Weird Side Effects

I had my surgery for my spinal fistula in 2015. I actually don’t have a neurololgist, I only have a neurosurgeon and I haven’t seen him for almost two years. I’ll be seeing him again this year, but I have been having some difficult things happening to me. I don’t want to write a novel, but probably a year and a half ago, I started having massive headaches, pressure behind the eyes, dizziness and vertigo that went on for about 2 months. I met with my family doctor, and he did very little. These did pass though, but I have had some lingering things that haven’t gone away since. I feel pressure kind of in my neck, tenderness and tingling in my face (when I touch my face it kind of sends a small shock through my body), vertigo and major anxiety (because ofwhat is going on).

My family doctor is big on blaming anxiety on everything, and a lot of what I was going through are symptoms of anxiety, so he put me on anxiety medication. The medication definitely worked, as my anxiety has gone done quite a bit, but I am still feeling all the other symptoms. Basically, I’m just wondering if anyone else who has gone through similar surgery as I had, have had these same things happen to them. He has now said he thinks it may just be side effects from the surgery and hopes it will get better. When I go and see my neurosurgeon, I will likely not get answers either, as he has no interest in diagnosing anything with me, just making sure that the surgery he did worked, and following up with it. I do have a WONDERFUL urologist, who actually made the diagnosis, and he said he is willing to send me in for an MRI given my history, so I may take him up on it, but I am just curious if other people have had these symptoms.

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Fairly common in Drs that don’t have an explanation to blame anxiety type issues or other mental health illness. It’s great the medication helped reduce anxiety but since the symptoms still exist I would do the same as you and seek follow up! I would certainly be happy with the MRI as a starting point and go from there. I would consider reaching out to your neurosurgeon as well. It is so common for us to have to be our own biggest advocate, so don’t b shy! Take Care, John.

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@ptwedt I am so sorry to hear about your symptoms - I hope your neurosurgeon will listen to your symptoms. I do recall some strange things happening to me prior to my neuro diagnosing me with my DAVF. He did order an MRA and MRV which did show my DAVF. When I did have a stiff neck and pressure which was actually about 6-8 months prior to my DAVF I actually had 5 blood clots in my brain and I ended up having a rare stroke called CVST. The only way to see blood clots in the brain is via MRV type of MRI.
please let us know how it goes.
Hugs Angela

Your side effects sound horrendous and frustrating. With regard to your touching your face and it sending shock to your body, have you thought of asking your neurosurgeon about trigeminal neuralgia? Or at least trigeminal nerve related condition? If he doesn’t want to talk about it, ask him for a reference to someone who does have experience with it. My neurosurgeon, who repaired my SAH, turned out to have experience with trigeminal neuralgia as well. Luckily, i did not need him for that treatment too. If it is trigeminal nerve related, it may progress where the pain is prolonged and chronic. I really do hope you get the proper diagnosis and care you need.

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