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Living With Facial Pain

Is there anybody from Iowa on here?


#1

I was just wondering if there is anybody from Iowa on here? I would really like to know so that I can see what doctor here in Iowa they are seeing, I am going to the Mercy Ruan Neurology Clinic in Des Moines, and what they are doing for the pain? They have upped my meds 3 times since Dec. and also put me on Vicodin, cause I keep getting very bad pains that have me screaming and going to the ER. I also want to know if there are any surgeons here in Iowa that do the MVD surgery.

Thanks

Like I said before I am so Happy that I have found this site.

sjjmcgee1961

Sandy McGee


#2

I just put Iowa in search box… Came up with good neurologist in Ames …



But for MVD you will want THEE best. Dr.casey is only a 9 hour drive from you.
. Does consultation this way…


You can get your records from your neuro, and get them to Casey’s office, exchange a couple emails with dr Casey, book it and wait a few weeks,



Meet him for pre op day before


2 nights in the hospital, then go home.


That's the standard, your mileage my vary in -any aspect of this. : )


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#3

Last year I was also screaming in pain and was warded for 10 days and given 6-hourly jabs of a strong opioid pain-killer. Finally a pain specialist from Texas tried a deep jab of a cortico-steroid direct to my trigeminal cavern from the left of my face and it worked within 2 days. The pain stopped but I needed a booster jab 4 months later and till now
after 5 months I’m pain free. The steroid must have stopped the massive inflammation at my TC site. Maybe you can request the same from your sneuro?
Mike Chan
Singapore


#4

Hi sandy,
I am in iowa. I currently go to the university of Iowa hospitals and clinics in Iowa city. I know they do the surgery there however I have not had it done as medication is still effective for me. My neurologist is very thorough and I like him very much. I was previously going to a different neurologist in another city who wasn’t listening to my needs and I asked for a second opinion which is how I was referred to my current neurologist.


#5

I am from Iowa. My son has atypical trigeminal neuropathy. We've been consulting with Dr. Casey in Michigan regarding my son's case. We do have a good local neurologist here in town but because no medications have been helpful at all in reducing his pain, now working with Dr. Casey in MI. It's about an 8 1/2 hr drive to see Dr. Casey. A lot of corresponding has been done through e-mail with him. We had no luck with Iowa City or Mayo Clinic in Rochester.


#6

Suffered for 15 years on and off every year but it was seasonal. Sometimes winter, summer etc. but never missed a year and never lasted for more than 5 months. Kicking and screaming also. Docs at ER wont/dont know what to do. They just look at you like: "now tell me where your pain is??" Looked at all sorts of options including MVD. Finally decided to go for it w/ a Doc in Northern CA. John Muir System. I know you are looking for an Iowa solution, but encourage you, if you can afford etc., to go MVD. 2 years without one poke now!!! Best success rate out there. Hang in!!!!


#7

Thanks for the replies I am going to talk to my neurologist tomorrow and find out what to do. He was saying at one time the gamma knife but from what I hear don’t do that. I keep looking into the MVD. I will let you know what I find out.


#8

Mike, what exactly is the name of this injection you got? I know about cortico-steroid injections being done for almost every joint you have including the spine. Who is the doctor that did it? I have a pain specialist here in Florida, he has done rhizotomy for my neck pain but doesn't know where to go for my ATN. I do get botox in my scalp that helps my atypical GN and I get ON sometimes from 3 fusions in my neck. Thanks, Sharon

Mike Chan said:

Last year I was also screaming in pain and was warded for 10 days and given 6-hourly jabs of a strong opioid pain-killer. Finally a pain specialist from Texas tried a deep jab of a cortico-steroid direct to my trigeminal cavern from the left of my face and it worked within 2 days. The pain stopped but I needed a booster jab 4 months later and till now
after 5 months I'm pain free. The steroid must have stopped the massive inflammation at my TC site. Maybe you can request the same from your sneuro?
Mike Chan
Singapore

