I went to see the neuro-opthamologist again on Monday for a follow up appointment regarding the condition of my right eye. He said the eye muscle has not gotten worse since my brain injuries in March earlier this year. The pain I feel inside the iris and in the nerves and muscles behind and inside the eye is not from the eye getting stronger, it's probably from another injury related to the brainstem stroke I had.
When I saw the ENT specialist he had suggested I could have a condition called TMJ or Temporomanibular Joint Disorder. There are times when my jaw locks and I can't move it, there have also been incidents where I have pain on the right side of my neck underneath my jaw. During the pain episodes I cannot swallow for a minute until the pain goes away. The pain above my jaw is usually followed by a sharp pain inside my right ear. This has been going on for 10 months since I had the brain injuries in March. The jaw incidents are not everyday, they vary. Sometimes happening every day or multiple times a day or going on a few days without having any episodes. I have to go see a specialist regarding this. The TMJ most likely occurred when I had the hemorrhage on my left side which caused the stroke. The stress on my body most likely caused me to grind my teeth which as a result moved my jaw out of place and messed up some nerves in the process.
On Monday I schedule my eye muscle surgery. It will be towards the end of March. Since it's an outpatient procedure, I'll get to go home after the surgery and then see the eye surgeon again the next day for a follow up appointment.
I have to keep the tape on my right glasses lens in the meantime because of the double vision. I have about 83 days before I get my eye fixed. I've had double vision for a year in March. I don't need to explain why it's a challenge to continue to function with all these issues going on inside my body between nerve issues and overall recovery. Sometimes it's hard to get some people to understand what the recovery process really means and why it can be really frustrating, joyful and painful all at the same time. I've had to go through multiple grieving processes within my own body of what I can do and what I was able to do a year ago when things were different. For example, my drawings are better than they were before, but my hand writing is different. They way my hand moves when it's writing out words is not the same as it was last year. My hand doesn't move the same way. The hadn writing itself looks the same ( kind of ) . The countdown begins....
Wednesday, December 24, 2014
Thursday, December 11, 2014
Stories and Thin Cameras
This morning I had a very small camera stuck up my nose and down my throat. Since I had multiple brain injuries in March, I've been feeling a sharp pain inside my right ear and underneath my jaw near the salivary gland. There are times when I can't even open my mouth and feels ( for a few seconds) as if my throat is closing. This happens at different times. Sometimes in the evenings, mornings afternoons, or on the rare occasion while I'm eating (which happened a few days ago). I went to see a throat specialist today where he inserted a camera up my right nostril and down my throat. This hurt quite a bit. Once a spent a few moments with my mouth open and making sounds from my throat he removed the camera. It felt more painful having it pulled out through my nose. Once it was removed a large tear ran from my right eye. Luckily I had tissues in my bag. I had to take aspirin to help alleviate the pain inside my nose. Even now at 5:28pm my nostril still feels a little sore. I was told there is nothing wrong with the glands near my throat or anything inside my ear. The pain I feel apparently has something to do with my teeth grinding. I was told I should see a dentist to get fitted for something to wear at night inside my mouth The grinding at night is was is causing the pain inside my throat and ear.
We'll see what the dentist says and if it resolves the issue.
I wasn't grinding my teeth before March.
It only started after the injuries I had on March 6.....
In other news....
I may have mentioned in an earlier post about stories I had while in rehab. I was thinking about them today in order to cheer up my mood:
It was breakfast time ( I think during my second week ) we (the patients) were seated at the two tables in the common/room cafeteria in strapped into our wheelchairs. There was only one aide in the room and she left our breakfast trays on the metal shelves in the middle of the room. She was called away before she started to serve us. We all sat in our wheelchairs a little after 8am. She didn't return for 15 minutes. The man seated next to me said, "I guess we have to serve ourselves." His statement made me laugh and still makes me laugh now when I think about it. It's both depressing and funny at the same time. It was a bit ridiculous, we're all belted to our wheelchairs and no one can go walk across the room to get a tray. The seat belts were tied behind the wheelchair so there wasn't any way for you to unbuckle yourself.
