My story in short

General
1

Hi There.

My name is Claire.

I was diagnosed with Arnold Chiari Malformation in March last year after suffering headaches all my life. They got worse about 10 years ago and became exertional in nature. Ive always had balance issues but put this down to just being me! I could never ride a bike for instance. My hand-eye coordination has always been poor and ive been generally fatigued for years.. there are loads of other chiari symptoms that ive got which im glad i can attribute to something finally.

I was finally refered to a neurologist after suffering from 2 seizures last year.

I had an MRI and the malformation was found.

My neurologist was very blaise about it and said i could have surgery but there were risks and 'you dont want that'.

I was put on a drug called lamotrigine and it helped the headaches initially, but they came back, not quite as bad but there never-the -less.

Im never without a headache of some sort. but now they are usually bearable and i can continue to work. but im pretty sick of them to be honest.

I went back to see the neurologist in October and asked to see a neurosurgeon.

I saw a lovely Registrar in December who said ive got a significant malformation, and a tight foramen magnum and would be an excellent candidate for surgery.

Ill be having a Foramen magnum decompression and a cervical laminectomy.

I also have a swollen optic nerve on the left eye, apparently due to the raised intercrainial pressure.

Im relieved that someone has finally listened to me and i cant wait for the surgery as im hoping it will change my life.

But im terrified of waking up in agony.

Can anyone give me an idea of what to expect please?

Im a nurse which doesnt help as having a little knowledge makes things worse i think!

saying that ive never worked in Neurology.

Any help/advice would be great. Many thanks.

claire

2

Hi Claire...

Welcome..Glad you posted this...Many of us had been blown off by neurologist..like yourself...so frustrating!! So, that being said, I am glad you found a surgeon who will help you.

I had my surgery a little over 4 yrs ago...when I woke up in the recovery room I was in a lot of pain, BUT..the staff there was great...they made sure my pain was under control before I was sent up to ICU for the night..I think that is protocol after this surgery...send 1 night in ICU then go to a regular room.

Honestly, the most painful part was when I had the bandage pulled off!! Seriously..the dried blood that was stuck to the hair surrounding my incision was guncked up and , man, when he pulled that off...hurt like heck...

During my hospital stay the nurses and my doc made sure that I was medicated properly...not oo much, that I could not get up..and enough that I was not in God awful pain..Please don't get me wrong..it was painful., but it eased as the days passed.

My issue was nausea..that is what kept me inpatient for 8 days.

The surgeon will send you home with pain meds and mine also sent me home with muscle relaxer..Soma..for my neck..since he had to cut all those neck muscles.

When is your surgery?

I had staple..some folks here had stiches...when he took the staples out ...no problem..no pain..just pressure when he pulled them out.

Do not be shocked if you have new symptoms after your surgery....they were short lived for me and my NS told me it is common due to the CSF flow being compromised for so long and my brain/body re-adjusting to the new flow casued some new issues for me...but , like I said, thankfully, he was right..they went away.

Please let me know if there is anything I can share with you ..that I left out.

Take Care,

Lori

3

How many Laminectomies are they going to be doing? Are they planning on doing a Duraplasty? That has a lot to do with post op care & comfort. Ask your Neurologist if he is going to control your pain mgmt & headaches post op or will he refer you to a pain mgmt. specialist? If so go ahead and make an appt. I did not have a positive post surgical situation. Many Members have though and with you being a nurse you are already a step ahead. I would also recommend a stool softener waiting at home.

Tracy Z.

4

Thank you for all your advice!

Im not entirely sure whether he's doing a graft (is that what you mean by duraplasty?) and im pretty sure he's only taking the first vertibrae (sp) C1. He hasnt said much about post op pain management. He just said the anaethetist would discuss that with me.Ill be going to a Pre-Op assessment at some point and i can bring it up there as well.

Ive got to have a fundoscopy before this to check on my swollen optic nerve.

Have you experienced that?

Ill keep you posted!
Thanks again for all the advice!

Claire
TracyZ said:

How many Laminectomies are they going to be doing? Are they planning on doing a Duraplasty? That has a lot to do with post op care & comfort. Ask your Neurologist if he is going to control your pain mgmt & headaches post op or will he refer you to a pain mgmt. specialist? If so go ahead and make an appt. I did not have a positive post surgical situation. Many Members have though and with you being a nurse you are already a step ahead. I would also recommend a stool softener waiting at home.

Tracy Z.

5

Everyone seems to have a different experience after waking from surgery. It all depends on your pain tolerance. I woke up in a bit of discomfort but didn't hurt very badly at all. In fact the first thing I told my family when they came to recovery was the this surgery was much less painful than my tonsillectomy. Twelve weeks later I still say that if I had to do one over it would be the brain surgery!

I had the decompression, a C1 laminectomy, and the duraplasty. I got released from the hospital the day after surgery and went back to work at 6 weeks. I was original set to go at 4 but I have chronic mono and had a flare up.

So for me personally I had an easy recovery with very little pain. I gathered from the nurses that most people have more trouble managing the pain so I don't want to give you the impression that recovery is easy! It definitely varies from person to person! Doctors know this is a painful procedure so let them know if you are hurting and they will give you something!

6

I have (so far!) had a very similar experience to Anglyn, I believe we had the exact same surgery. I was in the hospital 3 days. When I woke up, I was in mild discomfort but the nurses kept asking me practically every 5 minutes to rate my pain on the 1-10 scale and would put pain meds in my IV until we got my pain down to about a 5. Thursday will be 4 weeks since my surgery, and I feel pretty darn good. I feel ready to go back to work but am giving it 2 more weeks to be safe. In the interest of full disclosure, I do have a desk job. :) I threw up once the first night in ICU, but nothing since.

Honestly, I was out shopping (like, for hours at a time) on day 6 after my surgery. And I felt fine. As many have mentioned, everyone's recovery is different, but please don't automatically assume it's a nightmare. Don't baby yourself, but just take generally good care of yourself and you should do just fine!

7

Lol Im one of the people who woke up in agony. It was a hour of hell, I wont lie. BUT after that, my recovery was textbook smooth and as long as i took my pain meds on time, i was relatively pain free. (I was pretty drugged up for two weeks). Other than the first hour, i’ve had worse pain- like kidney stones. Best thing you can do is try to relax, take it as it comes and don’t be afraid to say “i need pain relief” if you need it. And definitely have someone in charge of speaking up for you if need be. I wish you luck, i understand how scary it is.

8

I am a Nurse. I had surgery June 4th 2012. Do give your body time to adjust. Remember it is surgery..brain surgery that is. Your body and emotions are going to got through alot. I tried going back to work in Nov. failed miserably and had to break down and think. I wish you the best and remember to take it easy & take care of yourself first.

9

Hi! thank you everyone for your advice!

Im getting more relaxed about it.

Im so looking forward to it too, which baffles people when i tell them!

I should have a date for surgery soon, will keep you all up-to-date.

claire.x