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...
Hi all,
finally saw my new neuro Dr. today (who actually remembered me from when she took care of me in the hospital!). She is really nice and empathetic, but felt bad she couldn't help me anymore since the problem is over shunting.
She said that if I were her sister she would recommend a VP shunt since having so many LP shunt revisions can cause other problems. She is going to talk to my new NS who I see in May. She said he is very conservative and will know the best route to take.
She's going to look at the MRI I am having next week to see if there are any leaks from my shunt. She said that dural tears can happen but they are hard to see.
I was talking to her about how I don't fit the category of the classic PTC pt...just from what I read, and she agrees. She said there is still so much not known about PTC and that the latest theory is that it is from overproduction of CSF and not malabsorption.
she encouraged me to take pain meds (since I don't like them) so that I can function better.
I don't remember much of what she said (thank goodness my hubby was there) but she said when I got my shunt and I still had serious pappila edema she wouldn't recommend to just clamp the shunt and see what happens (since I told her that was what I felt like having done).
I'm in shock about the possbility of getting a VP since my ventricles are so small..so just will wait until I see my new NS to see what he recommends. I really hate this disease.
Jazzy
finally saw my new neuro Dr. today (who actually remembered me from when she took care of me in the hospital!). She is really nice and empathetic, but felt bad she couldn't help me anymore since the problem is over shunting.
She said that if I were her sister she would recommend a VP shunt since having so many LP shunt revisions can cause other problems. She is going to talk to my new NS who I see in May. She said he is very conservative and will know the best route to take.
She's going to look at the MRI I am having next week to see if there are any leaks from my shunt. She said that dural tears can happen but they are hard to see.
I was talking to her about how I don't fit the category of the classic PTC pt...just from what I read, and she agrees. She said there is still so much not known about PTC and that the latest theory is that it is from overproduction of CSF and not malabsorption.
she encouraged me to take pain meds (since I don't like them) so that I can function better.
I don't remember much of what she said (thank goodness my hubby was there) but she said when I got my shunt and I still had serious pappila edema she wouldn't recommend to just clamp the shunt and see what happens (since I told her that was what I felt like having done).
I'm in shock about the possbility of getting a VP since my ventricles are so small..so just will wait until I see my new NS to see what he recommends. I really hate this disease.
Jazzy
Something you said caught my eye. It's about how we don't remember so much what was said, but how we were made to feel. And it sounds like she cares. Hang in there! We're rooting for ya.
Bax
It sounds like there is some hope with this new NS. You have been in turmoil for too long. It will be nice to have someone to lean on for proper care this time. I don't like taking pain meds either due to the side effects, but, if you are in pain you need to take care of yourself. If that means you take these medications for awhile, then you should do it. With all that you've endured it is no wonder that the thought of a new shunt procedure would cause you to worry. Try to take all this one day at a time and know that your husband and your friends are here for psychological and spiritual support. I hate this disease too. And I hate that so many good people have to suffer with it. Tomorrow is a new day...and it can always bring something better than today. (Or at least this is what I keep telling myself.)
- MM3
I would rather them tie off the shunt I have and try to loose 10 poinds. I am 5'9" and weigh between 162-165 pounds. I try to eat a low sodium diet since I can gain 5 pounds in 1 day from the edema...this is from my kidney transplant and all the meds I take.
I think I am 10 pounds over what should be BMI index. what do you all think?
Even though I am only taking 50mg of immuran (a immunosupressent) she said higher doses can cause IH....I wonder if I am just really sensitive to a low dose?
If I even think of getting a VP I burst out in tears.
Oh, oh here comes the tears
Jazzy
I have a VP shunt and the recovery was not that bad. My NS said he does not even do LP shunts because of all the revisions that come with them. If you have any questions about the VP shunt just let me know.
Christie
I really hope your new NS will take a look at everything you have been through, make some sense out of it and then do the best thing for you. I am not entirely sure I have your story right but I am going to play a little devils advocate in the form of asking some basic questions. Let me first summarize my recollection of what you have been through:
First shunt operation resulted in still too high pressure and continued high pressure headaches.
Next shunt operation, an additional shunt was put in for a total of 2 shunt valves inside of you and resulted in low pressure headaches.
Next shunt operation, the first shunt was clamped off so only the second shunt is working inside of you and you are still having low pressure headaches.
Now you are talking about a VP shunt to fix an over drainage issue.
I am going to comment based on the fact that my above sequence is correct.
1) It appears to me that shunt #2 was always the problem. It was put in and the result was over draining. Your NS then thought maybe 2 valves together are the causing the over draining so during the next surgery he clamped off the first one. This however still left you over draining hence my conclusion that #2 was always the problems.
2) If #2 is the problem, wouldnt it be easier to just replace the #2 valve with a new programmable one? This is an easier operation and would allow you to dial it in to eliminate the high or low pressure headaches.
While I agree that a VP shunt has a higher success rate than LP shunts, I believe it is for a different reason than you are experiencing. Your over draining issue does not appear to be LP vs VP related but rather a poor selection in the actual shunt valve used in your LP. The only thing that would change my opinion on this is if your MRI shows a leak somewhere that cannot be fixed.
