Another Step Forward: Treating May-Thurner Syndrome

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In the ongoing saga of my body’s quirks, I’ve got another diagnosis to share: May-Thurner Syndrome . If you’ve never heard of it, you’re not alone—it’s another rare one to add to the list. Essentially, it’s a condition where the left iliac vein is compressed by the right iliac artery, which can lead to poor blood flow and all sorts of fun (read: frustrating) symptoms. My vein is 83% compressed, though my body has created collateral veins to help bypass. You'd think this new highway system would be sufficient, but I guess it's not. I discovered I had May-Thurner Syndrome during a venogram I underwent at UW Health in August 2024. Going into my MALS surgery, I knew there was a potential that MTS would also need to be addressed. But I was optimistic, hoping that MALS would alleviate several of my symptoms. As it turns out, MALS was just one piece of a much bigger puzzle. The cramping, pain, fatigue, and dysautonomia have continued to wear me down, even post-surgery. Some days, I fe...

Dental Cavitations: Surgery #Two

Here we are again. At 11am on Thursday, December 28th I went in for round two of cavitation surgery. This time, just one wisdom tooth site on my upper jaw. If you're new here - see first post about Cavitations and then my first round of recovery.

Going in for surgery!

I’m wondering why nitrous oxide isn’t used more for pain control or calming of patients. It’s honestly quite magical. But just think if you’re excruciating pain and you have to wait until pain meds kick in or if you’re having a panic attack. This is instant relaxation and you just want to take a nice little nap. Under medical supervision for short periods of time of course ;)  They haven’t received the results back yet on my tissue sample from the first surgery. This is a bit of a bummer, but I’m guessing the holidays have slowed things a bit. She checked my sites on the right side and said they’re healing very well and to keep doing what I’m doing. I think I flinched more when she poked at the right side than when she injected the numbing agent on my left.

Visual of the PRF - my blood is at the bottom, what separates at the top is what they use to fill the hole.



The left side went quick since there was just one. And I asked about the fracking, which is apparently a tool that blasts out the bacteria that she can’t get to. I also determined that even though it’s a short period of time it’s quite aggressive and shouldn’t be surprising that my head and neck hurt so much after. This time I was able to get my vitamin C IV right after at the place down the hall. This actually did help clear my oncoming headache. I was so beyond exhausted this time around. I honestly started the day exhausted despite the good sleep I had. I’m sure I was tired last time but I don’t remember it being quite so, “I could fall asleep anywhere” type tired. So I slept most of the way home and then crashed for another 2+ hours when I got home. I brought ice packs with this time so that I could start that process immediately. Maybe I'll avoid chipmunk face!

After my wonderful nap I hit my emotional slump. Though since my kids aren't home, it was nice to just be. My mom was my chauffer and is my caretaker while they're away. I'm sure I could take care of myself just fine, but I can understand being a mom myself how it would feel good to be here. I found a movie on Amazon Prime to watch called 'A Good Person'. I'm not sure if it's actually really sad or if I'm just that sensitive at the moment. I cried through most of it. I think this is good though. Just get all those emotions out. I'll be keeping this in mind for any future surgeries or illnesses. Just watch some sad movies so I don't bottle it all up. I made it until 9pm and am now off to bed again!

Friday - 12/29/23 - 24 Hours

I made it through the night without needing more ibuprofen or Tylenol. I got up to use the bathroom, but fell right back asleep after. I wandered to the kitchen a bit before 7am and made a piece of toast. Thankfully my jaw isn't stiff or swollen yet, so I'm taking advantage. I'm still just so exhausted and my whole body just hurts. So even though I just want to sleep I'm having a hard time since I'm just in pain all over. And shockingly it's not my jaw that's screaming at me the most. 

Still feeling waves of emotion and feeling down. I think the culmination of the whole year is hitting me and I'm just sitting with it. Had a nice little meltdown about medical expenses and all the medical expenses yet to come. Feels like we'll never catch up.

Saturday - 12/30/23 - 48 Hours

Last night I went and floated in a salt water float tank. It's been a long time since I've done it. Since I have a lot of upper body pain going on it was pretty painful for awhile until some of it released a bit. If you've never floated before this will probably not make sense. All of the salt in the water allows you to just float without effort. You become weightless, but wherever I'm experiencing aches and pains it tends to heighten at first until my muscles can relax. This is why it's recommended to do at least 60-90 minutes. Frankly, I would have needed to probably be in there for longer than that for it to fully do it's job. But I just didn't have the patience for it. It takes practice.

Once I got home I finished a book. I was honestly quite proud of that. I have not read nearly as much this past year. My brain just hasn't been able to focus. I managed to sleep through night which was also a win. Last time around I'd always wake up in the middle of the night in pain. I've been able to manage so much better this time around with some ibuprofen or Tylenol, so far anyway. The downfall was that when I woke up this morning my head just felt so heavy, like an underwater feeling. I managed to get some water in my ears last night because I didn't put my ear plugs in right away. And then it just stayed that way. So lots of  ear pain. 

Went to see my friend for some cupping and acupressure. Felt so good!

