Update on problems I had with my head last year

[Purplegloss]

I have put what happened to me a year ago in a previous post, but can't find it at the moment. Anyway I will give a brief rundown of what happened. I got up one morning, and had a dreadful pain in the back of my head, left side behind my ear. It was really frightening, and it felt as if my brain had been shaken. I had an MRI scan, which showed some problems with small vessel disease which is also present in the pons. Cervical spine showed degenerative changes , changes also in C1/2 facet joint, but no obvious root compression. There was also facet arthropathy in the upper cervical spine particularly the left and some foraminal narrowing possibly at C5/6 and C6/7. I don't really understand much of this I am afraid!

The report said, I could do nothing or arrange to see a spinal consultant, I chose the former. This was probably a bad decision with hindsight!

This year I have been having problems with my head again, sometimes wobbly, can hear a pulse beating in my head and at other times just muzzy. I have been worrying that something was wrong for about a year now, and last night I had a private appointment with a Neurosurgeon. It was a relief to talk to someone who would understand what was going on.

Well, he told me that I have a serious problem, and he wants to run some tests, and do a CT scan taken at various angles. He is swapping me to NHS under his care. He tells me it is urgent, which is what he is putting on the letter back to my GP. I asked what my options were after he has all the information he needs, and he said, either do nothing if I can live with it, he may need to do an injection into the troubled area, and the last resort would be that I may need him to do an operation.

So, I was quite shocked at this as you can imagine. He also said that my inflammation in my blood, could be coming from this source, and maybe I don't have PMR. Using steroids all this time would have helped the situation of the inflammation in my head he said, and since 2017 when I was diagnosed starting at 20mg, I am now down to 3.5mg, I am not to reduce whilst all this is going on.

In 2017 before I was told I had PMR I had a very bad virus for many weeks, and during those weeks the pain at the back of my head was unbearable at times, and I had to lift my head off the pillow with my hands, he thinks the two things are linked, and I did notice on my medical record all that time ago, that there was three question marks put there by the GP as I could easily lift my arms above my head and had no shoulder pain either. Sorry for the long post!

[SheffieldJane]

Gosh! He sounds thorough and well worth consulting. It does leave you in a frightening quandary though. I hope that everything unfolds in the best way possible for you. Let us know the outcome.

[PMRpro Ambassador]

This post?

healthunlocked.com/pmrgcauk...

Is the leg thing you mentioned in the next post connected?

Scary but at least the person you have seen is switching you straight to the NHS. All the best.

[Purplegloss in reply to PMRpro]

Thanks for putting my original email up for me to read PMRpro it was interesting to read it again. The leg problem I believe now was due to my reduction of the steroids-withdrawal symptoms. The muscles were playing up in that area, and my leg kept trying to give out, and make me fall over. However with painkillers and rest until it got better again was what was needed. I did not go up on my Pred, and at the moment I am not in any pain or stiffness due to having reduced to 3.5mg. Have to stay at that now of course until all the investigations are carried out. Only have soreness/stiffness at the back of my head and neck area. Thanks for replies everyone. Onwards and upwards hopefully.

[Broseley]

That's so worrying for you. I had very similar symptoms, pain in the back of my head behind my ear, but I also had jaw pain and claudication, though no issues, like you, with my arms and shoulders. I was diagnosed with GCA and PMR due to the pain and stiffness in my back, hips and knees but I'm now wondering if there's more to it.