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I'm going insane!! If you're in the same boat please reply!!

Started by bobby'sgirl on 03/05/2012 10:43am

Hi all,

Well seen as I have just joined this group I guess I should start by telling my story of how I got here!! Any advice or anyone who wants to chat who are going through the same as me would be much appreciated!!

I woke up one Sunday morning last September 2011 and an hour later I could hardly move. The following day I got numbness and paralysis in my left arm and leg and had severe pain in my lower back which was more excruciating upon sitting or lying flat on my back or stomach. Although the numbness subsided after a couple of weeks the pain was as bad as ever and I was referred for musculo-skeletal/ orthopaedic physiotherapy where I underwent an MRI scan. I had all sorts of physiotherapy including traction, acupuncture and hydrotherapy none of which helped before I was formally diagnosed. In December I was diagnosed with spondylolithesis L5/S1, degeneration of 2 discs and a herniated disc between L4/L5. I also have Pars defect and spinal stenosis on both the left and right hand sides.

I am a 3rd year PhD student and have now been off work/studying for over 5 months, I struggle to sit stand or walk far. The only way I can get comfortable is lying on either side. I can't even sit through a meal, I have a bed downstairs, struggle to walk up the stairs and I am practically housebound, I fell down the last few stairs a few weeks ago and have now aggravated an old ligament injury. If I do go outside I am very slow at walking, can't walk far due to the chronic pain and have a constant limp. I'm taking ridiculous amounts of medication which only seem to numb down the pain and I am awaiting an appointment for the pain clinic for spinal injections. My neurosurgeon said he will operate but only as a last resort due to the complications and he basically said it was a very nasty operation.

I would love to hear off people going through the same thing. I feel so isolated and alone, I am usually such an upbeat person but I feel this is beating me and I am so down and tearful.

Hope to hear from any of you fellow sufferers soon!

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(Warning this is long and ... from Jacquelyn-Leigh
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Im so sorry you're in so much pain. Dont have surgery!!! Try pulsated eloctromagnetic field therapy (See PEMF.com) I heard about it on Dr Oz and my chiro purchased a mat for me to be the guinnea pig. I have severe DGD at l5-s1, si joint dysfunction, piriformis syndrome, hypermobility disorder (my thigh bones dislocate from hip s ocket) I was a mess and have been out on disability on & off for years. I've been doing PEMF therapy for 4 weeks and my pain has been reduced by about half!! I think I'll be drug free and practically pain free in another month or so, And it's non invasive. You just lay on a mat for 20 minutes per day!! My chiro bought a 15k mat from germany. I pay 200 per month for daily therapy. I plan on buying my own mat if this works as well as I feel it will. There are mats for 3-5k but there are fakes out there so watch out. Find a good chiro who will do the same for you as mine did. He's Matt Colman at Hayes Valley Wellness and he's been my savior. Good Luck!

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(Warning this is long and kinda ranty)
First I am so sorry to hear you struggles and pain. I hope you know you are not alone.. I hate to be the fellow sufferer, but yet here I am. I am 28 with grade 3/4 spondy. No trauma that I can remember. I may have been born with this, but because I have never felt pain, I have never felt the need to have an x-ray until last year.

Last February, I started having leg pain in my left leg while walking only.No other problems. I could hardly walk a block with out my leg feeling like it was breaking. I am blessed to have great doctors and a very loud voice. I only let the pain go on without a known reason for 2 weeks. My gp sent me right away to a pain doctor who ordered an MRI. Once he saw the MRI he was freaked out and pretty much told me he can't help me then sent me to a neurosurgeon who then told me to find a specialist . For someone who had never even broken a bone or sprained her ankle and never complained of back problems in her life, I was freaked out to say the least.

The first surgeon told me the surgery was a must but very risky. I actually didn't feel safe with him because he was checking with others surgeons to see the best way to open me up. My gut said he is not my doctor. I did a lot of research online and found my current neuro-surgeon who is amazing. He told me to wait on surgery for right now because once I cut there is no going back. He sent me to pt and a team of doctors who are amazing. I love my pain doctor who pretty much keeps me pain free.

I get injections to stop the nerve pain, I actually need to go back because my last injection didn't work:(. He usually gives me 6 injections 3 on each side and this time only 2).

I too was very upbeat and always on the go and loved to go out and be with my friends not to mention a major gym rat. Now I pretty much stay home and ice my back every Friday night. I struggle to work some days, but push myself. I am trying to not be the victim and let this consume me, but it is a real challenge to not be consumed with this especially when you hurt. I am depressed most days because of all the things I can not do.

