To the zero readers

I think it’s about time for an update to the zero people that read my blog. My neurosurgeon called asking if my mom and I wanted to go see a play with his family and a few nurses from his office but my mom told him I wasn’t doing well. He said “what do you mean she’s not doing well?” I’ve been having high pressure pretty much every night and have been sleeping with my bed up (it’s adjustable).

We thought my shunt was intermittently getting clogged but that didn’t make sense since I was still over draining during the day. He said he thinks all the shunt assistants are keeping it from draining when I’m laying down and we could switch them out for the miniNAV. I’ve also been having severe back pain. 

He gave us an update on the icp monitor. The fda did approve the device however the company in Germany refused to give it to us and the more my surgeon talked to the company he decided that it wasn’t a good fit and he didn’t want to pursue it any further (try to get it). I was really disappointed. However, there is another company in the us that is a well known medical device company and I have had their shunts before (I can’t remember the name right now) that also has one but again, it’s not fda approved and is currently in the testing phase. 

He is trying to get approved to be a testing site (again for three patients). He’s hopeful that he will get approval since they approved the previous one. I just hope all this happens soon. The amount of pain I am in is crazy. 

We have a plan

I have some Interesting/exciting-ish news (depending on who you ask). I saw Benny today. My neurosurgeon. And he told us that he just got back from an out of country conference and he spoke with a few different surgeons there. He said that a dr in Germany has a patient with 7 shunt assistants and an on/off button for her shunt. It’s under the skin and is basically a bubble like a regular valve that you push on to turn it on and off. So when she thinks she is over draining, she just turns off her shunt.

Well, it’s not fda approved in America yet. But he put in a request to the hospital for permission to put one in 3 people as “compassionate care”. His word, not mine. And I am one of them. He expects to have an answer in two or three days. Two weeks at the most.

If it’s not approved he’ll just put in more assistants (I have 3 right now). If it’s approved though then I hope I’m the first one he puts it in (pretty sure I would be) so that not only would I be the second known person in America to have a jugular shunt put in but I would also be the first known person in Wisconsin to have one of these put in. 

I’m just happy we have a plan. I’ve been suffering from severe back pain lately. It’s so bad that some nights I just lay in bed and cry. I’m praying this works out. 

This is a link to the device. My favorite part is where it says “non-invasive” but it requires surgery to place. 

https://www.raumedic.com/fileadmin/user_upload/PDF/Telemetry-Flyer-EN.pdf

An update

It’s been a while since I last wrote. I have a feeling that it will always be like that! I have been up since 10:30 am and finally had a chance to lay down around 3 pm. My back hurts pretty bad. An 8. My head hurts about a 7. While my pain (head) still gets to a high number, it takes longer for it to become really bad. My back pain is really what has been bothering me since surgery. I am happy that surgery seems to have helped a little. To me that means maybe one day things will be better to the point that I can function and have a life. It has given me a little hope. I still have high pressure at times though which hurts pretty bad. I am praying that gets better after I have my shunt adjusted. 

Another surgery is behind me

I had my 58th surgery on Friday the 25th. 

About a month ago the hospital sent me a package of chlorhexidine wipes to wash my body with the night before surgery to help prevent infection. Shortly after using them I broke out into hives and I couldn't stop itching. 

At first it was just on my arms and legs and we tried laying a wet washcloth on them to help with the itching, I took some Benadryl and we waited about 30 minutes until I just couldn't take it anymore and the hives were spreading. So I took a shower to wash it all off and now we know I'm allergic to chlorhexidine. 

Surgery was scheduled for 12:45 and I needed to be there at 10:45. They gave me this really weird paper gown to put on that was then hooked up to something that blew air into. It was called a bear hugger and was supposed to help prevent infection. This was in the adult hospital. Oh how I miss children's.

 I was really uncomfortable but the nurse insisted I wear it. I did get lucky though. There was another nurse who took over for her and she told me that there were a lot of people who felt uncomfortable in them so she was nice enough to get me a regular gown to change into. 

They then asked the anesthesiologist if they would use my port for surgery (some won't due to the risk of infection) and he said yes so they accessed it. 

