We are patients living with Trigeminal Neuralgia, here for your support.

MIDWEST MEMBERS

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A place for Midwestern USA members to meet, make friends and recommend doctors, neurologists and neurosurgeons.

Location: regional-group
Members: 42
Latest Activity: Apr 23

2 members like this

Discussion Forum

Any positive stories? Dr or hospital reccomendations?

Started by Jerry Parker. Last reply by Jerry Parker Apr 23. 7 Replies 0 Likes

I'd give 2 thumbs up to Lutheran General In Park Ridge.

Anyone from Cheesehead Central?

Started by mollycule. Last reply by Kathy Apr 20. 9 Replies 0 Likes

Anyone from Wisonsin? I am in Green Bay and would be nuts without this website. I am considering MVD because I do not want to live like this anymore. I have Type I and was diagnosed in July of 2011.…Continue

Anyone here from Cincinnati area?

Started by Mary L Oct 19, 2012. 0 Replies 0 Likes

Does anyone on here live in the Cincinnati area? I have had TN/ATN for 5 years now and have never met anyone who has it in person. There is no TN support group here either. :(MaryContinue

Artsy One in despirate need of surgical advice.

Started by Artsy One. Last reply by Artsy One Aug 27, 2012. 2 Replies 0 Likes

I have had TN and occipital Neuralgia for 7 years now. It is secondary of MS. I have been holding on with medications until recently. My pain is no longer being controlled with medication.I need help…Continue

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Comment by Chris K. on May 18, 2012 at 9:26pm: Just in case anyone was planning on attending the Twin Cities support group meeting tomorrow, the TNA website says that the meeting has been cancelled. Sorry about that ! Hopefully, everyone will see this before heading over there.

Comment by tp416 on April 27, 2012 at 9:28pm: Just found this group. We live a half hour east of Cleveland, Ohio. Anyone close to that area?

Comment by Gloria E. on March 28, 2012 at 6:16pm: Congratulations jd42608!!! Wonderful news!!! Keep us informed on your recovery. Dr. Anderson is amazing.

Comment by jd42608 on March 26, 2012 at 4:06pm: MsChief

I am also seen by Dr. Doug Andersonn and suffer fron both Left and right side TN. Just recently as of March 16th i Went and had a second MVD on the right side and he also did a procedure thats never been done someone with tn only with ms. He dissceted the pain receptors of the decending part of tn nerve to where i would not have any side effects such as the defferation pain and the anesthia dolorsia. He did not cut the whole trigeminal nerve just the pain receptors. It was something that had to be done after getting several opinions and he was the only one who was willing to go above and beyond the "NORM"

It was all a success and a kudos to dr anderson. I am finally Pain free finally on the right side anyhow. Still in the process of healing from the sugery itself . I still have the normal sensations of cool breezes that dont send me into so called hell no more and i love it..

Like gloria said he is not all warm and fuzzy, he is to the point and knows what he is doing. So if you want to hear the facts and are not scared to hear the truth go see Dr. Anderson.

Comment by Gloria E. on March 25, 2012 at 3:15pm: MsChief,
I was also seen by Douglas Anderson at Loyola. Just so you know he's a neurosurgeon, so he will only deal with surgical issues. He does not do surgery on Type II Atpicals. He found it can cause more problems and even make the pain worse. He's brilliant, but isn't warm and fuzzy, so be prepared for a business-only attitude. All things considered, I'm very glad he decided I was not a surgical candidate. I know some here have shopped around until they found someone willing to do surgery and lived to regret it. Pain makes us desperate for a cure, but for some of us there isn't one. The trick is to find a good neurologist how understands TN I & II.

I'm currently seeing a neurologist, Jennifer Ahmadian, that I highly recommend. She practices in several places, in the Chicago area, so yo can google her if you're interested.

Comment by MsChief on March 25, 2012 at 12:24pm: Thank you so much Vicky. I am very familiar with the area. I will research and see if they have any financial assistance programs to help me get some treatment there.

Comment by Vicky Lundgren on March 25, 2012 at 9:36am: to MsChief, I recently saw Dr Douglas Anderson at Loyola in Maywood and he was very good compared some of the Docs I had seen in Rockford for TN. If you can go there it would be much closer to and other than the wait in the office I was satisfied. I have a follow up appt next mont. By the way when I called the office, I had my questions answered within less than 5 minutes. :)

Comment by MsChief on March 25, 2012 at 6:13am: Hi Bedrestmom, do you know if the Mayo clinic offers payment plans for people without insurance?

Comment by MsChief on March 25, 2012 at 5:57am: Hello, I'm Annette. I was diagnosed with TN last month one week after my 31st birthday (on Valentines Day). I am in Chicago and I'm having a very hard time finding a support group out here. I am very happy to have found you guys. My TN is on the right side but I recently started feeling pains on the left. I tend to have panic attacks when my jaw starts to shut. It is really nice to have people who understand.

Comment by Chris K. on March 20, 2012 at 9:05pm: Hi bedrestmom, I'm in the Twin Cities too! That is great that you are able to go to the Mayo Clinic. We are so lucky to have it so close by.

In case you (or anyone else nearby) are interested, there is a Twin Cities Support Group meeting that is put on by the Trigeminal Neuralgia Association coming up on May 19th. I've only gone to one meeting so far. I was a bit nervous about going, but everyone was so nice and welcoming. It was great to get to hang out with people who are facing the same types of challenges that we are. They list the meetings on their website, but just let me know if you would like more info.

Take care,

Chris