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...
Hey Everyone!
Hope that you are all doing well. I've been trying to keep up on here, but my eyes have been causing me problems again so its harder. But tonight I have been catching up :)
Anyways I had my VP shunt put in August 10th. Things went well this time and I didn't end up with Meningitis again so that was the best part. I was only in the hospital for three days (they wanted me to stay two but I asked for the extra day since my last time was hell I was scared I think).
Now I'm having this horrible neck pain on the right side of my neck and it is near the tubing. It is just really tight and painful... I can't even stretch it out. Then every day at least once I get this horrible pain in my right side up near my rib cage and shoots to my back. I had to go to the ER the other night at 2 in the morning because it was hurting so bad that I couldn't hardly breathe. The pain is just like someone is stabbing me with a knife. They told me that they couldn't find anything and that my labs all looked great... so I looked like an idiot again in the ER :)
So I guess does anyone know what this could be a cause for? Could it be the tubing hitting something in my side that is causing the pain? What would the neck pain be?
Okay sorry this is so long. Hope all is well with everyone.
Sarah
Hope that you are all doing well. I've been trying to keep up on here, but my eyes have been causing me problems again so its harder. But tonight I have been catching up :)
Anyways I had my VP shunt put in August 10th. Things went well this time and I didn't end up with Meningitis again so that was the best part. I was only in the hospital for three days (they wanted me to stay two but I asked for the extra day since my last time was hell I was scared I think).
Now I'm having this horrible neck pain on the right side of my neck and it is near the tubing. It is just really tight and painful... I can't even stretch it out. Then every day at least once I get this horrible pain in my right side up near my rib cage and shoots to my back. I had to go to the ER the other night at 2 in the morning because it was hurting so bad that I couldn't hardly breathe. The pain is just like someone is stabbing me with a knife. They told me that they couldn't find anything and that my labs all looked great... so I looked like an idiot again in the ER :)
So I guess does anyone know what this could be a cause for? Could it be the tubing hitting something in my side that is causing the pain? What would the neck pain be?
Okay sorry this is so long. Hope all is well with everyone.
Sarah
I will never understand the drs position on this pain that most of us get.
They deny all knowledge of it, of having most patients complaining of it.
I ended up in an ambulance the pain was so bad!
From what I know, from reading up about it, personal experience and others as well, it seems, for the most part, a reaction to the csf being in a part of the body that does not recognise it.
The body knows that the csf is suppose to be in the brain and the spinal column.So, when you redirect it, to the abdominal area, it fights it as it sees it as a foreign body. This, of course causes the patient great pain. On a plus note, it does get better and easier as time passes. It will learn to accept it as normal.
The best thing I have found to take to help with the pain is a anti-spasm med. It stops it from being so intense.
The other possibility problem can be, that the end of the catheter which is free floating with in the peritoneal area, can be hitting against an organ, ex, your liver, or it can also wrap itself around an organ.
To know if this has happened it requires a simple Cat scan. The dr will be able to see immediately if this has happened.
It may require a small bit of surgery to fix it but I don't think its a too big a deal to get this done.
As for the neck/shoulder pain, hmm. I wonder, could there be a blockage in the tubing? Altho, I think you would have more pain than you have as well as a fever and confusion.
It could be just the healing taking place. As it heals, it does tighten, which would feel like its pulling.But it should not cause you that much trouble.
Did they do a cat scan in the emergency dept?
As for feeling foolish or allowing them to talk to you in this manner. To Hell With That!
There are some really bad drs out there Im sad to say, but they should know that a person does not arrive at the Emergency dept at 2.00 in the morning for the hell of it!
Go and see your local dr, ask for some of the meds I suggested. Demand they pay attention! You are the one in pain and their job is to help you, not give you a pat on the head and send you home.
If you did a poll here, you would find that more than half of us have had this pain. Take hope tho, it does get easier as time passes.
Changing your position can help as well. I found stretching my right leg out in front of me, stopped the pain at times.
I do hope you feel better soon and that you get the care you deserve! Cath
Thanks so much for the response back. It definitely makes me feel better to know I'm not the only person that is going or has gone through this. I think its just definitely a scary thing because I have never known anyone that has gone through this. Plus I live on my own and 12 hours away from family back home.... so I get scared and that of course doesn't help the pain. I am luckly moving back home for a few months. My apartment lease is up just in time and my dad is stoked to have me stay with him and his wife for awhile... plus she is a nurse :) so that is helpful.
The doctors did want to do a CT Scan but then she was like actually you know what you have had a lot of radiation done from having pseudotumor cerebri, so lets not do one. She gave me some weak meds but its okay.
I tried the stretching and it does seem to help when the sudden pain comes and that does seem to help. I'm going to call the doctor and has him for some anti-spasm meds also.
Have you ever had your tubing wrap around anything?
Thanks so much again!
Sarah