Then there was the time when I was eating in the common room during breakfast. I had finished and cleaned up my spot at the table (during the first week). The aide told me I could return to my room. I was used being escorted by an aide who would wheel you back. I attempted to move the wheelchair using the bars on the side to move it in the direction thought I wanted to go. I left the cafeteria and two feet later got stuck in front of a wall. I couldn't figure out how to turn the wheelchair to the right using the handle bars to get back to my room. I sat there for what seemed like ten minutes ( I think it was five ) Not being able to move the wheelchair made me both depressed and made me laugh. I have a dry sense of humor and I realized while facing the wall in my wheelchair how upsetting it was emotionally not to be able to figure out how to move it where I wanted to go. All I could think about was how the week prior to the brain injuries I was driving a car, walking, etc. and now I was sitting in a wheel chair and couldn't walk, stand or lift my head up all the way. At the time I recognized how ridiculous is was that I couldn't figure out how to move this wheelchair when previously I had done more complicated things.
We'll see what the dentist says and if it resolves the issue.
I wasn't grinding my teeth before March.
It only started after the injuries I had on March 6.....
In other news....
I may have mentioned in an earlier post about stories I had while in rehab. I was thinking about them today in order to cheer up my mood:
It was breakfast time ( I think during my second week ) we (the patients) were seated at the two tables in the common/room cafeteria in strapped into our wheelchairs. There was only one aide in the room and she left our breakfast trays on the metal shelves in the middle of the room. She was called away before she started to serve us. We all sat in our wheelchairs a little after 8am. She didn't return for 15 minutes. The man seated next to me said, "I guess we have to serve ourselves." His statement made me laugh and still makes me laugh now when I think about it. It's both depressing and funny at the same time. It was a bit ridiculous, we're all belted to our wheelchairs and no one can go walk across the room to get a tray. The seat belts were tied behind the wheelchair so there wasn't any way for you to unbuckle yourself.
Then there was the time when I was eating in the common room during breakfast. I had finished and cleaned up my spot at the table (during the first week). The aide told me I could return to my room. I was used being escorted by an aide who would wheel you back. I attempted to move the wheelchair using the bars on the side to move it in the direction thought I wanted to go. I left the cafeteria and two feet later got stuck in front of a wall. I couldn't figure out how to turn the wheelchair to the right using the handle bars to get back to my room. I sat there for what seemed like ten minutes ( I think it was five ) Not being able to move the wheelchair made me both depressed and made me laugh. I have a dry sense of humor and I realized while facing the wall in my wheelchair how upsetting it was emotionally not to be able to figure out how to move it where I wanted to go. All I could think about was how the week prior to the brain injuries I was driving a car, walking, etc. and now I was sitting in a wheel chair and couldn't walk, stand or lift my head up all the way. At the time I recognized how ridiculous is was that I couldn't figure out how to move this wheelchair when previously I had done more complicated things.
Friday, November 21, 2014
Eye Surgery, Part II
I went to an eye glasses office yesterday to see how the prism sticker would work with my glasses and correct the double vision while I wait to have surgery in March. It didn't work. When I'm not wearing my glasses with tape covering the right lens, I see two of everything. When I move my head to the left the two images get closer, then separate. Moving my head to the right causes the two images to move further apart from each other. When I had the prism sticker on my glasses yesterday I could see one image when looking straight ahead. But When I moved my head left or right the images would shift and move just like when I'm not wearing my glasses with one lenses covered. It was suggested I go see my neuro-opthamologist again to have the prescription split between two lenses. Perhaps the images won't move when my head does. If it doesn't work I'll have to keep the tape on my lens until March when I get my eye muscle corrected.
