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Is there any hope?
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oh_tinker_bell posted:
Hello everyone, thank you for taking the time to read this. My husband is 37 yrs old and has been diagnosed with Facet Joint Syndrome, Stenosis, Degenerative Disc Disease and 4 Disc Herniations. Family Dr sent us to "Pain Management". He has been seeing this Dr since October. He is on Percocet, and MS Contin twice a day. Hes doing Physical Therapy(which just seems to make things worse). He has been off work since October. He is unable to do the smallest things around home without being in agony . The Dr has done 3 different "shots" to try and get rid of the inflammation in the spine. He just had the nerves on the left side of his spine burned today and we go back next Tuesday so the Dr can do the right side. The Dr doesnt like to explain things to us, refuses to give us any explanation, refuses the idea of surgery. He straight out told my husband today that if this procedure doesn't work then he just has to face the fact that he will not be any better and will be on medication for the rest of his life. I'm not sure how "second opinions" work. If its something we should do. I feel helpless and we both feel lost. My husband is a Sheet Metal Worker, Dr told him to find another profession. It just sounds like the Dr is giving up and wants us to do the same. We dont know what to do!!
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TRS1960_1 responded:
I'm not sure how to best get a 2nd opinion either, but I would sure find out. Perhaps you can contact his insurance company and ask them? My pain managment doc just told me to see my orthopedic and a neurosurgeon so they could both have a chance to offer solutions and we (I) can hopefully choose the best one for me.
 
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cweinbl responded:
Hello "Tinker Bell." I have the same diagnosis as your husband (degenerative disc disease, disc herniations, stenosis, etc.). I've been living with severe back and leg pain for the past 39 years. I too tried pain management (twice). My pain also increased with physical therapy. Injections were useless and a rhyzotomy (what you call "having nerves burned) made my pain significantly worse. Four spine surgeries, including multilevel fusion, all failed. Since then, I've learned that spine surgery is only 50% successful in reducing pain.

Some people claim to have reduced pain as a result of injections and rhyzotomy. Many do not. Recent research seems to suggest that if injections don't help at first, more injections are also likely to fail. The same seems to apply to rhyzotomy ("burning nerves"). You should also know that the large diameter needles used in that procedure can create scarring (fibrosis) that might impinge a spinal nerve root, creating even more pain.

You ask, "Is there any hope?" I would be very surprised if additional injections or rhyzotomies will help. As I mentioned earlier, surgery has only a 50% chance of pain reduction. Has your husband tried accupuncture? TENS? Biofeedback? Bracing? Traction? How about off-label medications, such as Lyrica, Neurontin or Trazadone? Has he tried the most powerful pain medication (Fentanyl?) Fentanyl Transdermal allowed me to work 9 years longer than I imagined possible. If all else fails, he can try a spinal cord stimulator or a intrathecal infusion pump. Didn't your pain management doctor discuss these options with your husband?

A comprehensive pain management program will not restrict patients to injections, rhyzotomies and physical therapy. There are literally dozens of non-invasive pain treatments, including the options mentioned above and more.

If your husband has been though comprehensive pain management and has tried all of the major narcotics and all of the options and treatments, then there might not be a lot of hope. That is where I am today. After two pain clinics and virtually all options attempted, I am still left with chronic severe pain. I had to retire from my university career in 2004, at age 51. I must be horizontal virtually all of the time, yet I am still in severe pain. In retirement, I have turned to writing and in 2007 became published for the first time for fiction. Writing has become a second career and a catharsis for me. There are ways to remain productive, even with chronic severe pain. Attitude means everything.

In conclusion, unless your husband has tried many other pain management options that you did not mention in your post, you might consider finding a new, comprehensive pain management program. I would flee from doctors who are primarily interested in injections and rhyzotomies. I hate to say this, but it should be obvious - doctors earn a great deal more money from pain patients by injecting them than by trying non-invasive techniques, such as accupuncture, biofeedback, TENS, traction and with medications. If your husband's current medications aren't working well enough, try stronger medication (Fentanyl). Comprehensive pain management is much more than shots and physical therapy.

Good luck.
 
