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damgalnuna
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/3/2010 8:16 PM (GMT -7)   
I suffer from chronic low back pain and sciatica caused by two herniated discs -- L4/L5 and L5/S1. I had a fusion and rod implantation for scoliosis in 1992. I first herniated a disc in dance class in 1996 (and my doctor said it would be okay to take dance classes). I had a partial removal of the rods since the doctor thought they were contributing to the pain in early 1997, which didn't help. I then had a microdiscectomy in late 1997, which reduced the pain for a while, but it eventually came back. In 2000 I became so fed up with my doctors that I gave up and stopped going and stopped all my medications (stupid and really not fun, I know). I dealt with it on my own until the fall of 2008, when the pain suddenly increased. I believe the strain of caring for and carrying around a toddler caused my disc problems to worsen. I have been seeing various doctors since then. First I saw my primary care doctor who prescribed tramadol, PT, and a TENS unit, which was only mildly helpful. I was then referred to a physiatrist who prescribed neurontin, and then switched to lyrica and codeine. He also tried selective nerve root blocks, which only decreased my pain a bit for two weeks. I was then referred to a pain management physician, who now has me taking tramadol, lyrica, baclofen, and vicodin. The first two are taken no a set schedule, and the last two are as needed medications. He also had me try PT again, aquatic therapy, acupuncture, and trigger point injections. My pain level has actually increased over the past year, since I began seeing this physician. Getting him to listen to me and realize how bad my pain is and to get him to treat my pain sufficiently has been impossible. I can no longer handle many child care tasks, and thus miss out on time with my daughter. I also can't handle most housework, which causes my husband to have to work that much harder. I'm also having a lot of trouble functioning at work, and have been missing a lot of work due to the pain.

My questions are: Are there any treatment options that you know of that haven't been tried yet (not including surgery)? How can I get my pain management physician to listen to me and to treat my pain adequately? I'm willing to try just about anything because I can't go on living like this. I'm only 30 years old, and the thought of how I'll be in 10-20 years terrifies me. It's hard to imagine making it that long without going completely insane and/or becoming completely disabled.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 8/3/2010 10:19 PM (GMT -7)   
damgalnuna

First off I want to welcome you to the healing well chronic pain forum. You sound like you have really had a hard time of it, I do not blame you for being frustrated, nobody likes to be in pain and see their capabilities slowly dwindle away from them. I think first off you need to just sit down with your pain doctor and litereally tell him everything you have told us! Be honest with him and tell him that you are not satified with what has been going on, and you are still in lots of pain, and how you can nolonger do certain things with your child, everything you have told us. Remember he is working for you! You hired him, he is getting paid one way or the other by you! Tell him you want relief from your pain, and you want him to figure out a way to achieve that. He is a pain doctor he should know how to do that. And in the end if you still are not getting adquate pain relief, then go to somebody else that can help you! You should not have to live like that! Maybe you need to have more test done? EMG studies or MRI or what ever, my pain Doctor orders all those test, to find out what is causing the pain and the best way to treat it!

I am sure that many others will come along and have advice for you, but just remember, damgalnuna, your not alone when your here at this forum, we all know what it is like to live with chronic pain, and if nothing else come here to vent your frustrations, we will listen and give you support! I think if you stick around you will find that we have some of the most caring compassionate people you will find anywhere on the internet right here at this chronic pain forum! I am sorry you are in such pain but I am glad you found this forum!

I do wish you well!

White Beard

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4643
   Posted 8/4/2010 6:09 AM (GMT -7)   
Damgalnuna -
Welcome. I sympathize with the picking up the toddler pain. I'm a grandma and get awful pain from babysitting (picking up 30 lb 2-year-old) - several days a week.
White Beard had a lot of gret suggestions. Getting checked out to see where pain is coming from is essential!
I take tramadol for my muscle pain from fibromyalgia and it helps the spine pain too. I got into trouble with serotonin syndrome though, when I was put on the extended release form! I tried Lyrica and gained 1/2 pound a day, switched to gabapentin - nearly the same thing. But got serotonin sx when that was mixed with the tramadol too (not as bad). I found I was better off without L or gaba! I take vicodin only for severe pain - like surgery - because it stops working after a month or so and I'd have to increase the dose. I refuse to get addicted!!! Tramadol is tricky - it interacts with hundreds of drugs. You can check at drugs.com. I'd be suspicious of baclofen interaction. I don't tolerate most drugs - throw up with codeine,
I won't try acupuncture after reading a few scientific papers that said it doesn't really work except as a placebo. Some people will disagree because it's worked for them. Don't do chiro! It could cause paralysis.
I've also had lots of PT, don't go anymore but do the core strengthening exercises on my own at home. Saves time. It doesn't help for a long time but could keep things from getting worse in the future. TENS didn't help me either. Injections used to work, not helping anymore. I'm going for another MRI tomorrow. Really don't want surgery unless it gets intolerable or dangerous as in cauda equina.
Best wishes.
Alcie
 
