Pain Management

[kg5939]

I went to the pain management doctor today who informed me he is unable to give me epidural shots of cortizone which my doctor prescribed. He said to try acupuncture to see if it helps. He is trying to get approval from my medical insurance for a teuns unit (sp?) which may help with some of the pain.

My other alternative is to have all my hardware removed which he does not recommend. I won't go for it anyway. It's been there 33 years and it's staying there.

I never had any idea I would be in so much pain and have so many problems from this surgery. I have spurs on my neck with degenative disks and spinal stenosis in the lower lumbar as well as broken off calcium deposits, arthritis and degenerative disks.

[cdhheidi]

Are you using anything for pain now? My son uses a combination of methadone, neurontin, and tylenol/codiene for his spinal pain. He also has used a pain patch in the past which helped... cant remember which one. It helped the pain, but he did NOT like the feeling of the patch removal so we felt it wasnt worth continuing. (all prescribed by a pain doc).

We too have discussed removing hardware at some point in time, though we hope to put that off as long as possible since he is only 8 yrs old.

Heidi

[Jacque's Mom]

I had the Harrington Rod in my back for 19 years and when I decided to take it out (done in 2000 a procedure the dr. said would take 30 to 45 minutes) took 4 hrs. and he only managed to take out 3-4 inches on the top. It was so fused to my spine that he didn't want to risk taking the part that apparently wasn't giving my the problem. I can't even imagine yours being in so much longer if it would even be possible! But I am in Pain Management for 2-1/2 years and I too, am on methodone - an extremely mild dose 20 mg per day. I take 5 in the am; 5 in the afternoon and 10 before bed along with celebrex and that has helped me so so much. I was in such agony I felt it wasn't worth going on in this type of pain. I also never knew years later how I would be but at the time when they say they can help, I would do anything to get my spine straight. I was 27 when I had it done in 1981 and I was actually painfree until 1997. It was truly a miracle for me as I suffered with back pain since I was 11. As far as the patch that Heidi referred to.... if it is the Duragesic (Fentanyl) Patch, I had severe side effects. I used it for about four or so months and had every side effect immaginable; severe panic attachs, chills, weight loss, no appetite, etc. and wound up in the hospital for five days with a blood clot on my lung from it. All went away but it was just awful and I didn't feel it was really helping with the pain. The only thing that helps me is the methodone. I did NOT want to take it for fear of just the name but after careful consideration and research, I thought I would try it and it's 2.5 years now and I'm very very glad I did. Hopefully you can find the right choice too. Pain is a terrible thing as we all have/are experiencing. What works for one, might not work for another, but I thought that I would let you know what I went through and how I found some relief. I also practice "The Alexander Technique" a postural method that helps me with pain. I have been doing this as long as I'm taking the methodone so the combination for me is working. (look it up on the website - I swear by it). Good luck and I hope you get some comfort soon. LYNN

[kg5939]

Thanks for the advice Lynn. I have my tens unit and the doctor also wants me to try acupuncture. I'm a little depressed as I knew in my heart that I wasn't going to get a miracle but was holding out for one. I've been in denial of the pain for a few years and just couldn't hide it anymore.

I had my surgery performed by Dr. Keim at Presbyterian Hospital also in 1973.

Kim

[kg5939]

I'm only taking motrin right now Heidi. I was taking Bextra but stopped after the FDA warning. It didn't do anything for me anyway. My doctor did mention if the tens unit didn't work using a morphine patch. I really don't want to start with drugs right now.

Sounds like your son has been through alot. I don't blame you for not wanting his hardware removed. I can imagine how much it hurts you to see him in all the pain. Little guys just shouldn't have to go through it. My younger son is almost 8 and has learning disablitlies and I hate to see how he struggles.

Best wishes,

Kim

[bse4]

;) I had acupuncture for about 3 months, and it was wonderful. If I could get 3 visits a week and then taper off I would not need much pain meds. The only problem is that my insurance would not pay for it, so my family put out 600. dollars and I went until the money ran out. Some will offer so many visits for a set amount. It is worth the try. It would be great to have insurance pay for it. It also was a life saver for me when I would have severe muscle spasms and swelling in my leg and feet, and they also had this very powerful massage machine that felt like a smooth sander that got rid of a lumpy muscle that had been stubborn for months. The lumps in the muscle's that seem to be due to tightness and spasms, cause me to have circulatory problems and when a massage therapist or acupuncturist gets rid of it it's like a miracle. I actually felt like a normal person, pain free, for an hour when I left the acupuncturist office.
If I were wealthy, or had insurance to pay, I would go to acupuncture (a good one) atleast a couple times a week.

[honeybucket]

hi. i am 40+ years post op with no hardware. i have stnosis, herniated discs, spurs, muscle spasms etc. all the stuff so many of us are having after all these years. i use muscle relaxants and vicodin, have had trigger point injuections, and epidurals. latest is lidoderm patches. they go over the painful area for 12 a day, and help the pain dramatically for me. might be worth asking your doctors about. good luck :)

[smallfry123]

I went to the pain management doctor today who informed me he is unable to give me epidural shots of cortizone which my doctor prescribed. He said to try acupuncture to see if it helps. He is trying to get approval from my medical insurance for a teuns unit (sp?) which may help with some of the pain.

My other alternative is to have all my hardware removed which he does not recommend. I won't go for it anyway. It's been there 33 years and it's staying there.

I never had any idea I would be in so much pain and have so many problems from this surgery. I have spurs on my neck with degenative disks and spinal stenosis in the lower lumbar as well as broken off calcium deposits, arthritis and degenerative disks.
I have been having alot of pain too lately and i have tried the tens unit and if you have it on the right settings, if its not on the right setting it feels like it's just shocking you not relaxing muscles.so the right setting feels good but as soon as it is off the pain returns, so it's only a temporary relief. I am 26 years old and have scoliosis since i was a baby. -
Jenny

[MOB]

I have been having a lot of pain below fusion since last oct i have a worn facet joint the pain was going down my leg. I decided to try acupunture i have had about 3 sessions so far and i now i have no pain.

[glitter]

I was diagnosed with scoleosis at the age of 20. I didn't know I was suppossed to look after it because no one told me it would continue to worsen. I now have a 30 degree S curvage. My pelvis is higher on one side. Frankly I am in so much pain there are days I just want to go to sleep and not wake. my family doctor is useless and tells me to take over the counter tylenol which doesn't touch the pain. I am going to a specialist in Feburary but my family doctor told me it is a waste of time because he won't do surgery because I am to old at the age of 41. I am looking for support from anyone in my age bracket.

[christine2]

Hi Glitter

I am almost 40 and have congenital fused vertibrae in my neck. My condition is different but I may be of some help. I was also told to live with the pain and given prescription muscle relaxers and anti inflamitorys. I now see a Chiropractor and have been med free and almost pain free for 10 years. The chiro has done some reversal to my spine but is mostly management of pain at this point. I started by going 3 x wk for 1 month then 2 x then 1once now I maintain at every 3 weeks. My doc uses a drop table.

I did go thru 3 docs before I found the one right for me. Some people swear by chiropractors and others do not like them but it may be an option for you

[sitoutturn]

If you live in the right county in california you can get medical marijuana which I use for pain management.

[rainbow2010]

I had one doctor tell me that he couldn't give me injections. I went to another better pain doctor (I have a 1 3/4 hour drive to his office), and he has been able to give me the injections I needed. He is a rehab doctor for brain and spine injuries. He does mostly just spine problems. Try to find one that deals mostly with the spine if you can. I tried a tens unit and the vibration cause me more pain. I use a heating pad and also exercise at a therapy pool that is kept at 90 degrees.

[Karen Ocker]

I tried a tens unit and the vibration cause me more painrainbow2010

I have a lot of experience with the TENS unit. If you feel the vibrations/tingling then it is incorrectly set. One is supposed to set the device to just below the setting where one feels the impulses.
Even though I've had surgery 5+ years ago I've used the device for other issues like muscle aches and injuries. The manual is very handy and is a great source for what to expect.

I was fortunate in that my prescribing pain doc took the time to give me tips and could be reached by e-mail.

[rainbow2010]

I am very sensitive to vibrations. My kids were never allowed to have their stereos up loud. Even riding in the car bothers me a lot. I had a physical therapist place the tens unit on me.

[mslynn03]

Hello, I am currently on the tenz machine... I LOVE IT..... It is a great item to have. Cortizon is bad for you. It is only a temparary sollution to pain. Also try swimming. It help build the weak muscle. I have a harrington rod, placed in 1981 and have tried everything for pain. Hope this helps!!! :D :D

[plainjane]

:o cortizone shot's don't do anything for it anyways. Pain Management that was a joke For they tried to make a junky of me. NO. So the pain will be worse I was told since the damage was done there is no fixing me

Plainejane







I went to the pain management doctor today who informed me he is unable to give me epidural shots of cortizone which my doctor prescribed. He said to try acupuncture to see if it helps. He is trying to get approval from my medical insurance for a teuns unit (sp?) which may help with some of the pain.

