Going to see Dr. Milligan Wednesday

Symptoms and Treatments Doctor Information
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I am going to meet with Dr. Milligan this week. I am in Prescott, AZ about an hour from Phoenix. I have seen one ENT who didn’t want to diagnose Eagles because I didn’t have enough throat pain. That was the only symptom he was looking for. I do have bi lateral elongation and had the original x-rays because severe head aches and neck pain. Also brain fog and night sweats. Anyway here is a list of my symptoms
Headaches that are daily and do not respond to medicine
Ear pain
Jaw stiffness. Even broke a molar from clenching at night
Neck stiffness and pain
Pain behind my eyes
Eye twitching
Light headed
Dizzy with nauseousness
Brain fog and bad memory
Occasional dull throat pain
Gagging feeling when I open my mouth all the way
Rapid heart rate at night
Night sweats
Horse voice
Constant tinitus
Fluid and itching from ears at night.
I am relatively new to this. I have been in pain for years and am finally acting on it. After I left the local ENT I talked to my ex-husband and told him that the Dr didn’t want to diagnose me and said eventually I will need to have them shaved down. I started to cry a bit and said I don’t want to live this way anymore. He encouraged me to keep my apt with Dr. Milligan. Now my fear is he will tell me the same thing. This is effecting every aspect of my life. I really hope he can help.

Any words of wisdom. What symptoms should I focus on telling him? How do I go about getting him to listen? My experience is that the other Drs thought it was do rare they made up their minds before I even came in.

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Your symptoms sound like ES. They are all important to bring to the table. It might be a good idea to write them down as you think of them. Later go back and mark then with there level of you awareness of them. When a person has pain for a long period of time we kinda put it in the back pocket…forget about it. Only seem to remember or note the one that is bothering us at that time. No one symptom is more important than the rest.

Hope the dr appointment goes well.

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Thank you so much. If it were not for this site I would probably have given up and just lived in pain. Both the Dr who ordered the X-ray and the ENT who ordered the CT scan seemed unaware of other symptoms or that there is classical and vascular. They want to blame my headaches on stress. I really don’t like when a Doctor does that. One of the reasons I put off going for so many years.

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Dr. Milligan also did my surgery 3 years ago. He was terrific! Good luck.

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Shalom Jessrealtor,
I am so, so, sorry that you are suffering. My onset of ES started after I had a child on December 24th, 1987. I ended up at several emergency rooms in Houston, TX. They never diagnosed me, even after I went to an ENT in the major medical center in Houston! Naturally the usual diagnosis was…Dysphagia in Neck, Then, I was told that because I had had a child on December 8, 1987…I was having “Post Partum” depression…

Well, it wasn’t till my son turned about 20 years old, It was still, wait for it…depression. Really??? No, I was having ES, but I moved to Oklahoma City, OK. and I was finally sent by my Gynecologist, because he listened to me, and he knew I was in severe pain. Even my PCP would not refer me to OU Medical (Research Hospital). He referred me there and after about 1 month, I was diagnosed with ES at OU’s Otorhinolaryngology Clinic. Up to that day, I had never been diagnosed! I was always being sent down a rabbit hole.

I feel that, that is what has been going on with you. My Physicain who diagnosed me is: Greg Krempl at OU Physicians in Oklahoma City. University Hospital and Physicians have the most up to date technology. Private Hospitals and their physicians are sometimes stagnant in how they do things,

Right now I am having issues with my stomach and I have had an Endoscopy, colonoscopy, CT Scan of my stomach, Ultrasound, and yesterday, I had a left side mammogram because now I have pain on that side then…later that day, I also had an MRI and got sick with the dye that they injected me with. I am now probably going to go back to my Gynecologist to get the referral back to OU Medical because I know…my PCP will not do it. UGH

All I can say to you is…pursue your healing…Not all doctors listen to their patients and not all ENT and dentist’s know what ES is.

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I waited years to go to the doctor. Then a PA who didn’t know about es ordered the X-ray. Ignored it because he looked it up and it was rare and he thought it was another condition. Looked myself. Went to the ENT. He was not very thorough and unknowledgeable.
I kept going on three months in. I got a referral to Dr. Milligan. I found him on here and felt he would be the best to diagnose me. He did and is going to do the right side first. Over 5 cm long on either side. Angled over arteries. I am happy I didn’t just give up. I have been in pain for years. My divorce has caused me to realize I should not have to push through pain every day and deserve to be happy. The other ENT just thought it was from stress because of my divorce. I get it, it is stressful. But my marriage was more stressful and I am actually happy once again.
Long story short, just because you have other stuff going on it is not always the answer to all your medical problems. It is lazy and irresponsible for doctors to waste people’s time and money to treat them like they don’t know their own body.
Dr. Milligan is great. Listened, looked at all the scans and explained everything well.