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oh_tinker_bell responded:
Charles, Thank you so very much for your reply! It was a huge eye opener. There were a few things that we had never heard of, what is TENS and biofeedback ? The Dr has once thrown out the idea of a pain pump, it was spoken quickly during a procedure. Exact words were, "well, if this doesn't work then I don't know, we will probably have to hook you up to a pain pump". Dr has no bed-side manner. He's very quick, in and out. He has changed my husbands meds (dosage) almost every time we go to see him. Husband is feeling pretty bad today, he was miserable last night after the procedure. We were hoping that it would work, but it seems like its worse now. He can't sit for more then 5 minutes, when he moves a certain way now he gets sharp pain in his hip that radiates down his legs(these symptoms were not there prior to the rhyzotomy). He tries to keep a good attitude, but its tough. He is to the point where he wonders"what do I do now". There isn't a job out there that he can do. Dr is asking if he feels like he can go back to work, and I want to scream at the Dr and say "You know what kind of meds he's on, and he still is in complete agony!! and you want to know if he thinks he can work, HELL NO he can't go to work! He can't even stand, sit or lay down without wanting to scream". I guess I am just frustrated. We don't want to tick off the Dr because he is the only one that is "helping" us right now, don't want to be left out all alone......Dr will not tell us what our next step may be. We are going to see our Primary Dr on the 20th of this month, maybe she can shed some light. We just don't know what to do anymore.
 
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freedom1960 responded:
OH Tinker Bell: I'm so sorry you and your husband didn't know how invasive, and to be honest, how crappy of a treatment rhyzotomy is. I've not heard one person say it worked for them. Most say it made them worse, as Charles said. He gives great advice and I'll second everything he said. Your husband needs stronger pain meds for one, and trying all the other non-medicinal options is a for sure also. Biofeedback, and other relaxation techniques along with powerful pain medications will help more than the injections and the "burning" of nerves. Don't allow any more of that. I did have injections that helped me, but I also had some that didn't. I had epideral injections that did nothing, which is probably what he's getting for the stenosis. But I then had what the doctor called "nerve root injections" that really helped. Now, most injections, as Charles said, work right away and if they don't, don't bother with more. But the nerve root injections I got took four to work. I was thinking they were worthless after three of them, not getting much, if any, relief. But then I got the fourth one and a couple of days later I was great! I'm not saying this is what your husband needs, but I'm saying that it did take me a series of four of this particular injection to work. I had the same injections, and it also took four of them in a different location of my back a year later and I got the same result.

It does sound to me like your husband is done with that type of work, and possibly work in general. I would apply for SSDI right away, while you try every trick in the book to control his pain. But the starting point for somebody in that much pain is strong pain medication, and onto other treatments. They don't have to be invasive to work though. I learned biofeedback and relaxation from a psychologist. Make sure the psychologist knows pain management though. A lot of psychologists are merely "Frazier Cranes" and merely "listen" and ask you "How does that make you feel?" LOL That's not who you want!

The best of luck, and never stop trying to treat pain! If something doesn't work, move to the next thing. It sounds like he will need permanent pain management though. And I'm sorry to say that will mean a lifetime of medications, among any and every non-medicinal treatment you can find. Mention all the non-medicinal treatments to his doctor(s). (The biofeedback and other relaxation techniques, and they will point you in the right direction with a referral, or two maybe)

Rick
 
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annette030 responded:
Ask your family doctor for a referral to another doctor for the second opinion. Take all your films, test results, etc. to the new doctor. Be sure you have a list of all the injections, procedures he has had so far. Do not tell the doctor what his current PM doc has suggested regarding further treatment or surgery.

I would not see a doctor who did not explain things to my satisfaction. Some people prefer that kind of doctor, they just want the doctor to make the decisions and tell them what to do. It is important that you and the doctor are on the same page about how you like to work together.

You might ask your state dept. of disability and voacational rehabilitation if they can offer retraining for your husband. Often all you need is a letter from your doctor saying you can no longer do your old job due to a disability or physical impairment.

