plz some one any advice?

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ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/10/2010 9:28 AM (GMT -6)   
hi there, im a 22 yr old mother of a 3 yr old boy.
2 yrs ago i underwent surgery on my back t fix a t12 vertebrea in the surgery they hit a nerve which resulted in incredible pain and permanent foot drop on my right side,which means i cant lift or feel my foot and am constantly tripping over it because of this i subconciesly lift my right hip higer to clear the ground.
i now get chronic pain in my hips as they are compensating for my foot i also stll have chronic pain all over my back most times im so stiff and in s much pain  i can barely walk somedays which makes being mum near on impossible. ive had all sorts of injections which havent worked i was on fentanyl patches untill they stopped working im now on tramadol as i came off the fentanyl i was taken off hospital care? i had a appointment with a pain management dr who didnt want me on strong meds coz of my age he just offered me the same injections ive had before? im now waiting for a 2nd opinion with another pm dr. if any one could advise me on what questions to ask or anything i could suggest to her id be so greatful i just want to go in confident and educated so i dont leave there feeling lost still :-)

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/10/2010 10:10 AM (GMT -6)   
What do you want to ask them, Maybe ask what he/she can do to help you?
Ask if there is anything better than just injections that could/would help?
Sometimes physical therapy can help, ask if that might help?
Make sure to have everything listed that you want to ask, have copies of your
medical history either sent to this new pm doctor or have them sent to you to hand
carry to your new appointment, Take someone with you, in case you don't ear everything
the doctor says or take a tape recorder to make sure you know what this new doctor
wants, expects or plans to do...Hope this info helps...
Also list all your medicines and if need be take them to this first appointment...
well wishes and hope you can get a low pain day...
((((((((((((((((((((((((((((((((((((((Ambrdylz)))))))))))))))))))))))))))))))))))))))))
others will come by with better info take heed and listen, keep us posted...
nice to meet you.
**********************************************
* 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"...

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

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 10/10/2010 10:52 AM (GMT -6)   
ambrdylz
First off I want  to Welcome you to Healing Well Chronic Pain forum.  I really am sorry about you getting that blotched surgery, I have a herniated disk at T-12 and my Doctors would not touch it, instead they put me on disability and pain meds to keep comfortable!    I think I might have some idea, about the pain you are feeling, I think I would keep a journal on when your pain is at its highest and its lowest,, , and what you are doing, during that time. Also when you talk to your Pain Doctor, don't ask for pain meds, but instead explain how much pain you are in, let him see your journal if he/she wants, and tell him how the pain is affecting your life and what you can and can not do because of it!  Be forth right and honest, about it, but make sure you do not gloss things over so it does't appear to him to be as bad as it really is for you!  Tell him you are coming  to him for help and you desparately need relief from your pain, and you are willing to work with him to attain that goal! Then let him try to help you! If what he does or recommends for you doesn't work make sure that you tell  him! If he continues to be unsuccessful in helping to relieve your pain then definitely try and see some one else! 
 
Do you have help in caring for your little boy when yor are in extreme pain? Husband?, Parents?, family? It is important they you have help during these times! I understand why so many doctors do not want to give young people strong pain medications.  But it is not right not to adequately treat their patients pain either! It is not fair nor right that you should have to suffer like that!  I do wish I could be of more help to you ambrdylz!   Hopefully others will come along with some better ideas for you and  some good advice too!
 
Again I welcome you to our forum, You know I really don't think you could have found a better place to have come, at least here you are not alone with your pain! You have plenty of caring and compassionate friends here that will at least lend you their ears and listen to you and share in your frustrations, and hopefully we can in some small way lighten your burden, and be of some help to you!
 
I do Wish you well!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/10/2010 12:58 PM (GMT -6)   
Do you have a brace for the foot dropping? This might help with the tripping.
Joy

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/10/2010 1:03 PM (GMT -6)   
thankyou both for your replies and yes these sitesand forums are a great help ive fnally found a way to get advice or just whinge to other people in the same predicament as me altho i wouldnt wish this on anyone and wish no one had to deal with this. i am lucky i have an amazing lving boyfriend wo puts up with me on bad days and always makes me feel like a princess i dont know what i do without him my family altho i know they care are just very busy with theyre own lives they call and pop round occasionally to c how we are which is nice coz i dont really leav the house my mum also comes to most of my important appointments which is very helpful. my first appointment with a pm dr was a couple months ago he is the one who just suggested the injections tis is after i done as you have just said i went in explained how hard just getting around the house is sometimes i cant care for my boy or keep up with my chores i got very emotional and at onepoint shed a couple tears (not impressed with myself my aim was to remain compossed) but still he just said injections which is why i began on these sites trying to find advice on treatments medication excercises anything to suggest to my 2nd opinion with a new dr in 2 months time i want to go in informed so i wont leave still struggelin i understand i wont be pain free againive accepted that but just some releif!!!