I know this is long but know what you are feeling is how others feel. I don't wish this on my worst enemy. Please know I am here for you to help you not feel so alone. I have educated my self on Spondy . If you need a support buddy please know I can be that buddy. I hope you feel better soon.


Just fyi with Spondylolisthesis a chiro may do more damage. I know with higher grades 2/3 you are told to stay away from them. My old job many of my clients where chiropractors and they all said that a good chiropractor will not work on my back. Too much risk involved.


I had a paralyzed left arm in Nov. and Dec. of 1994 with no movement in my neck.

I could not even put put the shower curtain rings. I sat and cried.

I did go to the chiropractors every day for 2 months. The adjustments made me almost normal.

They also used electrical stimulation.

After that I just had to not work as a maid or rake the yard. I'd have to vist the chiro but slept great.

Once ever 3 months I'd vist a chiropractor that teaches chiropractics, Dr. Kevin James Regan in Chicago, Il..

By 2000 in March I had to quit working a conventional job.

The rest is in my websitewww.wewerenotputheretosuffer.com

Dr. Harel Deustch is the best nueosurgeon at Rush in Chicago, Il.

I had emergency surgery in Jan. 2008 on the C5-6 fusion. No scar either. Sewn inside out.

In 2003 I first saw a sugeron that wanted me to take medication. I did not resonate with him.

Being clairaudient told me to run also.

I finally did the research at the library on the quest to find teh best neosurgeons in the area.

Then all my Energy Therapist made corrections on the doctor, nurse, ect. andme of course. lol lol

I do ot have pain unless I aggravated the other disk now all in phase 1. the C6-7, L5-S1 and T5-6. What I did is listed in the disk degeration posted.

I don't have sex often.

Recovering sends me to the regular chiorpractor of nucca chiropractor more that the regular 5 day I get the thoracic and lumbar roll.

I go to the nucca chiro for the cervical once every 1 1/2 or sooner.

Going since May 09.

Nucca is all over youtube and it will change your life.


Sharon Kay Mustin Summerford

I am in no pain.

I figured out how to get out of it.

Look up shower curtain sytem undermy name. I am an inventor also.

upper cervical chiropractors that also adjust the rest of the spine are best.

try different ones. that take the insurance you have.

Not all chiropractors are great.

Plus neurosurgeons tell you not to go to chiropractors and chiropractor never tell you to seek out getting an mri or going raw. foods for inflammtion

always go to the chiropractor and try to get adjusted at home. easy press on the back with one hand over th eother and then the lumbar rools and try lifting also . the person lifts you up under the rib cage while your arms are folded arcross your chest.

I drink lots of clearly filtered water with organic lemon. I eat organic foods mostly and little meat which can cause inflammation and constipation.

I take turmeric pills if in pain and stay clear of any kind of pills man made asprin except when I have aggravate the disks which is not that often.

fish oil and flaxseed oil plus aloe vera juice berry flavored. non dairy pills plus the ultar toddy with cell shield by youngevity.

I tested for vit d but am ok now but got a presecription for it anyway plus progestron cream.

amour throid is best if you have hypothyroid.

the magazines that list the top doc in the usa are checkbook are at the Darien,Illinois library.

find at top doctor near you plus contacting a second opinion at the mao clinic is not a bad idea. always get an mri and new x rays if not sleeping after the chiropractor appt. in 48 hours the next day expecially if you are not aggravating the disks by lifting or pushing any weight. be still and sit in cushioned seating. see if the pain does not come back

If you are in pain and not sleeping well seek out the Neurosurgeon asap. do not be afraid. get a top rated hospital in checkbook magazine with doctors that have the most mentions and recommendation.

young living oils will help so call them and get oregano oils for infections and so many others.

hot showers help to and detoxing.

clay pills and kelp help with x rays.



