Feeling discouraged (& in pain)

Hi! I was diagnosed w chiari 1 in January 2021 and had decompression surgery July 2021… I felt relief for maybe six months after the surgery but after that have been in nonstop daily pain with the pain only increasing as time goes. I currently feel like my symptoms have completely regressed back to how they were before my surgery. I’m missing excessive amounts of work which brings its own stressors and am less and less involved in family/friend’s lives due to the pain and emotional toll this is taking on me. My main symptoms are daily headaches/migraines that start at the base of my skull and go behind my eyes usually resulting in a pain level 7-8/10, light and sound sensitivity, nausea, severe brain fog and fatigue, feeling lightheaded and like I will pass out frequently, a deep aching pain where my surgery was, weakness in my extremities and a burning sensation that comes and goes down my arms/legs.

Prior to the surgery my CSF was completely blocked through one pathway and mostly blocked through the other. This was what ended up pushing the surgeon to do surgery- on top of the symptoms. Now 2.5 years post op it flows normally through one pathway but “minimally” through the other. My surgeon and another neurosurgeon could not tell me the importance of the CSF flowing/if this could be a reason for my symptoms coming back and do not think I need another surgery. My neurologist has tried a wide variety of migraine medications but nothing has even remotely helped, and now thinks I have occipital neuralgia. I receive Botox and nerve blocking shots every other month and get minimal relief from these as the nerve blocks wear off quick for me. I’m told the next option is occipital nerve radiofrequency ablation, or basically burning the nerves to numb the area. I don’t fit all of the symptoms for that diagnosis but am willing to try that if it provides even some relief…

Has anyone else experienced anything similar or have any ideas or suggestions for relief? :frowning: I feel so discouraged, drained and ultimately misunderstood by anyone that doesn’t have this diagnosis.

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Hey Brooke,
It’s been a while good to see you back
I’m Merl from the Modsupport Team and although I don’t have chiari I have had lots of issues with CSF flow and have had multiple neurosurgeries to ‘try’ to deal with/manage it all. Now, I say ‘try’ to deal with it because it’s still not right. I’ve been telling the medicos there’s been an issue for many years, only to be repeatedly minimised and been given damn near every other diagnosis (including psych) as a cause. I gave up trying to find an ‘answer’. I had one specialist say to me “Well, you had brain surgery. What did you expect?..” What I didn’t expect was THIS. It’s like a lingering hangover, it’s always there. It’s just the level of ‘bad’ that varies. I’ve also been given the neuralgia diagnosis.

I too was trialled on all sorts of medications and treatments, from heart meds to epilepsy meds to migraine meds to psych meds to Botox. From acupuncture to reflexology to hydrotherapy to therapeutic massage to a TENS machine etc, etc. There were a lot of Dr’s, all with their own theory on why and how to manage it all and sure some of their ideas were beneficial, but none of them had the ‘key’ they often profess to have. I’ve been on this neurosurgical journey for almost 30yrs and according to my last neurosurgical appointment, a few weeks ago, I’ve got more coming and soon. This will be my 7th neurosurgery.

I’ve tried to explain this roller-coaster to others and their eyes just glaze over. The have no clue how bad BAD can be and to be honest, prior to all of this, nor did I. I used to get headaches, you know, the type that niggle in your temple once in a while. I had a sister-in-law who had headaches and I thought it was a female pain tolerance thing. Then they operated on me, OMG, the pain was way and beyond any measure I thought or could even think possible. It gave me a whole new education in agony.

Over those years I have developed what I call ‘My toolbox’ or differing things I use to manage ‘Me’.
I have medications, some lesser strength, some knock-you-off-your-feet strength. I have a room setup, no noise, no light, no stimuli and a bed. I have sunglasses of varying strengths, even on a not so bright day the light can be an instant trigger. Body temperature has been a big issue for me. I have my ‘Goldilocks Zone’, too hot or too cold and I become symptomatic. My house is full insulated, I have a wood fire for winter and a refrigerated air conditioner for summer to keep my temperature on a level.
I also wear baseball cap to keep the direct sun from hitting my head (It also hides all of the holes and scarring). I try to avoid my known triggers.
It has taken me many years to figure out what works best for me, tools to have in my ‘toolbox’, to be able to manage and Brooke, if anybody ever tells you this is an easy journey, they have never been here. They’ve never been in THIS position and really, they simply cannot guess at just how BAD it can be. Some people can bounce back really well, some not so well, but for others that bounce doesn’t happen at all.

It can be discouraging, draining and the lack of understanding is HUGE. We know this because we live it too, so come talk to us.

Merl from the Modsupport Team

Hi. I have so many of your issues. I am going through the worst time i have ever had. Head pain, neck pain, lightheaded, dizziness, balance issues, pressure in the base of my skull. I have some thoughts or suggestions,but its too long to write. Idk if i am allowed to give you my phone number on this site. But, if you want to talk, i am happy to call you. Connie

Brooke, I was 50 when I found out that I had Arnold chiari. Apparently I was born with it. At first it was hard for a Neurologist to admit how severe I was. I did all the nerve testing and his response is I was having anxiety and I was not bad enough to have surgery. At that time I was living In Sacramento, CA. The worst symptom was the seizure like headaches when I would strain in any way. I would hold and pull my neck up to relieve the pain. I lucked out and met someone one day at Macy’s that named a back and neck surgeon located in Stockton CA. I was off work for 6 months and 3 of those months trying to get someone to listen to me. Anyway, the Dr in Stockton happens to specialise in Arnold Chiari. I let him know I wanted the surgery as soon as possible. I had the surgery, it was a success and no more of the seizure like headaches. I ended up having Arnold Chairi II and not 1. During the decompression surgery when he was cutting my opening my head bounced up out of the halo under 60 pds of weight. He had to stop and stitch up the cuts it created. I went home after a week in the hospital, then at home the cerebral fluid was leaking out the stitches and had to go back in one week to cut me open again and use brain glue. It was a success until now I just turned 71 today and have symptoms with an Arachnoid Cyst that is pressing on the back of my head where the surgery is. I am scheduled for an MRI with and without contrast and EGG test of my head. I am feeling weak and lethargic all the time. I’m an artist and finding it hard to focus, and brain freeze. I also have tentinis which I hate. I have blood pressure problems and something they call swallow syncope. At first it felt like maybe vertigo, but now I think the cyst gives me certain numb seizures in my head mainly when I turn to the left. I have been so successful all these years and now I’m dealing with this again. I am so sorry you are going through this. I truly know how it makes you feel. It also can cause depression and bad anxiety. You are still so young. I hope you can find the answer and relief you need to start enjoying life again.

I am 59 and I had surgery in 2012. I had similar symptoms as you plus my whole body has a puffiness and ache which I did have prior to surgery and the doctors always dismiss. It did dissipate for a couple weeks after surgery but returned again. My headaches did return about 5-6 years ago however a new MRI showed no change. So, the doctor wanted to prescribe pain medicine but I refuse to take medicine and want someone to figure out why I’m in pain. The doctor then suggested I might be low in magnesium. She prescribed double dose of magnesium oxide and b2/riboflavin daily. Miraculously, the headaches disappeared. I only get them occasionally now. Usually, it’s from not eating or not drinking enough water. I’m still working on fixing my other symptoms but I hope and pray this helps you a little. :grin: