Back again needing more removal surgery

[JayMoe]

So im back again, its been a few years since i was here last, by my recollection i think it was 2018 after i had my first lot of metal work taken out of my neck... Well, even more i playing up now with it all, yay for softer bones due to my NF1. Currently on the waiting list to be seen by a specialist clinic before im referred to a consultant near my new place of living as I've moved away from where i was when i lived with my parents.

My question to you all is who has experience of multiple revision surgeries where they removed metal work? How did your body react and how long did you need to take out of work to fully recover. Mine won't be until 2022 (yay for covid and the NHS) at the earliest but I want to make sure I can go to my work place with something to make sure they can get cover for me while off. If anyone on here happens to be from the UK and knows of where a list of consultants can be foound that would be ace too!

any advice would be greatly appreciated.
my fusion is from c5-t12 (with a few fancy bits of work done by my amazing surgeon)

[jackieg412]

Removal is fairly easy. Depending on the amount I would say 4-6 weeks. If you don't have to have removal, it is better to leave it.

[titaniumed]

Jay, Sorry to hear this....What's going on with pain? Have they shot any x-rays?

Here are a few links...

https://sauk.org.uk/

https://sauk.org.uk/supporting-you/find-a-specialist/

https://www.ctf.org/news/fda-approve...eatment-for-nf

I am fortunate to still have all my bits and pieces...

Say Hi to the Queen for me

Rod

[JayMoe]

Removal is fairly easy. Depending on the amount I would say 4-6 weeks. If you don't have to have removal, it is better to leave it.

Yep, but this is best in my eyes as i get lots of tension headaches and neck pain because of the protruding metal work. I just don't want to be taking pain killers for no reason as i don't want to be dependent on them. (i joke im the office drug lord due to all the ibuprofen and paracetamol i carry with me LOL)

Jay, Sorry to hear this....What's going on with pain? Have they shot any x-rays?

Here are a few links...

https://sauk.org.uk/

https://sauk.org.uk/supporting-you/find-a-specialist/

https://www.ctf.org/news/fda-approve...eatment-for-nf

I am fortunate to still have all my bits and pieces...

Say Hi to the Queen for me

Rod

Pain most days is non-existant but the days i have issues its bad, can lead to a small migraine which makes me just want to be vom.

No x-rays just yet. Still waiting to hear from the clinic, I phoned and left them a message on my lunch break at work as the date has been and gone. I should hear back from them in the next 2 days now.

Hopefully not too long until i have a few questions to my answers i don't like being in limbo like this.

[titaniumed]

Jay, I feel for you as I have had some light degenerative cervical troubles (disc herniations) and still un-fused....and I must say that the neck problems are tough to deal with. It completely wipes me out sometimes and have to lay down....

They will probably want to shoot MRI's also....

Hang in there and let us know what happens. You are the only NF1 case posting...

Ed

[JayMoe]

Jay, I feel for you as I have had some light degenerative cervical troubles (disc herniations) and still un-fused....and I must say that the neck problems are tough to deal with. It completely wipes me out sometimes and have to lay down....

They will probably want to shoot MRI's also....

Hang in there and let us know what happens. You are the only NF1 case posting...

Ed

I feel you there with the neck issues. Had terrible neck and back pain the last week, mixed with knots all the way down by right shoulder blade. Only way to relieve it all is with pain killers. Just willing the winter to go now as its got very cold so my neck is constantly seizing up

Good news though is I've finally had my referral through from the doctors. I'll be seen on the 1st March as they are fully booked until then. I'll be giving the booking office a call to see if anything can be done about being seen earlier. The surgeon I'll be under seems to be good. Also, not a huge travel too to see them, only in the next city to me which is a 45 min bus ride away (about 10 miles) so at least i no longer have to travel 4 hours to London to be seen each time I need something.

I thought with having all the metal in me, MRI's were no longer a viable option? I thought it would only be a CT that they could do?

I'll be on again with more info as to what they will be doing once I've been seen.