Sorry I have not replied earlier!! I am still suffering badly and seem to be getting messed around left, right and centre!! So I have been to see a private physio after asking my GP about a chiropractor and being warned off straight away!! I had started getting more symptoms in my arms and shooting pains through into my fingers when going to pick anything up. I mentioned it to the GP who re-referred me to my neurosurgeon who said he will image my cervical spine next time I see him (I have two appointments cancelled)!! I was referred to the pain management clinic 2nd Februrary and it is now 24th May and I am still fighting tooth and nail to get an appointment. I am apparently going to try steroid injections into my bilateral pars defect...only the day after I received the letter from my neurosurgeon saying this he changed his mind to I was to have an epidural (this was 1st May)....Anyway I am still waiting, nobody can tell me when I am likely to get an appointment and I am going even more crazy!!!!
My mobility has decreased....I can't walk as far (probably about 10 steps without stopping in agony)! I went to see the private physiotherapist who was amazing!! She has specialised in spondy for 20+ years and had lectured at a university for the past few years. She told me to challenge the neurosurgeon as even if I have the injections it is not going to do anything to help my bilateral foraminal spinal stenosis!!! MY friend who is a nurse and I did ambush him and he said that I will try an epidural, then 4-6 weeks afterwards if there was no improvement he would book me for surgery!! (trust me I am willing to try anything after not having a pain free day since 18th September last year)!!
My daily medication now consists of 8 x 50mg tramadol, 8 x 500mg paracetamol, 3 x 50mg diclofenac, 3 x 5mg diazepam and a transtec buprenorphine transdermal patch 70mcg/hr, 2 x senna laxative tablets and 2 x 15 ml lactulose solution.
I have no quality of life at all anymore!! I still can't sit and now can barely walk, I am still sleeping downstairs and I am so lonely and depressed!!

Has anyone ideas what I could maybe try and do next?!

Best wishes,

Gem x x x



I eventually got seen in a chronic pain management clinic after waiting over four months!! Was assessed and booked on the theatre list the following day for facet joint injections, caudal epidural and medial branch nerve blocks from L4-S1. I have been practically bed ridden for over a week, pain is just starting to ease slightly after 8 days but still unable to sit/ stand/ walk/ or get comfortable really!! They round L5 vertebrae to have decreased in height during the procedure...still not sure if it is due to the spondylolithesis or pars defect. Also got called in for another urgent MRI scan the same week. Any advice re injections would be much appreciated!! x


Hi Bobbi, I just wanted to share my journey. It began march 21st in 2009. I was at work, when out of the blue, my left leg began to feel heavy and sluggish. Within an hour, both legs had had this heavy sluggish feeling and I found I could not control my leg muscles when I walked. I walked like I had a bad case of cerebral palsy. I experienced no pain, just weakness, heaviness and an inability to walk normal. It was just beyond my control. I went to instacare which immediately sent me for an mri of my brain (to test for MS), and of my lumbar region. My brain mri came back normal, thank god!! My lumbar one did not. I already knew I had DDD and spondylolisthesis at l5/s1, but I was getting care from my chiro. Dr who did my mri said I needed back surgery. My spondylolisthesis caused severe bilateral foriminal stenosis which resulted in significant bilateral root nerve compression at this level. I won't go into the next 11 months her, but I had my fusion surgery with implentation 11 months later. It took 9 hellish months, but I'm greatful Ifinally had the chance to have it!! Its been almost 2 1/2 years, and I've got my life back of which I'm so greatful!! I work full time, I'm able to pursue my hobbies and interests!! Never give up, or give into despair for life is such a beautifulprivelege to be part of, and soooo much worth every effort toward happiness! May ybe abundantly blessed!! ~Namaste~


Hi again, I wanted to add, in defense of chiropractors...they are the first people I go to or reccommend others go to for any spine issue!! They are experts in the muscular/skeletal system and have had to go to 6 years of med school to become so skilled. Their specialty IS the spine, and all issues surrounding it. Western doctors have not had the extensive education and training in this field like chiros have.:-)


Hi bobby’sgirl!
I am sorry you are going through so much. I thought i would offer my experience in this area.
I have had scoliosis for the past 20 years with spondylolisthesis, narrowing, stenosis etc.
It finally got bad enough that I needed a fusion which i have been avoiding like the plague for years for reasons you mentioned. I had an 8 level fusion with hardware on april 3. It was very painful and the 1st month was really tough. I have continued to progress at a really fast rate, already on the spin bike, elliptical, at the gym, walking miles etc. I attribute my success #1 to my amazing surgeon and #2 to my drive and my physical fitness.
THE most important thing was finding THE doctor which took visits to 6 other physicians and lots of research and asking recommendations from doctors i trusted. Finding an adult spine specialist is important.
But first, I suggest trying injections. The first set i had lasted 10 months and I was pain free! after that the second one lasted 4 months and the 3rd set not at all. I also suggest working with a physical therapist to balance and strengthen your back, core and body in general. One who specializes in backs.
I wish you the best, I can only tell you that living with the pain for all those years and being afraid of the surgery was wayyyy worse than where i am now. PS i am pain free :)


