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 you guys!
I'm looking for advise. And I would like to see (read) if there are others with similar pains.
About two months ago, the neurosurgeon has constructed a VP shunt to me. Unfortunately, since then I have been suffering from a stabbing pain in my abdomen. One day it is hurting on the left side in my belly and my left shoulder is hurting at the same time, the other day the same thing at the right sinde and after a while I feel the same pain at the very bottom. The pain circulates. And not a day goes by that I'm pain free. Also (this is a bit awkward to tell, I think) I vomit quite often, this goes with dizzines and sometimes headache. It is terrible and it now frustrates me enormously. Especially because it takes so long and it doesn't reduce.
My blood tests are normal. It seems the shunt is working fine, because my my papilledema is as good as gone and the scan of my head shows everything is fine with my ventricles (Lucky me!). ;-)
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 makes me feel bad and worried.
Next week I see my NS again and then I'll find out more. But I already heard of a few options. They can shorten or shift the tube, change the shunt in a VA shunt or put the distal end near the lungs.
I wonder what the best option would be. Also because my body does not absorb the fluid that quickly. Will it be better near the lungs or will it accumulate there? What are the risks of a VA shunt? Can the NS shift or/and shorten the tube and will that solve the problem?
I would be glad to find someone who knows about this or has experienced the same thing. Sorry if my story is a bit long.
Thanks for reading it anyway! :-)
I'm looking for advise. And I would like to see (read) if there are others with similar pains.
About two months ago, the neurosurgeon has constructed a VP shunt to me. Unfortunately, since then I have been suffering from a stabbing pain in my abdomen. One day it is hurting on the left side in my belly and my left shoulder is hurting at the same time, the other day the same thing at the right sinde and after a while I feel the same pain at the very bottom. The pain circulates. And not a day goes by that I'm pain free. Also (this is a bit awkward to tell, I think) I vomit quite often, this goes with dizzines and sometimes headache. It is terrible and it now frustrates me enormously. Especially because it takes so long and it doesn't reduce.
My blood tests are normal. It seems the shunt is working fine, because my my papilledema is as good as gone and the scan of my head shows everything is fine with my ventricles (Lucky me!). ;-)
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 makes me feel bad and worried.
Next week I see my NS again and then I'll find out more. But I already heard of a few options. They can shorten or shift the tube, change the shunt in a VA shunt or put the distal end near the lungs.
I wonder what the best option would be. Also because my body does not absorb the fluid that quickly. Will it be better near the lungs or will it accumulate there? What are the risks of a VA shunt? Can the NS shift or/and shorten the tube and will that solve the problem?
I would be glad to find someone who knows about this or has experienced the same thing. Sorry if my story is a bit long.
Thanks for reading it anyway! :-)
I am almost exactly going through the same thing you are only slightly different. I have extra tubing in my abdomen that is free floating and has developed extra fluid around it. This tubing then irritates the wall of my abdomen as well as organs too. I have been told to schedule with a general surgeon who can take it out. The tubing has also been causing me off and on again fevers.
In your case I believe you are absolutely right, the tubing needs to be shorter be redirected to a different location besides your abdomen...especially because you are having a build up of fluid. Just curious might you be allergic to your CSf? Sometimes that is the reason for extra bloating.
Best to you.
Mal
Thanks for your comment. How sad to hear that you have to experience this too. You write that you schedule with a surgeon who van take it out. Do you mean taking out the entire shunt or just the tubing in the abdomen? That makes me wonder: Is there a possibility that people with a shunt and IIH will ever be able to live without the shunt and could the high pressure go away by itself? That would be great I think! ;-)
I would like to hear from you again. Can you keep us updated?
I wish you all the best. And I believe that in the end it will all work out well for you and for all of us! :-)
Thanks for your reply! Wow! Seven years is a long time to have that sharp stabbing pain in your abdomen. How do you deal with it? Do you have the pain daily, is it really constant? And do you have the shunt because of Idiopathic Intracranial Hypertension?
