Thank you Jules. I appreciate this board and you and every single person that has responded to me.
I guess I can kind of see why the Neuro is jaded too, but after 7 years with her I don’t know what else to say. She wanted to stop being my Dr. last year and I didn’t go back until all of this came to a head recently. I sat with headache and migraine and the Dysautonomia and other dxs. For a year. It is a shame to me that Dr.s are not believing people because of the bad apples. I wouldn’t have hung out for seven years if I was pretending. They have the MRIs and CTs and whatever else they did. I am on pain meds (ONE) and complaining about still having crazy pain and I GET that it doesn’t make sense. BUT things I am on the pain meds for don’t hurt so I can function! It is working for what it was rx’d for! But the stuff happening in my head and neck is just crazy bad lately. I think I may have a sinus infection to boot! And to top it off, I have a horrible UTI as well.
There is a lesson here everyone. At my expense.
I had my kids with NO PAIN MEDS. ON PURPOSE. I had a tailbone broken at a 90 degree angle sticking into my rectum for 20 years until I got it removed. I had four children during that time that I had to raise and their Dad was gone a lot. I put that god awful pain on the back burner. And when I finally went in to an orthopedic surgeon for a consult he had me walk across the room several times and said “Ok, you aren’t in any pain, so I don’t think I can help you.” I started bawling and begged my ex-husband to tell him the enormity of what was happening. He said “Ok before you leave let me do an exam.” He put on a glove and checked the bone by rectum access. His eyes got really big and he said “OH!” YEAH. OH. And he said it was broken at a 90 degree angle and right into my rectum and boy I needed to get that out immediately! No S*#&!
We are not going to the pumpkin patch and I am very sad. I am missing out on so many life events. Missed my daughter’s best friend’s wedding shower. Missed going out of town with my family. I miss working and contributing to my family. I miss boating. I miss going to the park with my Grandson. I am so tired of not being believed. I feel horrible for venting all of this here. I am bearing my soul, in a way. And believe it or not, again, there is more stuff I need to tell a Dr. that I cannot share here.
Did you see Emma’s doctor recommendation for you? Here it is again in case you didn’t - “Dr. Alemar, Weston, FL, does ES surgery. Cleveland Clinic near Miami. PM me. You need the right doctor. There may be one or two more in FL who can help you.”
Emma went through much of what you’re going through. She had some different symptoms but was equally as disabled by them. She’s done months if not years of doctor research so her recommendation is a good one. Dr. Dz’s info says he turned away one member from our forum. That is a bit scary to me.
We’re so glad to be here so you can vent. Jules & I (along w/ others) are praying for you to get in to see a good, competent ES doctor soon. Please feel free to vent. Your situation is very difficult & we wish we could do more for you than encourage you w/ words.
I’m sending you a hug & all the compassion & sympathy I can muster. You’re on a tough road but doing a good job navigating it in spite of the hurdles you keep encountering. NEVER GIVE UP!! I so hope you’ll find the right doctor & be on your way to recovery before this year is out.
THANK YOU SO MUCH FOR YOUR WORDS, THOUGHTS AND PRAYERS! It means the world to me. I did see her Dr. reco…the bad thing is that I don’t know how to even go about going somewhere that far away. Jacksonville and Gainsville are about 5 hours and that is feasible. The cost is what scares me. We are not wealthy and I no longer bring in an income. Does he do telephone or skype type of appt? It is very late. We just went grocery shopping. I did get to speak to my Aunt tonight. She is very supportive of me and made me feel better. I have my husband and her. The rest of my family thinks I am making this up. I couldn’t make this stuff up! I will have to read Emma’s story tomorrow.
Thank you all for your help. This is such a heavy issue. I appreciate you all.
@dharmadel,
You can do this, you can even when you think you can’t. You are stronger and braver than you think. Keep putting the next foot forward and don’t stop. Write everything down, keep a note pad with you to help organize your thoughts. Stay hydrated and eat a clean diet as best you can. Use your phone to set alarms for reminders. Lean on your aunt for support and help, lean on your friends.
Take time every hour to stop, rest and focus on your breath - lie down with your hands on your stomach, direct your air to your stomach lifting your hands… inhale for the count of 2, pause/float, and then exhale for the count of 4. Do this for 10 minutes EVERY hour and as you lie down to sleep at night. This will help to calm your nervous system and keep you present.
You know you better than anyone, you are not alone, you can do this. Here with you, big hugs
Thank you so much! I am a HUGE believer in meditation and I have lost my way for a long time because of this issue. I have been stuck in flight or fight mode. I needed that, just now!
Definitely understand what you are saying and feel like I’ll never get to surgical stage (still undiagnosed) but I have to figuratively slap myself into reality. There are 100s of people on this site that have had surgery when the first five doctors they saw couldn’t diagnose them. Please keep believing and moving toward an answer! Granted, there are activities you cannot do right now, but imagine how much fun you will have after ES surgery recovery.
dharmadel - I hope your ER visit gave you relief from whatever symptoms you were having. Please update us about that.
As far as phone/video conference calls go, you have to contact the specific doctor’s office to ask if the doctor does that. Some do & some don’t.
Regarding cost, if you have medical insurance, they often pay part or all of a video/phone conference call. You would need to ask your insurance carrier whether they do or not. If you have a PPO they should pay at least a portion of your surgery bill even if the doctor is out of network. You can get your share of cost estimate from your insurance company once surgery is scheduled (or if you can find out the cost from the surgeon ahead of time) so you can decide whether or not it’s affordable. In your situation, it might be more feasible to have bilateral surgery so you’re only facing the surgical cost once. Many doctors aren’t willing to do ES surgery that way, but recently, we’ve seen more people posting here who have had bilateral surgery - especially intraorally.
