Well, the saga continues. I got my NL to refer me out to pain management to get cervical epidural steroid shots. Except that the Pain doc needs to see me in clinic first and her first appt. is on July 10! After that, they would need to schedule the shot, which usually takes 3 weeks from the time it is requested, therefore I am looking at waiting until AUGUST to have these steroid shots. They said they put me on a "high priority cancellation list" but that is not a guarantee that I'll get in sooner.
In the mean time, I have debilitating neck/head pain 5-12 hours a day. The length of time that I am in pain each day has almost doubled since when my problems started after I had my revision surgery 7 months ago. I have to take muscle relaxants or I can't sleep - once they start to wear off I wake up over and over again in pain. I called my NL and asked if there was anything else they could do to manage my pain while I wait for my shots. They said,
"We referred you over to the Pain Clinic because we have done everything we can. We have no more ideas for you."
Ask anyone, I am the sweetest person ever, but in that moment I wanted to reach through the phone line and pull that person's hair out. After trying literally 4 different treatment ideas (2 creams and 2 types of shots) you are done with me? That is (insert angry words here)!!!
So, I've decided to do anything and everything that I can for myself:
-I got an appointment with my GP to discuss my situation with her. I am going to ask her to refer me to a spine specialist NS and a geneticist. Maybe if I get an official diagnosis of EDS people will take me more seriously.
-I ordered an adjustable rigid cervical collar. I've noticed that the best thing I can do for my pain is literally hold the weight of my head with my hands so my neck doesn't have to. My soft collar does not have enough support to do this, so I ordered a rigid collar that was well recommended.
-I called my NS and gave him an update on the situation, asking if they could do the shots sooner and telling him about the increase of pain and the "holding my head makes me feel better" thing.
I really need something to work out soon. And a hug.
Donna, I am very hopeful the collar will change things for you. The instructions I got from the NS is to wear it at night (most important)because we contort and bend ourselves in our sleep, and during the day with breaks as long as you are conscientious enough to not bend your head forward or backward. You may need a muscle relaxer for the first few days or weeks with collar- there was a curve for me. The NS had me stand against a wall with my head touching the wall- this is correct posture and what we should be working towards if we are dealing with instability- this posture keeps the spinal cord in the least compromising position.
I’m mad about how you were treated and I’m mad that they aren’t trying to help you. how are you holding up? How’s your spirit? I know you are a genuinely nice lady, Donna, we all do, and not one of us would blame you if you lost it. They should be working to find the missing piece!!! Speaking of yes get the flex ext MRI and rotational CTs. Maybe your GP would order them??
I know you are in a lot of pain sweet friend, and I’m so, so sorry. I don’t think your story is finished, I think there are some stones left to be turned. Hang in there. Hugs
Jenn
UPDATE - I've been wearing the rigid cervical collar for three days now. It is an amazing difference. When I am wearing it, I do not get any of the neck/head pain that I have been so used to for the last 7 months. When I take it off I get the pain. It is like a light switch. I hope that this will help with my diagnosis.
As a downside, I am still trying to get used to wearing the collar. The muscles in my shoulders and upper back get tight while I wear it and it has pulled a rib in my upper back out of place. Yowsa. I'm trying to get an earlier appointment with my PT to try to fix it. I have faith that she can help me.
Also, I got another appointment to see my NS on June 18th. That is a pretty quick appointment for an NS, so I'm pleased. I hope this new information will be helpful.
Mandy, Abby, Emmaline - Thank you so much! It means everything to have support from people who understand me when it feels like my doctors are failing me. You make me feel up to fighting the good fight.
Beeba - I am definitely going to ask all the doctors that I am going to see in the next months to do those imaging tests. I hope that the addition of the rigid cervical collar helping me so much will give them more to go on and spur them into action. Also, I will not be taking no as an answer.
I have always been a little hesitant with an EDS diagnosis because I would only maybe pass the Beighton scale with my current injury load, but I have almost all of the associated conditions, including some of the rarer ones like local anesthetic intolerance. I also have had problems with loose/subluxating joints since I was a child. I'm not sure if a non-specialist would diagnose me at this age.
Jenn - Thank you very much for the instructions on the collar - it made a big difference in how comfortable I am while wearing it, even if I'm still dealing with some muscle tension. I'm still having a hard time sleeping in the collar. I tend to take my night meds, fall asleep on my back with the collar and then wake up at 1 or 2 with the intense need to take it off, even though with the collar on I don't have neck pain. Then I spend the rest of my night rolling from side to side in pain with the collar off. It is a work in progress.