#9

The steroid is called triamcinolone injected together with an anesthetic using a long needle to reach the trigeminal cavern just below my brain. It’s a delicate op but takes only abt 5 mins when done by a skilled dr. There are potential side effects but so far I’ve been lucky with none. It was a day surgery done at the SGH by Dr Gregory Meredith, no 2 of the pain management centre at SGH. He was from Texas but has been working here for the past 10 years.
I have been suffering from TN for the past 20+years and on daily tegretol + neurontin medication. I went for cyber knife op in 2006 and it lasted till 2012.
But the TN pain returned with a vengeance in Apr 2013 when I was in extreme pain (left side of face) and was warded in SGH for 10 days. Could not eat or drink anything. My neuro then got dr Greg to see me and he became my angel of mercy with his deep jab of the said cortico-steroid.
Told me said steroid is so potent, I’m entitled to only 3 jabs per year. So far I’ve had only 2 in a time-frame of 9 months. I’m now 71 yrs old and mobile.
There’s very little literature online about deep injection of steroids to heal TN.
Maybe it’s something new. There’s more abt deep injections of alcohol and glycerol to deaden the nerves. Steroids work by reducing inflammation significantly. Touch wood mine will remain quiet and not become inflamed in the months and years to come.


#10

Have to add that Dr Greg was guided by a live X-Ray machine whilst he was pushing the long needle onto my left cheek to the site where the trigeminal cavern is situated centre of my face just beneath my brain before he released the steroid+anaesthetic to tackle the inflammation of my trigeminal site.


#11

It is nice to find people from Iowa with the same thing that I have. I have been to the University of Iowa Hospitals but it was the ophthalmologist section. Don't really know why they sent me to that but whatever. If I have to have surgery done I might look to them to do it. I don't know if the hospitals in Des Moines have done those type of surgeries.

new TN patient said:

Hi sandy,
I am in iowa. I currently go to the university of Iowa hospitals and clinics in Iowa city. I know they do the surgery there however I have not had it done as medication is still effective for me. My neurologist is very thorough and I like him very much. I was previously going to a different neurologist in another city who wasn't listening to my needs and I asked for a second opinion which is how I was referred to my current neurologist.

#12

I am going in to get a lumbar puncture done to see about inflammation, infections or anything else before they do any type of surgery. I might have to ask my neurologist abut the steroid triamcinolone injection you were talking about. Thanks for the info.

Mike Chan said:

The steroid is called triamcinolone injected together with an anesthetic using a long needle to reach the trigeminal cavern just below my brain. It's a delicate op but takes only abt 5 mins when done by a skilled dr. There are potential side effects but so far I've been lucky with none. It was a day surgery done at the SGH by Dr Gregory Meredith, no 2 of the pain management centre at SGH. He was from Texas but has been working here for the past 10 years.
I have been suffering from TN for the past 20+years and on daily tegretol + neurontin medication. I went for cyber knife op in 2006 and it lasted till 2012.
But the TN pain returned with a vengeance in Apr 2013 when I was in extreme pain (left side of face) and was warded in SGH for 10 days. Could not eat or drink anything. My neuro then got dr Greg to see me and he became my angel of mercy with his deep jab of the said cortico-steroid.
Told me said steroid is so potent, I'm entitled to only 3 jabs per year. So far I've had only 2 in a time-frame of 9 months. I'm now 71 yrs old and mobile.
There's very little literature online about deep injection of steroids to heal TN.
Maybe it's something new. There's more abt deep injections of alcohol and glycerol to deaden the nerves. Steroids work by reducing inflammation significantly. Touch wood mine will remain quiet and not become inflamed in the months and years to come.

#13

Hi Sandi! I was born in Iowa...does that count? Just kidding. I have been seeing Dr. Lucia Zamarono in Troy Michigan for a year now. I have had unsuccessful Gamma Knife by her and am presently receiving P-Stim treatments until April when I will be considered for another try at Gamma Knife with a higher dose of radiation. Check my profile for an in-depth story of my Geniculate Neuralgia road to recovery. I currently control my pain with medications but would love to have a more permanent cure. Good luck with your search! I'd love to help if I can. Be sweet to yourself!

