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 everyone,
I'm new to this forum and I'm glad I've found this website. (Sorry if this post is placed in the wrong spot - I don't know the forum-rules - or if my English is not that good!!)
I'm a twenty-five year old woman from the Netherlands, hoping to contact others with IIH or/and with a VP-shunt, so that we can share experiences etc. Also I do hope to make some friends over here and - if necessary - to find someone to whom I can ask for advise.
By the way, is there anyone in this group from the Netherlands or close to it?
I also would like to ask questions and tell about abdominal pain I've got since they placed the shunt. Do I need to start a new topic therefore?
Greetings,
Pann
I'm new to this forum and I'm glad I've found this website. (Sorry if this post is placed in the wrong spot - I don't know the forum-rules - or if my English is not that good!!)
I'm a twenty-five year old woman from the Netherlands, hoping to contact others with IIH or/and with a VP-shunt, so that we can share experiences etc. Also I do hope to make some friends over here and - if necessary - to find someone to whom I can ask for advise.
By the way, is there anyone in this group from the Netherlands or close to it?
I also would like to ask questions and tell about abdominal pain I've got since they placed the shunt. Do I need to start a new topic therefore?
Greetings,
Pann
greenbayfan1
Reply #2 - 10/05/14 11:37pm
" Hi Jazzy -
Thanks so much for your reply. My surgery in mid July was my 2nd LP shunt revision and recovery went well, with the exception of some lung issues post op. I've been feeling pretty good until a few days ago when the back pain started.
The back pain is pretty much constant and is about an inch or so below my shunt. It's really tender to the touch and the same when I touch my abdomen where my tubing is located. I have Fibromyalgia too, so I don't know if it could be that, so who knows?
Is it always tender when you touch where the tubing is located?
My NS is awesome, so I guess I could always leave a message for the nurse to ask him. What do you think?
Thanks again :-) "
JazzyO
Reply #3 - 10/06/14 12:02am
" Hi greenbayfan1,
No, my tubing and my shunt valve was never tender to my touch, it actually felt better when I pressed on the area where I had pain from the tubing because it would kind of shift the tubing away from my abdominal nerves.
I asked my husband who is an O.R. nurse and he said that if it is tender to the touch you should go see you NS ASAP so your surgeon can make sure you don't have any other signs suggesting it might be an infection (not to freak you that it is an infection, but he said it is better to just go in and get it checked out since it is tender to the touch).
So I would make an appt. with your NS and tell them what is going on when you make the appt so they can get you in right away. It is always better to be on the safe side and if everything is all right then at least you know it's not your shunt!
Keep us updated.
Healing hugs, Jazzy "
I don't have a shunt, so I can't help you with experiences about how they work, though I know some people say that they can kink or dislodge. So please, if the abdominal pain is sudden and severe get it checked out.
I am from Canada. I can't think of anyone on here from the Netherlands off the top of my head. I will tell you this though, post questions here...everyone here has been a huge support in my journey and in many other people's here too! We stick together!
There are some nurses, a physician, and others who have found ways to manage their symptoms through lifestyle. Some post interesting research, etc... Keep us posted!
Thanks for your replies. It's very nice to meet others with a similar condition, especially because IIH is rare. Around here there is nobody I know and who has the same condition.
My neurosurgeon sent me to various specialists to examine where the abdominal pain is coming from. It now appears that there is nothing wrong with my organs (Only my spleen is slightly too big. They do not know the cause of it.) but that the VP shunt is irritating my peritoneum. Also there is too much fluid in my abdomen. This gives me a bad feeling. And I hope there will be a good solution for it.
Taleema, do I understand correctly that you also have IIH. How do you handle it ? How is it for you to live with it?
Greetings!! :-)