Wednesday, November 12, 2014
Two
I've had double vision for eight months. My right eye has been covered since then. First it was with a black patch, now I have a piece of tape covering the right side of my glasses. With both eyes open I see two of everything. The images align side by side and the picture in the right eye moves each time I shift my head up or down. When I move my head to the left the images get closer togeth
er. When I move to the right the image get further apart from each other. See examples below:
er. When I move to the right the image get further apart from each other. See examples below:
Regular vision - what you see everyday and what I saw up until March |
What it looks like to have double vision |
When I move my head up, the image in the right eye moves with it (up). |
When I move my head down so does the image in the right eye. |
The images move closer together when I move my head to the left. |
Images move further apart when I move my head to the right. |
What things looked like wearing the patch on my right. With the tape on my glasses it looks similar to with the patch . More light comes through the tape and I see grey and white instead of black. |
Wednesday, October 29, 2014
Eye Surgery Part 1
I met with an eye surgeon this afternoon. I was told they don't do corrective eye surgery on patients until it's a year after they first had their injury. This way it allows enough time to see how much the muscle behind the eye heals on it's own. I have to meet with the neuro-opthamologist I saw over the summer again in December, then meet with the eye surgeon again before I have surgery in March. There's an 80% chance it will work. They have to warn you about the risks involved, bleeding, etc. With eye surgery there's the possibility I may have to have additional surgeries in the future. It's good I haven't lost the use of the muscle behind my eye.
In the meantime, I can get a prescription for a prism lenses sticker to put on my glasses lenses which will allow me to see one image instead of two. I didn't expect to have the eye corrected until sometime next year, as this is what the ophthalmologist had told me over the summer. I wasn't sure if this would be done before the end of the year. The surgeon had explained the reason why they don't rush these surgeries is because sometimes there's an improvement in the eye muscle and then it works too well or too poorly. Therefore, it's best to wait and see what happens. Am I happy about having eye surgery? No. I'm glad it can be corrected and the nerves behind my eye aren't dead. It will be nice to be able to see through both my lenses. I was afraid the surgery would be local anesthesia, where you're awake the entire time. I was told it will be general anesthesia and I won't be in the hospital overnight, I'll be able to go home the same day. Recovery time is something like 3-4 days.
In the meantime, I can get a prescription for a prism lenses sticker to put on my glasses lenses which will allow me to see one image instead of two. I didn't expect to have the eye corrected until sometime next year, as this is what the ophthalmologist had told me over the summer. I wasn't sure if this would be done before the end of the year. The surgeon had explained the reason why they don't rush these surgeries is because sometimes there's an improvement in the eye muscle and then it works too well or too poorly. Therefore, it's best to wait and see what happens. Am I happy about having eye surgery? No. I'm glad it can be corrected and the nerves behind my eye aren't dead. It will be nice to be able to see through both my lenses. I was afraid the surgery would be local anesthesia, where you're awake the entire time. I was told it will be general anesthesia and I won't be in the hospital overnight, I'll be able to go home the same day. Recovery time is something like 3-4 days.
Thursday, October 16, 2014
Ears and then some
I had surgery and multiple brain injuries in March, went to rehab for three months ( one month as an inpatient then two months for outpatient therapy ) and was back in school by April. In August I returned to art which was a struggle cognitively. Since September, I've been interning at a local hospital three days a week and going to classes all day on Saturdays and twice a month on Wednesdays. Tonight and all day tomorrow I'm taking some time off for myself.....
I can understand why the neurologist I was seeing at Helen Hayes thought I was crazy when I told him I was ready to return to school so soon after all this mess...I have attention issues, I have to really focus and pay attention to certain things. My energy level fluctuates from high to low. When I have to interact with a variety of people, perform tasks, walking from here to there it take a lot of energy physically and mentally. Technically I'm still in the first year of recovery from a stroke and two brain hemorrhages....
Two months ago I had the hearing in my right ear tested. I could hear a continuous tone, the ear felt full and the sound was diminished. I would also feel a sharp pain inside my ear. I had my hearing tested again this morning and my right ear is almost back to "normal'' I noticed the change recently and wasn't surprised when I heard the news. I no longer hear a tone in my right ear or feel the fullness I had felt before. When people speak, I can hear a slight echo of the voices around me whether it's from the television, or others speaking. Receiving sound inside my right ear is causing me slight pain, i.e. pressing the phone to my right ear. The tonal quality of voices and sounds in the right ear is distorted. Not sure if this will go away. I am suppose to see the ear doctor again in December. I hope in six weeks I no longer hear and echo in my right ear....