 

damgalnuna
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/4/2010 7:08 AM (GMT -7)   
I have had an MRI, which showed two herniated discs, one of which is actually torn a bit. Those two herniated discs are consistent with the location of my pain, so they assume that's the cause. There aren't any good solutions that I know of for actually treating the problem instead of just the symptoms. Having already had three back surgeries, having another would be risky, and fusing that part of my spine would result in me having a completely fused spine, which I understand isn't a good idea.
Scoliosis fusion w/rods - 1992; herniated disc - 1996; partial removal of rods - 1997; microdiscectomy - 1997; sudden increase in pain - 2008; since 2008 I've tried the following non-pharmaceutical treatments: physical therapy, aquatic therapy, TENS, acupuncture, trigger point injections, selective nerve root blocks; other diagnoses: depression, anxiety, add; current medications: tramadol, lyrica, baclofen, vicodin, welbutrin, ativan, ritalin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 8/4/2010 8:42 AM (GMT -7)   
Hi Damgalnuna and welcome to Healing Well's chronic pain forum. I am very glad that you found the forum but so sorry that you have to be here. But, as you will find here there are many of us just like you, suffering with CP. That may or may not give you a little comfort, suffering in silence is no good for anyone. Having a place to come and vent, talk or ask questions can be helpful. None of us here are drs so we cannot fix you but we can give suggestions and tips. and lots of compassion.
 
You are way too young to be traveling this path, but now that you are there are things you can do and you have more control than you realize. It is real easy to get disgusted and frustrated especially when it come to drs that do not listen. When you have a dr that is not listening then it is time to kick him to the curb and find one that will. That is not uncommon at all, many of us have gone thru a few in an effort to find the right one. Its called advocating for yourself. As WhiteBeard says this dr works for you, he should be listening to what you are telling him that is going on. I think going back to PT will only rear up more pain, that seems to be what has been happening to our folks on here that have already been operated and and all of a sudden the drs are saying oh, lets give PT another try. Well, they end up worse off. Ask WhiteBeard about his experience just recently with PT.
 
Three back surgeries is a lot for anyone. You are right when you say no more, I don't blame you a bit. I think WhiteBeard was asking if you have had any new MRI's since all of your surgeries to see if anything new has cropped up. When people start down the PM road all these guys are going to do is various procedures like blocks and eppies and trigger points and that sort of thing. The next is finding a medication or a combination of medications to lessen your pain to a more tolerable level.  You must get the pain cycle broken in order to get some relief. You have to stay on top of your pain and not under it. If your pain is constant then a person has to stay on the pain medication around the clock on a schedule. This is the only way to get things simmered down. You can't take a pain pill at 8:00am that is a 6 hr pain pill and not take it again for 12 hours, you take it every 6 hours or however it it written to be taken. Why hasn't your dr put you on a long acting pain medication and another pain medication for break thru pain???? From what you are describing you really need to be on something like this, not vicodin. Again, I am not a dr but I don't think you are getting a fair shake from your dr. That is all PM can offer. If you are having a lot muscle spasms going on trigger points are sure worth considering. That kept me going for a very long time when dealing with severe spasms. If you have already had a heart to heart with your PM dr and he is not listening then your only recourse is to find one that will. I am not sure talking to him again will do you any good. Always remember, even with CP you are entitled to quality life and that is something you don't have right now. Obviously with all the surgeries you know your limitations, but you can still have a life and be able to enjoy your child.
 
One thing I would like to point out is there are two types of PM drs out there. One will do procedures only and no medications. The other will do procedures and rx meds, so be sure when looking for a new dr to always call and ask the receptionist if the dr rx'd meds if he feels they are necessary. This will not make you look like a drug seeker either. Just tell her/him you know some drs do and some don't. Something you might consider is if your health insurance is online and you have access to them, go online and check out the PM drs in your area to see who is on your plan and who is taking new patients. Most all PM drs want a referral from another dr, your PCP should be able to handle this. Also, some PM drs go under the heading of Physical Medicine-check into that. You know your dr better than any of us here so it will have to be your call on whether or not you find a new dr.
 
You asked in another thread about obtaining your medical records. Yes, most of us do keep a copy of our medical records for our own personal use. I just keep mine in folders by the year in chronological order, thats it. I don't try to scan them into my computer or anything like that.
 
I do hope that you will keep posting and continue to come to the forum. Others will pop on here and say hello and welcome aboard. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/4/2010 9:10 AM (GMT -7)   
 
  Dear Dam,

     Good morning. My name is Dani and it is very nice to meet you. I am glad you found the Healing Well Community. It is a wonderful place for resources, knowladge and support.

     I have adult onset progressive scoliosis. It spans a rather large section of my spine. It began when I was 27. I am 30 now with multiple curves. I began a singular curve (10 cobb) in lumbar. Now, I am multiple curves. Primary progressive levoscoliosis T10- SI (50 cobb). Secondary T4- T9 (15-20). "Possible" presentation in my C spine. Of course, all the usual suspects that come with it, sclerosis, stenosis, narrowed space, facet arthropathy.. you get the idea. I am sure you know all to well what accompanies spinal deformities.

     I understand the multiple "types" of pain that come with scoliosis. I hate that there is one pill / treatment for each "type" of pain, and it is frustraiting to no end! We are literally expected to just take our meds, and try to pick up the peices of our lives. Just between you and I... you would think they would have advanced in treatments with so many people suffering with some form of curvature of spine. Arthritis, disk degenration, age related, adolescent onset, idiopathic... MILLIONS of folks, yet the treatments are still archaic at best.

     As you well know, many problems arise with rods. Most notably herniations, arthritic degeneration, disk degeneration. There have been remarkable advancments in stem cell technologies, but even that, is still in early stages of development. Very little can be done. Aside from revision....

~~> http://www.scoliosisjournal.com/content/3/1/9

~~> http://www.scoliosis.org/

     I too have rather young children. My chores and mother duties are done in rather unique ways. My husband and I spent an entire summer re modeling my home. Here is a post about what I did to make my environment easier to manage.

 
      The only thing I can suggest to you, at this point.... Is to try to make your home life as easy as possible. Change the things you and your child do together for closeness time. My daughters and I have many "sit down" activities now. Sure it isnt riding bikes or camping... but really they just want time with me where they have my undivided attention. I can only do so much physically so I have to be creative with games, projects and outings.
 
     Early on when they suspected that I was progressive... I was sent to a pain psychologist. This was done so that I could understand that I would be in pain the rest of my life. I had to "re-build" myself from the ground up. It was alot of hard work, and at times, seemed impossible. Who I was, what I liked, my hobbies, how I lived my life, my goals, my parenting...... behavioural therapy is frustraiting at first, but worth it.
 
 
     Most of all I want you to know that you arnt alone. I know parenting presents chronic pain patients with... endless obsticles. It isnt like we can "Call in sick" as parents. No matter how we feel or how much pain we are in, we have to tend to our children. I dont have family of my own so I have to be creative. Also, I rely heavily on our local community center for activites that I can't physically do.  "twinkle toes" (toddler ballet), "tiny tumblers".... you get the idea.
 
     I am sorry. I get chatty on my morning off! Hehe. It was very nice to meet you. I look forward to knowing you better as time goes by. Stay strong.
 
*hugg*
   dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

damgalnuna
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/4/2010 10:01 AM (GMT -7)   
Thanks again for welcoming me and providing so much good advice.

Straydog: When you say long acting pain medication, which medications do you mean? I take the tramadol and lyrica 3x/day, but the baclofen and vicodin are as needed (in quite limited amounts, actually). My PM doc had only been allowing me to take the vicodin 1x/day, but I recently told him that when I have a bad flare up (which has been a lot recently), that leaves me deciding whether to be functional during the day at work or in the evening when taking care of my daughter, which I don't believe is a fair decision to have to make. He changed my prescription to up to 2x/day, for a total of 50 pills/month. We'll see. But you're right, something long acting would be better. It's hard to control the pain once it starts, and I'm always afraid to "waste" a pain pill by taking it in anticipation of pain.

I had an MRI taken a little under two years ago, which was long after all the surgeries. The MRI was ordered in response to my having a sudden increase in pain, going from being able to manage it on my own with ibuprofen to barely being able to move. That showed the two herniations and other degenerative problems. I'm sure the results would be a bit different now, but I'm really not sure that they'd find out anything that would change their treatment options.

Dani: Thanks for the information on managing home life. I will definitely take a look at your post on the topic.

I have seen a pain psychologist who is part of my PM doc's practice. My PM doc requires all of his patients to see the pain psychologist before starting a treatment plan, and additional visits are up to the patient. I'm starting to think that scheduling another appointment with her might be helpful.

