Catching up - Post-operative instructions, information, and experience. Update on recovery and my current pain management regimen.
Sharing my journey to encourage my fellow "cysters and mysters" and spread awareness about Tarlov Cyst Disease. There is no sugar coating it. This disease is nasty and life-robbing. Mixing some keepin' it real with a dash of spice, faith and humor. Let simmer for two years or until thoroughly cooked.
9/16/2016
Pre-surgery instructions, pre-operative clearance, post-operative report
I am posting three documents at the bottom of this entry for your viewing pleasure. Yay! This will be a gripping page-turner that will thrill you so much you won't know what to do with yourself. You can gain a lot of detailed information from these documents about what you (or another patient) have to do prior to surgery as well as the detailed explanation of the surgery itself. If you have any questions, comment below or feel free to send me a private message. I will do my best to answer them based on my personal experience.
Surgery Instructions. This is what you must do prior to surgery. I did not copy the back side of the page that had directions to the hospital, hotel information etc. because you can find that online.
What To Bring With You for Surgery
This information was supplied from Dr. Feigenbaum's office.
Pre-operative Clearance
Dr. Feigenbaum will send orders to your primary care physician for lab tests and an EKG. The results must be faxed to his office before you will be allowed to have surgery.
Operative Report
I was confused by this at first because of the description of the nerves/cysts. These are NOT where your cysts are located. They are the name of the nerve root that the cyst is in. I had one that was treated (sliced open, drained, packed with fat, sutured, wrapped) and the three others did not have to be cut open.
I believe I received a post-operative summary from the Neurologist who conducted the ongoing intraoperative nerve monitoring. They do send you information on what they will be doing. This monitoring is very important because it allows Dr. F to see if anything happens when he touches a nerve. They insert needles into many parts of the body (while you are asleep) and monitor nerves in upper torso, below the waste, and nerves related to bowl and bladder functions. When you wake up from surgery, you may see some slight bruising or blood spots where the needles were inserted. All of us girls had the same bruise on an area of our hand.
I've had some recovery regression since I posted last. Intense nerve pain returned to my legs and pressure over my sacrum. The first time was after I walked for 20 minutes. I was down for 2 days. This makes no sense since I am usually able to get out for a bit. I did have to climb up a hill, which engaged the piriformis muscle and I believe triggered the sciatic nerve. Then, for no apparent reason, I could barely walk for two days and have spent my time in bed since I last posted. The weather had not changed and I had done nothing on my feet to aggravate it. The only thing I can think of is that it may have been because I was going through a period where my nerves were regenerating/growing. That causes pain.
Below, you will see a picture of my spinal canal pre-surgery and post-surgery. You cannot see all of the cysts from this view but you can see that the large one is compressed, the nerves and cerebral spinal fluid now flow freely through the end of the spinal canal. In the "after" picture, there is a slight bulge from the bovine pericardium (cow heart) wrapping.
Surgery Instructions. This is what you must do prior to surgery. I did not copy the back side of the page that had directions to the hospital, hotel information etc. because you can find that online.
What To Bring With You for Surgery
This information was supplied from Dr. Feigenbaum's office.
- Medications
- Pair of shoes that are easy to slip on and off to avoid bending
- Comfortable clothing that will not rub your incision site
- Personal hygiene items (basic products will be provided such as a toothbrush, toothpaste, comb and lotion.)
- If you so choose, you can bring your pillow and blanket.
- Please remove all jewelry for surgery, including body piercings.
- Those with long hair, please put your hair up in a pony tail with a non-metal hair tie.
Pre-operative Clearance
Dr. Feigenbaum will send orders to your primary care physician for lab tests and an EKG. The results must be faxed to his office before you will be allowed to have surgery.
Operative Report
I was confused by this at first because of the description of the nerves/cysts. These are NOT where your cysts are located. They are the name of the nerve root that the cyst is in. I had one that was treated (sliced open, drained, packed with fat, sutured, wrapped) and the three others did not have to be cut open.
I believe I received a post-operative summary from the Neurologist who conducted the ongoing intraoperative nerve monitoring. They do send you information on what they will be doing. This monitoring is very important because it allows Dr. F to see if anything happens when he touches a nerve. They insert needles into many parts of the body (while you are asleep) and monitor nerves in upper torso, below the waste, and nerves related to bowl and bladder functions. When you wake up from surgery, you may see some slight bruising or blood spots where the needles were inserted. All of us girls had the same bruise on an area of our hand.