Didn't really have much for visible swelling this time around.

Saturday Evening

Took nap. Made it to the couch. More pain. Slight throbbing. Headache. So tired. Don’t want to move. New book. Movie.

Sunday - 12/31/23 - 72 Hours

Head feels like it's in a vice grip. Just lots of pressure. The swelling isn't noticeable but I can feel it at the back of my top jaw over to my sinus cavity, up to my forehead, and back to my ear. Both of my ears still feel quite muffled so we did some ear candling to get some of the wax out. Some improvement with hearing but didn't relieve pressure like I had hoped. Was up and about for a little bit cleaning piles on my desk.

Using the Bemer on my face to hopefully help with the cold and head pressure.

Just taking glamour shots

Sunday Evening

After I worked on my room for a bit I took a hot bath and a nap. Once I got up and moving a bit I felt a lot better. I was able to get my ears cleared out. Now everything was SO LOUD! Just in time for the kids to get home! So it was a very drastic change going from muffled ears and sharing a quiet house with one other adult to a full house with three children and Ben. Ben, my patient other half, who probably wanted to drop them off and go take time for himself. haha  He did not do that though. I made sure to tell him how much I appreciate him.

They're just so cute. Heart them <3

Monday - 1/1/24 - Day 5

Bleh. That describes most of the day.

I got outside for a walk though!

Tuesday - 1/2/24 - Day 6

Sometimes the pain is so all consuming. Not always in the ways you expect it, but a perfect storm combining various sources that encapsulate you. You don't know how to get out. And sometimes you aren't meant to. You just have to wait it out. That type of patience isn't often talked about. I've had to endure a lot of it. I think after awhile it reshapes you a bit. As we all know, the only constant is change. The storm looks and feels different every time, but I have to trust that it will dissipate. It's usually never on the timeline I want though. But remembering this helps me so much. It doesn't always occur to me at first, but eventually it dawns on me that I do know the pattern. I just need time and space and my head will wrap around whatever it is and come out on the other side. There's no easy route or a rush button. But the clarity and strength will come. I think where it gets messy is that there's often a form of grief that comes with events, even the ones you least expect. And what we know about grief is that it comes in many forms and different emotions. It also ebbs at flows and isn't linear. You might feel free in the morning, but low in the afternoon. It's just how it is. This is how this recovery has been. It hasn't just been my jaw and all my other physical ailments, but a mental battle too. Today brought a little bit more clarity and freedom for my mind. 

My right upper cavitation seems to be fully healed now. It's not irritated by food or pressure, the gum feels smooth and healthy. So one down! It took four full weeks. The lower right cavitation and my lower jaw line still need more time as they aren't quite there yet.

I did manage to work a few hours today from home doing some simple tasks that needed to get done. Baby steps! Also got in a walk!

Wednesday - 1/3/24 - Day 7

My goal today was to get logged online by 9am for our weekly standup meeting. I managed that and had my 1:1 with my supervisor which also went well. So many things to get ready for the year! By the time we finished I had to get to the clinic for my pre-op physical (for my celiac plexus block procedure). It was quite the ordeal at the clinic. Things were running behind so I had to wait quite awhile. And then when I did there was a lot to go over since a large packet of lab orders was sent up from Oklahoma. By large I mean it was at least 20 pages. We worked through all of that and got labs ordered, with a few question marks on some. I made my way downstairs to get the blood work taken care of. There was a question on what was wanted for one of them so I had to wait for them to connect with the Oklahoma clinic. But at the end of it they decided to just take some extra blood and they'd get it figured out. Part way through this I realized I would not be making it back home in time for my meeting. I did not anticipate I would be at the clinic for more than two hours. It was almost three by the time I left and I didn't even make my way to patient services because I was so exhausted and as stated, late for a meeting. Basically what felt like had promise to be a somewhat productive work day ended up falling flat because I didn't get much time between meetings and time at the clinic. I was so beyond wiped out after it all. Frankly, I wanted to fall into a puddle and cry. Just so much to coordinate and fit in. My attention is so divided between multiple things and all I really want to do is rest because my body hurts and doesn't want to do any of it. The good news is that I had a good chat with one of my besties which helped me unload a bit and clear my head.

Some of my blood tests came back. Most were fine, but my folate, AST, and bld urea nitrogen are all low. Explains a lot of my symptoms and also not surprising in some ways with everything going on. I'll be curious to know more once I talk to my doctor. I suspect my body is having a hard time absorbing nutrients from the food I do eat. I have been able to intake more food lately and at least maintain my weight. I eat every few hours most days. Not always a lot, but I make sure I'm getting protein and a variety of other nutrients. I already take quite a few supplements, so I don't think that's the answer. I decided to make a protein shake with some greens to see if that will help. And keep up with that each day. I'm just not a protein shake person. But it seems futile at this point. I'd add in more nutrient IVs if I could, but they're so expensive.