My other alternative is to have all my hardware removed which he does not recommend. I won't go for it anyway. It's been there 33 years and it's staying there.

I never had any idea I would be in so much pain and have so many problems from this surgery. I have spurs on my neck with degenative disks and spinal stenosis in the lower lumbar as well as broken off calcium deposits, arthritis and degenerative disks.

[RitaR]

My local dr said something to me about Pain Management and for the life of me I cannot see the benefit of that - I know what the pain is from so let's just treat that - fix it or something - don't dope me up so I don't know the difference. Good grief! I'm not a medicine person. And, from my transcription experience I type all the time on these patients who go to Pain Management, pay out the ying yang, and still have the same pain when they're done. Of course, I'm one of those people in severe pain and I, too, am not going to condone to Pain Management. Just my two cents here. I know they mean well, but I don't see the benefit from that myself.

[Karen Ocker]

Rita, thought the way you did until I had my revision. Another forum suggested a pain doc during my recovery. It was a great help. One is less likely to become addicted because they use other modalities besides narcotics. Also untreated pain is dangerous for the body no matter the cause because it affects the immune system and healing. There are some people who try to game the system and the pain specialist is aware of this. Post-op one is better able to do PT with proper pain relief. On the other hand pain relief is not a substitute for proper treatment.

[jrnyc]

Hi Kim
as i write this, i am in the business office of my nyc hotel...came in to see pain managemnt doctor...cant carry my laptop...too much..hurts just to walk..have not had surgery...yet...am going to consult with dr anand jan 27 in CA..then back to nyc surgeon to see what he thinks about minimal invasive..most of my pain is low lumbar..they want to fuse me to pelvis...so i am holding off...i also have spinal stenosis, degenerative disc disease, & arthritis in spine...

about pain management...never got much help from epidurals..facet block & nerve ablation helped me more..also, sacroiliac injections helped...but none help for very long...unfortunately, acupuncture never did much for my back...only helped me with quitting smoking, & still ended up cold turkey...that was 20 yrs ago...but i digress..

medical marijuana never helped me, as it increases my awareness of my back pain, so i cant use it (darn)...i take oxycontin 30 mg (have other strengths too) & hydrocodone...will probably end up with surgery..but i know that is not a promise either...no one can promise us pain free..least of all the surgeons..they keep telling me i will have "less pain than before surgery"...but that is all...

i am so sorry that you are suffering...just wanted you to know there are other shots besides epidurals....

must go to appt now...
best regards
jess

[always smilin']

Interesting posts. I see a pain mgmt doctor (my first ever) on Tuesday. This gives me some idea what to expect. The surgery last April was not in my mind successful - I had the Harrington rod a long time ago and the pain now is about a million times greater than I've ever had. Bummer! Hopefully I learn something helpful on Tuesday. I did try swimming and floating felt good/not great but that was it...so really haven't been swimming since. One can only float on one's back around a pool for so long ( he he)

Thanks everyone!

[jrnyc]

Hi Colleen
so sorry you are suffering..that is awful that the revision is not helping you! i hope that the pain management doctor can help you & help reduce the pain!
i will be getting facet block & nerve ablation done on lower back jan 18...havent had it since 2008....& in feb i get botox in upper back again....it takes care of the upper back pain...but botox doesnt work on my lumbar pain...

best of luck
jess

[always smilin']

The upper back is what worries me most...I can feel the rods and it totally grosses me out. Lower back has hurt for years...not that i like it but at least I'm "used" to the pain of the lower back. Rib pain is terrible too. So, we'll see. Helps to see what has helped others:)

Thanks

[JenniferG]

I'm so sorry to hear this Colleen, after all you've been through. It's just not fair. Do they know why you're in such pain? Will the pain management doctor try to find out, or just give meds? I hope this can be resolved. Best wishes.

[always smilin']

Dr. just told me to gain weight but didn't have any other insights. (The rods are protruding quite a bit - gross) As he said, there's not much that can be done at this point short of going in for another surgery which I know I physically or mentally could not take. So, I need to learn to deal with it - maybe I'll seek another opinion at some point - but am too drained right now to do anything else. It is a bummer that things didn't work out but I guess I knew there were risks...just wishing that it didn't happen that way. What's a girl to do? I highly doubt that gaining weight will help my back much - it's not that I'm UNDERWEIGHT...I'm at a good weight in my mind. And was this weight with my Harrington...so who knows. Thanks for your concern Jennifer.