Always~Laurel aka shinglesdidit


#14

Hello! I live in NW Iowa, closer to Sioux Falls, SD, about 30 miles from there. I've seen a couple neurologists from Sioux Falls, a couple Neurosurgeons from Sioux Falls, who gave me their opinions, and ended up at Mayo Clinic in October with NO luck from them. They basically told me I had ATN and wouldn't be a candidate for any procedures. I'm currently taking Oxcarbazepine 900 mg in the AM & PM, and I haven't had pain since early December. I'm saying I'm "in remission" knock on wood. Please feel free to send me a friend request! Best of Luck to you.


#15

I go to The University of Iowa Hospital & Clinics. The neurologist that I see is Dr. Shivapour, and he I s fantastic.


#16

Mike, I just saw this post about a steroid injection. This is very interesting to me. Anything that is not damaging the nerve is worth the try. I see a pain doc that does all kinds of injections. I also see a neurosurgeon who is doing another back surgery for me, lumbar, that will be my 9th surgery and he treats TN with MVD. I am going to show your response to him. Very nicely written and all the details are there. Thank you, Sharon

sjjmcgee1961 said:

I am going in to get a lumbar puncture done to see about inflammation, infections or anything else before they do any type of surgery. I might have to ask my neurologist abut the steroid triamcinolone injection you were talking about. Thanks for the info.

Mike Chan said:

The steroid is called triamcinolone injected together with an anesthetic using a long needle to reach the trigeminal cavern just below my brain. It's a delicate op but takes only abt 5 mins when done by a skilled dr. There are potential side effects but so far I've been lucky with none. It was a day surgery done at the SGH by Dr Gregory Meredith, no 2 of the pain management centre at SGH. He was from Texas but has been working here for the past 10 years.
I have been suffering from TN for the past 20+years and on daily tegretol + neurontin medication. I went for cyber knife op in 2006 and it lasted till 2012.
But the TN pain returned with a vengeance in Apr 2013 when I was in extreme pain (left side of face) and was warded in SGH for 10 days. Could not eat or drink anything. My neuro then got dr Greg to see me and he became my angel of mercy with his deep jab of the said cortico-steroid.
Told me said steroid is so potent, I'm entitled to only 3 jabs per year. So far I've had only 2 in a time-frame of 9 months. I'm now 71 yrs old and mobile.
There's very little literature online about deep injection of steroids to heal TN.
Maybe it's something new. There's more abt deep injections of alcohol and glycerol to deaden the nerves. Steroids work by reducing inflammation significantly. Touch wood mine will remain quiet and not become inflamed in the months and years to come.

#17

Mike, this injection is very interesting. Thank you for posting all the details. I have a neurosurgeon and pain doc. I am going to show this to them. Sharon


#18

Hey SAndi...I initially had the steroid nerve block done@ a year ago. My DX was TN at that time. I had the nerve block you all have been discussing...with the imaging machine etc. He went in through my cheek just under my eye...it was weird but not really painful...I could hear the steroid getting injected. Anyway, I went through all this for nothing as the correct diagnosis was reached about a month after getting the block...of Geniculate Neuralgia...a whole different nerve with difficult access.

They were so sure this was going to help me a lot. Very disappointed that it didn't work but then, when the correct diagnosis of GN was reached, they understood and informed me that they didn't have anything helpful for me. I think that's the first time I had a med professional tell me" I was screwed because of GN," I've had several others repeat this since. My GN is a very rare bird. I don't give up hope though.

I'll be checking in on you. Be sweet to yourself!

Always~Laurel


#19

Thanks…this is how a global world helps mankind. Thanks to the internet and the social media, we can communicate with one another within the confines of planet earth and within minutes to share our personal info …esp amongst fellow sufferers. Hopefully my experience of a deep injection of a cortico-steroid to stop an unbearable TN pain attack will also work for other TN sufferers. There’s no guarantee and there are also potential side effects to consider. TN is a complex illness. Cheers!


#20

Hi shinglesdidit, I see you tried this steroid injection. I have been responding to you. I am atypical GN and ATN. I am interested in this injection. Since I am also tmj and the TN nerve is 1 mm away from the tmj joint I am wondering if this is worth a try. I have arthritis at 58 at every level of 13 plus surgeries for my spine, all levels. I am wondering if I am arthritic at the tmj joint too. Your experience tells me no. I am still very interested in PNS. Sharon