We are here for you. I’m sorry you don’t yet have a diagnosis & that your pain is so intense. I hope your doctor’s appt today provided you with some help.
Thank you those of you who responded for not tossing me overboard. I can understand why Dr.s feel that way but only a little. I had a fever and was dehydrated when I wrote my ER post post and I have never felt so belittled and humiliated in all my life. I am scared to death. I begged the ER Dr to look in my mouth because I could taste and smell infection. He refused. I begged him at least five times? I told him of my symptoms…I did not say I thought I had anything like Eagle’s or anything else. I told him I was sick in several areas and I had a sinus infection which took it over the top pain wise. I asked and he said no he wasn’t going to look because the blood tests showed nothing to be concerned about, no infection. Said CT was absolutely normal. I asked about my styloid lengths and he said the radiographer didn’t say anything because my CT is perfectly fine. I had to beg him to take my blood to check for infection. I wasn’t even checked in until maybe four or five? hours of sitting there. They did not take my temp, they did not give me fluids. I told them I lost bunch of weight because I can’t swallow. My husband finally got a nurse. She was so demeaning as well. Even with the one shot they gave me (she said whatdya got a headache? And then she came with morphine and said oh is this gonna work for ya?) They never put fluids in me even, took no temperature. I love my regular Dr. He is the best Dr. I have ever had!!! I went yesterday thinking it was my appt but it was actually today. We were there for a long time. I was catching him up on EVERYTHING. One of the first things he did was look in my mouth. He said “You have a horrible sinus infection!”. I started crying! That was what put me over the top in the ER because he would not even look for signs of infection!!! Would not even look in my mouth! I am scared guys, because where am I supposed to go if I ever need emergency services again??? Are they just going to let me die because my customer profile says I am looking for drugs??? Even my urologist has the notes…all Dr.s in their system. I heard my urologist and her male nurse discussing why I was flagged. She said she didn’t get it because I never asked her for anything like that. I explained all of this to my Dr. He pulled my controlled meds record from the government and just like I told him he is the only prescribing Dr for my one pain meds. I am sorry this post is mixed with that, but I am trying like hell to get well and this is a soul-crushing event that someone would question my character and then treat me in that manner. I do not believe in lying. I hate liars. And this is affecting how I feel. I feel so weak.
In other news…My Dr. asked if the Neuro did a head scan for sinus etc and no of course not. He listened to almost all of my issues, I forgot some, and he tested me for the UTI and he took samples of what was coming out of the hole in my tonsil and he swabbed me for HPV!!! I am SO THANKFUL that I have him. He then asked me where the nearest Dr. is that could look at my tonsil, styloid and everything else and he told me to send him the info of the Dr.s here in Florida! Send your good vibes/intentions/prayers or whatever you believe in please!!! I hope I am on the way to answers and help and health and positivity! I think I forgot something but I need to lay down. I hope you are all feeling well. Thank you again for not tossing me out on my ear. I have just never felt so dehumanized in all my life. I really could not make this up!!!
Sadly, you aren’t the first person this forum to be treated the way you have been. A number of our members have even been sent to psychiatrists because their doctors ultimately thought they were hypochondriacs. It really is pathetic. A little medical understanding of the cranial nerves & the symptoms they can cause when irritated would point to a more central “something” causing the problem & that would be elongated styloids &/or calcified stylohyoid ligaments. Unfortunately, many doctors heard about ES in passing in medical school so it’s not something that readily comes up on their diagnostic “radars”.
I understand you don’t have lots of resources that allow you to travel for medical care, but if the doctor your PCP sends you to is also uncooperative as far as helping to check for ES goes, it would be wise for you to get in touch w/ one of the doctors on the ES Doctors’ List for your state. You can use the gray magnifying glass icon, above right, to search each doctor’s name to see if there have been any posts about each one. This may help give you an idea of who would like to see.
Connecting the Dots by Sherri Jonas chronicles her journey in getting her son’s ES diagnosis. It’s a quick read & available on Amazon. I think you will appreciate what she went through in light of your journey so far.
Yes, I picked the DR.s off of the list here that are in Jacksonville (Mayo) and Gainsville (UF SHANDS) I gave him all the info! He responded very positively because I told him everything and he gets it!
I also have a childhood friend that I recently connected with. She is a nurse for and ENT group at University of Chicago!!! And other hospitals in the area! I had NO IDEA what her work was and it just kind of happened in a weird way. She is working with one of the Dr.s there and they are using my ct scans and test results. I have no idea how this happened to come about. Well, I asked and it was given to me. I will put it that way. I would love to help a Dr. in their research with this syndrome if indeed I am diagnosed. I would love to write about what I have been through. It’s a lot! I have had a very interesting life, well, until lately lol because I am stuck in my house now since I can’t work! I think my Dysautonomia and Autonomic Neuropathy are definitely connected to this issue.
I posted on FB the other night that 2020 smells like healing , transformation, blessings and success! And I am going to embody that. It is time for me to take my life back!
I am going to look at that book too. I literally told the horrid ER Dr. that someone needed to connect MY dots and that I was falling through the cracks. He did not care! Not one darn bit!!! And again, he refused to look in my mouth and I really did have a crazy bad sinus infection on top of everything else. I am considering a few ways to let people know. It is ridiculous Dr.s are supposed to do no harm.
I’m glad that your PCP doctor is so helpful, hopefully this will help your faith in doctors a bit…at least you have this doctor to go to rather than ER in future. Great too that your nurse friend is going to show doctors your CT too.
I hope that you get some answers from one of the Florida doctors soon. Thinking of you, & praying for you!
