Haven't blogged in a while. Have been trying to decide what this period of days has been about. I guess it's about the journey.
About a month ago I found an old key on the floor in my garage out the blue. I have lived here for 10 years. There are keys, old antique keys all over the place, and they seem to show up with a reason. So when this key arrived, I washed it and put it on my window sill. For days I asked "What are you about?" Weeks passed and I look at it and know it's about something, but what? I still don't know exactly, but I know it means something.
First, I had surgery 3 1/2 months ago to fuse my cervical spine at C4-C5. I can say now, that it has not helped me with any symptoms or head pain I suffer from due to Klippel-Feil Syndrome, Ehlers-Danlos Syndrome and Cervical Dystonia. I knew the surgery was not really addressing the area causing head pain, but I had hope. I hoped my arms and hands would improve.
Still in pain, I have now had to regroup and gear up- again. I have been to so many Dr's that I just have had to really pull my boots on and say "Now what?" and fight back the feeling that I am chasing something I will never find, and that I need to focus on other things and just realize that this is how it will always be for me, a life limited, in pain, unable to function, be social, drive farther than 15 minutes, etc.
While healing from surgery, I spoke to a Dr in Ohio on the phone. I had sent him my scans last fall, in October. He reviewed them and called me in March. I have elongated styloids, a condition called Eagles Syndrome, which are long thin bones that come down under your jaw basically from your skull. They can cause issues with your jugular veins when they are long and compress on them. I had seen 2 other Dr's about this and both basically blew me off. But the Dr in Ohio, Dr F, spent time with me on the phone. He felt that I really need botox injected at certain places in my SCM's (sternocleidomastoid muscles) to try and help the Cervical Dystonia, as a first step. BUT I could not find anyone to do them agressively.
After I saw my neurosurgeon post op, and she really was not interested in my pain and ongoing symptoms, I saw my Physical Therapist. I asked him for his opinion. I told him exactly the symptoms in my head, and he believes it is at the brainstem level. Well yes, I do have issues with my bones and craniocervical instability at that level. But no Dr has been able to address that level. He called a Dr he knows, who is not taking in new patients. He does injections and he injects botox as well. My PT helped me get in. Next week I will go see this Dr to discuss a few options. Some I have already investigated and seen other specialists to discuss with no outcome, some I have already done! But maybe he will have some ideas and insight.
I saw my headache Dr. We discussed my options again. Long story short, I tried Lyrica, and stopped Lyrica. I saw my Psychologist, and told her how I just couldn't trade in one bag of symptoms for another bag of symptoms that we call medication side effects.Neither bag is acceptable. She understood. I had to ask her if I was really off track to be looking for new solutions again? That is how much this path wears on a person after years of searching, being exhausted, and hurting. She always assures me that no, I am to keep looking if that is how I feel. That if I am suffering and need some balance of what amount of pain and symptoms are "ok", I must keep looking as long as my gut tells me that is the option.
Yesterday I went to my Neurologist. Dr K. He usually does my botox in my back and neck. So I came prepared with my information, which is like a book at this point. He agreed to do the injections at the exact places that the ENT suggested. He is so down to earth and understanding.
But here is the interesting part...
I told him how my surgery has not really helped me, not my hands/arms/head pain. He had said before surgery that he did not think it would help me pain wise but maybe my arms and hands.
So he tells me that he has had surgery for carpel tunnel - TWICE in one hand. He said that the first time he has relief for a few days, and then it was gone. That the second time he saw a different specialist, and did the EMG and decided to have surgery again. He said that it has not helped him. Here he is a neurologist, and his hand is has the tingling/pain and issues, and this is his area of expertise! I knew about carpel tunnel because another Neurologist had tested me years ago when I began this journey. I mentioned the Neurologists name, and he said he knows him, and that he is now on their team. I just had to laugh.
Knowing what I do about the EMG test and how I was always getting results that were "ok" but my hands and arms are hurting and tingling and spasming, and that other KFS patients have the same results... my jaw was on the floor.
I said "So, what gives?" I told him how after surgery I told my surgeon I felt better in my hands. But that has passed. He said he had the same thing. He said that he truly thinks some of it is the anesthetic affects... you feel ok because it is medicated at that point. He said he now refuses EMG's, that the test is not detecting all of the nerve pathways. This is what I have come to believe, but to hear it from him... such validation. So, here is a skilled neurologist who is having the same issues as we are, first hand, excuse the pun! So he gets it! He sees the flaws in the testing and treatment. Mind you this is all being discussed as I am getting injections of botox in painful muscles using an EMG. Ha!
He asks me "So, how are you?" I was not sure what he meant, so I said "Mentally?" He said "Yeah, you just had this big surgery and here you are in the same place!" I said "Well, I have a choice, I can lay down on the couch forever and take meds that make me wacked out with side effects, and do nothing, or I can keep searching. I have at least 40 more years and this is not acceptable to me." He laughed, but he got it.
I told him how I had just called another Dr in Maryland and sent another package of my CD's in the mail this week on Monday, with my records and information. He wondered if I get positive responses when I call like that. He knows I have been doing this for over 4 years. I said sometimes yes and sometimes no. I think he was surprised by my level of persistence. He told me that nobody locally is going to know what to do with my cranial cervical junction.
Then I told him, I guess I never have, about the Klippel-Feil Syndrome Alliance and the FB page. He asked how many people were following. I told him 2300. He was shocked. He was really amazed. He repeated it a few times. I told him how people's Dr's look up KFS and somehow find my name and contact me. Again he was shocked. I asked him to take a look at the page. Told him how there are articles and notes that myself and others have found and collected.
As I left I said "Well, we are in the failed surgery club!" see you soon!
I left the appointment sore from the injections, on my way back to work, but also feeling good. Feeling heard and validated. Feeling like there WAS good happening here along the way. The impact matters, the learning and understanding matters. Telling people matters.
So that's it. Not sure what the point was, or what that key I found means, but when I look at it, I feel it is about all that is to come, yet to unfold and be discovered for the greater good.
