Modic type 1 & multilevel degenerative changes...
Posted , 7 users are following.
Hello all & thank goodness you're out there (I hope)!
Brief: female, 37 years of age, suffered with lower back issues for a long time, but more prominently since Christmas 2015. Latest radiologist report from MRI, various disc protrusions & bulges along with prolapsed L5/S1. I saw a consultant physiotherpist yesterday, who seemed most concerned about the modic type 1 changes found. A blood test was taken (await results) to see if there was a form of bacterial infection. I presume not.
However, the outcome from the consultation has made me feel extremely vulnerable about the future (as in, mobility, work, general standard of life). He seemed to indicate that this was simply going to be a matter of finding a pain relief regime - he said there will be times when I fall back to square one of unbearable pain & time off work as and when necessary.
Of course, my partner and I have been stripping the internet of any and all related information, but it does seem quite confused. Various people on antibiotic treatment, others having surgery (which the consultant said would be a last resort and it wouldn't be a simple case of keyhole, it would basically be rebuilding my back - which sounded extreme, to say the least!).
I have a further appointment with him in 8 weeks, another MRI in 3 months to see if the modic is progressing, but to me, personally, it seems odd that there has been no initial discussion regarding treatment, aside from gentle physiotherapy. I of course appreciate that exercise is good, but at the same time, the vertebrae are vulnerable and I really do not want to aggravate things further - do you know what I mean? I'm fairly fit & not overweight.
I see a few posts regarding MAST and I wonder if anyone out there has actually completed the course & improved?
Final question: how have I developed modic type 1, I'm so confused?
All experience & advice hugely welcome...
0 likes, 17 replies
Starryeyes83 RNS11
Posted
I'm confused as to why they are doing a blood test for infection as that's the whole thing with modic changes is it doesn't show on blood tests.
It's the same type of bacteria you can actually get from just brushing your teeth.
Apparently I have most likely got modic changes because of my surgery. When you've had disc operation's, the trauma can cause small fractures that don't even show up on scans, but these fractures let the blood through. This bacteria travels in your blood and so this is how it has entered my disc.
My consultant has asked me to do my research for MAST and at my next appointment we will discuss whether I trial it or not.
You've got to remember that what works for one person doesn't always work for another. Everyone's bodies are different and respond differently.
I'm no expert or professional but from my experience over the years, I think you will need more input then just physio.
I think you need to write a list of questions to take back to your consulrant. If after your next appointment you still don't feel happy I would revisit your GP and ask to be referred for a second opinion. I did and you are well within your right to do so!
I'm going for a more in depth scan next Tuesday as my specialist is concerned I have some sort of problem with my sacroiliac joint.
I wish you all the best and remember you aren't on your own. You'll have your good days and bad days but you will get there in the end.
All the best
Abbey x
RNS11 Starryeyes83
Posted
I think the blood test has been carried out to see if I have a spinal infection which could be the reason for the modic 1 - I do have other symptoms, such as swollen groin & neck which could be an indication of infection, but the consultant didn't think so.
May I ask what treatment you have had? I know that you are now looking into MAST, but prior to, have you had injections, etc?
I have taken all your points on board & my list of questions for the next appointment is gradually growing in length!!!
Hope your next appointment has a positive outcome, please let us know. I cannot believe we are in our 30's and in this situation, ridiculous.
Will definitely keep in touch...x
Starryeyes83 RNS11
Posted
When I first presented with back problems I was constantly written off as everyone thought I was a young girl with a bad back that would resolve itself!
In Jan 2008 I had a partial disectomy on my L5/S1. By the Sept/Oct time I was in agony again and eventually another scan revealed what was left of my disc was worn. I was advised because of my age to avoid surgery for as long as possible. But the consultant did speak about a disc replacement.
So, hence 8 years later I am still suffering. I have had to learn to live with it and adapt my life. I've been on med's since the surgery.
I'm March I think my body had just had enough and obviously things had developed and now I've got a prolapsed disc in my neck, modic changes and inflammation in the middle of my back, oh and possible problems with my sacroiliac joint.
I've had more than one lot of physio, acupuncture, used tens machines, certain back belts and cushions, osteopath, exercise amd sacroiliac joint iniections.
When I had my surgery I had severe sciatica and was on Gabapentin but my gosh did that send me daft. I couldn't speak properly and my memory was terrible. They've now marked that down as an allergic reaction.
I think I had a brief course of pregabalin otherwise known as Lyrica but I wasn't monitored properly on this and to be honest I can't remember what happened. But my consultant did mention this medication so I think he's thinking of putting me back on it. I suffer with bad nerve pain in my left leg and I have nerve damage down one side of it.
Currently I am taking slow release tramadol, x8 30/500mg co-codamol and I have morphine for my really bad days and also diazapam for when I get spasms.
I wish I could say yeah you need to try this and this and go and do that but like I said everyone is different.
Where abouts are you, are you in the UK.? I'm in North Yorkshire in England.
From what I have picked up from these chats with people is in America they do things very differently. Ive read some comments from people in the US that can't believe we can't dictate what treatment we receive.
My main achievement has been i managed to have a baby in November 2009. I had to have a cesarean and had to have a general anaesthetic as they didn't think an epidural would travel through all my scar tissue. But I got my little girl and actually when I was pregnant my back didn't hold up too bad but it did give in when I was about 8 months.
Please keep in touch and look after yourself x
scott17436 RNS11
Posted
With the fact you have disc bulges or herniated discs you should be able to get elective surgery to cure those issues either via discetomy's, decompression surgery, fusion or a combination. I don't know if this is viable since you have the Modic 1.
This is the first I had heard of this and sounds like a weakening of the vertebrae due to infection of the bone marrow/bone?? Am I right in that assumption?
Are you UK based or outwith?
What medication are you on at the moment? Everywhere has different systems of how to treat back issues, some places are much better than others.
RNS11 scott17436
Posted
I am UK based - have been given co-dydramol, naproxen & paracetamol...
Starryeyes83 RNS11
Posted
That infuriates me!! When they let me out of hospital, apparently the Neurosurgeons at another hospital (my local hospital has no neurosurgeons only orthopaedics) had said that because my MRI didn't indicate anything was being compressed, I could be discharged once my pain was under control and I could wait for a routine appointment to see them. When I lost the plot a bit and said I couldn't be left like this, I was pretty much told that unless my legs go or I became incontinent (bowel or bladder) than I was okay! Who are they to say that?
It will cost the NHS far more to fix us if it gets to that point then it would to help us now!
Unfortunately I have lost some sensation but that doesn't seem to concern them. After this I decided I actually didn't want to be seen by that team.
I got a new referral to a private hospital but as an NHS patient and I now see a Back specialist, he specialises in discs and bone.
I really do empathise with you!
Abbey x
scott17436 Starryeyes83
Posted
Starryeyes83 scott17436
Posted
ben10543 RNS11
Posted
DAMN. I just typed you a huge message, but my browser lost everything. Frustrating.
I did the MAST antibiotic treatment 2 years ago and it did help with my back pain. Not significantly, but it almost completely got rid of my sciatica. And the weird spasms where I would have to reach out and grab the wall to take the weight off my lower back.
Since finishing mt treatment my fitness has improved. One thing that has helped me greatly is the 'Foundation Training' exercises by Dr Eric Goodman. These, and his TED talk can all be found for free on Youtube. They are basically a form of half yoga and half core strength training, as he believes that our Western sedentary lifestyle is not good for our backs. It sounds hippy-dippy, but I guarentee the exercises are not. I started with his 3 min video exercises for a month, and I'm now doing his 12 min training video at least 4 times a week. It really has made a difference.
But do go for the MAST treatment, if you can. It's not a game changer, but it really did help get me moving again, so that I could be pain free enough to strengthen the muscles around my spine.
good luck, and hope this helps.
Ben
Starryeyes83 ben10543
Posted
Abbey
ben10543 Starryeyes83
Posted
RNS11 ben10543
Posted
Very interesting to read your experience with MAST. Firstly, I will be watching the TED talk this evening so thanks for the route. I too, as well as Abbey, have a very sensitive tummy, so feel a little reluctant to take antibiotics in any form.
Can I ask, has your MAST treatment helped with the progression (as in stopped, reduced) of modic, or merely just the pain (not that it is mere, I know!) - I think my thought process at the moment is weighing up whether the MAST treatment is actually worth it, unless there is a "seeable" change...
ben10543 RNS11
Posted
All I know is that it did improve my suffering. Not massively, but enough to get me back on track.
Starryeyes83 ben10543
Posted
Sorry, just really unsure as to whether I should go ahead or not.
Abbey
ben10543 Starryeyes83
Posted
My diagnosis was;
Old Schmorts nodule on endplate of L4, dehydration of the L4-L5 and L5-S1 Discs. End plate oedema L5-S1 with Modic 1. Mild posterior centrolateral prolapse of L5-S1 disc. S1 nerve in lateral recess.
Whatever that means...Basically, when my back was bad, I walked with a limp, horrible sciatica down my left leg, and the spasms I mentioned before, normaly coming a day after any physical exertion on my back. I was 38 when I went in for the MRI. Had 2 sessions of physiotherapy.
Then the MAST treatment, and now, a year and half later, the Foundation Training.
My job means I sit at a computer 10 hours a day. And I think this is the cause of most of my problems, along with general bad posture.
Starryeyes83 ben10543
Posted
My job also means I am sat for most of the day in front of a computer. Occupational health ensured I had a specific type of chair but to be honest, I don't find it particularly comfortable.
Do you have a particular type of chair to offer support?
Since being in hospital in March I haven't yet returned to work. Whatever is going on in my back at the moment is causing me great problems and a lot of pain with sitting. I just cannot sit square on my bum!
I watched the talk on you tube that you said about and I must admit when you really think about what he says, it all does kind of make sense. My problem is I am so afraid of doing something and causing more damage and I know whatever I do is going to hurt.
Did you struggle when you first started with these exercises?