My doctors have traumatized me. I now have a fear of staple guns. That's right I said staple guns.
In a period of six months, I had to have my head stapled two times while being fully conscious. One of those times was without anesthetics. The second time I did receive numbing injections but they are also painful because the doctor has to move the needle around to distribute the medication.
The first head stapling was in the E.R.. The physician actually apologized for having to do that and said he would never want that done to him. He was so upset that the on-call neurosurgeon instructed him to do that that he ran out of the room when it was done. My mother was with me for this one and it traumatized her having to watch that being done to her daughter.
The second time was when I was hospitalized in December and the ventriculostomy was being removed. My ICU nurse warned me that my neurosurgeon requested a staple gun just in case it was needed. I started panicking when I saw it in the package. It is just a miniature version of a regular staple gun.
Ultimately I did have to be stapled 5 times. The sound of the gun is so unnerving and the pain is, well, just shocking. The first one is incredibly painful and after that you are in so much shock that everything goes numb.
I never want to see a staple gun again.
I don't want to have my head re-sewn up while fully conscious either. I also had that done two times in a six month period. The first time my regular surgeon talked to me the whole time and kept asking if I was okay. I was really comforted by that because I was extremely nervous about it being done.
The second time was a little more traumatic. It was at 1:30 am and my numbing injections didn't work. I couldn't take the trauma anymore and literally had a breakdown.
During this same six month period I leaked CSF out of the incision on the right side of my head many times for various reasons. You can't even imagine how horrible it is to have your own brain fluid leak out of your head and down your neck and shoulder.
When my valve had a crack in it, the CSF was pouring out of my head like a faucet. My husband saw it when we were in the E.R. waiting to have emergency surgery and he hasn't forgotten it. Seeing your wife's brain fluid gushing out of her head is perturbing.
It has been almost three months since my last surgery and I still feel like fluid is leaking out of the right side of my head. But it's not. I have been so traumatized by the events that occurred that I have what I call "phantom drippings". It feels like I am leaking fluid, I panic, check the incision and find that it's dry.
I really hope that I can recover from this trauma soon. Maybe I need to go back into therapy. I just don't know. But what I do know is sometimes having this condition is completely traumatizing for me and my family.
This blog is about living my life with Hydrocephalus. I acquired it shortly after birth so I have many experiences to share. I will be very open about my journey. Feel free to comment, ask questions, suggest a topic for me to write about and share the posts. Please keep in mind that I am just one person out of millions. We may not all share the same symptoms and experiences but we can certainly be there for one another. Thanks for reading!!
Saturday, March 7, 2015
Monday, March 2, 2015
Programmable vs. Fixed Valves
In the late 90's, programmable or adjustable valves were invented to treat people with hydrocephalus. This means that if more or less CSF needs to be drained, the valve can change to multiple settings by means of a magnet. The magnet is placed on the outside of the body over the valve and is rotated to change the setting accordingly. Each shunt manufacturer has different ranges for settings and each brand uses different materials for the magnet.
Reprogramming a valve is non-invasive and could prevent future surgeries. If a person has a fixed valve meaning that CSF flows at low, medium or high pressure, he or she would need surgery to replace the valve if the brain changes how much CSF it needs in the ventricles. This can be an on going problem.
Unfortunately not everyone is a candidate for adjustable valves. In the last two years we have learned that I am one of those people.
My first adjustable valve was placed in 2003. Immediately upon it being inserted, I started having intense pain in my head above the valve and just didn't feel "right". I felt that pain every single day. My doctor at the time misdiagnosed me with nerve damage. But when my valve was exchanged for a newer one in 2013 the pain became even more intense. I felt that pain every day until that valve was removed four months later. A fixed valve was put in. Now remember a fixed valve has no metal components in it. Once the fixed valve was put in, the pain went away. We think that I have some sort of metal allergy.
Another problem I had with programmable valves was that all my physicians always had trouble programming them. They wouldn't move, would get stuck, or move to the wrong setting right in front of the physician's eyes. The adjustable valves would also reset by themselves often. For awhile they were reseting every two weeks. Although it is a relatively simple procedure to reset a valve for most people, it is dangerous when the pressure in the brain is fluctuating that often.
I had one more problem with the programmable valves and this one is by far the strangest. I used to get shocked. All the time! Just like when there is too much static electricity in the air. Anytime I touched something, someone, or started my car I was shocked badly. I would get a shooting pain that went straight to my valve and then I would get a headache. One time I laid down on a metal slide to look up at the sky and when my head touched the metal I felt like I was being electrocuted. My valve never worked the same after that and ultimately had to be replaced.
My doctor, everyone at the doctor's office and even the shunt representatives had never heard of this happening. It was maddening because they looked at me like I was crazy or just didn't believe me. But just ask my husband. He can tell you how much it drove him insane that I would shock him every time I kissed him. We got to the point where I had to touch something else first before we kissed. But once the fixed valve was put back in all that went away. So either I have super hero powers or I have a metal allergy. I am leaning more towards the metal allergy since I can't even wear jewelry because it irritates my skin so badly. I can't take iron or zinc either. My current physician has decided that programmable valves are no longer an option and I agree whole heartedly.
My current fixed valve needs to be replaced because I am over-draining. My surgeon had to move my shunt to the left side due to circumstances beyond his control. It had been on the right side for 36 years. The ventricle it was in is collapsed from being shunted so long. Only the catheter was holding the ventricle open which made flow minimal. The left ventricle is not collapsed and flows much better which is causing my over-drainage. But now I need to have another surgery to remedy the situation.