My neurosurgeon was running late (I found out the next day that he had two other cases both in different hospitals) and my surgery was pushed back to 4. I was in a lot of pain though and since I couldn't have any oral medicine, they were able to get me iv pain medicine through my port. I didn't see my surgeon until 4:30 and he called a neurologist who I have seen before and who also happens to be a mathematician, to talk about if he should change the current shunt assistants or add a new one. Ultimately he decided to change my current ones. 

He said the room was already ready so surgery would be soon. He went back to the o.r. (#4) and then called my mom and let her know there was a problem with the room and it would be another hour. About 20 minutes later he called again and asked her if she thought 9/19 (pressure of 9 when laying down, 19 when upright) was a good idea since we have never tried that before. Which is what we all agreed on. 

The pre-op area closed at 6 so I was taken to a room near the or while I waited. Finally it was time. I had a different anesthesiologist than previously because of shift change. The new guy was nice though. I can't remember how we got to the subject but he and I were talking about having dreams while under anesthesia. I told him that so many people think that you have dreams but you don't or at least I don't. He then responded with you can't remember them because you're sleeping. I met the nurses who would be in room and I told them to make sure my surgeon didn't use steri-strips or skin glue because I will get hives. 

My mom gowned up and we went back. My surgeon is always in the room so I reminded him not to use the steri-strips or skin glue. He said "what do you want me to use? Nylons?" I said "yes" then he said "do you want me to go left to right or right to left?". I knew he was going into my chest but I didn't know he was also going into my neck. He said to one of the nurses "prep her chest and neck" but it didn't register with me.

 I asked him if I could have the shunt assistants that he took out and he said yes so I have them in a jar soaking in saline to disinfect them. When they were putting me to sleep they were pushing it in really slow so they wouldn't give me too much. I don't remember this (my mom told me),  I asked my surgeon who was standing next to me "do you think this will help?" He sighed and then I fell asleep. He looked at my mom and says "I dodged a bullet there didn't I."

I was in a significant amount of pain after I woke up (can you blame me?) and I was confused as to why my neck hurt. I asked the nurse if he cut my neck and she said "yes but it's only about an inch long." They gave me iv pain meds in the recovery room but oral on the floor. 

I asked for my mom in the recovery room and then asked if we could get her on the way to my room since she was in the waiting room. That didn't happen but right when I got to my room my mom walked in and said she had been looking for me since they usually get her to see me in the recovery room. She asked the surgeon what floor I would be on and then she went looking for me. 

I got to my room around 9 and it was a rough night. I was in a lot of pain and the oral medicine wasn't helping. The nurses asked the resident multiple times to order iv meds but he wouldn't. He obviously doesn't know me! 

The hospital has hot packs that you pop and they stay hot/warm for up to 30 minutes. After that they get really hard. They don't last long but they work so well while they're hot/warm. I was talking to the nurse the day I was discharged about them and we both agreed that they work much better than heating pads. We usually take some home with us but this time the nurse actually ordered us a box of them. 

The pharmacy isn't the greatest there. When he was giving me some meds he said the box should be there any minute. I didn't have my hopes up. About 30 minutes later he was deaccessing my port and it still hadn't arrived. He did clean out the drawer for us. So at least we were able to bring some home (10) which I am grateful for. 

I'm in a lot of pain and I can't move much without hurting. I was taking off the bandage (a piece of gauze with paper tape) but the gauze was sticking to my incision so I'm going to wait another day. I'm praying that things will start feeling better and I really hope that someone with hydro or who has a family member with it reads this. 

We have a date!

We have a surgery date!

We spoke with the nurse who schedules the surgeries today. They have a new policy that requires you to get a physical two weeks in advance. That will be on the 11th and I will be getting blood drawn from my port and then they will flush it the same day. If everything goes according to plan (fingers crossed) surgery will be on the 25th. 

He wrote in my chart that he is replacing both of the shunt assistants that I have in my chest. When we last spoke with him, he was going to talk to a neurologist who has helped me before. He wants to mathematically figure out how much pressure in theory I would need to stop the over drainage. Plan may change day of, never know. 

