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Young Patients Treated Like Criminals

tommy22ttommy22 Posts: 2
edited 12/29/2014 - 8:06 AM in Chronic Pain
I just had to vent here. I've got a rare congenital spine condition known as Bertolloti Syndrome (feel free to google it). Because of this
my pelvis pulls around my lower vertibrae when I walk, and puts pressure on it when I sit or lay down. It didn't cause me much trouble until I was 22 years old.
I am 27 now and re-injured my spine herniating l5-s1 disc. Horribly aggravated by Bertolloti. Newest MRI shows two rapidly degenerated discs, bone spurs, arthrosis, and some other things I cannot
pronounce. Have sciatica for the first time in my life. My leg goes numb, sharp pains in my toes, and both of my legs are really weak. Hobbling around like an idiot.

Going for my second epidural steroid next month, in physical therapy again and doing all that I possibly can to stay active and recover. It's hard to
use a cane, I get weird looks. I'm in shape and not hard on the eyes, so people are confused "you don't look sick or handicapped" glance.

Despite not being able to sleep for more than 3 hours a night, moving out of bed with my wife to the floor to prop my pelvis up with a pillow... I am still treated
like garbage by doctors.

It's like pulling teeth trying to get medicated, and I'm still not. I'm thinking of taking to the streets. I don't know how I'm going to function like this with zero rest and barely able to make it up the stairs in my 3 floor townhome and struggling
to even put on my shoes.

Right now I'm looking into the process of expatriating to a nation with a decent standard of living and medical care that will treat me with compassion instead of like a criminal. It should be easy considering I am a software engineer with a background in Botany. I will drain my savings to do it.

I hope you all find relief, I will find mine one way or another.
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1

Comments

  • dilaurodilauro ConnecticutPosts: 12,402
    spinal problems never discriminate regarding age. You are never too young or old to suffer.
    There are so many members out here, late teens, early 20's with serious spinal problems, surgeries, etc.

    Its true, many times you dont look sick, so people sometimes have a hard time figuring out whats wrong with you.

    No question about problems with narcotics and younger folks. The over abuse of narcotics by doctors, by patients, etc created a major problem which the DEA has clamped down on. So everyone is questioned nowadays, especially the younger folks.

    One thing for sure though, any reputable doctor will provide the proper level of medications to their patients regardless of age.
    However, sometimes what the patient wants and what the doctor believes is just dont always match

    The system does work.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • I'm sorry you're in so much pain. Have you seen a PM specialist? I know its a process finding the right doctor and medications that work. What have they had you on in the past? What works? Do you have an updated MRI?

    Spinal Health Moderator 

    Retrolisthesis C4 of C5 and C5 of C6
    Spondylolthesis C5/C6
    Disc protrusions with Annular Tears C3/C4, C4/C5, and C5/C6
    Disc Material Compressing Spinal Cord C3/C4
    Severe Forminal Stenosis C5/C6
    DDD
    Ankylosing Spondylitis 
    Annular Tears L3/L4 and L5/S1
    Enlarged Facet Joints/Facet Anthrosis L3/L4/L5
    PLIF with Rods, Cage, and Pedicle Screws-L4/L5
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  • Do you live in the states, or another country?
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
  • I'm sorry you feel this way, it is a battle to live with pain. I have found some comfort in having a heating pad in my favorite chair when watching tv and at my desk at work it relaxes the muscle and lessens my back pain. If your doctor has prescribe anti-inflammatory those really help with inflammation pain. I also have a electric blanket when I'm in bed so when I wake up my muscles aches are gone. I take all prescribed meds on time too. Deep muscle massages help as well. I also soak in a hot tub. All of these tips lessens the pain and distracts your mind. I can relate to everything you said and your mri's are proof you need a medical intervention, keep looking and ask friends or family for suggestion for a compassionate surgeon. Good luck :)
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • I'm 16 and it took forever to find a doctor who believed me. I have found that looks can be deceiving. Have your pain docs given any other treatment suggestions and if so have you tried them? I'm sorry your not having any luck, keep trying! It's all about having a doctor who listens to you!
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  • sandisandi Posts: 6,269
    edited 12/30/2014 - 4:04 AM
    is that in the beginning of any treatment with a medical condition, whether it is chronic pain or high blood pressure or cholesterol, your doctor is going to start with the most conservative treatments first.......It is that way with almost any medical condition, with few exceptions.......
    If your blood pressure is too high, they are going to retake , and retake your bp , advise you to reduce your salt intake, get physical excercise, try meditating, reduce your stress levels for several months......if it is high cholesterol, you are going to be told to change your diet, get some excercise, walk, reduce your fat intake, etc...
    Conservative, least invasive treatments are going to be recommended FIRST........then if those fail, the doctor will make further recommendations for treatment, draw more blood or do more testing to confirm the diagnosis, and start with the least complex medications........it is only when those methods and interventional treatments fail, that they start with more aggressive treatments and protocals.
    Every patient who has spine pain has had to go through the more conservative treatment options first, some of us several times, physical therapy, injections, TENS, neuropathic medications, muscle relaxants, ice, heat, consults with surgeons, more testing, more imaging, and in some cases surgery, before medications such as opiates are considered.
    Is it frustrating waiting , yes, it is, at times, but part of it is because most spine pain resolves on it's own or with conservative treatment, and part of it is the medical standards, part is insurance.
  • shouston7sshouston7 SOUTH CAROLINAPosts: 34
    We all understand how it feels to be in so much pain , we hurt for you! No one can see our ailment on the outside. I am so sorry that you are hurting and are feeling a lack of empathy.
    Have you tried taking OTC sleep aids to help, It's not much I know however sometimes they can help a little. Not sleeping will wear you down I know, and if you are having the nerve pain at night its a constant moving position trying to get relief. My nerve pain is still a battle, but under much better control since my Spine Pain Dr. put me on lyrica, it has been a huge difference in my pain at night. Pain is pain whether your infant or old. Vent here all you wan,t we get it! Hope you get some relief soon!
    S. Houston
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Amen about what you said going through the most conservative options first! This is true in all worlds but we get most frustrated in medicine and we want that pain gone now! When I was younger, and my injury happened when I was 8 years old so younger can go way back, but I wanted the biggest, fastest, strongest immediately!

