How did the botox go?

TOS Surgery #1 - 4/19/12: http://neurotalk.psychcentral.com/sh...038#post872038

TOS Surgery #2 - 5/24/12: http://neurotalk.psychcentral.com/sh...325#post883325

Botox kicked in Saturday and reduced the wraparound head pain, but my overall pain level has been increasing. Pain seems to be centered at the base of the skull/top of the spine. I believe the botox is allowing me to pinpoint the source of the pain. I'm heading back to the neurologist today and will likely have steroid injection of the sub-occipital/cervical facets. I felt this pain before (not this severe) and these injections took the pain away in the past. I have just found that I can reduce the pain by lifting up on my skull. I also feel good when I wake up in the morning and the pain starts only a few minutes after I stand up.

I will likely be getting an upright MRI (positional/stand-up) this week.

www.fonar.com
http://www.vitalimaging.com/services...e=stand_up_mri

I'm trying to keep a positive attitude and keep pressing forward. Thanks for this post: What's the point?

Marc: Sorry you are still suffering. It will be interesting to see if they find anything in the upright MRI. I've been tempted to explore this route to see if gravity does make a difference, yet the MRI is still limited in what it can and can't show.

Your observation about the occiput intrigues me as apparently mine is jammed down extremely tight. I have a friend with TOS whose occiput feels the same as mine, yet our cervical MRI's are normal.

Manually, when someone pulls on my occiput to create space, it feels heavenly. Then, I stand up and/or the 48 hour flare rule rolls in and the nerves light up. I think it's part of the puzzle, and I hope you figure it out for you and the rest of us. Good luck.

The neurologist consulted the radiologist who read my C-Spine MRI in January. They concluded that the upright MRI is only good for showing disc issues, not high enough resolution for the suboccipital region. They don't believe this to be a disc issue (there is no disc between the skull and C1). They are going to reorder the C-Spine 3T MRI with a special suboccipital focus (3D reconstruction). Neuro wants me to wear soft C-collar as a precaution in the meantime.

I'm hoping and praying for an answer and non-surgical resolution. I don't want any more surgery, not even the nerve stimulator implant.

good luck on this, I'm so sorry the headaches are getting worse and the botox didnt help. Have you tried acupunture for the headache pain? Or gone back to PT? Where do they do the 3T mri? Have you been able to work?

I just looked at the vital imaging website. I wonder if it would be useful for me in diagnosing the difference betewwn TOS or Disc pain? I see they are all over S. Cal.

Acupuncture has been no help. PT or massage only offered temporary relief. 3T MRI is widely available (just ask to be sure...older machines and open MRI are 1.5T or 0.75T).

I don't think the Fonal MRI will be of any use in diagnosing TOS, only disc issues. When you have both issues (double/multiple crush), it's likely difficult to figure out which is causing what pain. I think most neuros would start an investigation with cervical epidural and facet block injections.

I am so sorry to hear about all this pain Marc. I hope you find a resolution soon. Good luck and wishes from my heart.

you probably dont have this (i'd think you'd be like fainting and stuff)
wearing a cheapo neck brace has helped me immensely fwiw


http://en.wikipedia.org/wiki/Chiari_malformation

I have been experiencing these same types of headaches that you describe. I have tried the botox but like you, I had break thru pain. Have you managed to find any type of relief? I have not had TOS surgery - but I actually think my headaches are worse than the typical pain from TOS. I cannot get any Doctor to say that the two are related. Thanks, and I hope you have found relief.

My MRI didn't show anything wrong.

I have been suffering from these headaches for over a month now. I had some occipital/trigeminal neuralgia symptoms prior to rib resection surgery, but nothing like this. Those headaches went away with surgery. These new headaches are accompanied by suboccipital pain and don't appear to be TOS related. Medrol and Toradol have only mildly helped. Norco is no longer effective. Neurontin has been the only thing to really helped. I have increased from 400mg x3/day to 800mg x4/day. I now take Percocet occasionally instead of Norco.

Dr. Ando has done joint mobilization of C0-C1-C2-C3. However, PT hasn't produced significant relief. I had a diagnostic block of C2-C3 medial branches as well as the 3rd occipital nerves. This helped a little but didn't help the pain at the base of the skull or temples/tmj. I have to go through another diagnostic block before they will consider other theories (to rule out false negatives/positives). If the diagnostic block works they want to do thermal RF ablation. I feel like the A-O and A-A joints are the source but the doctors do not yet agree and feel that these injections are risky since they are so close to the brain.

http://www.asipp.org/documents/PDF/0...ai%231AC7A.PDF

If you are experiencing similar headaches, I recommend seeing a pain management specialist to investigate.