If you read some of my previous posts, you know that several of us women who had connected on a Facebook support group page had grown close to each other. We found out we would be having surgery the same week! These were the ladies I was closest to and the odds of having surgery with them at the same time were so slim. We all felt like it was a miracle and that we were being put together for a divine purpose. We appropriately named ourselves "The January Cysters." Honestly, I think most of us were so excited that we were going to meet each other that we weren't as worried about surgery. At least I was! It made a hard situation actually, dare I say, fun! It was like we were having a Tarlov Cyst Surgery after party! Earline, or Mama E. as we call her, had surgery the same day that I did. Cindy, and the two Susan's had surgery the Monday and Tuesday before us. One Susan actually is from Tennessee, not far from where I grew up! What are the odds? VERY slim! We all stayed at the same hotel -
Homewood Suites, Dallas Medical Center. Many recovering patients stay there and I highly recommend it. They have full kitchens and serve dinner each night, which makes it easier. Ordering out for 10 days would cost a fortune. Also, when staying at any hotel near Pine Creek Medical Center,
don't forget to call and ask for their medical rate. You cannot get this rate online and it is typically significantly lower than the usual discounts.
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Ready for Surgery! |
I was the first patient to have surgery that Wednesday morning so I had to report to Pine Creek Medical Center for surgery prep at 5:30 am. They had me change into a gown, put a cap on my head, and put an IV needle in. Dr. Feigenbaum and his nurse Stephanie came by to see me and ask if I had any questions. I was not nervous at all. In fact, I was excited. I was so happy and excited to have surgery because I knew it would allow me to get my life back. They rolled me into the room. I saw the table, which is called a Wilson Frame. The table looks pretty weird. It definitely peeked my curiosity and I asked them, "How in the heck are you going to get me onto that thing!?" No sooner than I had asked that, they inserted the IV into my tube and I was off to la la land.
I awoke kind of groggy and they were wheeling me to my
room. I was still very numb and couldn't feel much. My lower back had pressure but that was all. My husband was there waiting for me. There were "boots" on my lower legs that inflated and deflated with air to prevent blood clots. A few minutes later, a short red-headed lady dressed in a red robe walked into my room using a walker. I immediately recognized her. It was Cindy!! I reached out to her and she held my hand. I was SO excited to finally meet my dear friend face to face. As a matter of fact, I got so excited that they made her leave because every time I spoke to her my heart rate went too high.
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Cindy and Susan A visiting me the afternoon after surgery |
Dr. Feigenbaum had gone to the waiting room and told my husband that everything went well. There were 4 cysts. He was actually able to squeeze the CSF fluid out of 3 of them and then just wrap them so they wouldn't return. One had to be cut, drained, packed, sutured and wrapped. I will explain the details of the surgery in another post.
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Susan A and I walking the halls |
When you get out of surgery, you have to lay flat for 24 hours. That is because they want to make sure there is no cerebral spinal fluid leak. I had a dilaudid IV pump that I could press anytime I had pain. But, I don't remember having much pain. I was highly medicated. I also had to wear pressure stockings. After 24 hours, they will gradually raise the head of your bed every hour. You are catheterized until your bed is completely raised. Once you are up, they help you to the bathroom and check to see if you can pee. The next day, they want you to walk. They give you a walker, take you to the end of the hall to a therapy room and want to see that you can walk up a ramp with your walker and some other things I don't remember. Once us girls were all up, we all visited each other in our rooms. It was so nice to go through this whole experience with friends. We knew we weren't alone and we were stronger by going through it together. While in the hospital, they measure your urine so you have to urinate in a toilet catcher and pour it into a container. That was my least favorite hospital activity. They make you take Miralax every day because inactivity and the pain medications slow down your bowel processes. My incision was two inches right above my butt crack. I think everyone's was two inches, but don't let that little scar size fool you. It was major surgery and those two inches are deceptive. I had steri strips covered with dressing over my incision that they changed daily. The other girls incisions' were closed with glue. I have no idea why the difference.
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Vising Mama E. Notice we are all smiling? Good drugs |
The food was good. No complaints. There was a hospitality room at the end of the hall that had drinks for patients and guests. There was a microwave, refrigerator and coffee pot in there. The nurses would bring me anything that I asked but it was nice when my husband was there because he could go get me drinks right away.
Another cyster had told me about a therapeutic cold therapy machine that she felt was a life saver. I took it to the hospital with me and the nurses helped me to wear it each day. They left it on 24/7 for the first 24 hours and I think it helped tremendously with pain and I had no swelling at all. I bought the Kodiak Polar Care Cold Therapy Unit. You need a doctor's prescription to order one. However, I found one on ebay for loads cheaper than retail price and bought it without even having to use my prescription. I think I must have either slept or been so drugged up for the first 24 hours because I don't remember much of having to lay flat. I remember the other cysters who had surgery before me coming to visit. Mama E and I had met the evening before surgery and went to the hospital to visit Susan A.
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Surgery recovery is much more
fun with friends & Netflix |
I had a very good experience during my hospital stay and was released the morning of my third day. There was only a tiny reclining chair for a guest to sleep on. There was no way in heck my husband could have slept in that thing and I wouldn't have expected him to. I told him to go back to the hotel to rest up so he would have energy to come back to the hospital the next day. Afterall, I was in good hands and had help if I needed it. I'll go into more detail about surgery instructions, the surgery and share parts of my post-operative report in my next post.
This is such a great resource that you are providing and you give it away for free. I love seeing websites that understand the value of providing a quality resource for free. It is the old what goes around comes around routine. Dr. HE
ReplyDeleteThank you Brittany. It's a bit outdated now though. Things have changed some since this was posted. Dr. F. now does surgeries at Dallas Medical City I believe. Don't quote me on that. And....apparently they are allowing patients to use and take home cold therapy machines! So not fair! LOL!
DeleteI am 24 years old and I Discovery that I have tarlov cyst. I Live in Brazil, and I can't find a doctor that could help me. The operation is very expensive?
ReplyDeleteIf you have a way to get in touch with Reta Honey Hiers at the foundation, she will know about reduced rates and arrangements. Have you already ruled out everything potentially causing your symptoms? Most of the time they don't cause any but for some unknown reason, they become symtomatic in some people. It's all guesses at this point. Trauma has been linked as an instigating event. Childbirth...and strangely... Many become symtomatic around 2 years after the last child, epidurals, falls onto your sacrum, car wrecks...I think there is possibly something autoimmune related as to why they become symtomatic. Autoimmune diseases can attack the outer layers of nerves, which is where the CSF gets trapped in Tarlov (Perineural) cysts. They're genetic and run in families. But not everyone in the family will have symptoms. Some do, some don't. What kind of symptoms do you have and what have you been told about potential sources?
ReplyDelete