Info regarding Chiari follow surgery

Brain and nerves
1

Hi all,

I had a decompression along with a laminectomy of my C1 back in december of this year. I was headache free for 4-5 months and i dont remember feeling that good in a long time. But then about 5 months ago the headaches started coming back, different feeling bu just as frequent. I still have headaches everyday with little to know relief. I hate having to arange my days around my headaches. The neurosurgeon that performed my surgery had a repeat MRI and my brain was structural fine and the would no longer be seeing me. About a month ago i had my GP give me a referral to a headache specialist and was started on a nerve pain med. It has helped a bit but the headaches are still present. I am a nurse and have tried anything possible to fight the headaches and i am running out of options. Any suggestions are greating appreciated !

thanks for your time.

2

Hi I also had a laminectomy along with the decompression. I find it hard to put across to doctors that I experience what seems like a few different kinds of headache. Some, that are very sharp, respond well to pain meds whilst others, like the more dull, gnawing headache is much harder to shift.

It is very difficult but really try and observe if there is any difference for you. Do you suspect a certain activity sets the pain off? Is it around the same time each day? What other symptoms accompany the pain?

My own experience has been that 2years after surgery my neck is still so weak. I know i struggle with tilting to look up and down so am conscious of that. I have recently suspected that the neck weakness is responsible for the dull headaches, despite my neck not feeling any worse.

I think this because I get to a point where NOTHING will help the head pain except taking all weight off my neck and lying down. Surprisingly it is quite hard to fully relax, I have to really concentrate and see if I am adjusting my position to talk to someone or see a tv etc.

The longer I go without lying down, the worse the pain gets, along with nausea and dizzyness (not to mention irritability!).

I am not saying this applies to you, I am just saying that in 2 years there are still many things that I have not fully observed and questioned.

Before the headaches came back, had you been icreasing your activity levels? You may not notice that you are on your feet more, and therefore asking more of your body.

My advice is to pursue this with your doctor as best you can, but for now have a think about what I am saying and see if there is any way to improve your day to day experience of this.

If you want ot ask anything please feel free, I can only talk from my own experiences though. Try not to worry, you have already proved you can handle alot. Please keep us updated.

3

Hi There, I am sincerely sorry to hear about your condition, I can imagine how suffer you are just like me, people wouldnt understand how we are feeling unless they are having this condition, because we look normal, in my opinion, rather than kee using too many drugs which is only suppressing the symptom not curing it, I will be more assertive to ask the GP to be seen again by the neurologist and ask them to refer you to have a second opinion to see mr Aspel (Neuro surgeon in Nottingham) if need be perhaps see him in private..then write a letter to your local ccg (clinical committe group) in your local area ask your GP who would that because by law they NHS have to provide each individual with a ''quality of life'' you have pay your NI contribution that what is for..express how terrible and concern you are...and just ask them to help you...I am sure with your assertive but polite, your gp/s certainly have a duty of care to look after you...in the meantime..try to ask them if they can prescribe you topiramate.I used to have it when the headache was so excruciated..its help me a lot...but GOOD LUCK.

4

Hi there, thank you so much for responding! It truly make me feel better knowing that the symptoms i experience, other have as well.

I too have different versions of headaches. some i can control and others that tend to reach a point that i cannot come back from unless i lay down with an ice pack on my neck. I also get nauseous and of course irritable.

I usually wake up with a headache, it lets up and by 12 or later it begins in my nose and works its way around my head until it feels like my brain is throbbing against my skull and ice is the only treatment besides laying down that helps.

I plan to discuss all of this with the specialist in november.

I have spent so much of my life fighting these headaches and i had so much hope the surgery would make them go away for good, i had a few months of freedom and it was wonderful.

I would just like to not have to worry about my head all day long..

i truly thank god for the days i get without pain, they may be few but i sure appreciate them

thank you for your feedback, i am so glad i can speak with others about this.. and to know you all know exactly how i feel.