Has anyone had issues with their surgeon brushing them off after an MVD proves to be unsuccessful? I had an MVD and a glycerin rhizotomy and was pain free for 6 wonderful months. When the pain returned, I scheduled an appointment with my neurosurgeon & he ordered a new MRI. At the appointment he reviewed the MRI, stated that there was inflammation around the Teflon and that this was the likely cause of the pain recurrence. He also stated that sometimes inflammation around the Teflon can lead to scar tissue which would then need to be removed. The plan was to try to knock out the inflammation and if that didn’t work, do some investigating to see if there was another explanation. First, he had me take ibuprofen for 2 weeks. When the pain persisted, he prescribed a 2 week course of dexamethasone. He told me to contact his office when I was finished with the dexamethasone to let them know how I was doing, either way. I contacted his PA to let them know that the pain persisted, we emailed back and forth a couple of times and then a week later I get an email stating that they don’t think any more procedures will be helpful and wondering if I would like a referral to a pain management specialist. I wasn’t asking for any additional procedures. I just wanted to know what to do next. I was expecting him to order another MRI to see if there was still inflammation around the Teflon or any scarring but I feel like I received a brush off email instead. I’m honestly blindsided. I don’t know where to go from here. Has anyone else experienced anything like this? How did you handle it?
Sorry to hear about the problems you have been getting. I also have two failed MVDs and failed Gamma Knife. I am in the UK so our system of seeing Neurologists/Neurosurgeons are different from US. I also feel that my Neurosurgeon is uninterested in me now. I would suggest trying to see a different Neurosurgeon to see if they would suggest what else could be done. sorry I’m not a lot of help but stick with it. Good luck.
My personal opinion…get a second opinion. Any Doctor trying to deal with neuralgia type pain with Ibuprofen is either incompetent or doesn’t care anything about his/her patient’s pain! Don’t know where you live but get a neurosurgeon very familiar with TN and other facial pains, like Dr. Casey.
I think you’re both right, a second opinion is going to be my next step. The frustrating part is that he came highly recommended and is known for being a TN expert. It’s definitely robbed me of some of my hope to have him respond the way he did. Since I wrote my earlier post, he has been slightly more helpful but only after I basically demanded that he investigate further. I’ve never had to advocate for myself this much.
In his defense, he was using the ibuprofen to try to decrease the inflammation around the Teflon, not for the pain. Using gabapentin for that.
Thank you both for your responses & I hope you’re having a pain free day!
My gut reaction is fire him. I have TN but my husband has been through lots of medical procedures: liver transplant, heart surgery etc. He tells me if they don’t treat you like you need to be treated (medically) then just fire them… They work for you. It gave me a whole new outlook.
I have found specialist are hard to deal with. Specially if you don’t fit into their form. Sometimes I feel they get a little over confident in their abilities so when something doesn’t go the way they planned they brush it off as your fault and you’re just a difficult patient. Don’t lose hope. Go for second or third opinions. TN is different for everyone and so are the treatments.