Can't take anymore
Posted , 7 users are following.
Hi guys, so the latest is I had an annual MRI on 8/5/17 to keep an eye on the thoracic arachnoid cyst but a few days later something changed with my lumbar, Iv suffered with chronic pain 14 years now but it felt like my lower back had come away and that's the only way I can describe it, a certain way I moved also felt like something was sticking in me so I thought maybe the fussion had broke or a screw or something, my GP sent me for an emergency MRI on the 8/6/17...anyway Iv spent the past 7 weeks in exrutiating pain when I try to walk, stand or sit and my pain has gone from a 7 to 9-10.
My results are that there dosnt seem to be any change when comparing the two and that no nerves or discs are compromised. I am at my wits end now and can't imagine carrying on with this pain it is seriously mentally messing with my head, I am so down at the mo because I feel like there are no answers to putting this right if nothing has shown up.
I am going to have EP TESTS on Thursday followed by EMG tests and seeing a phycotherapist on Wednesday to help me manage better with the pain, how can I be in so much pain and there be no change on my scans? Could it be that my back is just knackered and that's it.
How do you carry on like this when there dosnt seem to be any hope of getting better
0 likes, 24 replies
mike09523 Carolineq8
Posted
I am not up to speed with your case, what meds are you on at the moment.
Constant pain will make you very depressed so pain management is very important.
Hope you get sorted soon, sounds scary,
Best wishes,
Mike
Carolineq8 mike09523
Posted
Hi Mike, thank you for your reply,
I had an l4/5 fusion with hardware 14 years ago
Diagnosed with thoracic arachnoid cyst t2-6, five years ago
Cervical degeneration with multi level bone spurs c6/7 bulging disc plus lordosis and multi level disc bulges
Opiod withdrawal twice
Diazapam withdrawal once
Gabapentin withdrawal once
I dont take meds now as I dont personally think they helped me but made me ill losing a lot of weight, brain fog and chronic fatigue which could have been down to the fact I was vit d deficient.
The past month or so has been terrible but I am feeling better today (mentally) also I see my chiropractor 1-2 per week who I think helps me more than any meds have.
Hope your well 😊
socksmom Carolineq8
Posted
Is this your first post? Sounds like you are in a terrible mess. What started all this misery, if it is ok to ask? Feel so bad for you. I have been dealing with twisted back for a year after just SCS trial. Pinched nerves immediately, muscle spasms followed. Still no answers. I have like small knots in muscles now and Soo stiff can't hardly move with breathing problems from rib muscles tight, shoulder and all out of place .
Carolineq8 socksmom
Posted
Ah that's awful, have you tried a chiropractor? Mine has worked wanders for me. I suffer chronic rhomboid and trapezius muscle spasms because of the cyst and cervical issues.
I had l4/5 fusion 14 years ago
Thoracic arachnoid cyst which I believe was a result of the fusion and now cervical degeneration.
Hope your having a better day today😊
socksmom Carolineq8
Posted
Carolineq8 socksmom
Posted
Ye physio made me worse it flared the cyst up and it lasted weeks so was reluctant to go back, it's the whole muscle not just knots and my shoulder blade feels like the bones being scraped, I'm going for EP tests (evoked potentials) then EMG tests ( electromyogram) which test the nerves and the muscles responses and activity, I hope I get some answers from them. What's your next step it sounds like your suffering terrible as well, try some peppermint essential oil, it dosnt solve the problem but I found it has a weird numbing/tingling sensation that takes over the pain somewhat for a short while, let me know how you get on, I hope you get sorted real soon 😊
Carolineq8
Posted
Also have you tried ice packs, they also help me a lot, tens machine? Theres got to be something, gentle stretches, your ribs are attached to the thoracic so what did they do to you to cause this to happen? I would push further and even a second/third opinion 😊
socksmom Carolineq8
Posted
Thanks Caroline. I have been on my own since May 24 2016... Immediately after very pain SCs trial It started when I sat up with pinching in shoulder. The pain was gone in hand and arm so yes I was excited! Imagine my disappointment when I got red, swollen.breathig problems, stomach problems, back spasms, and leg weakness within 2 days and had it taken out. I kept telling these people for 2 weeks and they said go to primary care doc, was not related! Problem was he don't do comp! Went to ER 2 weeks later and they called the pain group and they then saw me 8 am next day and ordered MRI(no contrast?). Said only small paracentral at c3. I went on for months follwing up as they thought I had hernia and then heart trouble and maybe pulmonary high pressure. After lots of tests, which I had to pay big co-pays for cause they would not say this was related to SCS trial, all was checked out ok. They had said to have my PC doc send results before they would see me again! I was on 60 morph sulf. 2 daily and they stopped that to give me nucynta. I had my nose full of this PM group and just went off of meds altogether so I would not have to deal with these guys. Everytime you called with a problem the nurse had 2 a swers...sounds like you got the flu or a cold...I told her my last call that I was having wirhdrawl, explained how my nose was running terrible and her reply was"you don't get a runny nose when in withdrawal"....Now this is pain management nurse I have been dealing with. I almost lost it that day and a few more other days I did? They just shook their heads after each visit and never heard of these things I was dealing with after SCS implant????reps and doctors. Wish I could do over would not have done it if I had known true risk involved. They talked like it was minor elective surgery or getting tubes put in your ears or tonsils removed. It was not! I think I just vented again!