Next thing which needs to be fixed is my eye...I see an eye surgeon at the end of this month...
I can understand why the neurologist I was seeing at Helen Hayes thought I was crazy when I told him I was ready to return to school so soon after all this mess...I have attention issues, I have to really focus and pay attention to certain things. My energy level fluctuates from high to low. When I have to interact with a variety of people, perform tasks, walking from here to there it take a lot of energy physically and mentally. Technically I'm still in the first year of recovery from a stroke and two brain hemorrhages....
Two months ago I had the hearing in my right ear tested. I could hear a continuous tone, the ear felt full and the sound was diminished. I would also feel a sharp pain inside my ear. I had my hearing tested again this morning and my right ear is almost back to "normal'' I noticed the change recently and wasn't surprised when I heard the news. I no longer hear a tone in my right ear or feel the fullness I had felt before. When people speak, I can hear a slight echo of the voices around me whether it's from the television, or others speaking. Receiving sound inside my right ear is causing me slight pain, i.e. pressing the phone to my right ear. The tonal quality of voices and sounds in the right ear is distorted. Not sure if this will go away. I am suppose to see the ear doctor again in December. I hope in six weeks I no longer hear and echo in my right ear....
Next thing which needs to be fixed is my eye...I see an eye surgeon at the end of this month...
Friday, September 19, 2014
Post Brain Injuries and then some
Next week I will see the neuro-opthmologist I had seen during the summer. He had suggested I wait until the 6 months after my multiple brain injuries to begin discussing options for surgery.
I am however, getting restless at times regarding my upcoming eye surgery. I know everything will go well, it's just I have to wait until January of next year to have my eye corrected. Which means I'll continue to have double vision until then in addition to the tape covering my right eye. It will be nice to see out of both my lenses.
I have trust issues with neurosurgeons since my surgery in 2009 and the most recent one this past March. Like in any profession, there are good eggs and rotten ones. I have had both good and bad doctors. There is a part of me that knows my shunt won't be put in backwards again. However, there is portion of me which is doubtful and doesn't trust surgeons. It will take some time for me to earn the trust of another neurosurgeon. According to the doctors at Columbia Hospital ( in New York City ) I cannot see a neurosurgeon until I have surgery. In the meantime, I have to see a neurologist. I understand why I need to see a neurologist, however my concern is who will be operating when I come into the ER with an obstructed shunt? Apparently I will have two doctors when this occurs: one main surgeon then a backup for him in case he's not available. I don't think this will happen again for maybe 7-15 years since the shunt it on the correct side now....
My hope is sometime soon, these genius inventors will come up with a way to predict when the shunt is going to stop working. It doesn't make sense I know when the orange juice expires but not when the shunt is going to stop working.....
We need Star Trek technology where you know in five minutes what's wrong with the patient and how to resolve the issue.
I am however, getting restless at times regarding my upcoming eye surgery. I know everything will go well, it's just I have to wait until January of next year to have my eye corrected. Which means I'll continue to have double vision until then in addition to the tape covering my right eye. It will be nice to see out of both my lenses.
I have trust issues with neurosurgeons since my surgery in 2009 and the most recent one this past March. Like in any profession, there are good eggs and rotten ones. I have had both good and bad doctors. There is a part of me that knows my shunt won't be put in backwards again. However, there is portion of me which is doubtful and doesn't trust surgeons. It will take some time for me to earn the trust of another neurosurgeon. According to the doctors at Columbia Hospital ( in New York City ) I cannot see a neurosurgeon until I have surgery. In the meantime, I have to see a neurologist. I understand why I need to see a neurologist, however my concern is who will be operating when I come into the ER with an obstructed shunt? Apparently I will have two doctors when this occurs: one main surgeon then a backup for him in case he's not available. I don't think this will happen again for maybe 7-15 years since the shunt it on the correct side now....
