Age for MVD

I’m 65 and ha e GPN for several years with no luck with any of the usual “head” meds–awful side effects! Are there any MVD stories out there from patients over 60? Am I too old?:frowning:

I can only give you my experience. My GPN started in 1997 and I was not diagnosed until 2008. That is when I had an MVD. The only medication that help were hydrocortisone (IV) and indomethacin (Indocin). Doctor's will only let you have hydrocortisone orally or via IV for a short period of time. But it gave me a pain holiday. The indomethacin is among the strongest NSAIDs. It will tear apart your digestive system so you will need to take an acid reflux drug or other stomach medication while on it. For me, indomethacin reduced my pain to a very low level for about 3 months. Then the GPN pain slowly came back. Eventually the indomethacin was ineffective. As you probably know, everyone reacts differently to medications, so I can say these medications will definitely help. But they worked for me.

Even though I got an MVD, it was only partially successful. My glossopharyngeal nerve was pinched too long and too severely that I have permanent nerve damage. So the MVD did not take all the pain away. I still have very severe pain on the right-side of my head all the time. I also have atypical trigeminal neuralgia and regional complex pain syndrome. Other than opioids the only thing that is very helpful is ketamine nasal spray. It takes away part of the neuropathic pain not helped by the opioids. You can also get it as a troche (lozenge). You will need to go to a compound pharmacist to have it made. This medication is real tricky. If you take too much of it, you will go into hallucinations and your ability to reason will impacted. However, it has a very short half-life. So if you take too much the side-effects will go away in 30 to 90 minutes. So I would advice taking only a little at a time.

Unfortunately, that is the only advice I have for you. My neurosurgeon was Amin Kassam, MD, who worked at the University of Pittsburgh Medical Center (UPMC). He now works in Milwaukee at Aurora Health Care. He was by far the best doctor I ever had. He knew things about GPN that other doctor did not. If you have the money, I would highly advise taking a trip to see him. When I did my research before my MVD, he was among the most experienced GPN doctors in the world. He may have done the most MVDs of the 9th cranial nerve.

Best of Luck,

Gipp