Hi bobby'sgirl, how are you doing? i hope you are doing better from the last time i read your message on this board. i'm sorry, i just want to hear that you are doing okay. I don't have any problems as you but i am struggling with very minor symptoms compared to what you had and i know how it is to feel isolated and alone. again, i wanted to know your progress and to tell you that you are not alone. If you want to talk to someone about whatever reason or you just want to vent, i am here for you... i am saying this because no one is there for me when i have a pain episode, i just feel lonely and cry and i just fall asleep. that's the reason why i am trying to be there as a friend so that you know you are no alone. Also what got me out of the pain not completely but got me out of the horrible pain and numbness on arms and legs was this procedure called NUCCA i started in April but in May i didn't go to see my NUCCA chiro, i was stupid and had two different regular chiros crack my neck and that's when my problems became worse but in June of this year, i started with my NUCCA chiro again and i'm seeing better days. take care Bobby'sGirl and again you are not alone... send me email whenever you need it. i wish someone was there for me when i was at my lowest but no one was, family, friends and even co-workers were tired of me cry, complain about my pain so no one wanted to be around, it was really bad for me but my boyfriend got me out of whatever i was feeling with his constant love and daily calls and he would just not see me in pain, he will talk to me normal so that i would feel normal... we both kept each other company since he too suffers from whiplash pain on his neck, shoulders, back, and numbness of his arms. we are both doing much better now that we have each others company... i believe that talking to someone, venting to someone one is a good thing for the soul. so if you ever need to talk or vent, please send me an email at lolitatheone at yahoo dot com. i really hope to hear that you are doing much better.


I had 2 rounds of injections into the facet joints....ugh I can only say that I gave birth without an epidural twice and one was with back labor, I have had kidney stones, I will never have another injection in my back....I could not walk, I have fibromyalgia, and it went into overdrive, it took over 4 months to even try to settle down....that is the odd thing with fibro you never know what will make things work or kick it and this certainly did....I did the ice packs, it helped a little, of course I take hydrocodone, and soma, that did not touch it, so I do not know what to tell you, I do not know where I am supposed to go from here either, migraines, fibro, restless, chronic leg and back and oh yes the dr's will treat you like you are looking for meds, we that are in pain do not ask for any of this crap, we really would love to have days to just be normal what ever that may be, have had migraines for 48 years, fibro for 30 years, a few wrecks to mess everything else up so I would like to wish you all the best of luck and hope that your dr's are better than what I have found.....


I just joined too, I just need to find similar people in the same situation as I so I can cope better with my disability. It's a super long story how I got to this point in my pain journey, which I will gladly share if it helps. I really just want you to know I am in the same condition as you and from what I read I can relate to your story. I am in counseling finally just to learn coping techniques to help me live with this pain. Please just keep doing what you are doing and stay positive OK and no matter how many doctors tell you, this is it this is what you have to live with, keep your faith that it will get better, otherwise what else do you have. Please know I understand how you feel and living in constant pain is extremely hard. God bless.


try upper cervical chiro but always get the mri and seek out checkbook magazine for the top surgeons for the spine near you.


Dr. Harel Deutsch from Rush University Medical Center is the best. He performed my artificial disc replacement (ProDisc) on my L5/S1 degenerated disc on September 9, 2014. I would highly recommend seeing him for any sort of back surgery.

I had been suffering low back for 5 years. After 6 steroid injections, 3 ryzhotomies, Protherapy, PT, Yoga therapy, TENS therapy, pain cream and narcotics. I decided to have back surgery. Dr. Deutsch is one of a few surgeons in the country that can do a artificial disc replacement surgery. He was the surgeon that did the ProDisc trials for the FDA to approve the disc 10 years ago. I am 3 months post op and the surgery was a success. I am 95% pain free. I can walk, sit, sleep, and stand again without constant pain. My recovery was flawless. Went back to work after 8 weeks.

For those of you who have low back pain caused by a degenerated disc consider an artificial disc replacement instead of fusion. The disc surgery results in shorter hospital time, shorter recovery time and preserves the natural movement of your spine.

Best of luck to anyone. Back pain is a horrible challenge to live with. It affects every area of your life.


