Looking for moms (any age) with back problems......

Joanne - posted on 02/18/2009

Thanks for your advice Sandra.I never heard of alot of these procedures or even if they are on offer on the nhs in this country.ill do some research.once again,thankyou

Sandra - posted on 02/16/2009

I understand about your health system. On a personal level my back problems started when I was 14 , this Friday I will be 64. I have been able to rise 3 children complete college and Teach for many years. What your consultants are telling you is just not true!! Research on the internet, for example WebMd.Com is very popular in the states. More than 1 doctor told my back is a disaster! We tried everything to avoid surgery, but it got to the point in my case my spine was so unstabile, I could have would up in a wheelchair. In NYC the borough of Manhattan their is a Hospital called Hospital For Special Surgery . They have some of the best Doctor's in the Orthopedic or Neurosurgeons in the world their! Check out their web site! I hope I have been helpful!

Joanne - posted on 02/16/2009

Thankyou for that Sandra,ill look into it.Tryings not gonna hurt.Its not always the consultants fault,the guy at the pain clinic actually apologised to me because they couldnt help me.While our nhs in alot of ways is fantastic and i cant blame the consultants.theyre hands are tied if a procedure is considered too expensive so it is never offered as an option or if your quite young and may need more surgery later on in life.My consultant did say that chances of the surgery being a success were very low and may even make me worse so he said it would be better to leave me because of my age until it got to a stage where they had no choice.luckily its got no worse..

Sandra - posted on 02/16/2009

I split my time between the USA and Israel. My procedure was done in the States. I understand the system in England. I sugguest you look up Meditronic on the internet, they have branches all of the world. Bring the imformation to your family doctor. I am not a supporter of narcotics, because of what they do to your brain. But no doctor has the right to make you live that way. !!

Joanne - posted on 02/16/2009

to sandra,thanks for the info about the pain stimulator.i dont know where you are living but i am in England.i havnt been seen by the hospital for around 4 years.they tried all the things i mentioned and because nothing worked they discharged me.unless my condition changes i.e gets unbearable they do not see you.its a strange system here.they will only see me again if my local doctor referres me back to them if he thinks my spinal cord could be in danger.plus they considered me too young for surgery.its hard to try to explain how difficult it is here plus the length of time you have to wait to be seen.it took 3 months for a scan to be done and i was considered a priority

Joanne - posted on 02/16/2009

to sandra,thanks for the info about the pain stimulator.i dont know where you are living but i am in England.i havnt been seen by the hospital for around 4 years.they tried all the things i mentioned and because nothing worked they discharged me.unless my condition changes i.e gets unbearable they do not see you.its a strange system here.they will only see me again if my local doctor referres me back to them if he thinks my spinal cord could be in danger.plus they considered me too young for surgery.its hard to try to explain how difficult it is here plus the length of time you have to wait to be seen.it took 3 months for a scan to be done and i was considered a priority

Sandra - posted on 02/16/2009

I love this community. We truly understand one another!!! To Joanne, I have a medtronic Pain Stimulator implanted in me. It has to be done by a Pain Management Doctor who is trained to do the procedure. I have had it since 2000.It was even kept in place after my Spinal Fusion in 2002. First they see if you are candidate. if your a candidate it is implanted in the left side of the pelvis like a pace maker is implanted near the heart. If it is for you they do the surgucal procedure let you try for a week and you decide if it is for you. I must have the battery changed every few years but it is ambulatory procedure.Look in to it!

Joanne - posted on 02/16/2009

Hi all,im new to the circle and came accross this community.After reading all the posts it was my story over and over again.I was diagnosed with degenerative disc disease at 36,im now 42.I have prolapsed lumber disc,1 crushed and 2 torn discs.surgery is not an option for me as the consultant says im too young and it will not work.ive tried every pain relief offered from tens machines and acupuncture to epidurals and facet joint injections.nothing has worked.any medication strong enough just knocks me out so i wont take it.i attended chronic pain clinic at the hospital and they were great.it took a long time for me to realise that i couldnt do the stuff i was used to doing and you do learn to adapt and live with it.i used to fret if ironing and stuff wasnt done,now i just think 'i cant do it today,ill try tommorrow'.

i understand every one of you. its nice to know im not alone.you sometimes feel you are as unless you have it you cannot explain to anyone else.

people around you do forget,not being nasty,but from the outside you look fit and healthy.

oh boy,i, rambling now.sorry

Angela - posted on 02/15/2009

Hey there... I've had four fusions and am fused from stem to stern with only a few disks that haven't been cemented into place. Now my docs are talking about hip replacement because on top of everything, i have spondyloarthritis in my pelvis. So yeah. I can understand your perspective.

