My journey

Hi everyone,
I cant tell you how lovely it is to finally find some brilliant people who understand what I am going through. I have had many symptoms for six years and I have seen so many consultants who all come to the same diagnosis - neuropathic pain ( I had a brain tumour 30 years ago) I have had pain and discomfort for six years and all doctors have failed to diagnose. I have paid to see a pain consultant as I thought there was no option because of my scar tissue on my neck and head, he suspected eagles and ordered a 3d ct and there they were very elongated, today I have seen a consultant who was lovely and maybe I can move forward.
I cannot move my neck very well and open my mouth now and feel my symptoms are very much worsening. I cannot lay on my left side much at night ( both sides elongated but left is worse) so uncomfortable.
Thankyou to all of you and for this website, it has actually given me hope as I was beginning to think I was going insane and believed my GP Saying I was a hypochondriac!!! ( I have since changed doctors) I have had very dark thoughts as not being heard is the hardest thing.

Love to all xx

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I’m really glad that you were able to get diagnosed- you’ve done so well to hang in there & not give up! So what’s the plan now- can the consultant operate? Is he/ she experienced?
BTW- have you tried sleeping propped up? That was the first bit of advice I got here, & it made a huge difference. I also used one of the V shaped orthopaedic pillows, it seems to help take the pressure off the side of the neck which was painful.
Let us know the next steps for you, & wish you all the best, Jules

Hello Ersaj…so happy you found this group as well. I have only recently found it myself and I can tell you it helps immensely! So sorry you are having to deal with this and I think we have all been down that hypochondriac road! I too have had many days of dark thoughts and I realized over the weekend that I haven’t really had any of those dark days since finding these awesome people a few weeks ago. Always willing to share this nightmare with each other and reassure that we are NOT crazy! Best of luck with your progress and please share when you can.

Hang in there Ersaj, I suffered for 17 years with no diagnosis!!! I moved from Houston, TX. to Oklahoma City. Three years later, I got diagnosed with ES by Dr. Greg Krempl at OU Physicians. He’s on the list for Oklahoma. Keep pursuing your healing and you will get through it. Go wherever you have to go. Moving to OKC was the best thing I ever did. My life is better and I can eat all kinds of food, without fear.

Such great news to hear of your progress in finding a good doctor. I hope this one works out for you so you can progress toward permanent healing!

I totally sympathize w/ the pain & stiffness you have in your neck & jaw as I had some of those symptoms as well. Surgery took them all away! HIP HIP HOORAY!

Hi everyone,
Cant tell you how lovely it is to know I am not alone, still waiting for a date for external surgery on my left styloid as thats the side where everything hurts, my tongue at the moment feels numb on the left side, pain in top teeth, ear buzzing, neck pain and face pain, there isnt a day that goes by without something!!! I have been prescribed tramadol for night times, bit stronger than co codomol and ibuprofen, I have had to start taking lanzoprozol for my stomach, years of tablets seem to be having a not so good effect.
Thanks to eveyone for support and I hope we all get relief eventually from this horrid syndrome.

I hope that you don’t have to wait for too long… I guess as they’ve diagnosed you with neuropathic pain you’ve tried the nerve pain medications already? Thinking of you :hugs:

Tried all nerve medications with no joy, it really does take over your life doesn’t it? Hope your doing ok Jules? X

So glad you are here! I have not had my surgery yet, but these folks have been so helpful. In regards to sleeping, I have used a Neck Bone Pillow with great success – I started using it years ago before I had an inkling that I had ES. They can be purchased online or at Bed Bath & Beyond for $15. I got two of them so I didn’t have to pay for shipping and I would never be without. (A very dear puppy of mine chewed the end off the very first one I got, so I thought I’d better have a back up.) Please post updates. K.