    Now that I am less young (still young but less young!) I understand why medicine is so conservative! To me, it always seemed like I was getting another prescription to physical therapy or told to walk more. Now I know that doing PT, and I mean really DOING it like even at home when no one is watching, can be very helpful. I had neck PT for several months. It didn't take away the pain but it helped with my posture and helped with other issues.

    I've had 2 surgeries, one in 1998 and the next in 2008. Now it's 2014 and I'm battling another because, as doctors tell you, they don't always work and often they are a gate to the next problem! I'm really not into needing surgery every few years!

    Additionally, I'm on my first trial of long term narcotics. I know that these are not curative. They take away my attention to the pain but the condition remains. As soon as my pain is under control (I never knew of such a possibility before) I plan on going back to PT and trying everything else I can so I can strengthen my own body so meds are not necessarily "forever".

    Labeled as having "chronic intractable pain" makes me feel very mortal. I don't want to accept limits. I still wish those very conservative options had been the "cure".

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • I've been dealing with chronic pain for 8 years after a car wreck I had. I use a cane sometimes, and I'm only 29, and look healthy. Sometimes the pain is so bad I can't move, and people don't understand. Dr's have treated me like I was committing a crime for telling them I hurt, and was told for years by my original Dr that I was fine. I recently took the dreaded trip to the Dr after not being able to stand up at all, and this new Dr seemed to care, and sent me to a pain clinic. I got the painful shot and hated it, and it made it worse, now I M on lyrica (which I just started). I have yet to have a perfect day, and I hate it when people stare at me. I walk with a limp, and have for years. Sometimes people notice it a lot, but people who know me don't even notice, it has become my norm. I am a roofer, and a female, and people say to quit my job, but I refuse. The job I enjoy, and I've had the pain way longer than the job, so I figure if I am in pain anyway, I might as well enjoy my job while I can. It is very hard being young and in pain, I know all to well. Keep looking for a solution, and if you need, consider new Dr's, that finally seems to be getting me at least heard (either that or I'm getting old). Self medicating is NOT a good answer, trust me. I hope u find something to help you, as we all deserve to have a pain free day at least sometime.
  • WOW! When I read your post, I thought it was one of my old postings! I too have bertollotis syndrome, I am 28, been suffering for maybe 4 years now. On top of the bertolloti's i fractured my vertebrae between L4 and 5, I was injured on mission while in the Marines in Afghanistan.

    I have been treated with suspicion and outright treated like a junkie! I too look to be in good shape, I still have a decent build from the Marines which I was medically retired from about 2 years ago or so. It's the most depressing and infuriating thing to have not just the doctors look at you like a drug seeker, but the receptionists, nurses, and PA's. I am always self conscious of how I am looked at now, I have a cane I use around the house in the mornings or flare ups, occasionally I take it out but get looks because I appear healthy.

    Fortunately, I have a doctor that will prescribe the needed pain medications, both opioid and neuropathic pain killers, I have been on them for maybe 3 years, haven't had any problems with them but even still, it doesn't stop the body language signals from everyone from the receptionist who hands me my monthly hard script to the pharmacy techs who receive it.

    After years I finally found a very reputable surgeon who is willing to try and fix me, or maybe get me back to where I don't have to take the big bad wolf meds that all the media and special interest want to ban. I'm sorry, I know this is callous, but seriously if someone is going to abuse their meds, then that's their issue, but don't make legit chronic pain patients REGARDLESS OF AGE have to suffer and jump through increasingly more hoops to get what they need.

    Tommy, you and I are in 2% of us population, maybe less bc of our ages, but my surgeon and a pain doc I talked to said they treated someone about our age who had it and they did a resection surgery and fusion and he said she is doing great, zero meds, and has a decent life. I know it's anectodotal evidence, but I'm just saying that there is hope for us. It's hell I know, I hate it and I resent the many in th media, poltics and special interest organizations, and medical community who think everyone who has opioids or needs them are drug addicts or drug seekers.

    My advice, be tactful but firm and tell your doctor what you need, if they don't want to help you then go find someone with empathy who will. This is what I did, and it worked, I still do all the PT, TENS, yada yada, but our condition in particular doesn't respond to much other than meds and surgery.
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