I told my doctor that I didn't want to be on the major pain meds (oxycotin, lortab, etc.) because I can't stand the way they suck out my brain. And consequently, I feel I'm actually doing better because I am not in that cycle of take the pill, pain is gone, pain starts coming back, take another pill. I have the same level of pain all the time and my doc is amazed at my tolerance because apparently I should be writhing on the ground in my current condition. But, I think that after living with a certain level of pain, the brain gets used to it and you adapt. The pain doesn't go away... You just learn how to live with it. Make sense?

Anyway, I definitely understand. There are some days when the thought of taking a shower is too much for me to stand. And sometimes I have to make a choice between taking a shower and getting dressed or getting something accomplished around the house.

Jamie - posted on 02/15/2009

I am 27 years old and am new to this website,  I am sitting here crying as I am reading the stories on this page because I am not alone and I am not crazy.  I have been diagnosed with DDS(Degenerative Disc Disease) and have two buldgeing discs at L-5 and S-1.  I work fulltime as a dental assistant and come home to my 81/2 year old daughter and my husband Dominic.  I come home and my legs and feet and back hurt so bad I go to my bed and lay on the heating pad for most of the night.  I have permantely scarred my back because of using the heating pad, but it helps so much.  My husband does not understand and makes me feel quilty sometimes, I wish so much I could play with my daughtet the way I want to, don't get me wrong I have good days and I fully take advantage of them, but they are few and far between and I always seem to pay for them later with the pain.  I am on pain meds 24/7 and have already gone through the steriod injections and some nerve blocks with no sucess.  I want to have another baby but I don't know that I can handle it physically.  It makes me feel like a faliure.  Its just really good to know I'm not alone and I'm not crazy.

Nikki - posted on 02/14/2009

I understand. I was in a near fatal car accident in July 2003 and have a rotated spine. I'm ALWAYS in pain. I also get neck pain and HORRIBLE headaches. I was on pain meds but when I got pregnant I had to stop taking them (that was hell for awhile). I understand where your coming from and I feel for you

Sandra - posted on 02/11/2009

Tricia I understand you completely. We are kindred spirits. The thing I miss most is to be able to take a stroll without pain!!! Steps are indeed mountains for me, as addition to my spinal fusion and rods and screws in my back,my right knee is replaced. The left knee has to be done, but I have to gear up for the whole drill. surgery, rehab. and more unbearable pain.

Tricia - posted on 02/02/2009

it took me years to get my mind round the fact my body couldnt do normal stuff like it use to. that stuff cud effect u straight away or sumtimes up to two days later.ur mind wont accept what u cant do anymore. like climbing the stairs might aswell be a mountain,yet ur mind says it use to be seconds!

back pain is the pitts of hell, nobody cud cope reasonably wit the levels of pain it continues to give. tho i wud recommend sleeping with pillows under ur legs and pillows between ur knees to straighten up ur back,one of the best bits of advice. i now get a much better sleep.xx hope this helps in sum way.

Caylie - posted on 01/28/2009

oh and i forgot, when i found out i was preg, i detoxed myself off the narcs and i did not have any type of pain killer my whole preg- well until i had my spinal for my c-section. {i really wish those came in pill form lol} there are times i have been stuck sitting, one time i was bawling in the bathroom for 40 min before i was 'rescued'. before my fusion, i was 22, my husband had to lift me in and out of our shower and he would take me on weekly drives around town just so i could get out of the house. at that time we lived in a 40 ft motorhome and i could not do the housekeeping to keep it clean! we had to have a lady come once a week to do it for me. we still do too. as i look around my house and see it in a bit of disarray i wish i could run the vaccuum and dust and pick up everything bubbers {my son} drags out.

