Whole family needs help

Send me a private message. Where do you live.

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Get ahold of Dr. Samji in San Jose and speak to Kimberly about this it’s his head nurse she might be able to shed some light on you current situation 408 227 6300 or ■■■■ she might be able to shed some light on you situation and give you guidance or miss Wendy in San Jose might be able to help you my name is Lance Rittenhouse and just had two styloids over 4.5 CTm removed in the last three months so I’m able and willing to help you and your family out numbers are 808 938 0340 if I can be of service let me know I’ll get Wendy on this ASAP and get back to you don’t give up the fight took five years to get my diagnosed and removed just got to find the right drs and staff to facilitate your needs I’m praying for you and will call Wendy now and get in the path to help you and your ohana or family I’m from Hawaii and we call family ohana so blessings to you and your ohana Lance buzzzzzzy Rittenhouse Aloha be well don’t give up your fight head up plow through this like it’s nothing it to will pass Aloha buzzesgles

Isaiah_30_40 she’s very knowledgeable and has the insight to help with this must keep your faith and plow through this you’ll find help and strength through the lord and this forum good luck and god bless you and your ohana it will pass don’t give up hope amen buzzeagles aloha

Thank you very much for your advice and referral. The kind words help heal the soul also. :innocent: I will be in touch, it’s a slow one foot in front of the other here but I won’t stop stepping :slight_smile:
Blessings to you and yours

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I messaged you my story and ENt and other info.
Buzzeagle63, happy you are willing to help her get answers, I will work on trying to locate the Florida doctors. God be with us.

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Sadly, the only “natural” way to deal w/ Eagle Sydrome is to receive cortisone shots or lidocaine shots in your neck periodically. These help some people from a few days to a few months & others not at all. Surgery is the only sure fire solution for relieving ES symptoms. As Catmd said, doctors will not guarantee that surgery will cure the symptoms but the testimonies of many, many people on this forum over the years it has existed demonstrate that surgery does make a huge difference in symptom reduction.
The vagus nerve is one of the nerves most often irritated by elongated styloids &/or calcified stylohyoid ligaments. The jugular vein & carotid arteries are also at risk for compression by the styloids/calcified s-h ligaments. Heart & vestibular problems are most often caused by irritation to the vagus nerve &/or compression of one or more of the vascular tissues mentioned above. The only way to stop the irritation or remove the compression is to take away the thing(s) that is/are causing the problems - in this case the styloids/s-h ligaments. Toward the end of his life, my dad had very strange heart problems that included the feeling he would pass out. He had many cardiology appts & wore a halter monitor for a month w/o receiving a diagnosis. This occurred during the period of time I’d been diagnosed w/ & had 2 surgeries for ES. He joked w/ me that he was sure glad he didn’t have Eagle Syndrome. It wasn’t until after he died (from a brain aneurism) that I got to thinking about his heart symptoms & am very suspicious that he might have had ES, & that’s what caused his weird heart troubles. Sadly it was too late to find out for sure.
I, too, am sorry to hear about the run around you’ve gotten from so many doctors & especially that you & your children are suffering so much. I know being on Medi-Cal doesn’t help your situation as it limits your doctor options.
Emma has offered you some fantastic leads. It would be great if you could pursue those. I know she’s at work trying to help you find a doctor or doctors closer to where you live who acknowledge ES & will work with you.
May God give you the wisdom you need & provide you with the absolute best doctor for you & your family to help free you from the health “prison” in which ES has placed you.

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I’ve found an article which looks into a sudden death- not to scare you, but in the discussion in the article they mention a couple of other cases, which detail symptoms like your family have- low blood pressure, fainting & cardiac arrhythmias: https://www.omicsonline.org/open-access/eagle-syndrome-and-sudden-and-unexpected-death-forensic-point-of-view-about-one-case-2■■■■.1000230.php?aid=26631
Hope this helps- there are others, if you have time to look mentioned in the Newbies Guide: ES Information: A Scary Subject
As for alternative treatments, as Isaiah has said the only real cure is surgery. Injections of steroids into the area can help with pain, & some members have been helped with chiropractors, but you would need to see someone very knowledgeable as they could do more harm than good- it’s not something personally that I would be willing to try.

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Thank you very much for your response. I am grateful. I actually did get a lidocaine shot about a year and a half ago for this spot in my back between my shoulder blade and spine that has been in constant pain since 2009, mri’s and drs dont know what it is from either but that dr put it into the side of my neck and the pain was gone within minutes, it didn’t last long but it did relieve the intense cramping that it was doing at the time. I am wondering with your suggestion if with some steroids it might last longer? I’ve always had posterior neck pain also (like i’m always tense), been on flexril for years because of it, of course theirs been no explanation as to why. I read one of Emma’s post yesterday that said something about the 11th cranial nerve being affected and possibly causing pain in the trapezius muscle. I google a pic of that muscle and sure enough It made sense, even the left shoulder pain i get is on the top towards the back. shoulder mri was neg too. I will print the article with a pic and see if my primary care dr will try the lidocaine and steroid shot. I feel very blessed here thank you again.

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Thank you so very much I am in awe at the support, guidence, and understanding I am receiving. Its hard for me to even comprehend that you so soon after surgery are going out of your way to help. It has been just me and my kids for over a decade now and I am not used to receiving help or even concern from others. I really don’t know what to say except to let you know that you ALL are making me feel very cared about. With tears streaming down my face right now I do not know how to thank you enough. :heavy_heart_exclamation::heavy_heart_exclamation::heavy_heart_exclamation:

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I have been trying to send you some private messages about Cleveland Clinic and ask you questions. They are not going through for some reason. Maybe the message line is not working or I am sending too much. I will try later.

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Thank you so much. I truly appreciate it. Blessings to you and yours

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I hope your primary care doctor will be willing to learn about ES & willing to give you w/ the lidocaine/cortisone shots. I don’t know if both can be done together. It may be one or the other, but asking is always free.

:hugs: Hugs to you & prayers for you as well.

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keepingitreal, My heart just goes out to you and your family…You will find a doctor. ES is rare but, if you do have a diagnosis of Eagle’s Syndrome, that’s half the battle. It took me 17 years before I got a diagnosis. I was on that merry-go-round. The onset for me was on Christmas Eve 1987. I had been baking all day and I just threw a LeMenu Breast of Chicken Florentine in the oven and I took 1 bite and that was the beginning of "Hell on Earth for me! I felt that I had swallowed a tiny bone…and so began my journey for answers. I lived in Houston, TX. and I had just had my second son on Dec. 8th so, guess what kind of diagnosis I got??? Postpartem depression, dysphasia of throat. Nope, I prayed so much and I ended up moving to OKC in 1997.

It was there that I ended up being referred to OU Physicians by get this…my Gynecologist…I always go to Mercy Hospital and none of them would refer me to OU because that is a University/research hospital. They did not want me to go outside of their system. Meanwhile, I was slowly dying. I was desperate! Dr. Carpenter(who just retired July 31st) heard and knew my suffering wrote the referral. An OB/GYN sending me to an Otorhinolaryngologist Clinic! Yah had his hand in it from the gitgo. I moved from Houston to Oklahoma after living in TX. all of my life.

Dr. Krempl diagnosed me in 3 weeks and sent me to another professor/doctor in Norman, OK to do the surgery. A week after I got diagnosed with ES, I had the surgery to have the Styloid Process removed through my mouth. It was the surgery from hell but, Yah blessed me with praying, devil busting friends. It took me about 4 months to recover and I have been healed since 2004. I have an appt. with Dr. Krempl in Jan 2019 to make sure it is okay.

Right now I have teeth problems so, not feeling real good. Extraction of molar this last Friday and I am having some discomfort. One thing I will say to you before I sign off, this Blog has been so helpful and encouraging to me after so many years of giving up hope. Stay with this Blog and move forward. When I was suffering and standing on HIS promises, I felt I was dying and it was a slow death. I was giving up and it was hard but, I pursued my healing.

Just because I had 2 good paying insurances it didn’t mean I was going to find the right physicians. I had to totally surrender to the Great Physician, my Creator. So, inquire of Him to order your steps to find a diagnosis and a good physician. Hang in there. We’ve all been through it.

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Thank you so much for sharing your story, love positive endings! I am being so blessed here and will defiantly continue to post. You all are helping immensely from the little things like sharing your stories to some actually calling drs for me, it’s amazing!!! I am one who finds my worth in doing the right thing. I have spent 14 yrs by myself after my second divorce, just raising my kids. I know what it is like not to have parents/family around so I made it a point with the kids dad to keep him involve. I have keep our home safe and secure and not involved alot of ppl in our lives so it would stay that way. I planned all three of my kids (all I wanted to be was a mom), the grandkids are “God’s sense of humor”, I say; as i didn’t plan on raising two of them. I have a wonderful 25 yr old daughter in the school of hard knocks but surviving and due to graduate soon (i hope), I have a awesome 23 yr old son who is in college and works full time and I have a amazing 14 yr old daughter in advanced honor classes and marching band. I got my grandson when he was 18mo old until he was age 7 when dcf reunited him with his father and I got my granddaughter when she was 13mo old, she is now 41/2 and still with us. I grew up raising myself and was completely on my own at 16. I am used to being strong and doing things for my family is also where I find my worth.
When i posted here a couple days ago i was in a lot of pain and just at a loss; to watch my children have these symptoms and not get any answers from drs is more torturous for me then the pain and symptoms I have myself, so i reached out… I want to state again how really overwhelmed I am by the care and concern ppl here are showing. I’ve always felt i have to earn my worth and here i am feeling worth as a person for something that I viewed for so long, as making me worthless (ie…physical pain preventing me from doing things), its hard to comprehend. I am eternally grateful and so hope to help others here in anyway i can also. What a great thing this is!!! Once again with tears streaming, thank you so much to you all!!! God truly does heal in and through us all in so many different ways. Blessings

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You are so strong, I’m sure you will get answers, needing to for your family will get you there in the end, I’m sure. Hats off to you, Keepingitreal, you are amazing! :smiling_face_with_three_hearts:

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Thank you Jules, you’re great too :wink:

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Not in your league…

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Hi I am one with es and with 9 kids and most of them has es as well. I was able to get some relief and kids as well through chiropractic care but not all chiropactors will touch you with es I was lucky find one. But I now having more symptoms yesterday I face planted on the floor too. Ultimately the surgery is best for seeking help and getting better. I feel for you. As for the Medicaid we to had Medicaid but went through the Obama health plans got blue cross for me to go out of state seek a specielest in NC. That was in 2014. Since my husband has got INS through his work.

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Hi I agree with Jukes a ct with contrast is needed. I too suffered same symptoms doctors dismissed until an eagle eyed, excuse the punn! ent trainee spotted it, now I am finally being taken seriously. Waiting to see maxiofacial to discuss surgery or other options. My ent too felt the bone inside mouth back of the throat and then confirmed ES last Monday. If you need to talk just message me.

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Keepingitreal
I’m so happy for you in that you have found this group. It has been truly a lifesaver for me. I have also suffered with ES for 20+ years and finally diagnosed in April of this year. I am still working on finding a competent surgeon to rid me of this evil, but I am confident it will happen sooner rather than later. I hope you are able to push forward now as well with the encouragement and love from all the wonderful people here. They are responsible for keeping me going and keeping that hope that life really can get better! You are a special person and I wish great things for you and your family. Godspeed

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