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...
After months and months of going back in forth because of signs of increased pressure. I'm now in my hospital bed awaiting another procedure and very nervous. I've been through this 5xs since February 2012. Started w/a vp shunt which clogged up after 30days. The. Finally in August 2012 my nsdecided to take a look(I'm guessing Bc he was annoyed by the constant complaints) and performed my first revision. 30days later I returned to have the vp taken out and an lp put in. I was totally against this but the ns swore this was best for my condition. The lp worked for 2 months before the tubing came out of my spinal column so another revision that December along w/a request to be followed by a ns more experienced. After seeing the new ns I found out how truly inexperienced the old ns was. I should have never been a candidate for an lp due to a chiari which has since grown.
After having difficulties getting to the new ns he released me which left with out a ns and frequent visits to the er. Now I'm terribly nervous Bc I don't know this team of drs( they seem extremely experienced) but I can't help but be a little on edge Bc I'm so tired of all this and don't want to continue down this road. They are now taking my lp out and putting a vp in. All of this and what if it doesn't work? Any
After having difficulties getting to the new ns he released me which left with out a ns and frequent visits to the er. Now I'm terribly nervous Bc I don't know this team of drs( they seem extremely experienced) but I can't help but be a little on edge Bc I'm so tired of all this and don't want to continue down this road. They are now taking my lp out and putting a vp in. All of this and what if it doesn't work? Any
Eegads, you've been through the wringer. I'm so sorry.
I don't know a lot about shunts - I've never had one. I do know what it's like to run the long line of doctors and hospitals, getting the incorrect treatment until you finally get the right treatment.
Your NS "released" you? What does that mean? He refuses to treat you? I think that may not align with ethical principles. But it may be for the best.
Are you at a large metro or a large teaching hospital right now?
A long time ago someone in here posted questions to ask your neurosurgeon. Below is a slightly revised list that might be useful to use with your new doctors:
1. How long will you follow my case after I receive the surgery?
How many shunt procedures have you performed?
2. How do you define your role in my care? What specific things would you want to follow or take care of?
3. Who would take care of my longer term aftercare?
4. What is your success rate? What is your complication rate, and how do you define that?
5. I have chiari. Is it causing my IH? What is the risk that this surgery could make it even worse? Are there odds?
6. Do my previous surgeries interfere or risk complications with this new surgery? How?
7. Why a VP shunt?
8. Why will this shunt have fewer problems than my previous ones?
9. Will I be receiving a either programmable (adjustable) shunt? If not an adjustable shunt why?
10. What about anti-siphon valves? What are the pros and cons? Do you recommend them?
11. What will happen to a programmable shunt if I need to travel for vacations etc? Are they easily affected by airport scanners?
12. Can the VP or LP shunt be removed at anytime for any reason after it has been placed into the body?
13. How long is the surgery to install the shunt?
14. After placement what is the estimated recovery time?
15. How long will I have to be in the hospital?
16. How quickly will my headaches and other symptoms go away?
17. How long after can I resume normal activity? Will I be able to drive?
18. What are the risks involved with having shunt installed.
19. What are the chances for a shunt malfunction?
20. What are the tests performed in the hospital to determine if the shunt is malfunctioning?
21. How will I physically know if the shunt is malfunctioning?
22. Do you think surgery to correct the Chiari is necessary? If not, at what point would it be necessary?
23. If your wife (or husband) was having this surgery, what would be the most important points YOU would consider before advising her (him) on what you think she (he) should do?
And finally...
24. Your plan sounds like a good one. Just for my piece of mind I'd like a second opinion before we proceed. Is there anyone that hasn't already consulted on this case or heard the facts that I can bring in for a second opinion on my case?
My thoughts, hopes, and prayers are with you. Is there someone physically sitting beside you and helping you?
You know it IS going to be okay. Your new doctors sound so much better than your old one. Hopefully they practice team medicine and there's more than one brain working on your situation and the plan.
Skilled hands ARE going to patch you up and you'll feel like a new woman!
Having a doctor you can trust makes a huge difference in achieving peace of mind. I have had some issues with that lately (though to a lesser extent) and it can be very anxiety inducing to feel there is no good plan in place or to know who to turn to in order to get the best help that you need. So sorry for your past struggles, and glad your current team sounds much better! Good luck today!
Hugs to all and best wished