I am writing his story and possibly to get some insight as to what to do next. My husband is the one who has TN. The pain started about 3 years ago. At first he was resistant to go to the doctor. But eventually he did. A few doctors later he went to a dentist / pain management. He was treated for awhile with meds, like Lyrica, I think Teregtol. This doctor did not believe in any new medications just long time on the market tried and true.
None of that worked. So my husband at the time, only 59, figured he is young and heard so many success stories of MVD decides to get this done first, skip all the other steps. He has the surgery at NYU, by Dr. Ramesh Babu. After 5 days in the hospital, he is rushed back to hospital with aspectic meningitis. Totaling about 11 days in the hospital. The surgery was unsuccessful.
He has had no relief in pain, his pain actually is worse, with bouts of headaches, flu like symptoms. More excruciating pains in his gums, left side of face pain, nose constantly running, sneezing attacks and he is just miserable.
He is now on Gralise 1200 mg. (time released Neurontin) and Nortriptyline 50 mg. once a day. He has some relief of nose running but no real relief from his pain. We live in NYC and the cold weather is just excruciating pain for him. Most times he is miserable and now from the meds, nasty and angry most of the times.
He has been to several doctors for different opinions since. He has a recent MRI which still showed brain inflammation (what is that all about?) He had the surgery and meningitis March 2014. The gamma knife doctor said wait one year and we will see. A different Neurosurgeon said, no sorry no more surgery especially since you had meningitis. The doc for the glycerol injection, said no injection as you had meningitis and the chances of that happening again is too high.
So I am asking what else can he try? Is there a good Neurologist in NYC, and/ or a pain management doctor that specializes in TN in NYC? His pain management doctor is real nice but now specialize in TN. Should he try the Gamma Knife again in 1 year? Does the Lidocaine patch work?
I would like to hear from others who have had failed MVD and what they are doing.
Right now we don't know if my MVD was a success or not. I had it on 11/29. I live in Minnesota and say a doctor named Andrew Grande at the University of MInnesota. He is in the top five neurosurgeons who treat this horrible problem. I know you are in New York but I think you should give him a call. Here is why. Before the surgery he told me this, "This surgery may not work. I hope it will but sometimes it does not. If it fails I want you to know that you are not alone. This is plan A but we also have, B, C, D, and E. I will work with you until we find a way to stop the pain so try not to be discouraged."
Even if it is impossible for you to come here, I think his office could offer you some solid guidance. My name is Kendall Mines-Melchior and my procedure was 11/29/13. Please use my name if you think it will help you. His nurses name is Lori.
Dr. Jeffrey Brown is in Long Island. He too is a TN expert, and also told me if MVD did not work there were other things to try. My right side MVD did not relieve my pain, so eight months later Dr. Brown suggested a PNS implant. I had that procedure, and now my pain is completely controlled.
Best of luck to you and your husband.
Christine
Peripheral nerve stimulator. It is an implanted device that delivers electric current to the nerve. The electric stimulation stops the pain signals to the nerve. It is just under the skin, not very invasive.
I have not had any TN pain since surgery. However, I do have the feeling of being punched in the face and I still have a large numb spot on my head that is making me crazy. These symptoms are very slowly getting better. My case was a bit odd. When they went in they discovered that my actual brain stem was pushed up in a place it should not have been. That lengthened the surgery considerably and dr. grande wasn't sure how successful it would be. I think have recored from the surgery very well. No big complications, no infections, good pain management, no repeat hospitalizations or emergency visits required. So I do feel very blessed about that.
Fran said:
Thank you. I will give him a call Thank you for your reply. You didn't say how you feel? I know it it is early but how do you feel.
Darlene Peterson, his runny nose is related to the TN. He has been to ENT, for sinuses and been allergy tested. The running of the nose was much worse after the surgery. It was pouring out of his nose. This has subsided somewhat, since taking the meds.