My hope is sometime soon, these genius inventors will come up with a way to predict when the shunt is going to stop working. It doesn't make sense I know when the orange juice expires but not when the shunt is going to stop working.....
We need Star Trek technology where you know in five minutes what's wrong with the patient and how to resolve the issue.
Friday, August 22, 2014
Once more with feeling
I went to a stroke support group meeting on Wednesday and met several other people who had also had a stroke. All of the people except for the group moderator were over age 65. It was nice to hear other people stories of their recovery. A point which was made which I found to be true. There are some people who just don't understand what it means when you tell them you had a stroke. A stroke means the brain's blood supply is blocked or a blood vessel within the brain ruptures. I had a stroke on the left side of my brain. I also had a brain hemorrhage on the right side of my brain. A hemorrhage is when blood from brain trauma irritates the brain tissue. This causes swelling in the brain. Another name for this is cerebral edema.
The reason why I had additional bleeding in the brain at the time was because the ventricular catheter of my shunt was on the wrong side. When it was moved back to the right side of my brain according to the doctors I had an additional bleed on the right side of my brain. In my opinion, I think I had the stroke before I went in for surgery and I had an additional bleed when the ventricular catheter was moved to the right side. I passed out before I got to the Operating Room. I hadn't been given any anesthesia yet, just the IV had been inserted. The stroke it caused traumatic brain injury. TBI happens when the brain is hit by a sudden force or when an object pierces the skull and enters brain tissue.
Side effects of stroke include behavioral changes, memory loss, physical and emotional changes. Six months later, I'm still having some walking and balance issues. I still struggle with the emotional and behavior changes. I'm more anti-social than I was before. On certain days sleeping in past my usual time of 7am is too easy. Which is why I only allow myself to do this sometimes.
The changes in my brain haven't prevented me from continuing the work I was doing before March. It took me seven weeks, but I was able to finish a graphic novel I had been working on since January. In order to get back into illustrating it took me about four months before I was able to continue working on anything. At first it was too overwhelming and having to sit down and draw for various periods of time was too much multitasking for my brain to handle.
The reason why I had additional bleeding in the brain at the time was because the ventricular catheter of my shunt was on the wrong side. When it was moved back to the right side of my brain according to the doctors I had an additional bleed on the right side of my brain. In my opinion, I think I had the stroke before I went in for surgery and I had an additional bleed when the ventricular catheter was moved to the right side. I passed out before I got to the Operating Room. I hadn't been given any anesthesia yet, just the IV had been inserted. The stroke it caused traumatic brain injury. TBI happens when the brain is hit by a sudden force or when an object pierces the skull and enters brain tissue.
Side effects of stroke include behavioral changes, memory loss, physical and emotional changes. Six months later, I'm still having some walking and balance issues. I still struggle with the emotional and behavior changes. I'm more anti-social than I was before. On certain days sleeping in past my usual time of 7am is too easy. Which is why I only allow myself to do this sometimes.
The changes in my brain haven't prevented me from continuing the work I was doing before March. It took me seven weeks, but I was able to finish a graphic novel I had been working on since January. In order to get back into illustrating it took me about four months before I was able to continue working on anything. At first it was too overwhelming and having to sit down and draw for various periods of time was too much multitasking for my brain to handle.
Thursday, August 14, 2014
ENT
I went to see an ear specialist at my local Ear, Nose and Throat doctor (ENT) regarding my right ear. Since returning home in April, I noticed my right ear feels full, there is a continuous tone and the sound quality is slightly distorted and diminished. I thought it would go away on it's own, but it hasn't. Today after getting a hearing test and speaking with a doctor I learned the hearing in my ear will not improve as it has permanent nerve damage from the stroke and traumatic brain injury I had in March. I have two options, I could get a hearing aid for my right ear. I can still hear, but it needs to be amplified by a lot. According to doctor, I have something called Tinnitus in my right ear. Another option I have is to go see another specialist about getting Tinnitus training which could eliminate the tone I hear in my ear through brain training. I still need the hearing aid because of the diminished sound. Since it's been almost six months since the stroke and brain injury the ear doctor said my ear most likely will not improve. Not happy about the hearing being damaged permanently. At least I can still hear with amplified sound in the ear...
