My girlfriend has been in constant pain for 6 years - slipped disc and a torn disc
Posted , 9 users are following.
Hi,
I am writing for advice from anyone who can help, i will outline the situation as best i can.
My girlfriend is called Rosie and she has been dealing with pain in her back for 6 years ever since she lifted a box in college at the age of 18.
Rosie visited many doctors early on who were equally as dismissive of her as the next. I believe an x-ray was done by one of these doctors who evaluated it as being nothing wrong, they believed growing pains were the issue. She was prescribed tablets for pain relief which didnt help much. Other doctors did start to explore what could be causing the pain and looking at family history, they believed it could be AS, so they tested to find that the HLA-B27 genetic marker was present in her blood. This lead to doctors to make the assumption that this was the issue. It took a long time to get to this point already when she was referred to physiotherapy to learn exercises to make her pain more manageable, we tried yoga to help, a lot of heat patches, going on walks to keep the muscles active and prevent stiffness with Naproxen to manage the inflammation.
As time goes by, rosie's pain only gets more severe and has some mornings that its so disabling that she cannot get out of bed without crying, cannot make it into University lectures or make it into work, needing assistance from me just to go to the toilet, help that no 20-24 year old should be needing. As the situation gets worse we think it could be more than AS, we visit many doctors in different hospitals hoping for someone to care, to no avail. Doctors dont want to give her x-rays or MRI's so just keep getting referred to pain management or physiotherapy.
Eventually we find a doctor who does care, who takes the time to locate and examine the x-ray that rosie had taken 4 years prior, from the very beginning of this issue.
This doctor determined that rosie had a slipped disc in her lower back... which couldve been identified 4 years before at the beginning! Instead we spent years doing exercises and activities that in fact were only exacerbating the pain and the damage. This good doctor obviously needed an update from a 4-year old x-ray and so put rosie in for some scans. This brought to light that she now had a slipped disc AND a torn disc. She was offered the Root Nerve block injection, which helped a lot for a few months as she was also now experiencing sciatica in her legs.
After the injection wore off, the possibility of another was off the table through the NHS i believe, not considered a free treatment anymore. So Rosie occasionally uses pain medication to deal with her back at the moment but with a lot of the options being either insignificant in the relief they give or make her feel drowsy (which she cant have at work), she has resorted to a herbal method when she gets home. A lot of herbal alternatives for pain relief she cannot have because she is allergic to a lot of plant-based products, but we managed to find one that helps a bit.
Rosie deals with her pain remarkably well but as we are in winter now, with temperatures a lot lower it is becoming more common for her to spend almost every morning crying in pain when she has to get up for work and drive into work. It is also now affecting her performance at work as her pain affects her breathing which affects being able to talk on the phone and meet stats requirements for the company she works for. Caught between a rock and hard place, needing money to live but needing time off (which will be unpaid) to look after her health, constantly getting pressure from bosses who are aware of the issue but have very little compassion or consideration for her.
She has currently been trying to survive a year in the company to ensure she gets some sick pay when she has to be off work for 3 months for a lumbar discectomy in March 2020.
I guess i am writing this on her behalf because just today she has been in tears all morning and is having a very difficult day and I feel helpless to do anything to ease her suffering.
Is there any advice that anyone can give us on how to best deal with the pain especially in the colder months? And I really just want to know what options are out there to try and fix this problem completely as we've been told that the discectomy will most likely only help with the sciatica pain and that theres nothing that they can do for her back ( or are willing to do to). How true is what we're being told? Would a private practice specialist be able to repair the damaged vertebrates? Are the NHS not giving other options to fix her back because its too risky for them or cost too much?
From countless bad experiences with doctors not believing that a young girl can be in so much back pain, the misdiagnosis which only led to further damage being done, these have led us to having a hard time trusting what we're told and really need to seek the help of multiple other opinions and expertise.
Thank you for your time to read this and we really appreciate every response.
0 likes, 8 replies
Onlyraj adamB27
Posted
I am in USA and a veteran of 5 surgeries (4 in lower back and 1 in neck). Sounds like you are in U.K. so I am not familiar with your health system. I do sympathize with your situation though. Your girlfriend needs to be seen by a Neurosurgeon and for sure an MRI needs to be done - this much I can tell for sure even being a non-medicine person. I cannot say that all my back problems has resolved but I don't regret having the surgeries because my spine was collapsing and at least now I have lingering pain to deal with. I am almost 60 but Rosie has lots of road ahead of her. You need to be aggressive and have consult a Neurosurgeon not even an Orthopedic. Don't take this condition lightly.
janet90745 adamB27
Posted
I agree that she needs an MRI. I had a spinal fusion one year ago. I also would be in tears trying to get ready for work. I feel great now. So glad I had the surgery. By the way, I think you are a terrrific boyfriend for helping her through this for so long. Good luck!
