I wish

...a lot of things in my life. One of them is that I wish I kept up with this blog more. I wish I had wonderful, witty and motivating things to say. In real life, I’m actually very motivating. I am a personal trainer and running coach and I help people feel good about themselves.

Unfortunately I do not feel very good about myself lately. It’s not a “I hate myself thing” at all. I don’t hate myself thing. I’ve just not felt good for a long time. It’s the head, but it’s more than the head.

In 2003 I had a Whipple Procedure to remove a cancerous (pre-cancerous, it was in-situ) tumor from my pancreas. Since then I’ve had on again off again digestive issues that have been annoying and painful but manageable. I realize looking back that it’s been getting worse over the last two years with a lot of issues that are embarrassing that people who deal with these kinds of issues will relate to. I’ve struggled to run long distances with severe stomach cramps and diarrhea. I’ve had problems fueling on my long runs. Stuff I used to be able to eat without issue suddenly causes problems.

In mid-May or so I had an attack, as I do, of stomach issues...bloating, cramping, stomach pain, nausea (two different types of pain), diarrhea, loss of appetite. When I get this, every time I eat I’ll feel better but then within five minutes I’ll start having symptoms. Usually these go away within 2-3 days but this time it didn’t. At first it was annoying, but I could ignore it. But as days turned into weeks and weeks into months it got worse and worse. I started losing weight and not wanting to eat. I went from five meals a day (small meals) to three to two to one.

In August I finally had a colonoscopy and endoscopy. I was hoping that they’d find something and if not, at least having the procedure would “reset” things (like a cleanse, although I do not necessarily believe in them) and I’d feel better. Not only did they not find anything at all, but it didn’t reset anything. In fact, it’s only been worse.

I’ve lost 12 pounds since May. My exercise has gone from daily to none because I’m so weak. Okay, I am still trying to get something in if I can. I did kayak today but was sad when, after a single mile I had to turn back because I was exhausted.

At first I was handling it with marijuana, which helps the symptoms quite a bit. But they’ve gotten to the point where it soothes them but doesn’t take them away. It helps with appetite but I’m starting to get afraid of food because even if it doesn’t hurt now it will tomorrow.

I have started a low FODMAP diet. FODMAPs are short chained carbohydrates that most people don’t absorb well, and some don’t absorb at all. If you don’t absorb them, they ferment in your large intestine and cause symptoms of IBS and other intestinal issues. I am actually starting to feel better but it feels like 2 steps forward 2 steps back and I’m not sure if I’m doing it right. I ate something yesterday or the day before that reacted with me, so I’ve had two no fun days. However, the day before yesterday I felt good enough to go for a run and that was AWESOME!

Other things this summer...one of my dogs tried to kill another dog. We had to rehome the killer Dog. Ugh. I feel like one of those people who always has a sad story to tell, but the fact is, August has sucked. Not “My house is underwater in Houston” sucks, but “It’s not been the best month” sucks. I miss Pogie so much. I don’t blame her. She’s a dog and for some reason she just was set off by Lucy and I blame myself. We did the right thing by rehoming her but I love her and I miss her, and even typing this tears me up. Lucy is fine. She is going to live and acts like nothing ever happened. She has a huge scar from her surgery, and we have an empty bank account (literally), but payday is Thursday and it’s only money. Money can’t buy you love, but it can pay to save your dog’s life and puppy kisses are like love so there.

We did make the most of not having money, though. We’ve had an awesome month despite that issue and money has come out of the woodwork when we’ve needed it, Praise the Lord.

Head has been better in August than in July, when the first from BC were really impacting it. The stomach and intestinal cramps can send it soaring, but now that they’re a little better they don’t seem to be setting it off as bad.

By the way, the second procedure did not work at all on my brain. It was very disappointing. So for now, I’m not going to do it again. There is a new supplement I will be taking once payday comes called Bosswellia and there is also some new pain thing she wants me to try. It has a ton of good reviews and I feel like if it doesn’t work for me, it probably will for Roy! So that’s hopeful for him. There is also something that is not yet FDA approved for my brain pain but it is for Cluster Headaches. I tried it in the office and it did give me relief. Dr. M feels it will be available within six months to a year.

So there are some hopeful things on the horizon.

Radio Ablation Sphenopalatine Ganglion Block, My Experience

So I had the procedure today and if we isolate it only to the actual procedure, IT SUCKED! 

I like to share my medical procedures. No, not because I'm sick AF, but because after I had my Subarachnoid Hemorrhage I couldn't find any information on what I was going through. I could find a lot of information on what had just happened to me, and I had a care sheet and a sell by date from the doctor. But that was it. (Sell by date was when I thought All This Will Be Done and I Shall Be Whole Again!) So when I started feeling like water was being poured over my brain, and it hurt to be hugged, and I couldn't remember how to "salad" so I started crying, and I could run but walking across the room I'd fall down, and my memory was so bad I had to have my life run by a bitch called Siri...I felt left alone with nobody to talk to!! When I did find a resource here or there that said, "what you are feeling is normal after an SAH" I would cry tears of relief.

So that being said...

Here is my experience today with my first High Frequency Radio Ablation Sphenopalatine Ganglion Nerve Block (that's a mouthful in itself). 

Why: SAH in 2012 and I have had a headache every moment since then with the exception of when I have had SPG blocks. The Lidocaine blocks worked, but not as long as it did for most people. However it did tell us we were in the right spot.

The only other time I'm painfree for any period of time (besides my dreams) is when I run marathons, usually about 90 minutes into the run it fades away and it'll last until the end if I'm fast (which isn't often), or for 2.5-3 hours and then fade back in.