Thursday, July 24, 2014
Sexy Patch
I went to see a neuro-opthamologist yesterday regarding my right eye. According to the doctors ( I saw two ) the reason I have double vision five months after my stroke in March of this year is because my right eye has been moved out of place. I had senses it had been shifted since March because when I look at a lamp with both eyes open and tilt my head to the left (for example) the image of the lamp in my left eye will stay in place while the image of the lamp in my right eye will move either up or down depending on if I tilt my head up or down. I was tested for prism lenses to see if this would correct my double vision. The level I would need is a 30.
I had been tested for prism lenses in the beginning of May with a different doctor and the level I was tested at was 30. This means the thickness of the lenses would be about an inch. They don't make prism glasses at that high of a level and thickness. Overall my best option is to have surgery (3rd time this year) to realign my eyes. Since it's been five months I have to wait until the sixth month before any surgery can be done. He wants to see me again in September to look for any changes. He doesn't think anything will change too much between now and the next six weeks.
According to him, anything that was going to heal on it's own already fixed itself. I still have some balance issues and feel a little numbness around my lips and tongue. I'll also have to meet with an eye surgeon during September. I can drive around the county during the day and when it's nice outside for now.
Eye alignment |
Eye with patch |
Glasses with tape |
The eye doctor told me I didn't have to wear an eye patch anymore because I'm not 7 years old. He took some medical tape and attached it to my right lens. I don't have double vision because the tape on the right side blocks me from seeing out of that eye. At the same times no one knows whats wrong with my eye and I'm not sweating underneath the patch anymore. I will use this for now until September.
Thursday, July 10, 2014
Almost..
Right eye as of July 10 |
There's still something going on with the catheter in my stomach. Everyday I feel sharp, throbbing pains where the catheter is both underneath previous revision scars and from the top to the bottom of my stomach. I was given an adjustment in May and that helped alleviate some of my symptoms. I suspect I'll need another when I see my doctor again next month. The challenging part is having to wait until then.
Friday, June 13, 2014
3rd
Scarring from distal revision last month. |
Wednesday, June 11, 2014
Magnets and then some..
Saturday, May 31, 2014
Therapy
I finished therapy yesterday and was given the option of paying to get accommodations for my car so I can drive better. They gave me a driving simulation to see how well my reaction time is. It would be easier if I didn't have a patch covering my eye. Sometime in July (I hope) I'll see another neuro-ophthalmologist about my right eye and I might get glasses to wear while I wait for it to heal. I've been excising my eye in the meantime to help it remember it's not the only eye. Something good has to come out of all of this. I've been sharing my story with radio stations, news, talk shows so we'll see if anyone responds...U survived the last 5 years with my shunt in the wrong way. I don't want the same thing to happen to anyone else.
Thursday, May 22, 2014
Hair growth
My hair is growing back, quickly as usual. Although I'm concerned about the gurgling sounds I hear from the middle of my stomach. These sounds are associated with a bad taste in my mouth. My doctor is aware of this and I'll have to see him again next month. I suspect my shunt is not re-absorbing the way it' suppose to. It was in the wrong way for five years, since 2009 and it's now back in it's correct position on my right side. It wouldn't surprise me if it's having these issues because of what happened over the last five years. Or it could just be because I've had one since I was three months old. Since I can't be compensated for it being in the wrong way, because of the stature of limitations in New York, ( they only allow two years after the surgery to file for medical malpractice). I wrote letters to my state senator, because laws need to be changed. Many people have died from their shunts being moved from it's original location. It's obvious to me, that once this happens all sorts of problems can occur. I've heard stories from other people with shunts whose systems were moved and they started to have all sorts of issues. This should not be allowed to happen.
