Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hello my IH family, it has been a while since I have been on and I am sorry for that just life has had my so busy. I have finished my 2 year degree and now am a Medical Assistant YAY!!
I would like to give a small over view of my IH journey before I go into my question as I am sure there are some who may not know me or my story.
I was diagnosed with IH in Oct. of 2010 with and op of 38 was put on diamox and was slowly increased all the way up to 3,000 mg a day, yes thats 3,000mg a day. When the diamox was not working I was sent to a neurosurgeon who decided that a LP shunt might do me some good. My LP shunt was put in on Dec. 29 2011. I spent 4 days in the hospital due to low pressure and another 2 weeks recovering after that. Not long after there were worries of infection as I was still getting headaches so blood work was done and came back negative. The next step was a shunt study which did not go well; they could not access my port in my spine after numerous attempts so they had to do it like a spinal tap instead. I was at the radiology department on and off that day all day. I asked the lady on my way out if she could tell me anything about the results and she said to me that my neurosurgeons office would defiantly be calling me, so I asked he oh thats no good huh and her exact words to me were if its not moving now its not going to. If no one knows a shunt study is when they put in radioactive dye and watch it track through your shunt. So this said to me something was wrong with my shunt.
So as I waited for my next appointment I had an eye appointment where I learned I have loss a bit of upper right vision but she said she believes I will not lose anymore. (Have another appointment Thursday so we will see.)
At my next neurosurgeon appointment they told me that a pocket of fluid was noticed in my pelvis but that they believed it was just waiting to be absorbed. And said that they would repeat the ct in 4 months but in the mean time they wanted me to go back to a regular neurologist to get the headaches figured out as he does not believe they are IH headaches and the shunt is working. WTF.
So I decided on a neurologist in Indy thinking he would know his shit so then I had to get all of my imaging from the hospital and I went through all of it and read the reports as well. The report states that the fluid was noted in the one hour scan and again in the 4 hour scan and that it had grown and was larger as in there was more radioactive dye there. There was also and ct and x-ray report that I had done and in that they stated that there is a worry of a shunt fracture due to the location in the abdominal cavity.
I have had a lot of worries since all of this. I believe that my stomach has grown a bit and I even quit drinking pop and didnt lose any weight if anything I am gaining a bit. I also sometimes feel like my shunt gets tugged and it hurts like if I stretch on that side. The last two days now I have woke up with a feeling like I have just tugged on it all night and it is bothering me all day and my belly just feels full. I just wonder if anyone has any ideas on this.
I am still having about 3-4 bad headaches a week. The neurologist in Indy put my on zonisimide 200mg a day and imitrex when the headaches are bad. I currently also take vicodin at home if it gets bad enough as it is the only thing that seems to work.
I would like to give a small over view of my IH journey before I go into my question as I am sure there are some who may not know me or my story.
I was diagnosed with IH in Oct. of 2010 with and op of 38 was put on diamox and was slowly increased all the way up to 3,000 mg a day, yes thats 3,000mg a day. When the diamox was not working I was sent to a neurosurgeon who decided that a LP shunt might do me some good. My LP shunt was put in on Dec. 29 2011. I spent 4 days in the hospital due to low pressure and another 2 weeks recovering after that. Not long after there were worries of infection as I was still getting headaches so blood work was done and came back negative. The next step was a shunt study which did not go well; they could not access my port in my spine after numerous attempts so they had to do it like a spinal tap instead. I was at the radiology department on and off that day all day. I asked the lady on my way out if she could tell me anything about the results and she said to me that my neurosurgeons office would defiantly be calling me, so I asked he oh thats no good huh and her exact words to me were if its not moving now its not going to. If no one knows a shunt study is when they put in radioactive dye and watch it track through your shunt. So this said to me something was wrong with my shunt.
So as I waited for my next appointment I had an eye appointment where I learned I have loss a bit of upper right vision but she said she believes I will not lose anymore. (Have another appointment Thursday so we will see.)
At my next neurosurgeon appointment they told me that a pocket of fluid was noticed in my pelvis but that they believed it was just waiting to be absorbed. And said that they would repeat the ct in 4 months but in the mean time they wanted me to go back to a regular neurologist to get the headaches figured out as he does not believe they are IH headaches and the shunt is working. WTF.
So I decided on a neurologist in Indy thinking he would know his shit so then I had to get all of my imaging from the hospital and I went through all of it and read the reports as well. The report states that the fluid was noted in the one hour scan and again in the 4 hour scan and that it had grown and was larger as in there was more radioactive dye there. There was also and ct and x-ray report that I had done and in that they stated that there is a worry of a shunt fracture due to the location in the abdominal cavity.
I have had a lot of worries since all of this. I believe that my stomach has grown a bit and I even quit drinking pop and didnt lose any weight if anything I am gaining a bit. I also sometimes feel like my shunt gets tugged and it hurts like if I stretch on that side. The last two days now I have woke up with a feeling like I have just tugged on it all night and it is bothering me all day and my belly just feels full. I just wonder if anyone has any ideas on this.
I am still having about 3-4 bad headaches a week. The neurologist in Indy put my on zonisimide 200mg a day and imitrex when the headaches are bad. I currently also take vicodin at home if it gets bad enough as it is the only thing that seems to work.
Consult another NS, they are the right specialty to deal with this.. Second NS didn't want to deal with original NS's surgical complication. Bad ethics but it happens. I'm so sorry, know this is frustrating but it often takes several consults to get proper NS to deal with all this. Don't wait.
Do you live near a teaching hospital?
Excision or repositioning of the shunt tip with minimally
invasive laparoscopic techniques is usually performed. This
technique in the setting of a noninfected pseudocyst has
proved to be safe, with results comparable to those of a conventional open surgical technique. If infection is present,
the pseudocyst wall should be excised and the peritoneal shunt
tube removed. Percutaneous drainage of the pseudocyst can be
both diagnostic and therapeutic.