On Monday, I went to Portland, OR to see my latest NSG.
I had hoped to write more carefully a report for my readers here, but have been suffering so much from the trip that I have decided to just post a pasted copy of a letter I sent to my sister. So, here you go...
You remember Dr. R the last time I saw him? He was a bit curt with me....after just talking to me for 15 minutes total, he'd said that there was no surgery he could do to help me. But he promised to look at my imaging with his colleagues. There are quite a few NSGs in that big hospital/facility.
After that initial meet-and-greet, he then had me go have some xrays done of my neck in flexion and extension. Later, I got a copy of his report from my primary and learned that after seeing the xrays, Dr. R wrote that there IS movement in the C1 when I bend or extend my neck.
Next, I had the SPECT (cervical)... and a lumbar MRI with and without contrast.
As I might have mentioned before, I set myself up mentally to expect nothing. Was hopeful for nothing. I told myself the doctor would say the imaging showed I am fine, he'd say "Why are you here wasting my time?" and then I'd go home once again feeling there was nothing to be done to help me.
We had to wait 4 hours for him. This was because Dr. R was in the OR doing an emergency surgery.
We almost went home without seeing him. My husband was so patient! But at 4 hours, to me it felt like time to head home. Then, they brought me back into the exam room (we'd been there once before when they thought the NSG was on his way, but then he wasn't able to come right then so we went back out, down to the cafe, etc, for 2 hours more)...
He came in holding my 3 pg letter I'd faxed to him last Thursday, the one posted here before this post. And he was very straight-forward, very nice and kind. He said, "You need to have screws put into your C1 and C2. You've been waiting six years and it isn't going to get any better. It's time to just go ahead and fix it."
I was shocked! I asked him if he would also put a plate into the skull base (occiput), and he said he might, that they want me to have a new CT of the skull base area and, if necessary, they will add the plate. If they add the plate, this becomes a craniocervical fusion like I've been hoping to have all these years.
I asked him how many craniocervical fusions he's done and he said, "I do them every week. I did a C4 and 5 today!" and I said, "No, not a cervical fusion, a cranio-cervical fusion." And he said, "Well, they are not seen that often...but I do one about once a month." I thought that was plenty of experience and said so.
He said he might go down to C3 with the fusion. I asked if there was bone enough in the C1 to put screws to and he said the new CT would tell them that.
I didn't go have the CT right then as he suggested, it was late and I was in so much pain. I will go back in a couple of weeks to get that done (March 22). Need to wait for the work comp to approve it anyway.
I'm not jumping on the wagon yet. He knows that. I did that at TCI but not this time, I'm going to give this a lot of consideration. I like the surgeon, I like being closer to home (2.5 hours away). I like the hospital, too, it's very well-known here in the NW. Been around a long time. Dr. R said I'd be in the hosp. 2 to 3 days. He said that the fusion would help my neck pain and would help the electrical feeling on my scalp, but it wouldn't help the swallowing problems. It would not in any way help the below the waist symptoms.
He suggested maybe I'd want to try pain management and have a lumbar injection and see if that helps my pain below the waist. However, I have since remembered that I have arachnoiditis, and had that huge mass of arachnoid adhesions at the lumbar region when they opened me up for the detethering. Mine was due to trauma, but medical articles reveal that arachnoid adhesions are usually caused by interdural injections such as pain injections and lumbar punctures. I think I'll pass.
Oh, this was a big thing to me. He was showing me the scans and such, and had the normal mid-sagittal view of the head and neck that people with chiari use to judge their condition, and I noticed the cerebellar tonsils (not tonsils in the back of your mouth) are shrunken way up from where they were! Even from last June when I had the imaging done in NY.
I told him that, that they were way up from when I had the TC surgery and he said, "Maybe that surgery helped you then."
The big thing he showed me, and he was talking so offhandedly, like "No big deal, you must know this," but he had the pic of my C1 that I always show people the big break in it...and with the mouse cursor, he flew down to the bottom right part of the C1 and said, "There is another big non-union" (meaning break) and I said, "Really?
And he still acted like no big deal (I think they are trained that way so you don't get anxious). I have seen that big gap all along, but it was never pointed out to me. I thought it must be a view of a different vertebra or something that was covering up the back part of the C1 or something. So, now I know there are at least TWO big, non-union gaps in the C1.
I have a lot to think about, obviously. Dr. R said there is nothing he can see that can be done surgically for my TC area/below the waist symptoms. He can't see any dural ectasias, which doesn't surprise me since TCI supposedly fixed them. I got to ask him about dural ectasias and he says he's dealt with them in patients with connective tissue diseases, but he's never seen any as a result of trauma. I found online that they usually ARE indicative of a conn. tiss. disease, but it says they rarely can result from trauma.
I asked him if I could try Diamox for the DEs or whatever, and he said that would be up to pain mgmt.
At any rate, I felt overwhelmed in a good way. I felt validated and treated with honor and respect. Taken seriously. and also offered hope in the prospect of a surgery, which does make sense to me, and I even could imagine it could help the TC stuff, even tho Dr. R said absolutely no, he'd be very wrong to tell me there is even a possibility.
I might send my stuff to Dr. Menezes in Iowa who is supposed to be one of the #1 skull base experts in the country.
I felt dumbfounded going home through the crazy city traffic. It's been a long time since I have talked to a NSG and had one agree to do anything for me.
And I didn't hardly cry. Thank you Jesus!