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Hi- sorry to have not chipped in with advice as I’ve been away for a few days, but sounds like the others have been very helpful anyway! Glad to hear that your appt. went well and that you’re going to get surgery! Not all doctors are concerned about the vascular/ classic diagnosis, as they will treat anyway, but unfortunately as you’ve found out, some are just plain ignorant!! (I was told by the first doctor I saw that elongated styloids can’t affect the blood vessels, but a CT with contrast ordered by the second doctor showed that jugular veins were compressed both sides!
If your headaches are from vascular ES then hopefully symptoms with improve quickly. There’s lots of info on here about what to expect with surgery, so have a search in the Newbies Guide and in the past discussions if you need to, and let us know when you get a date for your surgery! Really pleased for you!:grin:

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Sorry to hear that you’re having other medical problems, Hadassa, and thank you that you’re able to come back on here to share a positive story and give advice! Thinking of you, and let us know how you get on with all the tests… :bouquet:

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UGH…I found out my results of MRI I had this past Tuesday. You see, I went under an 18-wheeler back in Nov. 2006. I lived, but I ended up with 6 bulging discs, 3 in my neck and 3 at Thoracic 8,9,10. My physician called me at 8:15 am. this morning. It’s pain management, or surgery. Back in 2012 I had 3 screws and a plate put in my neck because I was not getting blood to my spinal cord. It was flat like a flat linguine noodle. The surgery did not work for me…and I limited use of my right arm. ES surgery was hard, but it was a doozey getting over the neck surgery.

I don’t sleep well and now my right side is being affected and that’s why I am having a pinching, stretching sensation, puffiness in my abdomen. I will see what my options are. No problems with ES, Praise Yah!

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Hadassa - It seems that if it isn’t one thing, it’s another! This is the challenge as we age. Our old “battle wounds” rise up & bite us again! I’m also finding that very old injuries are now causing pain issues in my life. I’m so sorry your injuries were so significant & that you’re suffering still from them. I will pray that the treatment options you’re given will seem reasonable to you & that you will be wise in choosing what will be the best to help your pain and abdominal puffiness go away.

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Hi jessrealtor! I don’t know how I missed your original post as I check this site daily, but I, too, want to say I’m so glad you kept your appointment w/ Dr. Milligan and that he has been able to answer your questions & be supportive of your situation. I do hope you can have your surgery(ies) soon so you can start “living” again. All of us on this site know what it’s like to be debilitated by ES symptoms and many of us have had positive life changing healing from our ES symptoms as a result of surgery.

:slightly_smiling_face:

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Thank You Jules…I am not having any problems with ES, but if I can encourage ANYONE on this site, I want to do that. I cannot imagine going back to Dec. 24, 1987. The onset of ES, but I never had a correct diagnosis till I moved to OKC. I know my steps were ordered by my Elohim. This site was also a God send, also. My surgeon who did the surgeon retired and the other day, I looked up his name and saw that he passed back on Dec. 13, 2012.

He was Professor at OU and actually taught other physicians and also had a private practice in Norman, OK. He was a life saver for me and some other day I will write how I came to move to OKC and got to finally have my surgery after 17 yrs. of a miserable life with ES.

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You right on the money with your statement about starting to “live” again.

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Hadassa how are you doing now? Not sure if you still check the site but im wonder year plus post surgery how people are doing. Any ES symptoms, stomach issues etc? I hope you are doing much better! :pray:t2::purple_heart:

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I am fine. I have an appt. with Dr. Krempl in January to check things out. Thanks for asking

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I am glad you are doing well! Can i ask why you have an apt? Ur still having Es Issues even after surgery?

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It has been since 2004 and I want to make sure all is well. Dr. Runkle said it could grow
back but, for me, it’s just to be on the safe side. I sometimes just want to know for sure.

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@Hadassa how long till ur stomach issues resolved after surgery?

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I think I had stomach issues from the stress I was under. I just felt sick from all the stress I had with ES.

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