I'll just go ahead and say it- I'm not good at this. This blogging thing. Writing has never been my forte and remains that way. But I will go ahead and try to give you an update on my CCSVI surgery, the following treatment, and where I am now.
So I had my CCSVI surgery on February 27. We flew into Atlanta the day before and an amazing cousin picked us up at the airport and fed us some AMAZING tomato soup! Kudos to you Katie, you are an amazing cook!! And Jason, you make a mean cheese sandwich. :) And then we just crashed.
The next morning they were so kind as to take us to the Center where I had the surgery, I had to be there at 7:20am. If you know anything about insomnia, Lyme, and mornings....it was tough! And I wasn't allowed to take any meds. Not cool.
They very quickly took us back, I got changed and about an hour later, after all the legal stuff, exam, question, etc, I was on the operating table. They were great!
Let's do this!
And my nurse, after seeing that I was allergic to tegaderm, asked me if my port dressing was an IV 3000 (1 hand)? I was speechless! Yes, YES, YES! It is! But how do you know about them?? He remembered using them in the hospital. He is the first nurse that I have come across that had ever even heard of them! It totally made my day! :)
Surgery was fine, I asked to have as little sedation as possible, so I had a Xanax and a tiny bit of Versed....which has very, very little effect on me. There were a few times of pain, but nothing I couldn't handle, by all means! However, afterwards was another story!
Hooray! I made it!!
After surgery they make you lay completely flat for 4 hours and you aren't allowed to moved the leg that they used the vein in. But I was in so much pain it was all I could do to not lay there and just cry like a baby.
I have a high arch in my back- when I lay flat on the floor, you can put your arm clear under my back. And the beds were just like ER hospital beds...a tiny foam mattress....nothing really. I asked for pain meds and they let me take one of my Vicodin...but Vicodin doesn't really help me very much at all really, but it did manage to relax me enough to be able to sleep for about an hour....to escape.
You can only imagine the relief when I was allowed to get up and stand....never felt better!
We were quickly discharged and taxied to our hotel where I was able to lay down, take my meds and try to relax. However my body was just so upset by then....I had a hard time!
The next two days were filled with treatments, sleep, and a lot of ugly symptoms. But we were able to just stay in our hotel and not worry about too much!
On Thursday after my surgery on Wednesday a Lymie friend, whom I had yet to meet, but we had groan close...phone calls, texting late...or early ;) Just talking about normal things, things that every other 23 year old talks about. Wait, this isn't making sense.
Anyway, my friend Andrea drove nearly 4 hours to come meet me! Well, her mom and little brother, who rarely leaves her side, as he is her Lyme buddy, were with her as well. But I felt SO honored that they would drive so so far only to visit for about 2 hours and then go back home. Wow. Thank you Andrea! You really did brighten my day and meeting you was amazing, it felt like I had always known you! <3
We both have medi-ports and were accessed AND we both have medical bracelets....we are twins! :)
(Yes, I am aware that I look like a scarecrow....I was pretty sick and unable to get out of bed to fix it. Its life. Especially the life of a Lymie!)
As far as flying....you know how you always manage to get a seat in row 20 or something? Well, we always ask for something closer, so that I don't have to walk so far. Well, this time, we got First Class BOTH ways, coming and going. We couldn't believe it! It was so nice...nicer seating, less walking, and better service.
Oh yes, on the way home, our flight out was so early that I could only do one of my IVs in the hotel before we left, leaving one to be done in the airport...this is where Command hooks come in so handy!!
And since it didn't finish dripping, even after speeding it up, we had to finish it on the plane. I was worried how it would work, with the pressure and all that, but it actually worked out great. We were first to board, we clipped in in the overhead compartment and let it S.L.O.W.L.Y drip. I was sure it would never end! However the plane took longer to take off than expected and it was finished by the time we left. It worked out great!
Ok, this is getting so long that if you have made it to here, you are a warrior!
The effects of the surgery?
Right away I noticed that the right side of my face was tight, and it remains that way...I'll be discussing that with my LLMD next week.
Also, I am a little bit more steady on my feet. My sister who works with me a lot can see it, but my mom and I'm sure others have a hard time seeing it. But its there. I still can't walk right, by any means, but its just a little bit better, wish is valuable!! :)
Also, I'm wondering if possibly it could be helping my head pain....there are times that I have a bit of a break in my headaches and I wonder if this may progress more...?? Who knows!
Other than that, The treatment after surgery was brutal, but for now I am off, and I see Dr. Jemsek next week, so we will see what he has to say then.
And when I got home, I had a puppy that missed me!
Until next time,
Lynnelle
(This really is so long....this is why I hate writing. I don't know what to write and what to leave out. I know some people want to know every detail, and I'm SURE others would be happy for me to just say that I am OK.)
Great post Lynnelle! You did just great in describing things and I'm anxious to see what Dr. Jemsek has to say!
ReplyDeleteTotally loved seeing you! Hang in there!
-andrea
Hi Lynnelle, my name is Kaytlin. I'm also a patient of Dr. J and just had the CCSVI surgery last week in Atlanta. I was searching online for information about the severe pain in my head and neck post surgery and came across your blog. I hate knowing other girls who are going through what I am going through because I wouldn't wish this on anyone but it is nice to know there are others who truly understand. I'd love to get to know you more! If you want befriend me on Facebook my full name is Kaytlin Posadny and i think my profile picture is me in my hospital gown, mask, and cap. If you would rather e-mail me my address is kaytlinposadny@Gmail.com and either way I can give you my phone number to text. I just don't want to leave my number on here. :-) well I hope you message or friend me so we can become friends. All of us need as many people supporting and encouraging us as possible. -Kaytlin
ReplyDeleteGood to hear from you Lynnelle. I've been praying for you and will keep you in my prayers too. Love you and hang in there.
ReplyDeleteCan you give an update? I'm 4 years into treatment and still sick!!
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