Dear Sandy -

One can never say you haven't done your homework. But I'm sorry to hear that Lindsay wasn't a candidate for Ziconotide.

Good information or not, I feel bereft of good ideas at this moment) far too late at night in California) and wish I had more to offer. And I'm not about to suggest RUL ECT for a twelve year old! And forgive me for not checking the search engine on this, but while not a cure, have you exploered the possibility of IVIG along with the HBOT?

Glad you liked the pic. I color enhanced it to make up for the lack resolution: that's Half Dome at Yosemite in the background from a couple of summers' ago.

Wishing you and Lindsay well with all my heart,
Mike

Hi about 6 months after my pain started in my leg and was dx with RSD and PN I started to have eye problems that got so severe I was crying from pain of the eyes. The pain also began to go to the ear where the pressure was so bad and like a horrible ear infection. During a year or so I went to 10 eye specialists, 50 eye apts,neurologist,mris etc there was nota cause other then blepheritis and dry eye but that does not cause the horrid pain that I experience. I saw Dr Stanton Hicks and from my experience he does not believe in rsd in the eyes cause he suggested another eye doctor and when I was talking about my eye pain he brushed it aside and the focus was on the legs only. I have heard others with rsd who have it in their eyes so though it may not be as common as in the limbs I do think it can be and is for myself and others. I hope the treatment I find for my legs will also help with the eyes. For others as well too. My ear pain I feel is connected or spread to the ear because my eye pain and about 6 months after it started it changed the type of pain and it began going to the ear. I have no idea if I am making any sense. Sorry I could not offer more help just that I am in a similar position. Hope your daughter feels better

Eye problems
 

I was the lucky winner of permanent horners syndrome after an unsucesful RFA in the ganglia branch of nerves in the neck . I have the droopiness on the left side of my face and the left pupil stays constricted . I have occasional flares that involve the eye and have been told by my opthomologist that the ganglia branch of nerves is tied in with the eye and my nerve is telling the brain we have a problem even though the eye itself is healthy . During these flares I will have severe pain in the eye and blurred vision , all I can do is wait it out when it comes on . Hope this helps some . Take care !

Hi all,

Well both Lindsay's doctors are on vacation! Surprise, surprise. She woke up this morning with less eye pain. She went to PT and her Therapist looked at her eyes and said she has a slight yellowing. I have an appointment for her next Tuesday. I am watching her very closely, but she felt better after PT. She was able to go outside in the light without pain today. We have had massive rain storms for the past week. They have not let up. I am sure that could have a lot to do with her pain. But, if the yellowing changes I will take her to the ER.

And RUReady, I am so sorry that happened to you. I just find that unbelievable. I hope that things look up for you. Everyone has been so helpful during this flare of Lindsay's I thank you all so much.

Much love,

Sandy

Thank you for bringing Dr. Stanton-Hick's position on the possibility of occular CRPS to everyone's attention. I stand corrected on the issue of any referral to him that would reference occular issues, per se.

Mike

Sandy glad your daughter is doing better and i hope it continues
Mike I am not saying people should not see Dr Stanton Hicks but just my experience with the eyes and overall I was not that happy with the care in general for myself. A girl I know though had a scs impanted by him and is doing well.
Ruready I am sorry about your eyes. For me too a lot is about waiting it out for the pain and flare to settle down.

I too was the lucky winner of permanent horners syndrome. I had TOS with the removal of a rib. I woke up from the surgery and could only open 1 eye,and that was in 1990. To this day when I flare my eye droops,gets swollen and red and painful,the Dr.s tell me to also wait it out, easy for them to say, but evidently there is nothing they can do as I have seen a few specialist, it stinks but we must just keep on going.So,yes I would have to say that RSD can go to your eyes. I hope everyone has a painless day today
Wendy

Hi Sandy!
give my thoughts and prayers to Lindsey. i am so sorry she is suffering like this. i did hyberbarics like hannah said for about four months. i had no lasting relief. just when i got out i felt like i had slept for a full 8 hours, which yes was amazing!! but being in htat confined space was not worth it and it was far away from our house so we found it not worth it. also they can be pretty pricey.
please keep us all posted! and give lindsey a soft hug for me.
:hug: