How do I go?

In a word, slowly. Everyone else says I'm continuing to improve, but for me it is such a glacial pace that includes random setbacks in how I'm feeling. I'm having a LOT of headaches. Sadly that probably means my spinal fluid pressure is high. I will find out more about that hopefully when I go to New York in May for my 1 year checkup (!!!) Can't believe it is already coming up on a year. I'm super happy I did it. So many symptoms are gone (and still gone). So many are minimized. I'm having more sensory feelings...my thumbs have been burning along with other phantom bits...just something to add to the numbness in the sides of the arms & legs that barely show up on an EMG/NCS but render my arms and legs with almost no feeling on the outsides. And the pain in my neck & back of head is really high again. The muscles around the surgical site feel hard as a rock. I'm suspecting I'm no longer reacting to the flexeril. The pain clinic has been refusing for months to do trigger point injections that were ordered by TCI. I've been doing research and have set up to try acupuncture on the trigger points. Now they say they are ready to do trigger point injections. Feck. Well, I'm going to do acupuncture first now that I've gotten that under way. I've waited 4 months for them to decide they would do trigger point injections...what is one more month.

I've had to change from Kadian to MSContin cuz I can't afford the Kadian under the new Part D insurance HELL. They insist that they are exactly the same thing, but I'm feeling very different on them. With the MScontin I am feeling more like moving=pain and having more spasms & having a harder time with absorbing things I see or hear...not retaining things. Anyone have experience with changing laterally between meds?

Well, aren't I cranky today. Sorry. I've had a headache for 4 days straight and 7 out of the last 9 days. All very valsalva type headaches, but they don't go away. They are just there and get worse when I do any 'maneuvers'. I have a lot less tolerance for headaches after not having any for several months.

I should be going back to 2+ physical therapy a week next week. We were rationing while figuring out what the deal is with medicare and physical therapy this year and it basically is down to use up what you get and then appeal, so no point in rationing. My progress goes down a lot with less physical therapy.

I'm learning a lot about managing the Ehlers-Danlos though. I stumbled into an amazing physical therapist in San Francisco...Healthwell Physical Therapy...where the main therapist has a major focus on hypermobility and one of the other therapists actually had surgery for a Chiari Malformation. I've been going there since July (05) and feel like a learn something and make progress every appointment.

Physical therapy totally got my headache under control. Yea. She says that my spinal fluid rhythm gets totally out of whack. With cranio sacral therapy she basically stills my spinal fluid and then restarts the rhythm. Much better. I can't remember if I wrote before about cranio sacral therapy, but I was told after surgery I shouldn't do cranio sacral and I went along with it cuz the craniosacral therapist I had been seeing was pretty crappy and she was doing a lot of stuff right where the metal arms were going to go. But there is a lot more to cranio sacral therapy and it doesn't have to be based on the back of the head. It is helping me a lot at this point.

Let me close this rambling post with the fact that I am REALLY happy that I had surgery. For the frustrations I'm having (which are mostly because I am so much better) I am a lot better than I was a year ago!

1 comment:

Anonymous said...

Kriss, I have read about your medical adventures on your blog. I was hoping to gain additional information from you about the invasive cervical traction and fusion surgery you had. I am having both surgeries, along with a decompression surgery, next week and would love some advice. You sound like a strong person that has been taking all this very well. I hope you are having a pain free day, I sure know how those headaches feel, ouch! E-mail me at sheenalashomb@yahoo.com