The purpose of this post is not to criticize either types of valves. I just want to educate people and share my experience. Programmable valves are a fantastic invention and one of the only improvements in the treatment of hydrocephalus in my opinion. Many people are able to function with them successfully. The same can be said with a fixed valve. As long as the brain does not change how much pressure it needs, chances are that the valve could work properly for years. A patient and physician just need to determine what the best option is.
I have also learned over the last couple of years that not all shunts work the same. Each shunt manufacturer truly is different. People in my life are always so quick to blame the doctors for everything but they don't take matters like this into consideration. Treating hydrocephalus can truly be trial and error. How could my physicians possibly know that I would have some sort of metal allergy when I didn't even have standard symptoms of one? But we were able to determine without a doubt that the magnet was the culprit of my problems. Also one would think that all shunts work the same but that isn't the case.
If you do have an adjustable valve be cautious and aware of magnets around you. They are everywhere. In your phones, speakers, lap tops, microwaves, etc. If you are traveling carry a shunt card with you from your manufacturer that states you have an adjustable valve. Then you can avoid going through scanners when going through security. My valve almost always readjusted at airports. There are strong magnetic fields all over airports.
Even though I may have to endure more surgeries than someone with an adjustable valve, I have piece of mind knowing that my setting is not going to change randomly when I may not be near a hospital and that the shocking and horrific pain is gone...for good.
Reprogramming a valve is non-invasive and could prevent future surgeries. If a person has a fixed valve meaning that CSF flows at low, medium or high pressure, he or she would need surgery to replace the valve if the brain changes how much CSF it needs in the ventricles. This can be an on going problem.
Unfortunately not everyone is a candidate for adjustable valves. In the last two years we have learned that I am one of those people.
My first adjustable valve was placed in 2003. Immediately upon it being inserted, I started having intense pain in my head above the valve and just didn't feel "right". I felt that pain every single day. My doctor at the time misdiagnosed me with nerve damage. But when my valve was exchanged for a newer one in 2013 the pain became even more intense. I felt that pain every day until that valve was removed four months later. A fixed valve was put in. Now remember a fixed valve has no metal components in it. Once the fixed valve was put in, the pain went away. We think that I have some sort of metal allergy.
Another problem I had with programmable valves was that all my physicians always had trouble programming them. They wouldn't move, would get stuck, or move to the wrong setting right in front of the physician's eyes. The adjustable valves would also reset by themselves often. For awhile they were reseting every two weeks. Although it is a relatively simple procedure to reset a valve for most people, it is dangerous when the pressure in the brain is fluctuating that often.
I had one more problem with the programmable valves and this one is by far the strangest. I used to get shocked. All the time! Just like when there is too much static electricity in the air. Anytime I touched something, someone, or started my car I was shocked badly. I would get a shooting pain that went straight to my valve and then I would get a headache. One time I laid down on a metal slide to look up at the sky and when my head touched the metal I felt like I was being electrocuted. My valve never worked the same after that and ultimately had to be replaced.
My doctor, everyone at the doctor's office and even the shunt representatives had never heard of this happening. It was maddening because they looked at me like I was crazy or just didn't believe me. But just ask my husband. He can tell you how much it drove him insane that I would shock him every time I kissed him. We got to the point where I had to touch something else first before we kissed. But once the fixed valve was put back in all that went away. So either I have super hero powers or I have a metal allergy. I am leaning more towards the metal allergy since I can't even wear jewelry because it irritates my skin so badly. I can't take iron or zinc either. My current physician has decided that programmable valves are no longer an option and I agree whole heartedly.
My current fixed valve needs to be replaced because I am over-draining. My surgeon had to move my shunt to the left side due to circumstances beyond his control. It had been on the right side for 36 years. The ventricle it was in is collapsed from being shunted so long. Only the catheter was holding the ventricle open which made flow minimal. The left ventricle is not collapsed and flows much better which is causing my over-drainage. But now I need to have another surgery to remedy the situation.
The purpose of this post is not to criticize either types of valves. I just want to educate people and share my experience. Programmable valves are a fantastic invention and one of the only improvements in the treatment of hydrocephalus in my opinion. Many people are able to function with them successfully. The same can be said with a fixed valve. As long as the brain does not change how much pressure it needs, chances are that the valve could work properly for years. A patient and physician just need to determine what the best option is.
I have also learned over the last couple of years that not all shunts work the same. Each shunt manufacturer truly is different. People in my life are always so quick to blame the doctors for everything but they don't take matters like this into consideration. Treating hydrocephalus can truly be trial and error. How could my physicians possibly know that I would have some sort of metal allergy when I didn't even have standard symptoms of one? But we were able to determine without a doubt that the magnet was the culprit of my problems. Also one would think that all shunts work the same but that isn't the case.
If you do have an adjustable valve be cautious and aware of magnets around you. They are everywhere. In your phones, speakers, lap tops, microwaves, etc. If you are traveling carry a shunt card with you from your manufacturer that states you have an adjustable valve. Then you can avoid going through scanners when going through security. My valve almost always readjusted at airports. There are strong magnetic fields all over airports.
Even though I may have to endure more surgeries than someone with an adjustable valve, I have piece of mind knowing that my setting is not going to change randomly when I may not be near a hospital and that the shocking and horrific pain is gone...for good.
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