Occipital Nerve Injections for ongoing pain management

[Miiimiix]

Hello,

Just looking to see if anyone has any advice / can offer any reassurance on my current situation!

Long story short......3 years ago I suffered a subarachnoid haemorrhage and have since recovered reasonably well. However off of the back of that I was diagnosed with a rare and complex spinal AVM which has remained untreated due to the size / location and nature of it.

This unfortunately continues to create ongoing pressure at the base of my brain and I suffer with a lot of extreme headache / migraine type pain along with dizziness and neck stiffness.

I've also had a query made by one neurologist over a diagnosis of something called Paroxysmal Hemicrania which they believe is adding to the pain and is effectively a condition caused as a result of the embolization surgery on the day of my haemorrhage.

Due to the levels of pain its become difficult to find a medication that works without nasty side effects and also difficult to maintain a normal daily life at times.

I am still trying to work full time and do all the things that normal social people do! (easier said than done) but am failing most of the time.

So it has now been suggested that they may try to use a series of Greater Occiptal Nerve injections into the occipital nerves at the base of the skull to try to block these pain signals to help with the pain.

As far as I have read this is something usually used in the case of extreme migraine sufferers but I've not been able to find any literature anywhere of it being used on anyone following a BI or Haemorrhage. So I'm feeling very reluctant to go for it as the procedure itself can be a bit of an ordeal and the effects may only last temporarily...... on balance I cant decide if this has the potential to make things worse as opposed to better as the treatment has such a mixed bag of reviews?!

Just wondering if anyone else has any experience with this type of treatment at all?

Thanks,

Mia x

[spider555]

I don't know but you could email a Neuro in America.

[Miiimiix in reply to spider555]

I wouldn't even know where to begin! Such a rookie with this stuff. I've tried to have a read through the Cleveland clinic and Mayo clinic stuff?

Any suggestions / pointers?

[spider555 in reply to Miiimiix]

Cleveland and Mayo have good reps but they don't always reply. Best thing is finding out where your problem is.

[spider555]

Cluster headaches ? It says Walton centre, Liverpool.

[Miiimiix in reply to spider555]

I guess it is similar to cluster however it comes from the Spinal AVM which is where my reluctance to go for the Occipital injections is coming from. As even with the injections my AVM will remain untreated and the underlying physical condition is still there and working away to create ongoing pressure / hypertension which is why I'm wondering If the whole process Is going to be an extremely painful waste of time.

I can see its a great idea for a typical migraine / headache sufferer but never heard of it used in this circumstance??

[Miiimiix]

Ive decide to complete an access request to gain full access to my medical records so that I have everything I need to forward onto neuro teams elsewhere in America and hopefully get a bit more advice.

Just so difficult as I cant find anyone in a similar situation or with a similar history / treatment plan to compare with.

[spider555 in reply to Miiimiix]

Good luck.

[joben45]

hi, i just came across your post searching. Did you have the procedure? my son is having this done on monday . He had an accident boxing 18 months ago and his recovery has been slow . The accident cut a main artery in his head and he has post concussion syndrome . He still gets terrible headaches and is on amytripyline and gabapetin. His lastest MRI Sscan was good - his neuro says he has been left with " nerve damage"