Dr. Deogunkar at the Cleveland Clinic. I have been to so many different doctors all over and he was the kindest most helpful one. He and his staff continue to care for me and make any changes I need made to my neuro stimulator. I highly recommend him.
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I had a neuro stimulator for a different issue a few years ago. The doctor and the implant itself went terribly wrong. May I ask what brand of stimulator you have and what it is for?
So glad to hear you are doing well. Was this at the main Cleveland Clinic? Did you have to see a neuro there to get to this doctor? Is the stimulator in your face? Is it noticeable in any way? Where is the battery pack. Thank you.
I have a metronics Stimulator. Yes Nomad, it is at the main Cleveland Clinic. I was referred my family doctor. I saw another neurosurgeon first who went in and severed 2 trigeminal nerves one above my ear and one above my eyebrow. That surgery didn't work for me. Then he referred me to the Neurology Rehabilitation center. The stimulator is placed in my chest and the wires run up my neck into my head. I have 3 leads placed in my head and face. You can see the battery pack a little. Hopes this helps. Sorry for the delay in answering.
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HI Kim
I live in Cleveland and as looking for a good neuro; I'll look him up. Are u now pain free?
Hi Kayla,
I am not pain free. BUT I have unusual case. All of my nerves on the left side of my face were damaged from having a craniotomy due to a brain aneurysm. I have a friend on here who goes to the same doctor and she is pain free most of the time. I have some relief. Even though I am not pain free, I still highly recommend my doctor and the neurostimulators. It has made my life better than what it was.
I hope this helps
I have a nuerostimulator made by St Jude. I too have nerve damage caused when a tumor was removed from my salivary gland. Although I am not 100 percent pain free all of the time, I have a lot of pain free moments and am doing so much better than I was. I am still early in my healing, and making adjustments. I just hope that it continues to go well. I went back to work and my pain does increase in the midday, so trying to figure that piece out.
Is Dr. Deogunkar also good at working with TN Type 2 patients? I have only been on many medications and have had this condition for around 6 years. Would like to get off the meds. Thanks Monica
I am so excited by this. I have been going to the University of Virginia lately (referred by Neurologist) because the meds are not controlling things. They tried a stellate ganglion block to try and reduce the pain and they actually aggravated things. They decided not to pursue that avenue any further. I am scheduled to see the neurosurgeon there on the 2nd. I definitely want to talk to him about this. I am so glad this thread popped up!
monica1299 said:
Is Dr. Deogunkar also good at working with TN Type 2 patients? I have only been on many medications and have had this condition for around 6 years. Would like to get off the meds. Thanks Monica
Kim do you have an answer to this?
kayla said:
HI Kim
I live in Cleveland and as looking for a good neuro; I'll look him up. Are u now pain free?
I am also being treated at the Main campus of The Cleveland Clinic, I am being seen by Dr. Machado who is very knowledgable about TN. I have a MVD surgery scheduled in September with him and another neurosurgeon would is actually the one that is going to place the telfon pads between the blood vessel and the nerve, I have not been told his name yet, as the date as not been finalized. But I will let you know.
John
Hi John -
I had my 2nd MVD at the Cleveland Clinic by Dr. Joung Lee in 2006. Unfortunately, I only had relief for about 9 months....but the surgery itself went very well. Best of luck to you.
John said:
kayla said:HI Kim
I live in Cleveland and as looking for a good neuro; I'll look him up. Are u now pain free?
I am also being treated at the Main campus of The Cleveland Clinic, I am being seen by Dr. Machado who is very knowledgable about TN. I have a MVD surgery scheduled in September with him and another neurosurgeon would is actually the one that is going to place the telfon pads between the blood vessel and the nerve, I have not been told his name yet, as the date as not been finalized. But I will let you know.
John
Would like to talk to you about neuro stimulator. Is that possible. If you would be willing to talk to me, I can call you at your convenience. Please e-mail me at â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– I have so many questions. Like , did you have TN or ATN? What else had you tried? Are you still taking meds? On and on. I am having HORRIFIC pain which seems to be getting worse. Is the stimulator still working? Where is it implanted? Is the pain level adjustable or is it permanently set in one place? how often do you have to see doc? Are there any side effects? Well, you get the idea. I want to know everything. Thank you so much!
Kath
I guess you are referring to Dr. Milind Deogaonkar? I have been asking around for ages for a good doctor in this area as I have done 2 Mvds and I am looking for pain management.