Caylie - posted on 01/28/2009

i have written this reply like three times and each time i end up with a darn book lol lets see if this time i can make it shorter....



okay i had my first spinal fusion nov 06. it was to repair a collapsed disc that had been misdiagnosed as a pulled muscle for 2 1/2 years!! i had docs tell me the pain was all in my head, my tears weren't real, and nothing was wrong with me. once we got into surgery we discovered the disc had never developed EVER and only half of the equipment was used for fusion. it fused okay, i just suffer every day now. i have uncontrollable full body twitches, somewhat like a tourettes twitch, that i have had since before the surgery. we think it has something to do with the bones grinding together and pinching my siatic nerve for so long. my legs get sharp stabbing pains running thru them if i sit for more than 20 min. i also get a sharp pain like an ice pic going thru my tailbone- fantastic feeling lemme tell ya! my muscles are so tight in my lower back and causing so much pain. i have had an epidural, i have had pt, i have been on every narcotic pain killer imaginable. i have been on lyrica, cymbalta, neurontin, i have tried it all. i have not been working since july of 2006 and i just was approved for disability. i get jealous when i see other moms doing things i would love to be doing, i would love to take my son on a warm summer walk, i would love to run around the park with him, i would love to climb the jungle gym and chase after him. i hate it when people look at me and give me one of those looks. just because i am young and tiny does not automatically mean i am in perfect health. i used to get embarrassed using my handicapped sticker. and my cane is rather embarrassing too. i just wish that one day i can wake up and not wonder how i am going to make it thru the day. i am so happy to see other women who understand what i feel and how much of a struggle the little things can be.

Kristan - posted on 01/27/2009

Quoting Sandra:

  "I feel quilty at times because my husband is a cancer survivor, who went through Chemo and radiation. Even though our pain is not life threatening, it does eat you inside."

You sweet thing. I feel your pain...literally. Chronic pain does eat you inside, and when there is NO relief and you are never comfortable....life is very hard. Don't feel guilty...pain is life threatening.

Kristan - posted on 01/27/2009

I am so here for you. I too suffer from chronic back pain. I just titrated off my meds (can you say withdrawals are my favorite thing?) in preparation for a pain medicine pump. I too am unable to work due to my pain level. I tried Cymbalta for pain relief and I beleive that it was helpful to me. Lyrica was also helpfyl. I would take them now, but I am breastfeeding. best of luck. We are not a lone.

Leslie - posted on 01/26/2009

I just had back surgery in July 08 (fusion at L3) I also have arthritis in my back. It all started 3 yrs ago . I had the shots (whiched help some) but I wanted to get my life back. Not sure if the surgery made me better-my legs are still numb-but my pain med doc thinks that I am just going to have to accept it and taper off my pain meds. I have continued my full time job throughout this ordeal but it hasn't been easy

Elizabeth - posted on 01/25/2009

Hello,



I can understand your pain. I had two back surgeries, and I had spinal fusion surgery from L3-S1 in 2001. I have chronic left leg nerve damage, it is documented. I haven't worked since 2001. I was a Physician Assistant in Orthopedics. I am on a regium of meds, that includes a nerve blocker, long acting pain killer, anti-depressant, and another for help in sleeping. this makes it tolerable to be active during the day. There are times when I feel like curling up into a ball, and wish I could die, as the pain is so bad. I am well controlled on the meds I am on, so this happens rarely now. The cold weather does not help, nor does stress. I am SSD, and I was recieving LTD benefits until we reached a settlement. Yes family does at times think I am faking it. I'm not. There are new options instead of a fusion, so look into them, ADR(artifical disc replacement) if you are a candidate. Also go to a good pain management center, as the pain should be well controlled. I always know that my left leg is there, and the pain is around a 3. But when it is really bothersome it goes up to a 7 or 8. You should not feel like that all the time. Keep trying different meds. If you want to e-mail me in private I can recommend a few to discuss with your pain mangement doctor. lizziebpa @ yahoo.com



Elizabeth



Oh and I couldn't have children due to other issues, fibroids, so I have two adopted girls biological sisters one who is 2and 1/2 years old(Caroline) and Natalee is 5 months old. I have had each since birth.