Take care, Annette
 
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tonysgal7 responded:
yes there is, but your husband has to be patient. I too have what your husband has except only one ruptured disk. I have been down for five months and just recently starting to feel better after PT and epidural shots. I'm 52 yrs old. I have fractures down my spine and DDD and Stenosis and a ruptured disk. All the same. Yes, the pain is unbelievable, but it just takes time to heal. His back is very messed up. I was taking nothing but darvocet and motrin which didn't help. Only made it more barable to sleep. Rub tiger balm on his back. It helps. Also, if you have a jacuzzi tub, let him soak in that before bed. Have you heard of tenz unit? Ask PT or your doctor. That helped me. I feel his pain and am so sorry he is hurting so bad. If you don't like your doctor, find another!! You both really need to have someone who cares and will listen to you. And once again, give it time. I know it seems like he will never feel better. I was miserabley depressed. Then one day about a week ago I started to feel better. The pain was hardly there. I was able to stand for longer than 5 minutes. I was even able to bend without crying out. Now, a week later I know for sure I am finally healing and getting better. Let him heal, and then worry about his work and if he'll be able to do that job anymore. I hope I was able to help you guys some....God Bless! and feel better
 
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Brag9320 responded:
Get a second opinion from another Dr. I have been through all of this. I have had 5 back surges and 2 fusions. Do not give up hope! There is relief out there for your Husband. Schedule an appointment with another pain management Dr. set a date then call your first doctor and get copy of ALL his medical records, to take with you. And expect to have a lot of the test ran a second time. Then call a Social Security Dissabilaty Lawyer. Get on Social Security Dissability. Chances are he will never work again. (Like Me) I have had to have a Morphine Pump installed into my lower back. That just makes everyday life bare able. I'm not trying to scare you but I have been fighting low back pain since 1996 I have been through all the test, therapies, C-scan, Xrays, Milograms etc. But please talk to a lawyer about getting on Social Security. If you just apply for it you will be turned down. Get a Lawyer!
 
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Staceyrsd93 responded:
Dear Tink RUN fast as you can unfortunately I have been there! a doc that doesnt take he time to explain or gets irritated with questions is a quack! your husband needs a doc who has COMPASSION! I have RSD and ran the gammet until I finally found a doctor who tryed everything with me and wasnt afraid to prescribe pain killers Im on ms contin 210 mgs a day havent changed my dose in 12 years-some days i take 30 mg less- I was even able to have kids -to some I may sound like a 'junkie" ((bad stereotype)I assure you Im not my condition will never get better but I now have a life instead of crying and staying in all the time I can do things occasionally i even ski a few hours once a year(I do pay afterwards but for that few hours of fun its worth it) the pills enable me to have a life not my first choice but there is no other choice or thing out there yet that works for me I looked into stimulators did PT for 2 years bio-feedback hypnosis countless years of psyc therapy to deal with the depression that comes with the acceptance of this is now my life what do i do ...it could have broken my husband and me up i pushed him and everyone else away they dont understand he hung in it has been now 16 years we have 2 kids and a life I cant work -still have my bad bad days but once and awhile you have good ones listen to your gut find another doctor get recommendations look to support groups sometimes you get lucky that's how I found my guy -probably I have seen12 doctors till i found the right 'fit" good luck and tell this guy to eat nails see how he'd like to live like your husband! that doctors a jerk!! It sounds as though this will be a chronic problem for your husband dont get discouraged its a long battle In 16 years I can count in minutes on one hand when i have been pain free but the ms contin takes the edge off enough I can function mostly I know my limits and decide if the excess pain is worth what Im about to do GOOD luck to you guys stand tough with the doctors they work for you!there job is to get you better~!stacey far as i know there is no miricle beware of "cures" do research out there the key is to make it managable hense pain management
 
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nicecolo responded:
Hi Tinkerbell,

I agree with Charles completely. I too live daily with severe chronic pain and have for eight years. all the tens units, rhyzotemys, injections were worthless. I did have injections and they went systemic which caused me to end up having three surgeries and now have high blood pressure because the injections. please be very careful with these.

have been to many pain management programs. physical therapy does only increase the pain. it does not work. the only little relief i get is from medications. none of the other stuff works.

hang in there. you are a very understanding spouse. good job.
 