I am not sure if I am making this clear but I am just wondering why a NS would actually put in a second shunt rather than replace the bad valve in the first shunt and then to start taking about a VP shunt when he hasnt even done due diligence to fix the LP shunt. I would not have that guy touch my head!
I know we chatted about this once before so please dont hesitate to track me down again if you want to talk more about this.
VP shunts may be scary but they are done much more often that LP shunts. However, I would seriously consider finding a good NS that can simply fix the LP shunt you have before taking it out and then starting over with a VP. And also make sure your small ventricals are not going to cause a VP problem if you go that route.
Hope this helps.
TJ
I will try to answer some of your questions.
The second shunt I had was the same as the first shunt, it is just lower in my lumbar area, my husband thinks that since it is placed lower it is draining more.
My NS said that since the first shunt didn't work enough that is why she is recommending the VP.
She has never heard of programmable LP shunts, I will ask the NS that.
She talked about why LP shunts are so easy yet difficult to control for flow esp. since they are gravity controlled.
She was against me having another LP shunt revision, since it would be the 4th time could cause other problems since working in the same area...she didn't go into that, but will ask the NS.
My NS who put in the second shunt said the valve from the first shunt was not the problem....I agree, I had no clue why he put in another whole shunt, so he appears to not really know that much about shunts so that is why I am seeing this new NS, I am hoping he will be able to answer my questions.....he does many shunts for hydrocephalus.
It was just her opionion but she deffered to get a definitive answer from the new NS.
I will let you know what he says after I see him, I'm trying to think of questions to ask him and you have given me some good ideas.
Thank you for all your help!
Blessings, Jazzy
Also my neuro dr. (not my NS) said she rec. the VP shunt since my first shunt didn't do the job.
Sorry, my brain is so scambled at times....I told her about my STM loss and word finding issues but she didn't say anything about that.
It seems that the NS's out here don't know about programmable LP shunts, but hopefully this new NS will.
Jazzy
Thanks MM3, I, of course messed up, because I meant my height to weight ratio, which if I understood it correctly I would need to lose 10 pounds to be where I should be.
Ok Bax, you new avatar freaked me out, lol. I sure wear a mask like that when I go to the Dr.!
Thanks you again for all your help, I am writing down questions for my new NS and you all have given me great questions to ask. Blessings, Jazzy
Well that is exactly what I was trying to do was stir up the pot a little so you go in to the new NS with both barrels shooting.
Let me add a little more fuel to the fire.
Any NS that has not heard of an adjustable/programmable LP shunt is stuck in a 1990s time warp. I would avoid that NS like the plaque. I would actually make that a qualifying question, How any adjustable LP shunt operations have you done?. The first NS I talked to had only done 1 programmable LP shunt in his career and he admitted it took a little longer to put in but also admitted (after I sent him an email accusing him of not being comfortable with programmable LP shunts) that the woman had a low pressure problem and they were able to easily and quickly adjust the shunt to fix the problem (without revision surgery). He then said in his email that he would now perhaps recommend that option for LP shunts. I would be happy to forward his response to all my questions if you are interested.
Next point supporting my highly opinionated stand is that I think you should read the IHRF conference notes about shunts. There are 2 entire chapters dedicated to the subject. They address both VP and LP and specifically state how using non programmable LP shunts that require revision surgery to put in a valve with a different pressure range is the way that things were done in the 90s (their words, not mine). If you do not want to spend the $60 (that goes to a good cause) I will send you mine as long as I get it back when you are done reading it.
Next point is about gravity. Yes gravity does impact operation of LP shunts but that too is a 90s statement. Programmable shunts allow adjustability to deal with factors such as gravity.
The conf notes also reference some patients that end up with many more revisions than you have had (sorry). Unfortunately I recall reading a number that was a multiple of this being your forth so I am not sure what was meant by another LP revision being bad for you.
And lastly there is a whole chapter that talks about memory skills and that how new studies are needed and being designed to evaluate memory and cognitive effects as related to ICP.
Hope this helps with your list of questions.
TJ
Psuedo Doctor
PS. In theory your hubby is right that a lower placement could cause a little more drainage but again this is something that a programmable shunt could easily resolve.
I understand that and aggree about that part of the operation. I was referring more to just replacing the valve portion of the shunt system vs going back into your spine. Do you think that part is leaking or causeing your low pressure?
If you recall Brooke once had a leak and it ended up as a grapefruit of CSF under her skin so she needed revision surgery and I recall they actully had to push the catheter further up into her spine. I only mention this because I would think if your shunt was leaking somewhere other than out the end of the catheter, you would know it.
One other tid bit about the shunts. Using a programmable LP does require the NS to "mix n match" for lack of a better term. They usually start with a "standard" one piece shunt kit and then cut and slice in the programmable valve. That might be why you are having a hard time finding refernce to one online. I was able to find many. Again the IHRF conf note actually have copies of the literature with engineering drawings of how they work for many different brands of programmable LP shunts.
TJ