i hope i havent gone on to much thankyou again for your replies its all very helpful hope your both doin well today

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/10/2010 1:17 PM (GMT -6)   
P.S i have had all types of different afo's ive had plastic ones thin ones thick ones carbon fibre ones but just my luck i have odd feet and the all just didnt work one sort of burnt a huge patch on the bottom off my foot and where i couldnt feel it it just got worse, ive also got an ulcer because of anoher one that was a yr ago ive still got the stupid ulcer now. im using a foot up thing at the mo it just velcro straps and aclip to help hold it up it works better then the others is more comfortable but is notas supportive as id like it to be

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/10/2010 2:29 PM (GMT -6)   
Bummer!
Joy

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 10/10/2010 2:29 PM (GMT -6)   
Hello ambrdylz,

First off welcome to Healing Well and the chronic pain forum! It saddens me when we have to welcome another person who is in pain! You have sure been through a lot for your young age and I am sorry for your suffering! I to have back problems, but mine are real low L3 thru S1. I have terrible nerve pain in my feet but no loss of feeling or drop! So I do not know a lot about those. One of the most important thing is to make a list before going to the doc and don't feel weird about taking notes while you are there either. It was kind of weird for me at first, but I also have fibro and on the bad fibro days....I could forget my name! LOL! Not quite that bad, but close! I am happy that you have a very supportive significant other in your life...I also do....but many don't and that is HUGE!

Anyway...again, welcome! You will not find a place with more caring, kind and understanding people! Keep us posted!

Take care of you!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 10/10/2010 7:39 PM (GMT -6)   
ambrdylz,
Do you reside in the US? And are you near any major University that has a medical school and teaching hospital,  or can you  travel and go to one? Do you have any major mecical center near you? You know with your condition I think you would be better off getting a second opinion about all this, The  Thoracic area of the spine is an extremely difficult area to treat, and it sounds like you have really been through the mill with it already.  You know ambrdylz you are only human, and as being human we all do have emotions, and although we might not want to show our emotions, but  contrary to popular belief,  it is not a sign of weakness if we do show them sometimes! Do not be so hard on yourself, I am very impressed with you from everything you have said! Having and taking care of a young child, and having been through what you have been through, and what you are continueing to have to go through!  Wanting to just have a little less pain, so you can better take care of your boy, is not to much to ask from anybody, certainly not from your pain doctor! You have ever right to be emotional!  So hold your head high and be proud of yourself and do not worry about revealing your emotions every once in a while. After all you put allot of faith and trust into your doctors, you intrust them with your very life! It is not wrong to intrust them with your feeling and emotions too!  I wish I knew that magic words that I could give you, that you could tell your Doctor that would get him to understand and then adequately treat you!  I really am at a loss!  Does your PM adminster Pain Meds? If he does...........Well  just what kind of injections does your Doctor want to give you? Epidural Steroids? Nerve Block?   I am wondering if he just does't want to try these first before puting you on opoid based pain med??????  Also has anyone mentioned a spinal stimulator? Or even a pain pump?  If you haven't already done so, I still would encourage you to try and get to a major medical teaching facility!

Good Luck to You

White Beard



Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/11/2010 6:41 AM (GMT -6)   
thanks for your replies, i was on fentanyl patches for about a yr i gradualy came off them as i thought i was getting better (how wrong was i) but as i had already come of them ive found it very difficult to get back under the care of the hospital instead of my fmily dr, i live in london england and i think things work alot different in the usa to here. i think the injections im having are the same facet inection ive had before i was so dissapointed when he said that was all he was going to offer me. it realy feels like im runin out of options. i have made an appointment wih another pm dr for a2nd opinion but thats not untill 29th nov :( until then i spose i just carry on getting through the day like alot of you. thankyou again for your relies hope your all as painfree as possible :)

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/11/2010 7:59 AM (GMT -6)   
hi and thanks againfor replies and kind words. im having abad day so sorry for short reponse and spelling. ive had 3 lots of facet injecxtions and the pm dr said thats all he wiil offer me im a bit stumped as ive heard of lots of diffent treatmemnts but seem to find the drs will only offer these injectons altho theyve not worked before and i strngly doubt they will this time but ill give anything a go lol the pm dr also wont prescribe any meds as im apparently too young? im 22 hardly a minor? im just waiting now for a 2nd opinion with a new pm dr fingers crossed. hope your alll well

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 10/11/2010 12:27 PM (GMT -6)   
Hi Amber,
The PT that someone suggested is probably worth a try. That's what I'm working on now for thoracic pain. Also, have you tried topicals? I know they have Voltaren gel in UK (not sure if that's it's name but when it first came to USA, I was reading up on it & found it has been in Europe for decades). Also, perhaps they could try compounding something for you. My first PM was very strict about what he would write -- only Tramadol and Gabapentin. But he was willing to write for a compounded gel. It had Ketamine & Gabapentin & Clonidine & something else (amitriptyline???). At first it was 10% ketamine, but that was too strong for me so we lowered it to 8%. My current PM just has them put the 8% ketamine and nothing else and it's in a cream base. It's not a strong as fentanyl, but it's probably the second best thing that I've tried.