I arrived at the UW Pain Clinic at 8:00 (on time, thanks to Jacquie being early to pick me up, and giving up her coffee). They checked me in, did all the vitals, asked all the questions, commented on the tattoos, I changed into a gown, but was able to keep my bra, pants, and even shoes and socks on.

The Nurse started an IV. I was given Versed for sedation. I do believe some use Valium, but I had a Valium "incident" in the hospital after a surgery, so they marked it an allergy.

My doctor came in and explained the procedure fully. He is very clear. I appreciate that. He told me there are a lot of nerves in that area so before they could give me anesthesia, they would have to find the right nerve and it would be uncomfortable. He would do this by sending a pulse down each nerve and wherever I felt a tingling would determine which nerve they were hitting. They would need to have me with all of my nerves fully awake to be able to feel all sensations. Once I felt it in my nose, close to the bridge, then they would have the right spot. At that point I would get anesthesia (general, so I'd be awake) and they would send a high frequency radio wave down through the probe (or another, I'm not sure) and it would damage the nerve. Over the next 2-4 weeks the nerve should die and regrow.  

I went into the procedure room and got up onto a narrow table. It has to be narrow so the CT Orbiter can orbit your head during the procedure. A pillow was under my shoulders so my head was well back (so be aware, if you have neck pain. Another pillow was under my knees, maybe for comfort? If so, it was the only bit of it. 

An oxygen cannula was placed in my nose. For some reason all I could think was, "It feels and smells like Barbie just stuffed her feet up my nose" and then I wanted to giggle. I hadn't even had the Versed yet!! Yesterday WAS 4/20, but still. I was completely sober!

The doctor came in and positioned my head with an x-ray, then they ran a test CT scan. Once it was clarified that I was properly positioned my head was taped down so it wouldn't move during the procedure.

Dr. Chu washed my face very well, four times with an alcohol dish scrubber. Then he palpated all up and down the Zygomatic Arch and made me a marked woman along the arch. They checked placement one more time.

That's when the fun began. So from what I understand, since I only experienced the sensations and couldn't see what was happening, a hollow needle was fed through the infrazygomatic arch, which is a tiny little hole. Mine is 17 mm in diameter. Most necklaces are 18 mm in diameter, so that gives you some insight into the size. They do this slowly and advance it towards the right lateral (in my case) sphenopalatine ganglion nerve bundle. (That isn't the needle type, it's part of a machine, I think.) It was sort of painful, but not horrible. 

Once it is in, the probe is sent through. That's when, for me, it got painful. Now I have a very VERY high tolerance to pain, so I was able to keep still. It was a challenge. I can't really tell how long it took, but it felt like it took a long time to find the right nerve. I know that we went back and forth on a sort of "can you hear me now" game, except it was "where do you feel that?" "In my cheek" Okay now it's in the roof of my mouth, roof of my mouth, closer to nose" etc. Finally after what felt like forever, and more than a few silent tears, my nose really tingled. It was close to the top, but it wasn't the tippy top (between brows) so I hope it was right. Dr. Chu said it was according to the CT. 

I think the pain was maybe from the moving of the tube/needle around in the infrazygomaticarch. It's SO small and it still feels bruised in that area. When the charge was put through, it would stop hurting and it would just make my face feel tingly. I think the pain stopping was because the tube wasn't moving any more. Plus it felt like the same kind of pain as when I had the same procedure but with Lidocaine, only it lasted a lot longer and happened more than once. Then after the pain stopped, the tingling would start.

After proper location was determined, I was given anesthesia; I think Fentanyl. The pain was immediately gone, but I did feel some double vision come on for a few minutes. Fortunately it cleared. I had that for awhile after one procedure and it is NOT fun. Just pressure after the the pain left, and shortly after that he was done. 

Now I have a feeling at some  point I fell asleep because the radiologist said something. I don't know when, but I hope it wasn't when I was needed because I actually can fall asleep while in pain as a coping mechanism. However, it felt like once they did the radio frequency part it was over. I might have dozed, though. 

After they gave me time to sort of recovery, but in the same room and only a few minutes. They took the Barbie feet out of my nose, and untaped my head. They took all the probes out and disconnected the BP cuff and pulsoxometer. They tried to help me down, but I thought I was okay and almost fell. Ha! Then they wheeled me to the recovery area, which is just a chair. I had my BP taken again and it was 80 over 36, which freaked the nurse out. She had me sit back and uncross my legs and then it went up to 100/56 which is more normal for me. At one point the heart rate alarm kept going off too but Jacquie and I had told the nurse anesthesiologist that we were marathoners, so she just let them know not to be concerned. Love that low heart rate!

So how do I feel now? Well, I've been typing this for over seven hours, but it hasn't taken this long. My fave really hurt a lot, but my head does feel better. At least right now it does. However, the other side of my head isn't very bad at all, so it might just be because we've had a nice day and tomorrow is going to be a nice day...or because I medicated as soon as I got home, and have remained thus so all afternoon. Or both. Or all. Or either. Or none.

My face is swollen on my right side and it hurts to touch. My teeth hurt because it really felt like they were being pushed out (my molars) from the inside out. It hurts to eat hard food on that side, but it isn't like I had to eat pudding. I had leftover pot roast, potatoes, and carrots for dinner but I did chew the meat on my left side. I was super tired when I got home, but I took two dogs for a 1.5 mile walk and felt a little better. I never did take a nap. Now I had HOPED to go for a run, but nope. Head hurt too much. So nothing impressive about walking the dogs to the park. 

So that was my day. It kind of sucked, but even if it only works for six months it will be worth it. I hope it does. I just want my old life back.