned it helps to take it 1 day at a time. You'll find you have your good days and your bad. Keep yourself distracted as much as possible during pain episodes - it helps. Also, you may be suffering from depression too. It's quite common. Meds for that are often helpful for pain as well.
By the way, don't expect your pain to go away after a fusion. It's definitely not a given. Especially if you've had chronic pain for years,it may never go away. Chronic, long-term pain can act in different ways than other pain.
One more thing about pain: Most other people will not understand how bad your pain is unless they have been through extreme pain too. It can be very frustrating, especially when some member of your family thinks you're exxagerating or a hypochondriac. I have tried to describe it a layers of pain.Mechanical pain on top of nerve pain, on top of muscle spasm pain, etc. Thank goodness for compassionate people, especially doctors. (The best Dr I ever had moved to the Boston area a while back. Dr Thomas E. Bozzo was the kindest doctor I've ever had, and I've had plenty. If you're looking for a good family doctor, look him up.)

God bless you, and good luck. (Is that an oxymoron, or am I? No comments!!!)
BJW

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Hello nikita my name is david and i too have had 14 years of terrible pain in lower lumbar 2 discs herniated, arthritus ,DDD, stenosis, sciatica, leg pains non stop pressure and leg trembling burning , toes on fire , etc, This is my first time on this site too and im at the end of my rope so to speak , im trying to cope with medicine, therapy, shots, patches ,biofreeze, rub, anything i can do to deal with the pain . ive been to several doctors they all seem to have god complex , and doubts about how serious my condition is, i cant sleep,cant lay on stomach, or back, i hafe to try to sleep in fetal position and that dont last too long without getting up and hobbling around the house in the middle of the night , i know what you are going through and i feel your pain wheeeww!!! anyway ive had mri,s x ray,s emg , shots in spine epidural, did nothing at all , and i too have seen surgeon he told me that he could replace 2 discs with cages but it wouldnt help with the pain and it would probably cause me more problems in the future . so here i am years later in same shape getting worse with the pain!!! i am seeing psycologist for depression and ive been to pain management specialist and she wont do nothing for me besides insist on more shots in spine, i am a minister and i pray for a healing all the time so i can get back to some what being normal, ive lost my wife because she couldnt deal with my belly aching, and my constant griping ,and most of all ive been out of work going on 3 years , and i cant provide for her the way a man should , im on welfare and finally got insurance card to help me out with dr bills, thank you lord ! anyway im in same boat with you hang in there your not alone ! i will keep you in my prayers your friend in pain lol david. Hope i gave you some relief by sharing with you my misery , your not alone! hang in there.

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