[LindaRacine]

I feel you there with the neck issues. Had terrible neck and back pain the last week, mixed with knots all the way down by right shoulder blade. Only way to relieve it all is with pain killers. Just willing the winter to go now as its got very cold so my neck is constantly seizing up

Good news though is I've finally had my referral through from the doctors. I'll be seen on the 1st March as they are fully booked until then. I'll be giving the booking office a call to see if anything can be done about being seen earlier. The surgeon I'll be under seems to be good. Also, not a huge travel too to see them, only in the next city to me which is a 45 min bus ride away (about 10 miles) so at least i no longer have to travel 4 hours to London to be seen each time I need something.

I thought with having all the metal in me, MRI's were no longer a viable option? I thought it would only be a CT that they could do?

I'll be on again with more info as to what they will be doing once I've been seen.

Hi...

Steel implants will distort MRI images by producing artifacts in the general area of the implants. They will actually also distort CTs in the area of the implants. Titanium implants will distort the images less than steel. So, if you have spine implants below the cervical area, the images should be clear. Nonetheless, be sure that the technicians know that you have spine or other metal/titanium implants.

--Linda

[titaniumed]

CT and MRI are both safe with scoliosis hardware, and it's all about the optical distortion as Linda states. Halos and white spots around the hardware. I had CT's done looking for gall stones and you can see the brightness on the screw heads.

They might do an MRN which is used for looking at nerves.... It's a modified MRI.
https://en.wikipedia.org/wiki/Magnet...ce_neurography
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367943/

One of the things I do now is to go on standby for a cancellation. That way, I don't have the guilt should I miss an appointment, and I fill the spot when somebody misses an appointment. You just have to be ready to go in when they call you. This might get you in quicker.

I would also ask about other pain medication options.

Do you think your pain is all weather related? Do you notice that its worse before a storm moves in?

Ed

[JayMoe]

So, its been a sweet minute since I was last on here!


I was seen by a consultant who wasn't a scoliosis specialist April last year, who quite frankly was abysmal. Told me that nothing was wrong with my neck as there had been no change to xrays since they were last taken in 2019 when I was under the care of my specialist team. His main issue was that because I got on with life that there was nothing he wanted to refer me on to and to just live with it.

Things this year took a turn where things got a lot worse. Due to all our doctors striking now for fairer pay, my appointment has been changed a number of times. I do have to admit, I forgot I had an appointment so missed one. As I wasn't too happy with the care this person gave me I decided to self fund private consultations to see what answers I could get. My first appointment the consultant said it definitely looks as though things had come off slightly way back in 2019. One CT scan later shows my upper hooks are now no longer on bone. He's also diagnosed my with 'Dural Ectasia'. It sounds fancier than it actually is. (basically my Dural sac around my spine balloons out fairly significantly in a few places)

He's said that the reason for the continued pulling out of my metal work is due to my bones being softer due to my NF1 and that over time the bone sadly just erodes away causing the detachment. However, he doesn't know enough to continue putting a plan in place for me to get transferred to the NHS for treatment. So I'm going to see another consultant at the end of August as he knows way more than my current one about everything. Once this is done, they will put a plan in place and they know who the best consultant is to put me into the care of; so that im not being played pass the parcel with delaying things further than they need.

Along with this, he reckons that my curves are progressing despite the fusion, so they have proposed being see once to twice a year to monitor this, and then intervene with a proper revision surgery if it ever gets to that stage.


My pain does get worse with the weather, right now we're having storms every other day it seems. So the cold and damp isn't being too kind right now. But I just wear a neck warmer when in the office as the air con is a bit too chilly for me to be comfortable. Right now, I don't think they're concerned about my pain management as paracetamol and Advil do just the trick.


So not the best of weeks for me with all this news having been brought to light, but I'm glad I'm now getting the answers to what I have been 98% sure were correct but not being able to get them answered. So as expensive private health care in the UK has been for me, its been well worth the cost!