Klippel-Feil Syndrome Support Group

I am writing about coping.

Since learning of KFS a year and nine months ago the search to find help for pain and an idea on what to expect, and what is going on thats causing the issues, and how to fix it... has consumed my life.

I have been to countless Dr's and tried countless things such as Physical Therapy, Acupuncture, Myofascial Release therapy, pain management injections, all sorts of blocks and injections, a hospital stay of two weeks to try and end the head and neck pain... and as you know, the work involved in the appointment making, the searching, the researching, the bills, the insurance, etc.... is a FULL TIME JOB.

I find I work, try and take care of my home, and try and relax, and try and pay for it all.... and that is my life. There are no trips, no fun, no outtings.

So, I am not coping, I am overwhelmed, and I do all of this on my own.

I asked Lisa (our delightful leader full of knowledge) who do I see to talk to, someone who "gets" the pain and the management and the lost "life" .... who can help me cope?

Lisa said "You need a neuro physcologist" ( I can't spell it). So I searched in my area and I found one. She had been in a car accident and she knows first hand way more about spinal pain and what it does and what to do about life with it. But she was not taking new patients. They suggested another "case manager" I said no, I want to see this lady, I want to see her only. They put me on a waiting list. I figured that whole thing was over and I might hear from them in a year or so.

They called me, seems she heard I was waiting, and saw the Klippel Feil diagnosis and did a search on the topic, and found room for me in her weeks.

I saw her last week. I just went through the topics I listed above, and told her I am not equipped for this long term and I need help. She said that she had looked up KFS, and could find so little, she kept looking and still could not find anything, and that she realized what I am up against and made room to see me. That alone fills my heart.

So we talked and I am to come up with a list of things I want to work on, or need help with. She is going to make a list of what she thinks.. and we will review and come up with a plan.

I made my list. I am not sure if I did it right, but its a step forward.

I told her about this group, and she made note of it. I just want to say that without this group I would be so lost and so alone and I am so thankful for each of you.....without you I would be sinking.

Thank you all!!!

Love,

Rosie

Last night, we went to the E.R. because Andi had uncontrollable pain and muscle spasms. The E.R. couldn't see her because they were too busy with the "sick" patients. this has happened before when she has a pain crisis, but I guess I was in denial because the E.R. is the only hope we had for the awful times. Now, I accept the fact that we don't have the hospital anymore really. The care is less than adequate-and can be downright dangerous(radiating unnecessarily, too many toxic drugs, and nosocomial infections). I realize that for pain, we need to go to a different level-one that is somewhere between the medical model and the alternative approach.

So here is what we are doing now-I'm signing Andi up for a palliative care program that is NOT hospital-based. Her intake appointment will be this week. With palliative care, she'll have a case manager, 24 hr, nursing and physician availability to deal with the crises so we don't have to go to the E.R.; and overall, we expect a more focused, personalized level of care that works for her. Fingers crossed this is the missing link for us. I'll be sure to let everyone know how we do, and at this point, I strongly recommend it. I used to be a hospice nurse, and I love the palliative care/hospice philosophy. What was difficult for me, was actually getting the connection into my thick skull that it might be a valuable service for my daughter. Being rejected by the E.R. was the impetus I needed.

Watch this space. I'll update you all. Best wishes to everyone for a pain free day tomorrow. Lisa

I do understand what you are going through as I am going through pretty much the same thing,as much as I want to give up, I know I need to persevere if for no other reason than to bring awareness to the medical community so that they can begin to help others. I hope you find relief soon. dbrhseny