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...
Had my LP shunt finished 2 days ago. I came home the same day. My pressure was around 50 at time of surgery, but I have NO Relief now that the Shunt is supposedly open and draining.
It does NOT feel open. The pressure in my head is worse now. The brain fog feels worse, my emotions are way worse (can cry on command). I have shaking tremors (Not a real anxiety from a situation, but it's 100x worse then any Anxiety I've ever had. It's 100% a Symptom).
The Pulsatile Tinnitus is now Louder in my right ear and if it's not Pulsing, it's very loud high pitch sound. (It's twice as bad compared to pre-op).
Maybe the Shunt drain tube is Kinked or it's clogged. My Dr. said to walk and sit up straight. He gave me tips to help drainage, but nothing is working. I know the pressure is up still because I took a 40mg Lasix and although I didn't get tons of relief, I had a small ease in symptoms..
Do I just forget the LP and go for the VP ? I hate the fact of anything in my brain and being cut into the brain, but at this point, I'm feeling pretty desperate. I can't believe this is happening to me. I have to the worst luck with this stuff. Years of being misdiagnosed. Why is the fix so difficult ?
How do we confirm the LP Shunt is truly not draining ? My Dr. hasn't returned my calls. I'm scared to goto ER b/c they have been useless all along. They look at me like I'm crazy and I can't act normal when I feel brain damaged. Urgh ....... !
It does NOT feel open. The pressure in my head is worse now. The brain fog feels worse, my emotions are way worse (can cry on command). I have shaking tremors (Not a real anxiety from a situation, but it's 100x worse then any Anxiety I've ever had. It's 100% a Symptom).
The Pulsatile Tinnitus is now Louder in my right ear and if it's not Pulsing, it's very loud high pitch sound. (It's twice as bad compared to pre-op).
Maybe the Shunt drain tube is Kinked or it's clogged. My Dr. said to walk and sit up straight. He gave me tips to help drainage, but nothing is working. I know the pressure is up still because I took a 40mg Lasix and although I didn't get tons of relief, I had a small ease in symptoms..
Do I just forget the LP and go for the VP ? I hate the fact of anything in my brain and being cut into the brain, but at this point, I'm feeling pretty desperate. I can't believe this is happening to me. I have to the worst luck with this stuff. Years of being misdiagnosed. Why is the fix so difficult ?
How do we confirm the LP Shunt is truly not draining ? My Dr. hasn't returned my calls. I'm scared to goto ER b/c they have been useless all along. They look at me like I'm crazy and I can't act normal when I feel brain damaged. Urgh ....... !
Again, I'm so sorry you're going through this. I will continue to keep you in my thoughts and prayers that you're able to get some relief. I had an opening pressure almost as high as yours so I know how miserable you must be. Sending hugs, positive vibes and well wishes your way!
After that first LP shunt I went to a different surgeon and had a new successful adjustable LP shunt for two years before I had CSF leaks. I was finally able to be a candidate for a VP shunt (for a long time my ventricles were to small for a VP shunt). I had the same fears that you had (I actually worked as an Occupational Therapist specializing in people with neurological issues and I was freaked out about brain surgery) but it is actually easier to deal with then the LP shunt plus the the recovery was easier then the LP shunt. It is really not as bad as you think it would be.
Good luck and God Bless. Please keep us updated!