Thank you,
Vasilios
What type of neuro stimulator do you have? Is it a P-Stim? Of so where can I locate a Dr. in Florida who implants them?
I want to reply to anyone interested in neurostimulator for TN. I have had ATN and TN for 18 years. I had a neurostimulator implanted 9 years ago. I have had 3 surgeries involving my neurostimulator. The first was the original implant. I have two wires in my face, and the wires run down the side of my neck into my upper chest, and connect to the generator. My first neurosurgeon was horrible. His bedside manner was awful, but he was the only surgeon in my area who did the implants for TN. When I realized my neurostimulator wasn’t doing the proper result ( one of the wires had been implanted improperly), I did research, and found the neurosurgeon who was at the forefront of neuro-steriotatic stimulation. He is based at the University of Chicago Medical Center. Dr. Konstantin Slavin. I contacted him by email. He answered me within a week, and two weeks later I had an appointment in Chicago. Six weeks later he performed the most amazing surgery on me, he moved my facial wire into proper place with a minimally invavsive surgery. I have one tiny little scar to show for it on my forehead that has faded. Two years ago, I was the first person at the medical center to get my neurostimulator changed out with the new BURST technology neurostimulator. The neurosurgeon who invented it is from Sweden, and it has changed my life, and the lives of countless others with chronic pain. Yes, I still have many days with significant pain. I still take meds. But without this new neurostimulator my life would be much worse. My neurosurgeon is compassionate, humble, explains things well, he takes extra time with his patients, and his programmers are fantastic. I fly up to Chicago if I need new programs.
Hope this helps some folks out there who might be thinking about PNS/neurostimulator therapy as an option to help with their pain. Prayers to all of you out there for low or no pain days.
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In February of 2019 I finally couldn’t stand the pain anymore, meds aren’t working ,my Neurologist won’t change my cocktail of medicine unless it is to lower them ,I asked for my old dosage of gabapentin back ,no ,you’ll get through this ,so many triggers ,I’m sure most of you know ,barometric pressure changes, stress,dental work, talking ,5 teeth lost ,I have a feeling it’s going to be more ,I finally worked up the nerve to make a dental appointment, scheduled for today ,I went from 3 to 8 painscale with most of my xrays done and my luck ,the power went off …Have to reschedule…Mine started with dental work ,lost 5 good teeth ,no decay ,4 years of root canaling the same teeth ,btw the 1st tooth I just had pulsating feeling sometimes ,I had a root canal done ,even though the xray was fine ,4 months later I called the office ,she said sometimes they take up to a year for the pain to go away .Humm ,I’ve had numerous root canals and none took more than a few days to a week for the pain to go away .Later I went to a Oral Surgeon he didn’t think of TN1 or TN2, Just talked me into a implant ,so I said ok .2 bone grafts implant ,cosmetic surgery for implant ,it didn’t take ,back to cosmetic surgeon, he said basically, it’s over a year ,not my problem…I went back to Oral Surgeon ,told him I already spent 10.000 dollars on 1 tooth ,I can’t afford to pay anymore, you’ll have to take what insurance pays you .It was infected ,pus yuck …Insurance didn’t pay a dime ,he then tried to sue me .I wrote his lawyer a nice letter, never heard from him again .It took 4 years for a diagnosis, I saw a periodontist, his hygenist said when the Periodontist left the room ,it sounds like a neuralgia, went home googled ,bingo she had it spot on ,sinus was bothering me so ENT ,saw him ,he said see a Neurologist…Why didn’t all those Oral Surgeons, dentists, years ,agony ??? File left in tooth ,why ?? My 1st Neurologist was off the charts fabulous, she gave me the dx and started different meds ,and added where I needed ,but I’ve never been in remission, or had a totally painfree day .It’s only gotten worse over the years ,What bothers me so much is ,Ppl say ," you look fine " If I was in a Wheelchair ,they would see it ,but bc they can’t see inside your face and head ,you must be fine …,I’m so sorry for the long rant ,probably mixed up bc I can’t think anymore from brain fog …Just want you to know ,you are all warriors in my book ,Praying for moments of pain relief for all 
I am suffering from trigeminal neuropathy… left side much worse… I cannot tolerate the side effects of the medications any longer and am looking for answers in regards to nuerostimulation … I live in Washington DC… anyone know someone hood I the area… my pain has been unmanageable for the last 2 yrs
Could you please let me know who your Dr is… I cannot tolerate medications and my life has become mostly unlivable… I have a damaged nerve caused by an infection