Quantcast

Eagle Syndrome - Online Support Group

Recommended Doctors in the midwest

Hi all,

I live in Minneapolis, MN and it is crazy reading all of your stories. It is like reading my own. I'm looking for a good ENT in the area that won't just brush me off and tell me I have acid reflux or TMJ and will really listen to me. I am getting a 3d cat scan done and need a doctor to review it. The list of recommended doctors posted seems to be literally East, West and South in the US. The closest recommended doc is in Ohio I think. Does anyone know of a doc they would recommend in MN or any other closer neighboring state?

Christian22, if you can open Excel there is a list of doctors that I have put in the discussions. I think my last version was updated in May. I do not recall the exact discussion, but search for "Eagles syndrome doctors" and you should find discussions with my spreadsheet. I put dates in the discussion titles. I would look for you but I am in a hurry and the computer I am using does not have my spreadsheet or I would just link you to it. I cannot remember any in MN, but there are some in neighboring states. As I recall Mayo in Rochester does not seem to have any recommended doctors in this field. Good luck.

I am new here so am just seeing your question. I live an hr. west of Mpls., MN and beginning my search.

My Doc from MN CranioFacial Center in St. Paul knows of a couple.. main office is in Woodbury. There's a Dr. Eric Becken and others. Offices in Woodbury, Eagan, St. Paul, Maplewood.

www.mwent.net

651-■■■■■■■■

Also, just got off the phone w/Mayo and they no longer deal w/this problem any longer.

Did you find someone? Possibly at the University?

Winterinmn, I never did find a surgeon in MN. I just recently had surgery and had to go to Ohio for it. Did Dr. Eric Becken diagnose you with Eagles. If so, did he refer you to any surgeons in MN? I am bilateral so will have to get the other side done eventually.

My Doc from MN Cranio said they had checked all over and really only found Dr. Becken and Group. I met w/Dr. Beckon on Dec. 30, 2014.. it's 85 miles from me. He wanted a ct scan and I told him I'd have one done in Hutchinson/home. They had to mail a physical copy (different softwares), along w/the report. I called over there a bit ago and they're searching for it and will call me back.

I also just got off the phone w/Dr. Holly Boyer's nurse at the University of MN. A couple yrs. back, after another sinus surgery, I had seen her a few times. Nurse Mary is trying to tell me how rare it is and did I get diagnosed and that it may not even help? She'll talk w/Dr. Holly Boyer in the morning and call me back. So really, am in limbo until I hear from Dr. B's office.

Had you shared your surgery experience here before? If so, I would like to hear about it, and thanks.



Winterinmn said:

My Doc from MN Cranio said they had checked all over and really only found Dr. Becken and Group. I met w/Dr. Beckon on Dec. 30, 2014.. it's 85 miles from me. He wanted a ct scan and I told him I'd have one done in Hutchinson/home. They had to mail a physical copy (different softwares), along w/the report. I called over there a bit ago and they're searching for it and will call me back.

I also just got off the phone w/Dr. Holly Boyer's nurse at the University of MN. A couple yrs. back, after another sinus surgery, I had seen her a few times. Nurse Mary is trying to tell me how rare it is and did I get diagnosed and that it may not even help? She'll talk w/Dr. Holly Boyer in the morning and call me back. So really, am in limbo until I hear from Dr. B's office.

Had you shared your surgery experience here before? If so, I would like to hear about it, and thanks.



Winterinmn said:



Winterinmn said:

My Doc from MN Cranio said they had checked all over and really only found Dr. Becken and Group. I met w/Dr. Beckon on Dec. 30, 2014.. it's 85 miles from me. He wanted a ct scan and I told him I'd have one done in Hutchinson/home. They had to mail a physical copy (different softwares), along w/the report. I called over there a bit ago and they're searching for it and will call me back.

I also just got off the phone w/Dr. Holly Boyer's nurse at the University of MN. A couple yrs. back, after another sinus surgery, I had seen her a few times. Nurse Mary is trying to tell me how rare it is and did I get diagnosed and that it may not even help? She'll talk w/Dr. Holly Boyer in the morning and call me back. So really, am in limbo until I hear from Dr. B's office.

Had you shared your surgery experience here before? If so, I would like to hear about it, and thanks.

Just noted you said you only had one side done. Just asking, but why did you not do both?



Winterinmn said:

Now I have an appt. w/Dr. Onrey at the U of M.



Winterinmn said:

My Doc from MN Cranio said they had checked all over and really only found Dr. Becken and Group. I met w/Dr. Beckon on Dec. 30, 2014.. it's 85 miles from me. He wanted a ct scan and I told him I'd have one done in Hutchinson/home. They had to mail a physical copy (different softwares), along w/the report. I called over there a bit ago and they're searching for it and will call me back.