[jrnyc]

i guess all the injections are temporary...if they help, it is for a short period of time...i wish acupuncture could help me...it never has...nor has the tens machine...

i keep stalling with the surgery...so that is why i stick with the pain doctors for now...sometimes just getting out from under the pain for a little while allows the brain to function more clearly...i think i will probably come around to the surgery...it is just that when i read revision stories, it scares me so...

i dont understand why rods cant be removed years later...i thought that by then, the bones are fused so that the rods are not really needed anymore...? i am unclear on this...?

jess

[always smilin']

Wouldn't it be nice if there was actually a CURE! I'm glad the injections help you...I'm TERRIFIED to have needles in my back (silly I know after all I've been through)...does it hurt a ton? It'll be interesting to see what the doc says tomorrow

[jrnyc]

Hi Colleen
the needles hurt a little....it's not too bad....i grit my teeth & make a face...am laying face down, so doctor cant see it anyway..not that i'd care...i got used to needles for lyme disease antibiotics....lots of injections until you finally give up & they implant a catheter in your chest for the needles to go into!

as for the back, you just kinda brace yourself, but try not to get too tense or the muscles just tense up...alot of the injections go in with novacaine with them, so after the first one they sometimes hurt less...it is well worth it to get relief from the chronic unceasing pain! i will get twice the injections next monday as they will first do facet block & then injections for sacroiliac joints...we all wish there was a cure!!

good luck with the doctor tomorrow....if it is your first visit, they may just do an evaluation & schedule something for a second visit.....

take care...
jess

[always smilin']

Yep...it wasn't what I anticipated. More of a psych consult than pain mgmt. Suggested I join a pain mgmt support group in the summer...we'll see. So, for now I learn to deal on my own.

[jrnyc]

hey, Colleen
in my personal opinion...that is nonsense..i would not put up with a doctor like that! when i was sick with lyme disease for a year and a half.. cause no one diagnosed me...they tested for some things, those came out negative, so instead of saying"you are sick but we dont know what is wrong yet"...they said "we tested you for a, b, & c & they came out negative..so YOU ARE NOT SICK"...place the blame on the patient, it is called...after going thru hell & ending up in a wheel chair before one of the smarter idiot doctors figured out to test me for lyme, which came out off the charts positive, i was never really impressed with a doctor again!

anyway...i would look for a doctor who believes that pain is real & that scoli can cause alot of pain & that surgeries can cause alot of pain, right away or years later...there are some great pain doctors out there, especially in the big cities, but i bet there are some in small towns too...
at any rate, i dont think you should have to deal with the pain all by yourself...whether acupuncture or injections or anything else, there should be something a good doctor can find to at least reduce the pain level!

hope you find a helpful doctor! and i am so sorry that you are suffering....

jess

[JenniferG]

That's terrible Colleen. Can your GP refer you to a scoli specialist or another pain doctor? It's a slow, frustrating and expensive business, finding a doctor who can help, but I hope you can push on.

[always smilin']

I'm a bit frustrated and tired. I didn't anticipate this 9 months post-op. I think I need to try to focus on family and work for a while and see if I can manage. I just can't traipse to more doctors right now. It's wearing...especially since I have quite a drive to any decent clinics/areas. I do appreciate all the support from this board. I don't think any of the doctors mean to be "mean" but unless you've really been there you just don't know...I never knew or understood pain/real pain until the last few years...and right now...the pain is awful and all-consuming. My family has, thank God, been very supportive:) I'm not going to give in to a life of pain..I'm too young. That's why I had this surgery...to improve my life not the opposite.

Thanks again all! Time for me to rest now and get ready for another full day of work with the little ones:) (I love my job - thank goodness. Kids help perk me up:)

Have a great week all!

[jrnyc]

I get it, Colleen..it is exhausting trekking from doctor to doctor, hoping to find one who is simpatico with you...i consider myself lucky to have the one in nyc, although most doctors still need some ego stroking, sad as it is...

if you change your mind, or rest up & feel like giving it another go, maybe there will be some people on forum who can recommend a doctor to you in your area...

in the meantime...best of luck...wishing you more comfortable than uncomfortable days...& those kids are lucky...but i know what you mean..they can really take your mind off your own issues for awhile! & in their presence, you can feel joy!

jess