Thursday - 1/4/2024 - Day 8

I set my alarm this morning. And I actually got out of bed and showered after the alarm went off. I proceeded through my morning routine to get myself to the office. By the time my family left I knew my body was not having a good day. But I was determined to go to the office for our company-wide annual meeting. To try to be normal and see my co-workers. It wasn't easy, but I got through it. I did make my protein shake this morning. Go me! It doesn't sound as gross in the morning, so I think that's when I need to do it. 

My nerves are just on fire lately so my whole body is just mad. And then my heart starts pounding for no reason while sitting or even lying down. It's hard to not think about it. After lunch I came home and just laid in bed. I never fully fell asleep but I also just couldn't move. So it was some rest at least. I willed myself out of my bed before the kids got home from school, grabbed some coffee and my laptop. It was time to finish the appointment scheduling that needed to get done. Thankfully Mankato Clinic was able to do what I needed so I don't have to travel to the Cities. I have three big tests to do and then can travel to OKC to do the other three. I have it set up so it's one each week. That seems doable. Just getting this piece done helps. I accomplished something. Seems small, but it's big to me. I had hopes of working more this afternoon, but clearly that didn't take off. Tomorrow is a new day to try again.

Friday - 1/5/2024 - Day 9

I had a very hard time falling asleep last night. The sad part was that my body had calmed down last night and I felt so much better. Once I got to sleep I woke up a few hours later from jaw pain :(  I had been sleeping so good this last week so it was a bummer. I was just dragging! I took some extra time to rest then got myself to my desk to work. Then I could feel a migraine creeping in. Weee!!! It sounds like I'm making this all up to be dramatic, I swear I'm not. I gave up working to baby my migraine with lots of heat and ice. I haven't talked a ton about my actual cavitation pain much. It has been more bothersome the past few days than it was the first. I've had to keep up more with pain management. It's tolerable though. Still so much better than the right side was. With it being on the top I haven't had too many issues with food. I just have to be cautious and eat more on my right side. Thankfully the lower right isn't as irritable now that it's been another week. I am hoping in a few more days it will be all good along with my lower jaw line.

Migraine life


I'm trying to keep my chin up! This is my season of leaning on my support people. I'm not even going to pretend I am doing this on my own. So if you're in my friend circle and I seem distant it's not my intention. It's just my season of leaning. I've accepted that it's what I need to get through this. So for the ones that keep showing up and being my post, I freaking love you to pieces! It's not possible to express that enough! This past year has taken a toll on all of us for many reasons. I hate that I'm one of the reasons, but it's the reality. My take home pay in 2023 has been just enough to cover our medical expenses (yes, I was the bulk of it, but 3 kids added in some too). With being on unpaid maternity leave the beginning of the year and missing work most of August unpaid and then two surgeries in December, it's been hard to say the least. Things could be so much worse though. Ben and I are fortunate to have good employers. I'm beyond appreciative for the flexibility I've been able to have with my job. If anyone feels the desire to help, I will always take extra words of encouragement, a card in the mail, money for gas & accommodations in Oklahoma or the upcoming bills that will be flowing in from all these tests and procedures, time with my kids - winter can be hard, thankfully the weather has been mild thus far - but any entertainment for them is welcome, easy meals I can make them, etc. I will even take a volunteer to be an Ashlee Support Coordinator. Beyond that, support for Ben. I know he'll hate me calling him out. But I wish I could afford him more time to do things too. My mom has been here helping SO much, as have Ben's parents! We'd be floundering a bit without them. Always willing to jump in and be here with the kids so that Ben can be with me at my appointments. Or my mama taking care of me so Ben can be with the kids. It's really has taken a village. Before life got a bit messier, Ben did book a vacation for him and I at the end of January. Last year was our 15th wedding anniversary, but with just having Otis and all the events that came with that, we pushed off doing a trip. I can't decide if now seems even less ideal or more ideal. I think we both desperately need it, but I'm also feeling guilty about it and I'm not sure why. I should be able to have time for joy too. This will be our last hurrah before my big surgery, so as always, we'll make the best of it!

I don't remember what day it was, but I did dance a bit in the living room with the kids. They thought it was the best thing ever and apparently told their friends the next day. That gave me a good laugh. I'm glad I can give them snippets of normalcy to hang onto.

Tomorrow is my sweet girl's birthday! Sweet with a side of sass that will get her places in this life. She has been my little empath these past months, checking in on me every day. "How are you doing, mama?" always followed by a hug. <3


Love to you all! I hope your year is starting off on the right foot and if it's not, try the left.

<3 Ash


Upcoming Appts

Jan 9 - Celiac Plexus Block at United Hospital & a call with Dr. Parsons late afternoon (he is the other vascular surgeon from Oklahoma that will be tag-teaming my care)

Jan 13 - My birthday!

Jan 19 - Mesenteric Ultrasound AND my wedding anniversary ;)

Jan 23 - Upper GI Series - Barium Swallow

Jan 24 - vaca!


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Comments

  1. I love you!! I know your blog is helping others and will help more in the future that have to navigate a similar journey. When you feel alone, like I am the only one going through this difficult, confusing and crazy journey … there is always hope and encouragement when you find another person out there!!

    May God wrap His ever loving arms around you and carry you to the next step of HIs plan!!!

    Love and prayers always. Mom.

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