Friday, May 16, 2014
Eye patch
The neuro-opthamologist examined my eyes yesterday and determined neither one of my eyes has any permanent nerve damage from the brain injury I sustained on March 6. I was happy to hear this news because it could've easily gone the other way ( i.e. color, peripheral vision damage ). He wants me to wait two months before getting prism lenses to wear which would allow for my vision to line up together. It appears my right eye is healing on it's own and it can take months for it to return where it was before. I can continue with the eye exercises, but the reality is my right eye won't sync to the left eye while it's partially paralyzed. I suspect everything else will heal around the same time (.i.e - numbness around my mouth, eye issues ). Not sure yet how I'm going to return to illustrating my books with one eye. It's going to be a challenge, but at the same time I don't have anything else to do while I'm home recovering.
Wednesday, May 14, 2014
9
X Ray Image of distal catheter November 2009. |
On May 12, 2014 I had a revision of the distal catheter which runs from the shunt inside my brain all the way down my neck and into my stomach where the csf is reabsorbed into my system. This will be my 9th shunt revision and 2nd in the last two months. I was told by the Resident who was with me in the OR that my catheter had been calcified. They were easily able to remove the entire thing and it had been leaking behind my right ear and in two places in my stomach. It was also broken near my stomach which would explain why part of it was scraping the me on the inside. They were able to re-attach the new catheter to the shunt in my brain and run in down into my stomach. A small piece in my brain was unable to be removed which they were able to work around. The catheter in my stomach and neck had been in place since 1993.
New Distal Catheter as of May 2014. The one on the right side was the catheter which was cut. New one which was re attached is beside it. |
Since the surgery I no longer have the pain I was having behind my ear, leaking from the catheter into different parts of my body, pain on the catheter, vibrations inside head and bad taste in my mouth.
Cut where catheter was removed from neck |
The stomach internist had to drain out all of the csf which had leaked into different parts of my body such as my intestines. I have four incisions in my stomach and lower abdomen from where they had to remove parts of the catheter and drain out excess fluid. They also needed to make an incision at the top of my neck to remove the rest of the catheter. Additionally the new catheter needed to be attach to the shunt in my brain, so a cut was made there was well.
Sunday, May 11, 2014
Monday
On Monday, May 12th I will have the catheter in my stomach and abdomen revised. Originally when I saw my surgeon on May 6, he had told me I would have the revision scheduled for May 22. The day after my office visit, my symptoms got worse and I contacted their office to arrange for the surgery to take place as soon as possible before May 22. Since 5:46am this morning, I have had cramping in my stomach and abdomen along with feeling fluid leak from the catheter in my stomach and the usual pains I've been feeling in that region. I didn't feel like waiting until the end of the month because I worried about the symptoms and of having another stroke. I don't know if I can handle it emotionally and physically to endure another stroke and the therapy involved in the rehabilitation process. The cramping I had this morning freaked me out because I hadn't experienced it previously. I should be home by Wednesday if not earlier. Thursday I get to see an neuro-opthamologist about my right eye. The right eye will get better the sooner the catheter in my stomach is fixed.
Tuesday, May 6, 2014
Stomach Surgery
5/4/14
Nausea,
catheter pain underneath revision scars starting at 4:36am. Clogging in catheter at 6:56am with nausea
and pain in lower abdomen underneath revision scars at 6:58am. No appetite. Burping too much with pain in
middle of stomach at 7am. Pain in middle of stomach on catheter at 8:45am,
9:15am, 9:49am. Nausea all morning and burning underneath revision scars on
stomach. Pain in stomach and abdomen multiple times during the day especially
burning underneath revision scars in mid afternoon around 3pm. Upset stomach, nausea, pain and cold fluid
underneath revision scars. Felt stomach
catheter clogging during the day.
5/5/14
– Pain underneath revision scars starting at 3am. Upset stomach, nausea and
fluid leaking into lower abdomen. Bad
taste in mouth and no appetite during early morning hours of 7:23am. Pains in
abdomen underneath revision scars and sharp pains in upper part of stomach all
day long. First day ever having continuous pain in stomach and abdomen.