I also just got off the phone w/Dr. Holly Boyer's nurse at the University of MN. A couple yrs. back, after another sinus surgery, I had seen her a few times. Nurse Mary is trying to tell me how rare it is and did I get diagnosed and that it may not even help? She'll talk w/Dr. Holly Boyer in the morning and call me back. So really, am in limbo until I hear from Dr. B's office.

Had you shared your surgery experience here before? If so, I would like to hear about it, and thanks.

Dr Ondrey was a capable surgeon. The surgery was so simple it was done as outpatient. However he went down the throat and only removed the tip that was protruding into my throat. This might work for someone who only has pain but I need the whole thing removed due to pressure on cranial nerves that causes migraines, dizziness etc. If thats all you need you will be in and out within hours.

If something that simple would work, I'd try it. And being an outpatient is even better. I suppose you needed someone to drive you home? Could this be done w/a local? What was your recovery time.. and thank you.



Winterinmn said:

If something that simple would work, I'd try it. And being an outpatient is even better. I suppose you needed someone to drive you home? Could this be done w/a local? What was your recovery time.. and thank you.

Forgot to mention: I read last week here about having eye problems. My left eye gets blurry, seems to kind of sinks over to the left, and it is really very embarrassing. When my "jaw doc" does his craniofacial, it can almost seem normal, but only for a short time.

Still have to be put under so you need a driver. Went in at around 930 out at 2 if I recall. The recovery was painful for couple weeks, but any throat surgery is painful. Not as bad as when I had tonsils removed though.

Could this have been done eternally? How much time off of work did you need?

Dont think he will do external but you could ask. I would take 2 weeks to be safe.

Hi Christian22,

Im in ND I was also wondering the same. Ive been diagnosed for 4 years now. However, I did go to Rochester, BAD idea. The doctor did not believe me that my symptoms were from Eagles, he sent me back home for more neurology testing to be sure I didn't have anything else going on. Then, he didn't want to do any further treatment as he didn't think my symptoms were bad enough. They wanted to keep putting me on pain meds, instead of dealing with the problem. I was disgusted. Since then, I have done a lot of research and changed my diet so that I didn't have more symptoms to try and deal with. I changed my diet, little to no caffeine etc. It has helped a lot. I have also started taking a prescription med to help with headaches/migraines that I usually get. I have also started taking TruV and I have not had a migraine or flare up since starting it. It would be something to look into! Good luck. Oh by the way there is a DR in Fargo, ND thru Sanford DR YU agreed to see me, I think that was the name. I just haven't set anything up.

This would Explain when I went to Mayo they were not helpful at all!! They made me feel like I was making this up and it was all in my head....

Winterinmn said:

I am new here so am just seeing your question. I live an hr. west of Mpls., MN and beginning my search.

My Doc from MN CranioFacial Center in St. Paul knows of a couple.. main office is in Woodbury. There's a Dr. Eric Becken and others. Offices in Woodbury, Eagan, St. Paul, Maplewood.

www.mwent.net

651-■■■■■■■■

Also, just got off the phone w/Mayo and they no longer deal w/this problem any longer.

Did you find someone? Possibly at the University?

Have you noticed anyone else having migraines due to Eagles?

crmfghtr said:

Dr Ondrey was a capable surgeon. The surgery was so simple it was done as outpatient. However he went down the throat and only removed the tip that was protruding into my throat. This might work for someone who only has pain but I need the whole thing removed due to pressure on cranial nerves that causes migraines, dizziness etc. If thats all you need you will be in and out within hours.

Just removing the tip is not a good idea. I had intraoral surgery, the doctor went as far as he could. He removed. 2.8 cm. I don't know how long it was but it was a lump in my tonsil area. No tonsils. They were removed in 1957. But 2.8 cm is a pretty large piece since a normal styloid should only be about that long. Also, they must smooth off the edges when they remove it. Leaving a jagged edge only causes more problems. Going to a good external surgeon is optimal, in my mind, but there is never a guarantee of success. I am happy with my results so far. Some members had them grow back. I am hoping this does not happen to me. My doctor was very cautious and very knowledgeable about intraoral. He had Eagles and was operated on. Nothing like having a doctor who had the problem himself. They really make sure they know what is going on before they are operated on. I was only his second patient. He did not feel competent to do external. Most external surgeons do skulll base surgeries and the more they do the better qualified they are. Intra oral is successful but just taking a tip needs to be qualified. What do they mean by a tip? Is that as much as they can reach or just a little piece. Good luck

I see Dr Seth Janus for the last 4 years. Great Dr but very leary to do the external removal process.