CHICO_MARX adamB27
Posted
I agree that she needs more detailed imaging. An MRI is OK but a CT/Myelogram with contrast is the absolute "gold standard" test. Next, this should be ordered by a competent neurosurgeon. No one else. Neuros rule the spine...period.
If there are disk problems impinging on nerves, the simplest, same day op to free up the nerve roots and relieve the pain is called a decompressive laminectomy. I've had two...both very successful. 90% of the pain is gone immediately with the rest, caused by the inflamed nerve(s), dissipating over 7-10 days.
If it's more serious (collapsed disk?) you now have two vertebrae too close together pinching off the nerve roots running from the spinal cord, through the vertebrae via the foraminal canals and out to your body. In one of my cases, it was a bone spur crushing the sciatic nerve root at L4. Otherwise, the foramina get compressed thereby pinching off the nerves. One of the ways to correct this is with a fusion where the disk material is replaced by spacers that set the vertebrae further apart eliminating the pressure on the nerve(s). For me, I've had two fusions with one more scheduled in six weeks.
The first was a TLIF where they go in from your back and use rails, spacers and screws. This was very successful from T3 though S1 but required 10 days in the hospital, wearing a brace for 6 months and 3 months of outpatient rehab. Ugh... My send fusion was a single, one-level op at L2/L3. This was done via an LLIF...Lateral Lumbar Interbody Fusion (or XLIF or OLIF)...where the docs go in from your SIDE, drill out the bad disk and replace it with a spacer device that expands like a car jack. Yes, they use an actual Allen wrench to screw it open to desired distance. Great for one and two level fusions. One hospital overnight, no rehab, no brace, immediate pain relief...miracle op.
Recommendation: See a neurosurgeon to get the imaging and a definitive diagnosis. If the lamiectomy is recommended, do it ASAP...simple op. If this requires a single-level fusion, see a neuro who has lots of experience in the LLIF procedure. Search "Globus LLIF Technique" for a cool animation of the op and "Globus ELSA" to watch the device in action.
PS: My upcoming fusion will be a hybrid. First, dual devices inserted from the side at L1/L2 and then T12/L1. After they close, I get flipped over where they unzip my back and put in the rails that will not allow the implants to shift. One week hospital, one week at home...no rehab. Fingers crossed. Oh... To back fill the devices, They need a lot of bone so I'll be losing my lowermost left rear rib which gets put in a blender set to puree and then injected into the devices to start the required bone fusion. Told my doc that if I'm giving up a rib, he's gotta get me an "Eve" in return. Sorry...no dice...ratz..........
So, again, this starts with a neurosurgen and imaging. Then the diagnosis and fix. No one should live with this kind of pain when it's fixable. Take this one all the way to the top and get it done!!!
sylvia38199 adamB27
Posted
Your girlfriend definitely has my sympathy. I have been suffering for many years with back and prolapsed discs trapping my nerves.
I was all prepared for an XLIF operation on the 26th November when it was suddenly cancelled due to my liver function test being too high to operate. I too am in between a rock and a hard place now and feeling devastated. Good luck with your surgery. xx
CHICO_MARX sylvia38199
Posted
Gotta get that XLIF!!! Mine was literally a miracle op as I suffered from foraminal stenosis at L2/L3. The results were instantaneous when I woke up. One night stayover, no brace, no rehab. Amazing...
Just remember that some neuros won't do this because it involves the use of a general surgeon to do the open and close. Many would rather unzip you from the back and install rails and screws. ALWAYS check out the LLIF/XLIF/OLIF first. Yes, people use different names for basically the same procedure.
Mine worked out GREAT!!!
Seafarer123 adamB27
Posted
So very sorry to hear about your girlfriend's pain, and at such a young age. A couple of comments based on what you said:
(1) Pain meds - I've noticed in a lot of posts on this site that folks seem to not want to take pain meds of any type of strength, even when their pain is severe. While surgical cures are important, they can take a long time to schedule and often a long time to work after they have been performed. In the meantime you are in constant pain, 24/7. If her pain is so severe that it is leaving her in tears and interfering with her quality of life, the pain needs to be reduced. At the very least she should be on either tramadol (aka Ultram) or codeine and if those don't work, something stronger like hydrocodone. Understand that simple NSAIDs (tylenol, naproxen, aspirin) just don't work for this kind of pain - even if you take large amounts, they simply "cap out" in terms of pain reduction and can be a waste of time - she needs some type of narcotic. And for her sciatica, she might consider gabapentin (aka neurontin), which generally works well and is well tolerated - you can take a fairly large amount of it without serious side effects and it can be very helpful for nerve-related pain, such as sciatica.