Doesn't sound like it's working to me. I had explained to my doctor my suspicions of the shunt not draining properly based on what I've read online. Since it was in the wrong way for four year, it could have extra cerebral spinal fluid that wasn't reabsorbed properly. It's just my opinion and I surprised no one else has thought of this yet. Technology just isn't there as far as I'm concerned. I had told him numerous times before I had the revision/brain injuries in March I needed a full shunt revision which means changing out the entire system. He didn't listen to me. I took a huge risk learning how to walk again with the catheter broken in my stomach for an extra two months. I had complained about having stomach and abdominal pains for months before it was fixed.
We need to have shunts that at least have the following:
We need to have shunts that at least have the following:
1. Shunts that have expiration dates so you and your doctor know how much time you have left before it expires.
2. Shunts which give off an indication whether it's a light on your arm, head or something telling you it's about to malfunction.
3. Technology advanced like it is was in Star Trek where once you're scanned with the laser gun you have a reading on the computer of what's broken and needs to be fixed.
All these things would make life so much easier for both doctor's and patients. There would be no guess work involved. Because as far as I'm concerned what they're using now ( MRI, CT, shunt tap, shunt series, brain probe, etc.) aren't really looking at the problem. Those things are only able to look at one area. What would happen in the patient couldn't speak and express how they were feeling? Now I'm curious to know who makes the decisions on technology and assessments used to treat this condition.
Tuesday, April 22, 2014
CT Scans and then some...
Correct placement of shunt valve after surgery March 2014 |
Incorrect placement of shunt. 2009-2014 |
For now I'll continue to have the following (minus the headaches):
4/20/14 - Sharp
pains in lower abdomen near ’93 revision scar, clogging in catheter in stomach
multiple times around 3am-5am. No appetite starting at 5am. Bruising in
stomach, upset stomach and vibrations in head at 8:33am. Pain down right side
of neck on catheter multiple times between 6:35am-8:30am. Felt sharp pain
(vertical) on stomach catheter around 9:13am. Nausea and clogging in stomach
catheter around 9:24am-9:25am and again from 1pm-3pm. Experienced pain on
stomach catheter, throbbing and pain in upper/lower area of stomach/abdomen all
afternoon and into evening at 5:57pm, 6:16pm. No appetite all day. Sharp pains
in stomach and lower abdomen at 7:39pm with nausea, pain on right side of neck
on catheter behind ear and vibrations inside head at 7:40pm, 8:16pm, 9pm.
4/21/14
– Vibrations inside head at 3am with sharp pain on right side of neck on
catheter. Surface of stomach sensitive to touch. Sharp pains in stomach on
catheter and lower abdomen near ’93 revision scars at 8:05am. No appetite this morning, nausea all day.
Sharp pain on catheter in stomach at 9:16am with pain in lower part of stomach
near ’93 revision scar and pain on right side of neck on catheter. Pain in
stomach and pain in right side of neck on catheter at 1:12pm. Pain on right
side of neck on catheter multiple times and pain in stomach/abdomen at 2:23pm,
3:04pm, 3: 35pm, 4:11pm, 4:18pm (with bad taste in back of throat) Pain in
abdomen underneath revision scars at 4:21pm. Vibrations inside head at 4:23pm
with pain on right side of neck on catheter behind ear. Pain on stomach
catheter (horizontal) underneath revision scars at 4:35pm, 4:48pm-4:49pm with vibrations
in head at 4:49pm and upset stomach at 4:51pm. Upset stomach, nausea at 4:53pm
with vibrations inside head.
4/22/14
– Bad taste in back of throat and mouth starting at 5am. Pain on right side of
neck on catheter and sharp pains in stomach/stomach sensitive to touch at
6:16am. Vibrations inside head at 6:23am with pain and upset stomach. Nausea at
6:56am with pain in stomach with burping and heartburn. Pain on right side of neck behind ear at
1:45pm, 2:11pm, 2:36pm-2:37pm. Upset stomach and nausea around 2:37pm, 2:41pm,
2:44pm. Pain on right side of neck on catheter at 2:45pm. Upset stomach with
sharp pains at 2:54pm, 3pm. Pain behind right ear on catheter multiple times at
3:19pm. Pain/throbbing on stomach catheter at 3:21pm, 3:53pm ( with nausea in
stomach ).
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