I was diagnosed with CM1 last june… and have spent the last year battling with myself deciding to have the surgery or not.
I had a very minor car accident in november… and all my symptoms started to get a lot worse. I also started to get visual distortion on the left side too.
My val salva pains are triggered easier than before… for example - prior to november I would get the pains when I coughed/sneezed a lot. But now… I only have to twist my head for it to hurt blowing my daughters food cold hurts too.
My surgeon is very confident that the surgery would help the headaches… but my other symptoms he doesnt know.
I suffer with brain fog, dizziness, tingling in hands and feet … and of course - the extreme fatigue (I hate this the most)
I had another MRI in march which my NS said showed significant chiari. And thankfully no syrinx. My MRi last year showed 12mm chiari… but dont know if its herniated more.
My question is as psr the title - except the headaches, did surgery help with the other symptoms too?
No, my surgery made my total health situation worse especially the headaches. Not to be rude but there isn't a NS that can tell you a specific symptom will resolve or even get any better. If they do, they are not telling you the truth. Every pre and post surgical CM situation is different for each patient.
Thankyou everybody for replying
I know that everybody’s recovery results vary greatly, with always the chance of making things worse.
I do appreciate your reply Tracy, I need to hear the bad as well as the good to make an informed decision. I have been considering surgery over the last year… and I have only recently been taking propranolol to prevent migraines (so far it isnt working… but I have a review to up the dosage soon)
So I definitely want to try the medications first before opting for the surgery.
This isnt a decision im taking lightly - and my hubby wants me to be prepared to accept things if the surgery doesnt work or makes things worse.
I also have a 2yr old that want to be able to look after properly… and also the possibility of having more kids… I want to do my best to be healthy and happy for them xc
I am 6 months out and if I watch what I do I do better but I have heard there is no cure for chiari ,but so far I’m still glad I did it.It is true that each patient is different and that is so true.I will not know until a year of the real results,that’s what my NS says.My surgeon told me that there are no guarantees and that I could get better or could get worse,it was so bad that I felt it was my only chance to try to live a better life.It has so far been a slow recovery but I could have never been happy to suffer without trying,the suffering for me had gone on for 27 yrs.without a diagnosis.When I found a specialist who could offer me a decent chance to get better I went for it,that’s just the way I am.The surgery does’t make things all well but it’s all there is and whether or not you choose surgery or not is determined by the symptoms because only you know when you can no longer live with the pain,it’s a gamble but I have seen more people on this site say they have made improvements than not.
Have your doctors offered any information or reason for your headaches to have gotten worse? I am in the same boat. Mine are worse than before surgery and daily. They are positional in nature, but sometimes they just come on whenever. My NL says that they are mgraines, but I cannot find any triggers and migraine medications are not helping...and I have been through a lot of them.
TracyZ said:
No, my surgery made my total health situation worse especially the headaches. Not to be rude but there isn't a NS that can tell you a specific symptom will resolve or even get any better. If they do, they are not telling you the truth. Every pre and post surgical CM situation is different for each patient.
I have Occipital Neuralgia from the surgery and a bent optic nerve. I also have major Occipital pain and Cervical Spine pain and stiffness. My headaches get worse with stress, physical activity, weather changes, certain medications, allergies, neck stiffness. I also literally feel like my head is bolted onto my spine 24/7. I did have to have emergency CM Surgeries and a rebuilt C Spine. I have a severe CM situation. The only medication that will help other than high doses of major narcotics is Fioricet. It's not a Migraine. I have Migraines and Ocular & Complicated Migraines......these headaches are totally different and commonly referred to as Chiari Headaches or Pressure Headaches. I also get Major Occipital Nerve Blocks, I have seen Pain Mgmt Specialists and Spine Specialists that treat the headaches better than NLor NS.
blowing my daughters food cold hurts too.