I've had some recovery regression since I posted last. Intense nerve pain returned to my legs and pressure over my sacrum. The first time was after I walked for 20 minutes. I was down for 2 days. This makes no sense since I am usually able to get out for a bit. I did have to climb up a hill, which engaged the piriformis muscle and I believe triggered the sciatic nerve. Then, for no apparent reason, I could barely walk for two days and have spent my time in bed since I last posted. The weather had not changed and I had done nothing on my feet to aggravate it. The only thing I can think of is that it may have been because I was going through a period where my nerves were regenerating/growing. That causes pain.
Below, you will see a picture of my spinal canal pre-surgery and post-surgery. You cannot see all of the cysts from this view but you can see that the large one is compressed, the nerves and cerebral spinal fluid now flow freely through the end of the spinal canal. In the "after" picture, there is a slight bulge from the bovine pericardium (cow heart) wrapping.
To see the post-op report and documents, click HERE.
9/08/2016
General surgery and hospital experience (Friendships by His Design)
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.
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.
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.
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.
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.
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.
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| Ready for Surgery! |
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.
 |
| 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.
 |
| Susan A and I walking the halls |
 |
| Vising Mama E. Notice we are all smiling? Good drugs |
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 |
9/07/2016
I've Been a berry bad blogger - 8 Months post-op
Nope, I'm not dead. Yep, I survived surgery. And, yes, I have been a very, very BAD blogger. I have totally dropped the ball on this one.
I am happy to say that 8 months post-surgery, I am FINALLY, for the love of God, seeing progress. It has been SO S.....L.....O.....W. People told me, I read it, and I heard it from other cysters who had the surgery that this would be a long, painful and difficult recovery. I knew this. However, you can't really digest how long 6 months - 2 years of recovery really is until you are in the thick of it. Until this past month, I've still been virtually bed bound due to pain I have if active. Instant pain when on my feet, sitting or standing. The progress that I've made is that now, most days, I can finally get out again, without immediate pain, for roughly 2 hours. After that point, my debilitating pain in my legs returns and back to the bed for me. But, this is progress and I haven't been able to go out without severe consequences in over a year. I still do not drive much. I'm afraid to go more than 5 minutes away from home because I have had severe pain in my right leg from my butt down if my foot and leg are flexed in the driving position. I've only driven a handful of times. We are very blessed that my son's teacher picks him up in the mornings and that my husband gets off of work in time to pick him up after school.
I have been in touch with my 4 other cysters who had surgery the same time I did. I know we should never compare ourselves in terms of recovery but it seems that everyone else is doing about the same as me, if not behind.
I've been off of here for so long that I'm not even sure where to start. So, I'll start from surgery next post and explain the procedure, hospital stay and 10 days in Dallas.
I am happy to say that 8 months post-surgery, I am FINALLY, for the love of God, seeing progress. It has been SO S.....L.....O.....W. People told me, I read it, and I heard it from other cysters who had the surgery that this would be a long, painful and difficult recovery. I knew this. However, you can't really digest how long 6 months - 2 years of recovery really is until you are in the thick of it. Until this past month, I've still been virtually bed bound due to pain I have if active. Instant pain when on my feet, sitting or standing. The progress that I've made is that now, most days, I can finally get out again, without immediate pain, for roughly 2 hours. After that point, my debilitating pain in my legs returns and back to the bed for me. But, this is progress and I haven't been able to go out without severe consequences in over a year. I still do not drive much. I'm afraid to go more than 5 minutes away from home because I have had severe pain in my right leg from my butt down if my foot and leg are flexed in the driving position. I've only driven a handful of times. We are very blessed that my son's teacher picks him up in the mornings and that my husband gets off of work in time to pick him up after school.I have been in touch with my 4 other cysters who had surgery the same time I did. I know we should never compare ourselves in terms of recovery but it seems that everyone else is doing about the same as me, if not behind.
I've been off of here for so long that I'm not even sure where to start. So, I'll start from surgery next post and explain the procedure, hospital stay and 10 days in Dallas.