Sandra - posted on 01/21/2009

Like all of you my back is a disaster. At 14 I was diagnosed with Scolosis and Osteo-Arthritis. By the time I was in my 30's, out of the blue I would get Sciatic attacks, and severe back spasms. I would alo jave pain in my knees ,ankle and wrists. Still i Managed to get my Teaching Degree and raise 3 children. However by my forties the attacks became more frequent and more painfull. My late forties I had a complete foot drop on my right leg. It was then I was told I had bulging discs, and the knees of a football player. I had a benign tumor behind my right knee, that caused a Radiopathy and neuropathy. I had several small knee surgeries. But my back got worse and worse. After CT Scans, Milogram, and Mri I was diagnosed with Spinal Stenosis, degenerative disc disease, sponkilitis. I tried everything from nerveblocks, epidurals,physical therapy, till surgery was the option of last resort. In 1999,I had spinal decompression on the entire Lumbar area fron L5 to S1. A yearnd half later my pain was back. Again epidural, trigger pont injections and nerve blocks were tried. I even have a pain stimulator impanted in me. In 2002 I had my entire lumbar spine fused, and Rods and Screws implanted. My inside under xrays look like the Eiffel tower. At that time I had to retire on Disability. As all you know, no matter how understanding your family and friends are they really don't get your pain!! I feel quilty at times because my husband is a cancer survivor, who went through Chemo and radiation. Even though our pain is not life threatening, it does eat you inside.

Laurie - posted on 01/17/2009

I too have some serious back problems due to severe car accident I survived. I had a cracked skull broken collarbone in three places and smashed two vertabrae C1 and C2 as well as having bulging discs in C1-C5 and a few lumbar discs for good measure. The doctors said the smashed vertabrae are inoperable. I suffer from severe cluster migraine headaches often. and swelling of my spine is a problem between cortesone shots. When the swelling gets bad I am bed bound and the on come the migraines. Medication and exercise helps but only when the swelling is down. Any way, I sympathize with you.

Jennifer - posted on 01/11/2009

Oh honey, I understand. I'm 27, and I am fused from T2 to L3. I had scoliosis as a child, and it was fused at age 12. Now, the fusion is beginning to fail......I have a 20 month old at home all the time. I had to quit my job, and I am in constant pain. I can't bend over, I can't sit down or stand for long periods....it's agony. They prescribed pain killers and I try to only take them when I can't function because the pain is so bad. I have my good days, but they are few and far between anymore. I never thought this would be my life, ya know?? I'm missing out on alot. I definitely feel you though. It's really hard. I'm having a surgery in two weeks so they can see what's wrong, and then there'll be another to correct it. The exploratory surgery is necessary because you can't see anything on an MRI because of the interference the rods put off.

Eileen - posted on 01/09/2009

Hi, I can understand how rough it is to be a Mom with a back issues. Before I had my two children (ages 2, 4) I broke my back. I am fused at the T11-T12 level. I also herniated most of my lower back. It isn't always easy with the kids as I take pain meds also everyday. I keep trying new things to help the pain. Time will tell I guess if there is any help for it...

Carmen - posted on 01/08/2009

I have also had 3 back surgies.My first one failed at l4-5 and had to be redone a year later.I had always had pain down my right leg and after my second surgery the right side pain was gone but then i had left side pain.My third surgery was to make space for the nerve on the left side.I dont think it really helped and I now take neurotin everyday for the nerve pain.I totally understand what you go through and how diffacult it is to raise a family with such pain.

If you ever want to talk I am Carmen Ayers

Jackie - posted on 01/07/2009

Well, you have found me. I am definitely a mom that truly understands. I am fused at 3 levels in my neck and 2 levels in the lumbar area. I have done all the steroid shots, burning of the nerves, and everything else they could offer me. I have not been able to work since May 2005, because of pain. I have severe neuropathy in both legs, because of nerve damage in my lower back. My doctors have recently declared me disabled from the pain, because I could not even work a desk job. I am on pain meds 24/7, and am doing the best I can trying to raise a son who has high functioning autism. My 2 older children are grown and out on their own. I have a granddaughter also that I wished I could do more active things with. However, I do have a wonderful husband that has been there every step of the way with all the surgeries and recovery. He takes excellent care of me and our youngest son.

Dawn - posted on 01/05/2009

Hello Kathleen!!



I too have severe back problems and I have been told I need a fusion.. I am a little confused though about your situation I have been told the fusion would work and it says you have had TWO!! Why??? Anyway.... I had to quit working 5 years ago because of my pain and it of course steadily got worse to which these days I live on Vicodin I try to only take when really bad.. because

I'am tired of missing out on my kids life you know what I mean??? May I ask you a question?? How bad is the surgery I have not decided if I am goin to have it I may opt for the steriod shots first just to get some life back.. my kids are so young and the thought of not being able to drive for 3 months is hard to swallow..( I have to drive my 6 year old to school every day) thats enough for now talk to you soon.....God Bless