Also, you might try either an anti-depressant (the older ones, "tryptilene"s like nortryptilene, amitryptline, etc.) or an anti-convulsant (pregabalin, gabapentin). Though they can have side effects, they are often used here in the US at least to help manage pain conditions. If you haven't tried them, maybe it's worth a try.

Besides that you could maybe try massage or acupuncture or some other alternative therapy (be careful with chiropractors). Other than that, I'm not sure what to recommend. I understand the doctor's hesitation b/c you have many years ahead of you & some people build up a tolerance and need more and more until they max out after 30 years and are out of options. But I've also been in your shoes and was so happy when I finally found a young doctor who understood that there's no point of living to 70 if it means 45 years of misery. And in spite of being on fentanyl for 7 years, I haven't developed a tolerance to it; I've stayed at the same small dose & haven't increased. So sad that people don't understand these things better but all we can do is try to make the best of it. It took me 4 years to find my current PM. Before that I had the guy who wouldn't write anything stronger than tramadol & some other crazy lady who was all but useless, and then I went nearly a year with no one b/c I didn't see the point.

So I guess my advice is to try to make the best of it while keeping one eye looking toward the future where hopefully you will find a doctor who offers a broader range of treatments.

best wishes,
frances

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/11/2010 1:04 PM (GMT -6)   
thankyou frances,
ive tried volteren tablets but not heard of the gel ill c if i can pick sum up this week. are the gels from the dr like for eg fentanyl patches, do they still have side effect ect? i was on gabapentin for a long while not sure if it done any good as i was on so much then but the dr took me of them fearing something worse like liver damage or ulcers? he didnt replace it with anything els tho? currently im 200mg tramadol 3xa day paracetomol ibruprofen and amytripilin 10mg. it all worked to begin with but has gradually stopped being effective to the point where i feel no difference. ive also been having acupunture for about 8 months, acouple months in she did this ear treatment and put tiny gold pins in that stay in for around a week the 1st time she done it i was PAIN FREE for 3 days sadly like she had warned it wore of more each time she done it im still going tho in the hope that something might work. thanks for the tip off on the gels

amber

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 10/11/2010 3:17 PM (GMT -6)   
Yes, it's prescription. It's the same drug as the pills, but I found it works better plus you don't get as much into your blood stream since you're just putting a small amount where you actually have the pain (mine pain's about the size of a tennis ball & all I need is an amount equal to a coin 2cm across) so the side effects are much less. I did still have some side effects when I used it also up by my hairline where I had surgery for a separate condition -- lost some hair & had to go off it for a while -- but my dermatologist said it would have been much worse if I'd been on the pills.

I didn't have much luck with the gabapentin after a couple years either. Kept upping the dose to no avail. But it works for some -- and it did help for a while. Now I'm on 50mg pregabalin (not sure if you have that in UK). I was on much higher dose of gabapentin. The downside is pregabalin makes you really sleepy. So I just take it at night or sometimes on weekends. But it does help reduce my pain & I haven't shown any issues from it in my bloodwork. I think it's been 4 years that I've been on it.

It is tough that these meds work so well for a while & then stop making a difference. Hope the gel helps. :)

-frances

ambrdylz
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 10/12/2010 6:34 AM (GMT -6)   
thanks loads that gel sounds great! hope i can get the chance to try it :)
its so frustrating ut what choice do have but to keep trying and searching for that 1 thing that will help continuesly. thankyou all for your help and advice ive got loads to work on now lol :)

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 10/12/2010 3:21 PM (GMT -6)   
Lyrica may be very helpful.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: OxyContin 60mg 2x, Dilaudid 8mgs [brand] 4x p.r.n. brk., Phenergan 25mg 3x prn nausea, Lyrica 75mg 2x,Adderall 20mgs 1x A.M., Soma 350 mg 3X, Relafen 1000mg 1x, Klonopin 1mg H.S. or prn anxiety Supplements: CO-Q10 100mg, Vitamin D 2000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, GABA 750mg
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