I'm glad to have found a place when I can chat with other people who understand what I'm going through. Many of the people in my life really don't understand, or just keep their distance because they don't want to deal with it. I end up feeling very along much of the time.
Scoliosis fusion w/rods - 1992; herniated disc - 1996; partial removal of rods - 1997; microdiscectomy - 1997; sudden increase in pain - 2008; since 2008 I've tried the following non-pharmaceutical treatments: physical therapy, aquatic therapy, TENS, acupuncture, trigger point injections, selective nerve root blocks; other diagnoses: depression, anxiety, add; current medications: tramadol, lyrica, baclofen, vicodin, welbutrin, ativan, ritalin

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/4/2010 2:07 PM (GMT -7)   
about the only other thing that could be tried is Rhizotomies, were they insert a needle and burn
the nerve roots they think are causing your pain, usually they do this with steroid injections, but I have
sensititives to steroids and they can't use them like they would like to...and 2 years on the mri's are considered out
of date or old. So maybe newer mri's ones with contrast...and you might want to consider a long acting
medicine like straydog/susie said in her post...a lot of doctors have stopped using vicodin due to the
amount of tylenol in it, I was switced from vicodin to norco this past year becareful of not mixing any other
tylenol products with the vicodin, get bloodwork done for liver problems..I would say that once your child
starts school things will go better but sometimes things get harder as you'll have to do parties and such...
(sorry about the typos I'm tried today had to go see my rheumy) My daughter is now in University
and things are supposed to be easier except when we have to move her in and out of her dorm room,
plus it's a 300 mile trip one way...and I can't always do that....once school starts your the offical
Taxi driver...(lol)....soft healing hugz to you...

(Norco is Vicodin with lower amount of the tylenol, just a side note)
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Post Edited (Chartreux) : 8/4/2010 5:26:58 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 8/5/2010 3:15 PM (GMT -7)   
Hi Damgalnuna, sorry I wasn't more specific, I was talking about a being put on a pain medicaltion that is either extended release or long acting, meaning something that lasts anywhere from ten to twelve hours. However, most of these medication really do not last that long, many times it ends up being about 8 hours. By doing this it helps eliminate the peaks and valleys of taking pain meds every four to six hours. In addition to these long acting medications they also prescribe something for break thru pain.
 
I am not trying to be judgmental here or act like a dr by a long shot, my experience comes from dealing with CP over 20 years. I have been to every kind of dr coming down the pike, kicked many to the curb, have tried or taken just about every medication out there, done more physical therapy than the law ought to allow and then some and lots and lots of injections. Either your PM dr is either very, very conservative, possibly does not have a lot of education when it comes to pain medications or he is not believing you on how bad of shape you are in. It is not uncommon for these PM drs not be that educated either in medications. Most of these guys are anesthesiologists turned PM and they do not have the education or experience they really need to handle PM patients. Their real knowledge is knowing what drug and how much it takes to put a person out to have surgery.  It takes many years to become a good seasoned PM dr and they are not all created equal by a long shot either.
 
We have a section here called CP101 and in it is a pain diary/journal and many members have printed this off and documented what their pain is like on a daily basis. Depending on what you are going to do about your dr, you may want to consider printing one off and taking it with you to the next appt and insist that he read it.
 
I must commend you for being so young and have gone thru the rough surgeries that you have and you are still working and trying to have a normal life. Do I think you are getting proper pain management, no I don't. There are so many different kinds of medication available for chronic pain but yet your dr is giving you what a PCP would hand someone that walked in and said I woke up this morning and I have back pain. Shame on him for doing this to you.
 
I do hope that you get the help you deserve.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/5/2010 5:10 PM (GMT -7)   
Damgalnuna...

Hi; welcome to the board - but sorry for all you are going through! I'm 37 and have been dealing with health/pain issues for 7+ years... and have wondered the exact same thing that you said - "Where will I be in 10 to 20 years?". It's scary, I know.

I absolutely agree w/ what the others said here - you need a doctor that WILL listen to you and adequately treat you. There's so many options out there these days to give someone a certain quality of life, even while dealing with CP. I really agree w/ what Straydog wrote above to you - it sounds like you really need to be on a long-acting (LA) medication with something for breakthrough pain. (Again, I'm not a doctor.... but have been through just about every experience, medication and so forth... and, along the way, have been very well-researched in the area of chronic pain; unfortunately, sometimes more than some medical professionals I've seen over the years). What a LA medication does is get you on top of your pain so it doesn't have so many peaks and valleys.

Is finding a new doctor an option?

Re: medical records (saw your other post) - I do keep a hard-copy of all my medical records. It's a HUGE amount; I mostly organize it by year.

Take care; glad you are here and hope you keep posting and reaching out to others for support.
--Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/5/2010 5:19 PM (GMT -7)   
Hi Damgalnuna,

I'm not the best one to give you advice on your back issues, as my pain is in a very different area of my body, but I do want to welcome you to HW. I am sorry to hear about the circumstances which lead you to join us, but I am so happy that you have decided to become an active member of this wonderful community. You'll find that even though we all have different pains and different problems, there is something universal about the way pain affects us and our lives. On that note, I hope that I will be better able to offer you guidance in the future, but even when I can't, you will always have my support and compassion.

hugs,
Skeye
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