Also, it was recommended he wait for the Gamma Knife since he still has brain inflammation on the recent MRI. Its funny he gets flu like symptoms, chills and a nasty headache, which we think is related to the ongoing brain inflammation.
Should he go for the Gamma Knife or the PNS? Which is less invasive?
Oh, I did not tell you, the Dr. Babu said after surgery, he could not move a vein off of the nerve, in his words (which weren't many) "It was an important vein, and I couldn't move it". I was thinking well than if you put the teflon between that vein and the nerve, did you compress the nerve even more?
Fran
Has anybody talked about the possibility of your husband now experiencing SUNCT or some other headache disorder as well as TN. I ask because of the running nose. If you put SUNCT in the search box you will get some good information. Just a thought.
Keep Heart
Bellalarke
Gamma,Cyber or any other Radio surgery will cause some swelling.That's why they won't do it for your husband.So sorry for him(and you).I would definately go on the PNS.No downside to trying it that i have heard.I would be trying to push for meds that work in the meantime.Good Luck!And keep us updated.
I had the gamma knife in May 2013, and regrettably I am in so much pain I don't know if I can survive this. I am so discouraged and depressed about the whole thing I just want to go to sleep and not wake up. From all the symptoms of TN including the tooth and facial pain I now have destroyed tear ducts that cause spasms in my eye. I have to use sterile drops every 3-4 hours. My mouth feels like a root canal EVERY day! My ears have this popping like that of exiting an aircraft. My vision has been affected and the doctor just kind of has a patronizing little smirk and says, "well I told you there might be some numbness of the face". I am so angry and disgusted. If I didn't believe in God, I could easily rid the world of a lot of stupid and arrogant doctors. All I can do is pray that all of you will persevere and heal over this curse. I've been thinking of having the MVD..just don't know what to do.
That's terrible.I'm so sorry the Gamma didn't help you.I had it done mid July and it took 9 weeks,but my pain is gone.I do have some tingling around the eye,but i'm so glad i did it even if it returns tomorrow.I think the Dr.and technicians make a huge difference as with any procedure.Deseloms in Dallas did mine.I'll try the PNS next if it returns.
ktznana said:
I had the gamma knife in May 2013, and regrettably I am in so much pain I don't know if I can survive this. I am so discouraged and depressed about the whole thing I just want to go to sleep and not wake up. From all the symptoms of TN including the tooth and facial pain I now have destroyed tear ducts that cause spasms in my eye. I have to use sterile drops every 3-4 hours. My mouth feels like a root canal EVERY day! My ears have this popping like that of exiting an aircraft. My vision has been affected and the doctor just kind of has a patronizing little smirk and says, "well I told you there might be some numbness of the face". I am so angry and disgusted. If I didn't believe in God, I could easily rid the world of a lot of stupid and arrogant doctors. All I can do is pray that all of you will persevere and heal over this curse. I've been thinking of having the MVD..just don't know what to do.
Hi Christine, My husband went to Dr. Brown who does not accept my husband's insurance. So we paid out of pocket. He sent my husband for a consult for Gamma Knife which he told my husband he had to be there to supervise, and would charge us whatever we could afford to pay him, which I found weird. When my husband did go for the Gamma Knife, the Doctor there said, Dr. Brown did not have to be there. Anyway, we went for a 2nd opinion on the Gamma Knife, and with a new MRI which showed Brain inflammation and the 2nd doctor said it would be wise to wait at least a year before doing Gamma.
Christine said:
Dr. Jeffrey Brown is in Long Island. He too is a TN expert, and also told me if MVD did not work there were other things to try. My right side MVD did not relieve my pain, so eight months later Dr. Brown suggested a PNS implant. I had that procedure, and now my pain is completely controlled. Best of luck to you and your husband. Christine
Are the doctors doing anything to treat the brain inflammation? My logic (which can be lacking!) says that is serious and needs to be treated rather than simply waiting.