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60smom responded:
There is always hope. I am 65, and office worker and have had both hips replaced and back surgery to fuse the lower vertebrae and remove the herniated discs. I am back at work full time, although I do wear a light brace and keep my cane in the car at all times. Yes I still have pain, but not what it was. I can now go about life as I like. Don't be afraid of surgery. Find a Dr. that will talk to you and answer your questions. Then ask some of the patients in his/her waiting room questions. If surgery is suggested ask for names and phone #'s of patients who have had the procedure or maybe you will be lucky like me to find them in his office on a return visit after surgery. Before and after the surgery I wore a stiff brace called a turtle. This brace helped keep my back from moving and becoming overly painful. Check out everything as medications will not keep the pain away and you have to use more and more all the time. Don't be afraid, you can find an answer. Give your city and state in the e-mails - one of your replies will be in your city and state and will know of local Dr's. Good Luck 60smom
 
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srumbaugh responded:
There is hope, but not through your current doctor. I suffered from chronic back pain for over 20 years with it getting worse every year. I worked with nearly 20 doctors and none of them had the same opinion. I learned to ask lots of questions and take in any advice and information that "feels" right and reject everything else. Too many doctors get frustrated by chronic back pain and stop trying . If your doctor refuses to explain things, then ask him for a recommendation of a doctor that will. If he doesn't, find one anyway. I came from a medical family, so I was well prepared to navigate the medical system, but it took years to make any progress, then only slowly and required coordination and cooperation between several doctors with different specialties and from different organizations leading to two spinal fusions, dozens of minor surgeries, experimentation with various medications (different narcotic, anti-inflammatory, anti-seizure and anti-depressant meds), other treatment modalities (physical therapy, ultra-sound, acupuncture, chiropractic, massage, self-hypnosis, homeopathic , feldenchris, TENS, braces, injections etc.), diagnosis procedures (discogram, neurogram, MRIs, flex/extension x-rays, cats cans), and investigations into many new techniques (laser and rfi disc ablation, artificial disc, implantable morephine pump, electrical stimulation of spinal cord, new types of traction etc.). Eventually, I figured out the source of pain and how best to control it. I had retro-spondylothesis, broken pars, spinal stenosis, etc., but the most important information was I had neurogenic pain originating from two shredded discs.

This type of pain is controlled very well with Methadone, but morphine and other narcotics left me in agony (even at very high doses). I also found low levels of anti-depressants helped. If you use narcotics for pain control it is EXTREMELY for your doctor to prescribe a dosage that is taken multiple times a day to maintain a constant level of the medication in your system 24/7. That's the only way to get on top of the pain and stay ahead of it. If your doctor wants you to take it only when "you need it" find another doctor. That's what one of my doctors did and it caused lot's of problems. It takes more narcotics to get ahead of the pain than to stay ahead of it so you will take more than you need and you will continuously need more and more as you body becomes accustomed to the medicine. Also, you may get "high", loopy or nauseous doing this as the level of narcotics in your blood increases. If you maintain a constant blood level, you won't get high or be impaired in any way.

My spinal fusions stabilized my spine making it easier to control my pain with meds since the pain didn't fluctuate so much, but it still dominated my life. The pain continued because I had an old-style fusion technique where the discs are not removed. My painful discs were now surrounded by new bone growth and scare tissue making in accessible and possibly leading to more pain. If I had the more modern technique, I believe I would have been pain free after the surgery. Instead, years after my surgeries I was still in increasing agony and not able to work full time which was contributing to the failing of my marriage and my finances. Now, I lost hope.

Then, by the grace of God, I met Gary Spivey, who provided an energy/spiritual healing, which I didn't expect to work (no placebo effect!) but it did. It's been almost a year since then and I have been with out pain I have been able to get off my meds and I now work full time. His healing also helped my mind, body and spirit in many others making my life more fulfilling and easier.

Today there are many new Western techniques as well as the spiritual/energy techniques that eventually worked with me (check out Master Sha also). There's still lot's of hope and I hope you and others can benefit from my years of bumping into walls and get to your cure fast.
 