Surgery 58 in August

I saw my neurosurgeon today and talked to him about changing my shunt assistants (I have 3) for new ones because they are old and may be contributing to the severe low pressure. He will either add another one, change my current ones or both. He has to go into my chest which is the most painful. 

To be honest, I wasn't expecting him to do anything at all except to adjust it. I'm very happy he is though, I'm so miserable that I just can't take it anymore. My family is taking a trip to Canada to see Niagara Falls in two days and he will unfortunately be out of town the first two weeks of August so it will have to wait. It hurts my legs pretty bad to walk very far so I use a wheelchair and I just got my new one today. It's a few inches smaller than my previous and more comfortable. Well, that's it for now. 

                                                                My old chair 

My new chair 

                                                                                             Zebra stripes!

An overdue update

I am a horrible blogger, but that's okay because no one reads this anyway. Fair warning: this will be freaking long. I'm still struggling with low pressure during the day and high pressure at night. It's official: my shunt hates me. How can something that is supposed to help you and improve your quality of life do the opposite? 

We turned my shunt to the virtual "off" meaning according to the company, it should be draining very little. So, I had high pressure for months with no vomiting (vomiting is a sign of shunt failure). I have an adjustable bed (pretty cool I know) so I just slept upright for months. Then it finally happened. I started throwing up. Great. I only threw up once, but combined with the horrible high pressure I was having that day we decided it was time to make the drive to the er to have a shunt tap and remove some fluid.

 My mom called ahead and talked to the neurosurgery resident and he said he would be waiting for us. It wasn't too busy when we got there so we got a room right away. I have a port and I'm so thankful for that! The er doctor could tell I was in a lot of pain so he didn't hesitate to give me iv pain medicine since it works much faster intravenously. 

I had a ct to check my ventricle size and see if they were enlarged, which is another sign of shunt failure. 

With hydrocephalus the ventricles enlarge.

 I have a rare disease similar to hydrocephalus. The difference is with intercranial hypertension, the ventricles do not enlarge so we knew they wouldn't be bigger, but the hospital said it's protocol. I have hydrocephalus as well, kind of. After I had a cranial expansion (taking apart the skull and making it bigger) my ventricles did get bigger, which is what the neurosurgeon hoped for. My shunt has broken since then, but never enlarged again if that makes sense. Hydro is common. It's easier to tell people I have that. 

We found out my neurosurgeon/family friend was out of town so I had to see his new partner and you guys, he was his freaking doppelgänger. I swear, same glasses and dorky clothes too!

We got to the er around 4pm and even though we called ahead, we didn't see the neurosurgery resident until 8pm. Although, I didn't think calling ahead would help at all. He decided not to tap due to infection risk and to turn the shunt all the way down to the lowest setting to get the fluid out. BUT since I have a programmable valve, you need the programmer, but he didn't know where it was. 
At this point I was pretty out of it. I was in a significant amount of pain and nothing was helping. My mom told him if he couldn't find it within an hour he was doing a shunt tap. He found it upstairs in 30 minutes. It was turned down and I was admitted for the night to watch. Since we turned it down so much and so drastically I had HORRIBLE low pressure so we turned it up a little and that's where I am now. Still having low pressure headaches with horrible back pain as well and high pressure at night. 

I have an appointment to talk with the surgeon about either adding a new shunt assistant or switching out one of the old ones. I'm praying he agrees to do something. As much as I hate surgery, I hate being in pain more. I'm miserable and can't really do anything at all because of the pain. 
Sometimes people think that since I've had so many surgeries it gets easier every time. The truth is, it doesn't. In fact, it does the opposite. It gets harder. Harder, because this is one more option that you are crossing off the list. Harder, because you know that this is a crap shot. I have hope (not my twin sister Hope). Hope that this may help. Hope that this could be the last surgery I have to have. So that's the end of my saga. For now.

Note: I mention my mom a lot in my posts. She's my best friend and my rock. She has slept on uncomfortable couches and fold out chairs for months at a time. She advocates for me when I can't and does everything she can to provide me with the best medical care and to get the help I need. She encourages and supports me. She means the world to me and I could never repay her for everything she has done and sacrificed for not only me, but my family as well. I'll do the same for her if need be.