Hi. I'm new here but I can share the experience I've had.
For years (10) I've had lower back problems which affected my performance at my managerial job. There would be days that I can't move unless I'm hunched over and in pain. Eventually about 3 yrs ago the pain extended down to my leg and toes to the point where I could walk for more than 5 mins without my leg giving way.
I've done over the yrs the physio-therapy, the ice, the swimming......you name it all till I was just fed up.
I've been to so many doctors and specialist that I think I'm a better expert on this damn pain than them. Anyhow, one day an office collegue of mine who had both lower back and neck pains told me about a specialist that she had used and, trust me, she's as fit now as a fiddle.
I got the guys number and gave him a call. He did the Mri and showed me the problem. He wanted me to go through the therapy again but I told him no, just give me the next best option which happened to be surgery. He told me what the risk was but I told him anything would be better than spending my life on a roller coaster of pills, doctors and therapists.
I had a herniated disc which press end on the sciatica......we all know how that feels. I was prepared to be wheel chair bound but not in pain for the rest of my life.....that is how serious I wanted my life back.
To date, I can walk, have no pain and I'm thankful that I met him.
If anyone wants more contact info they can contact me.
Hope this helps


I would say to try to lean forward and see if that helps with the pain any. I know how you feel, I have spinal stenosis, and I have been down since November, and ready to go crazy. I want to do so much more with my life than spend it on the couch or in my bed. I can get up for short spurts, but anymore than that I am down for the count for at least a couple of days. I would recommend trying to see a pain specialist, get some referrals, do some research, because a good pain specialist can make a huge difference, one less efficient, can do more damage. I do firmly believe the best way to start is with the pain specialist.


Hi everyone, I too am new to the site. I have been living with pain for 12-13 years. There isn't a day that goes by that I don't hurt anymore. I have Oa, DDD, stenosis, scoliosis, bulging, herniated, pinched, something with the facets and the list goes on from T2-L5. The only reason I don't have anything going on with the neck is bc it has been fused from C3-C7.
I woke up one am with a "kink" in the left shoulder blade, I thought I could go to work & just work it out. I never did work it out. It seems like a zillion years ago that I have lived with this. I started with chiropractic, massage & injections it all worked great in the beginning.
About 5 years ago I had to stop with the chiropractic bc I couldn't have anyone touch the center of my back. It was one of those pains that just put tears running down your face w/o even thinking about it.
I have been in pain mgmt for 4-5 years, I haven't worked in just as long, this is my 3rd go around with pt. Every Dr I saw said it can't be your Thoracic it's the strongest part of your spine. I know this but that doesn't make it stop. I've been getting injections every 6-8 weeks with no relief. I now eat pills like candy & the NP I see at pain mgmt acts like I am a junkie.
I feel like I'm in prison bc I don't go out due to the pain. I only bathe 2-3x a week bc it's too hard to get in/out of the shower.
I'm sorry but this is not living this is barely breathing. I'm sorry this is so long, I truely don't wish this pain on anyone


I empathize completely!


I understand how u feel. On Feb 2014 i got out of bed and fell to the ground my left leg was completely paralyzed. Was taken to gospital and had a discectomy on L5. Pain continued constantly. I had several epidural shot to try to relieve the pain but didnt work. Finally one year to the date of previous surgery I had spinal fusion L3 to S1. Felt great for about two weeks. Now i am in constant pain the meds just take a little of the edge off. It hurts to sit, lay down and walk. I have to constantly change positions. Im sorry your in pain but i honestly can relate. The drs. say im doing great but idont feel that way. Im so tired of being in pain. It does drive you crazy. I thought this surgery would relieve the pain but it hasnt. I have felt so alone and thought it was just me but i am so glad there are other people in the same position so i know im not alone. And i dont mean im happy others are in pain i meant that others can relate to my situation. I dont want to be in pain for the rest of my life or be on tons of drugs. Its just so frustrating


I see this is from 2012 so not sure if you will see this or even reply back. I just had ACDF surgery to my neck on C-5-6-7 and ii am going in to my 5 week after surgery. I still have numbness in my right arm and index finger along with my thumb. The weird thing with me after two weeks of the surgery, I lost some of my right chest muscle mass which now looks flat compare to my left side. Of course my surgeon believes it is not repeated to my surgery but I will be seeing him on May 27, 2015 to discus this further since it his still flat and still have very little strength in my right arm. Now I just started getting bad headaches which I wasn't getting before. I home since its been almost 3 years since you posted this that you are feeling much better and you are doing well now.


Bobby'sgirl, Hi. In 2002 I had ACDF from
C-4 to C-6. Still in pain from discs above and below area of surgery. (C-3, and C-6 to C-7)

Ask your Dr. about a drug called **Kadian.
It's a time released pill for chronic pain.

I was put on Kadian 60 mg. twice a day.
WAY TOO STRONG . Now on 30mg.
twice a day.

Ask your pain management Dr. about
Kadian and ask to start on a Low Dose.
(20 mg X 2 day)

**Kadian is an opiate so be careful.
Ask your Dr. about the pros and Cons of the drug.

Good luck. Bapfin