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GSDlover responded:
The other replies have given you a lot of good advice. I've been struggling with chronic pain for over 20 years. Medication has made it bearable at times, but when I have a fibromyalgia flare-up, strong meds like Percocet and Oxycontin don't give much relief. I still tell myself there is hope. The morphine pump is not an option for me because morphine doesn't work for me, but I recently read about a new implantable device that affects the pain signals to the brain. It's called an EON stimulator, which I'm currently investigating.

And do find another doctor. Yours sounds like one I saw many years ago. Terrible bed-side manor and little compassion. A real jerk. Also, be careful how you describe your response to pain medication. I have the tendency to say it doesn't work, when I really mean it's not as effective as I'd like it to be. If you tell a doctor something "doesn't work" s/he might discontinue the medication. That would be a disaster! The meds at least make the pain tolerable on some days.

Good luck . Please let the group know if you find something new and effective.
 
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LaLa1950 responded:
Hi Tink; I feel the pain of you both as this affects the whole family. I'm 58yo woman who has same diagnosis but more extreme plus severe sciatica on both sides-right to toes. But it's about your hubby now. As for 2nd opinions--NOT a neurosurgeon! I 've had bad experiences. Y'all need to do research online for your area or within distance you're willing to travel. Try an orthopedic 1st or maybe hubby needs to find a better pain management center/Dr. Unfortunately, finding a M.D. you like & trust is a matter of "testing" (that is if you have good insurance!) Back pain-even with proof it exists-is, to me, the most difficult issue a person has to discuss with a Dr. It's an abused complaint/many are labeled as "quacks", drug-seekers, malingerers, etc. etc. Go the Dr. with a list of ?s/paper & pen/ reasonable printouts or library books asserting symptons &/or treatment,etc. YOU TAKE CHARGE!! There are plenty of great pain MDs out there but its' become trial & error. Suggest: go with him (if possible) to next appt./have your list/do NOT take any more injections (they don't help & it's an easy $$ for Drs)/be assertive (not obnoxious or bossy)/don't have surgery--unless 100% nec./ if current meds don't help--DO suggest others. I've had this disease for 10-12yrs. & finally found a decent med (very inexpensive too!) after trying almost everything short of pain pump. If you respond to this I'll help you more but your husband cannot sit there & take MD info without speaking up. Effective health care has become a patients' job so if hes' willing- there are options. (PT can be done @ home to save $) Hope I've given hope to y'all Could sign out as "shorter by 4inches & 100% disabled due to DDD (deg. disc dis.) Lotsa luck! Linda
 
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freedom1960 responded:
I have to respectfully disagree with "60sMOM" on the "Don't be afraid of surgery" because the statistics are that back/neck surgery only help 50% of all cases and the mount of relief is also in question. Make surgery your last resort. Spinal surgery is very dangerous because the whole electrical system that runs your whole body's nervous system is exposed and one little slip, which is very rare, I'll agree, is all it takes to make you a paraplegic or even a quad. I have horrible back problems and have been told a few are inoperable, and there would be little chance of a good outcome in the rest of the procedures possible in my case. Surgery is the last resort, and if a doctor, even a jerk like your husband has right now, says surgery is not an option, take that to the bank. If one surgeon says it will not help, I go with the jerk. But i would agree that getting a new, compassionate doctor would help your husband's outlook, if nothing else. Like I said, there are many pain treatments that are no drug related and are not invasive that can work. I understand the one poster that said biofeedback and relaxation techniques did not work for them, because you have to be able to put yourself in that certain mind set that can be hard to get to without first having medication to dull the pain first, but then I can relax and lock myself in my office where it is nice and quiet, and work on my head myself. It was very hard at first, but the more and more I tried, the better I got at it. But, again, my first choice for acute chronic pain, which is what you're dealing with here, is very strong meds and then the other treatments. I will agree that PT did squat for me, and I even had my anesthesiologist come running out to stop me once, knowing the PT could have severely hurt me and even possibly crippled me as he had just looked at the results of my mylogram, which told him exactly where the problem was, and we fixed it. FIXED it!!! For years anyway. Now I have good and bad days with those particular vertebrae, but more good than bad. If i need to, one day I'll get more injections if my current regimen stops being good enough. And it did take me years to get the right combination, and I'm still working on it, but it gets better with every drug and dosage change.

Again, Best of luck to you and your husband!!!

Rick


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