Carolineq8 socksmom
Posted
Omg that's disgusting I'm so sorry you've suffered like this, I'm fuming!! I can't imagine what you must be going through.
I also done withdrawal so I can't sympathise with what you've gone through.
What do you plan to do next and have you got a doc looking after you? Do you have support at home?
You can rant on here any time mate that's what we're here for, take care and keep in touch, I hope you get sorted soon 😊
socksmom Carolineq8
Posted
HA ha ha I know people here do understand...the frustration, you're crazy look and everything the look implies and the reports they send to every doc you go to .CYOA! I have not much hope after a year but go to nuerologist Friday....will see if he wants to help me. God helps us all!
Carolineq8 socksmom
Posted
It's a hard fight I know but you can't give up or give in 😊
james57451 Carolineq8
Posted
Hi Caroline,
I'm so gutted for you that you're in such a horrible situation as if you're back is poorly it makes everything else 10 times harder.
Where is your fusion situated, like which vertebrae are fused and how long ago was the surgery performed?
Although your situation is obviously having major impacts on your daily life, it may sound stupid as I'm sure you've already tried it, but I find that physiotherapy is the only thing that keeps me going throughout the day. Also, Pilates seems to be good for lower back pain in particular, although these suggestions may not be suitable for your current state, I'm not sure.
Psychotherapy will definitely help when it comes to the mental side of dealing with the pain for sure, it may even help mask the pain for you so it won't be as noticeable as it is currently!
It's strange and extremely frustrating that you're in this situation and know your pain is real but there's no scientific reasons showing up on your scans so it's extremely hard to pinpoint where the pain is coming from.
I have heard that sometimes, fusion surgery tends to have the opposite effect of its purpose over time, like as in the pain tends to worsen in other areas and degenerate the vertebrae below and above the fused section of the spine. Has your surgeon/GP listed this as a possible reason for your pain? I just realised its unlikely your surgeon will tell you this considering he is the person who did the surgery haha, but it definitely would be a good call to get a second opinion on your MRI to see if there is something that was missed by the person who read it firstly.
Hope you're feeling better soon and get to the bottom of what is going on!
Carolineq8 james57451
Posted
Hi James and thank you for your reply, physio dosnt work as it flares everything up, my neuro surgeon now isnt the same one that done the surgery but they all stick together anyway. After my next lot of tests if I still don't get any answers then I will be asking more questions, I'm also getting a copy of all my scans and sending them off to be read by someone else who isn't connected, I will keep yous posted 😊
james57451 Carolineq8
Posted
Oh, that's no good then! Lol, that's a great idea, I cut ties with my neuro as he was useless and am doing the same as you, getting a second opinion from a different surgeon.
I hope you get the answers you're looking for and remember that you won't always feel like this even though you think you will.
Take care! 😊
Carolineq8 james57451
Posted
Thank you James 😊
Carolineq8 james57451
Posted
Hi James how are you doing mate? An update....my surgeon said it could be a loose screw and that he could fix it no problem, then he sent me a letter saying it's wear and tear and nothing more could be done, so I went for a second opinion privately in January and was told I have no ir very little fusion left and offered revision surgery, take everything out from the back put bigger screws in then flip me and fuse me through the stomach, 4 months doing nothing up to 24 months recovery, devastated!! So it's took me a while to get my head around it but I think I was mentally ready then I went back to see him on Wednesday and now he's not sure if the pain could be coming from my SI joint, I'm going to be fitted with a brace for 3 weeks then go back in April where he will hopefully know what to do, if it is the SI joint then it will need to be fused as well so another big opp. I have deteriorated a lot over this past 10 months and spend most of my day lying down as it's the only time I get relief, leaving the house to do anything is just horrendous and I suffer so bad afterwards, I hope your doing well 😊