Chiari

Thank you for accepting me to this group

My wife Paula was diagnosed with Chiari in May of 2013 after being initially diagnosed with MS by her GP. An MRI scan showed she had a herniation but slightly more worrying was that her spine was falling apart just below her skull

In September 2013 Decompression surgery was performed along with a fusion of the spine ( I cannot remember the technical name of this procedure)

6 months down the line and the symptoms were no better, little use in the left and side of her body, difficulty to walk any distance, poor balance, tiredness, pain, suicide headaches etc etc.

Having seen the consultant again and taken a second opinion with a respected specialist in the UK Graham Flint it was decided that the two of them would re perform the surgery with Graham Flint performing a removal or reduction of the cerebellum tonsils. As far as we are aware this surgery went as planned and Paula had two MRI scans post surgery. I have to bear in mind that there is quite a lot of metal work on the back of Paula's head which is holding the spine together as part of the fusion.

The surgery was performed on the 11th November and Paula came home 10 days later, and this is where I am in the dark. The post operative care from our system in the UK is not good.

I am worried about the pain and discomfort Paula is in, she is taking some medication, Naproxen twice daily, along with codeine and Paracetamol. She has the option to take a liquid based morphine, but this makes her terribly sick and has stopped doing so.

My worry is that we have gone through this whole thing twice now and I cannot see any improvements, the headaches are constant and she can barely walk to the bathroom. Sleep is difficult and every night around midnight the pain becomes unbearable for her and her legs go in to spasms, the only comfort she can get is from a very hot shower.

Any guidance would be welcome, or will things get better over time

I look forward to hearing from anyone.

many thanks

Jim

Yes, you are doing a great job of being supportive and proactive. A question…did she have her skull fused to her spine or was the fusion on vertabrae only?

Jenn

Thank you

I will look up POTS and Dysautonomia. We were not given a surgical collar this time, but I can easily get one for Paula to try. Open extension MRI was performed earlier this year but we have not had one since the latest surgery. I have no doubt Paula is suffering, I see and hear her struggling every day, and the most frustrating thing is that I cant make it better or go away, and trust me I would take the pain for her if I could. All the words you use stinging, pressure, muscle as well as many others are familiar to us some of them not repeatable. At the moment the pressure headaches have subsided, so going to the loo, coughing and laughing do not cause the pain they did, this was the same for the first three months after surgery last year and then they came back. I think you are right most of the pain is the trauma from the surgery and inflamed scar tissue. For the last three days Paul has had a throbbing headache around her forehead and pain in her shoulders as well as the stinging itching and throbbing from the incision itself.

Other effects particularly her legs going in to spasm or her left arm are quite regular and seem to flare up at night

Jenn the full description of the first procedure was Foramen Magnum Decompression Craniocervical Fusion

Tonight we have gone back to the morphine after getting some anti sickness tablets from her GP, so I can only hope this will subside the pain so she can at least get some sleep, she did not sleep at all last night.

I know no one can make any promises or guarantees, but Paula regularly asks me when will it all go away, how long will the pain go on for, I am unable to answer her honestly as I just dont know. I tell her it wont be long

I have looked up dysautonomia, and Paula does suffer some of the itesm listed, in particular swallowing and a build up of mucus in her throat, as well as extreme fatigue

Thank you again, it is just nice to share some of this as I think a lot of our family and friends really do not understand what she is going through.

Any tips or advice on how I can make things a little more comfortable or easier for her during her recovery are greatly received, luckily Paula's parents are staying with us until Mid January until they return to Australia, so she is getting round the clock care from all of us.

JIM

Jim

Does she take muscle relaxers? That should help the muscle spasms at the least! I hope Paula feels better soon! She is early in her recovery so hopefully things will improve quickly!

Jim, so that’s good she had a cranial cervical fusion- but can be a painful recovery. The muscle spasms can cause a lot of pain not to mention the bone pain. A lot of us use Arnical gel - it’s over the counter anti inflammatory. An RX muscle relaxer is helpful. I’m so sorry she is in so much pain, please let her know we are thinking about her and sending prayers.

I had the cranial cervical fusion with a second decompression 4 months ago. It was more painful than just the decompression. I had some weeks that I was worried about pain levels and if it would ever go away. But now it has evened out and the headach is consistently low, a 1 or 2. Tell her to hang in there and you too.

Jenn