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...

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Lp shunt?

Notalone4
Notalone4
Hey all, been gone 4 a while....Been through so much I really don't know where to start. In Feb. I had a vp shunt placed within a month it clogged off. My ns decided to wait and see if it would corrected itself and of course it never did, So in Aug. he replaced with a different type, one that was supposedly fit for people with smaller ventricles(which is the case for me) .By my 2 wk appt the newer shunt clogged off as well. So the ns decided an lp shunt would be better for me... Oh, what an experience. He took the vp out and placed an lp in. So, So painful, but I think I've healed pretty well until a couple of hours ago I started experiencing alot of pressure in my lower back when ever I get up(sitting/standing). I'm so worried. I don't know if anyone can relate, but the pain feels like back contractions or pressure I felt once during a blood patch as the dr tried to squeeze as much blood as he could down my spine to make sure he covered any leaking holes. If anyone has experienced anything like this please tell me what could be going on. I'm afraid of getting cut again and am really exhausted with this whole process.
deleted_user
deleted_user
Wow I just noticed my post showed up about a million times. dont know why lol. sorry bout that.
deleted_user
deleted_user
Wow I just noticed my post showed up about a million times. dont know why lol. sorry bout that.
Notalone4
Notalone4
Hi Christy, I'm so sorry for all you going through right. Fortunately it's very familiar to me & I'm glad to inform you it gets much better. I was upset post OP because my ns told me it would be a piece of cake compared to the VP shunt, which was the biggest lie ever.Unfortunately it is a part of recovery & the way they explained it is that during the procedure a lot of the fluid was drained causing extremely painful low pressure headaches. Although very painful it will get better. It took me a few weeks for them to be tolerable. I stayed with my mom because I couldn't even tolerate being upright for more than five minutes. While dealing with being in bed for what seemed like forever that became so uncomfortable especially the area where the shunt was placed. If you need anything else plz feel fee to contact me.

Toya
deleted_user
deleted_user
Hi its Christy again. Wanted to add an update. Maybe this post wont show up a hundred times like my last two lol. It has been 9 days since my LP shunt placement. Yesterday was the first day I was able to sit up for longer periods of time with minimal headache pain. Today I woke up with zero headache.. It is a miracle to me. I also wanted to say about how my surgeon was not compassionate about my pain at the time I called my neruologist and he was very sincere for me. He wrote me a prescription that helped ease what I was going through. It was a very strong narcotic but thankfully I do not need that type of med yesterday or today. The NS had called me in a script for a medicine called fioricet yesterday and for the minimal headache I was having it did give me some relief and it is a non narcotic incase you want to check into that one. doctors dont mind giving that out since it is not a controlled substance. It is basically a combination of tylenol, caffeine, and butalbitol. The butalbitol will really help ease neck pain I found. I have not had to take anything today and I feel so blessed for that. I had to deal with doctors treating me like a drug seeker when I was in severe pain so I know what that is like and how frustrating and heartbreaking it is to be written off in that way. If one doctor is not helping you then you can find another one and eventually there is one out ther who will.
Now having said that I am headache free today there is still one thing that has caused me some concern. The loud heartbeat sound has returned in my ear so I dont know what to think of that. Im hopeing its just another way my body is trying to adjust to the shock of having the huge pressure changes.
I did want to offer you some positive information that even though i suffered for a while with the low pressure headaches they did go away. atleast for today anyway so there is hope.
deleted_user
deleted_user
There is one more thing I wanted to add about what you said about having the muscle like contractions in your back. I was fortuanate that my back pain and two abdominal incisions did not give me allot of pain but I did have muscle spasms in my back. They gave me Valiume for that and it gave me minimal relief but it was just enough to get me through. Im sure from what youve described your pain was much worse than what I dealt with but I didnt know if they tried that med on you yet or not?
Notalone4
Notalone4
Thanks for the advice! I had no idea forever wasn't a narcotic. I silk definitely look into that one. My back pain is much better still have limb weakness & occasional but able to deal. I too have occasional high pressure symptoms but they seem to level out from tinge to time. Thank God that you have been pain-free, weird isn't . Hopefully there will be plenty more. Keep in touch & let me know how things are going for you.