Thankfully the last 2 days have been so much better. Yesterday the pain was minimal and no nausea and today I have had pain and been very tired but no nausea.
So here is the story and where I am at now. Hopefully it won’t be too long. So about 4 weeks ago I had a very bad migraine. It caused me a lot of grief but I associated with tight muscles. Being a migraine sufferer I knew by week 3 that something wasn’t right. Muscle should have let up by then. The nerve pain going into my head and face also should have gone away. So I complained to my BMT doc and she sent me for an x-ray. Not sure what she was looking for in an X-ray but nothing was found. I did have a few days where pain wasn’t as intense but by the forth week it was worse. I think the reason for not sending me for a ct scan was because they did one back in September for a different pain and saw nothing. They don’t let anything go around here . Could be an infection or something related to comprised immune system. No risks.
So Friday I was puking again from the pain. I got to the clinic and got my own room so no one had to listen to me throw up. My mom told the doc something is not right we need to figure this out. They got pain meds started and anti nausea ( which didn’t help) before we talked about what to do.
The resident doc , called the attending doc and decided we need to admit me first off so I can get pain management and to get this figured out. Back in the hospital I went . Of course I had nothing with me. I should just have an emergency bag with me .
I basically rested the rest of the day and threw up and was completely out of it from being so drugged. There was a ct scan ordered for the next day. There was also a skin biopsy to be done checking for GVHD. Next day a neurologist resident came to see me. We talked about my pain and she decided to add a vascular test to my ct scan. Another attending came to see me telling me all stuff I didn’t want to hear. She wanted me to have another lumbar puncture and I was refusing. No way am I getting another of those. Let’s add a spinal headache to the one I already have, no thanks.
I went down for ct thinking they wouldn’t find anything because I had just had one and nothing was found. I wasn’t expecting to see a doc till the next day but a whole team of neurologists came late afternoon on Tuesday. It was like Grey’s anatomy. They didn’t have the full report but ct informed them that I have a tear in one of the arteries. Sounds freaky , right? They compared it to my other ct in September and it was not there in September.They right away could understand the pain I was/ am in. At this point that was the only info given. I was being turned over to stroke neurology. What often happens is the blood ends up clotting and going to the brain. However since I am on a blood thinner I didn’t get a clot , just a tear and pooling of blood. I will find a pic so you get an idea of what this looks like.
The only difference in this picture is I had blood pooled between layers of artery and this pic shows a clot. I believe my tear is in the cervical artery at the base of my skull on the left side. I’m thankful to God for sparing me a stroke. I am still at risk but it’s much lower.
Anyways, stroke neurology came to see me and I was informed that the tear was quite large. 😳 I’m not gonna lie, I was freaked out. She wanted me to go for an MRI which I kid you not was at 1am . They had to make sure I didn’t have a stroke and also check for vascularitis. Brain looks healthy though 😀
The treatment for this is pain management, high dose because I definitely need it, and time and blood thinners which I’m already on. It does mean I will be giving myself shots longer than anticipated. It can take 3-6 months to heal but I won’t necessarily have pain that whole time. So that pain managements great and all but here’s more bad news, because of the way my migraine med works with the blood vessels , I can no longer take them. So I basically was told I had to suffer migraines with no relief. Or at least that’s what it felt like. It’s the only thing that makes me function when I have a migraine. 😢 i am not aloud most over the counter meds like Advil so it’s tricky. I said we have to figure something out or I’m going to become a hermit with a ice pack in bed all the time. I have now been put on pregabalin. This med is used frequently for fibromyalgia or peripheral neuropathy ( which I have in my fingers but this could be from the dissection as well). It does cause weight gain though . 😕And at my request, I want to have a nerve block done. It works by injecting a numbing agent and steroids by the nerve.The docs never thought to do this but thought it was a great idea because my platelets are stable right now. Yay. This nerve block, if it works can last up to 3 months. Here’s the funny thing though, no one knows anyone in this hospital that does them. I was shocked. Now I have someone coming from GF Strong to come and talk to me about it but it will be after the weekend. This also means I probably won’t be home until closer to the end of next week. It’s so boring here but Aaron’s going to bring me stuff to do tomorrow. I am also waiting to find out the results of my skin biopsy.
If you are still reading this, thank you for taking the time. I maybe should have done this in 2 parts but I’m feeling ok right now and thought it’s a good time to blog. I think I will stop there. I hope everyone has a great weekend! Thanks for your prayers. I will leave you with a couple random pics.
I’m right over the hospital landing pad.