(2) Scans and the Right Doctor - As mentioned in other comments, you don't want to waste time with the wrong type of doctor. In ordering up films and interpreting those films, you don't want to waste time either with a general practitioner or even with a pain specialist. You want a RECENT MRI or CT-scan, with contrast, and you want those films reviewed by a specialist, either a neurosurgeon (preferred) or at the very least an orthopedic surgeon. I don't know how the NHS works in terms of referrals, but do what you have to do to get your films to the right doctor.
(3) Decompression Surgery - you mentioned she is scheduled for some kind of spinal surgery to repair her discs and that you anticipate a 3 month downtime for recovery. Unless the NHS refuses it, those surgeries can be done on a "micro" basis, in which you are back to work in 3 or 4 days. Typically they do a micro-laminectomy (breaking through a small area of the vertebra to get to the disc) and then a micro-discectomy (repairing the disc). My surgical scar from those two procedures, done to repair bulging and herniated discs, is smaller than a US nickel coin. And I was sent home the next day, and approved for work on day 4. There is no need to have a 4-6 inch scar and be out of work for 3-6 months anymore. Be insistent that the surgery be done on a "minimally invasive" basis.
(4) Other Treatments - There are other treatments that can be considered, such as more epidural injections (did they really refuse to do more?), a procedure known as a "radio-frequency ablation" (check it out via google), the implantation of a "spinal cord stimulator" and of course the commonly mentioned spinal fusion surgery. Generally speaking, though, for most people who are in pain due to disc damage, the simpler laminectomy and discectomy mentioned above is often good enough for your first treatment - although many people find that their back problems return in 4-5 years, but at least you get 4-5 years of relief.
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Very sorry to hear that dealing with the NHS has been such a nightmare. Good luck with her treatment...
CHICO_MARX Seafarer123
Posted
Lot of agreement here. I would however caution on any long-term use of the opioids. Here in the States, literally zero docs are prescribing them anymore for fear of prosecution. Yes, the Tramadol is the mildest of them all but either: a. it won't be strong enough to help; or b. the docs won't even prescribe it. While the pain shots never worked for me, they can be helpful even if they work on a short-term basis until the surgery is done. Note: Diabetics need to be extremely careful as these are steroid injections that can raise blood sugar levels dangerously high. Be careful.
I always recommend finding the root cause of the pain and fixing it. Yes, you typically climb "the ladder of care" from GP to chiropractor to PT or acupuncture to pain shots. However, if it's a true spinal issue, surgery, at least in my case, always turned out to be the solution. You will hope for the decompressive laminectomy/diskectomy (worked twice for me) and only get presented with more complex solutions when required. My back is relatively unstable after 45 years of playing hockey, thus the fusions.
Get second opinions and find a neurosurgeon who will, as recommended, order the correct imaging and be able to interpret it correctly. The penultimate step will be a definitive diagnosis and treatment plan. If it doesn't "feel right" to you, find another doc. You don't screw around with spine issues. Gotta get it right the first time.
Last Note: The COOLIEF (cooled radiofrequency ablation) procedure has been proven to be very effective for pain resulting from osteoporosis of knees, hips, shoulders and elbows. I have not heard of it being used on the spine. Do some research on that. If true, it can last between one and two years as the nerves transmitting the pain are deadened (ablated). This is a simple 15-minute procedure done under sedation. After going through both hip and knee replacements, I will absolutely go this route when knee #2 starts to act up.
Regardless, except for the spine surgery, all other solutions are temporary in buying some time but not fixing the root cause. I try other modalities but always end up at my neurosurgeon's office when all else fails. One time, I had a bone spur crushing my sciatic nerve root at L4. Nothing was going to fix that but the laminectomy and spur removal. Again, easy, same-day op. I hope it's that simple for youzeguyz...
andrew36262 adamB27
Posted
I highly recommend Theraflex treatments combined with NCT treatments and stretching exercises. I have been told that I will not be able to avoid spinal surgery but after these treatments I am functioning just fine again. I had my treatments at Blue Pine Clinic in South West London but I am sure you can find therapists who do this sort of therapy close to where you live. All the best, Andrew.