Well, I talked to my neurosurgeon last week and he mentioned a VPL-shunt, ventriculopleural shunt. He wants me to wait a few more weeks to see if the pain gets less (I doubt that, but you'll never know). If the stabbing pain doesn't go away or become less frequent he will take the tubing out of my abdomen and put new tubing from the valve on my head to my pleural cavity. He says that it is useless to redirect or shorten the shunt, because it will still irritate the peritoneum and the organs. A VA-shunt is no option for me, I heard, so this is my only chance to be released from the stabbing pain.
To be honest , I fear new surgery. And I'm a bit scared that once I will have my VP shunt changed to a VPL shunt I will get the same sharp pain in my chest. Then what?
I also see against surgery because I have been operated more than once. And of course there is a risk of complications.
But on the other hand, it could just as well be able to work. The thought of a stabbing-pain free life puts a smile on my face! A life without this pain this would be better than great! :-D
You should really discuss this issue with your neurosurgeon. Perhaps you can mention a VPL-shunt or something like that. I don't know about your situation and what the best option for you would be. But just let the neurosurgeon know that you don't want to live with this pain. :-) They used to use this method (ventriculopleural shunt) quiet often before, so it's not a new type of shunt.
I hope to hear from you again. And I wish you all the best! :-)
So, so sorry I'm late to get your message. I just had surgery to remove shunt tubing that had broken off during a previous vp shunt revision. So basically I had tubing coiled up against my bladder and a complete shunt tube that goes from my brain to abdomen. I am feeling much better already. No more fevers, lower abdominal pain, etc. I know for a fact that shunt tubing can irritate the lining of our abdomenal wall causing pain and irritation.
Have you made any progress with your doctor believing you? If not, go see another NS or ask for a referral to general surgery. After all it is the general surgeons job to cut or move the tubing, not a NS's job.
Best to you.
Mal
I would think that making the shunt tubing shorter would help, at least before they would try a VA shunt. Keep us updated. Blessings.
Sorry for my late response.
Sad to hear that you had surgery. But it's great to hear that you are feeling much better now. It's been a while since your post, are you still doing fine? Is the abdominal pain gone? I hope it is.
It's so weird that things can go wrong, so we actually need surgery again while that didn't have to be necessary!
I think it's very brave of you that you insisted and underwent surgery again.
In my case, the pain sometimes is away for a few days and then it suddenly comes back to torment me for at least a week. The days that Im free of pain I don't want to even think of surgery, but I know that it will come back and that I more often live with pain than without it.
Therefore, the neurosurgeon and I have decided to change the VP shunt into a ventriculopleural shunt (this is his idea). There are some risks involved, but I think this is the best option for me. Probably I will have surgery next week.
I would like to talk to more people in the same situation. Is there anyone who had a VP shunt and had pain and is now having a PLEURAL shunt?
I 'm afraid now the pain will stay away a few days longer and that I'll undergo surgery for nothing. But on the other hand, it's also possible that if I delay surgery the pain will come back suddenly.
I think it's a difficult situation. Does someone dare to advise me? ;-)
1greenmnm, I wish you the best!
Thanks for your response! It's great that you hardly get the pain anymore. I tried that, put heat on the part where it hurts, but it didn't work. Nothing seems to help. It's just that some days I don't have pain, but usually I do.
My neurosurgeon thinks that shorten the tube will not help. That's why he wants to change my VP shunt into a ventriculopleural shunt (in the pleural - chest - cavity near the lungs). He will probably do that next week. And the surgery is of course not without risks. I'm a bit scared of that.
But also because now I'm having my pain-free-days and I think: "What if I won't feel any pain in the hospital and undergo surgery for nothing?"
On the other hand it's possible that if I delay surgery, the next day the pain will be back in full force! So I'm a bit stressed about that.
I would like to know what the best thing for me to do is.
How often do you get these pains now? Do you avoid certain things to not get that stabbing pain?
I wish you all the best!
Did you have your surgery? If so, I hope you are feeling much better and out of pain!