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, I'm pretty new to the group and am glad I found this site....anyway, I'm having my second LP shunt revision this coming Thursday (March 26). My first LP shunt didn't take enough fluid off and my headaches actually got worse along with horrible tinnitus (constant ringing in my ears plus whooshing sounds, and everyone sounded like they had an echo). I ended up in the ER and was admitted for a shunt revision, in which my NS put in a second shunt with a resevoir (the resevoir is so I don't have to have any more LP's). He somehow connected the first shunt and the second shunt together, but I don't really understand it.
After that surgery about a week later I got sepsis and was hospitalized again...I had a 103 temp and convulsions.
Then I started having low pressure headaches, which are the worst headaches I've ever had. I can stay up for about 2 hours and then have to lie down for about 3-4 hours. If I don't lie down right away then I get migraine like headaches and throw up. I've been dealing with this for over a month.
My upcoming surgery, my NS is going to clamp shut my first shunt and keep the second shunt with the resevoir.
I'm really scared/nervous about this third surgery. I think I'm scared that I will get sepsis again or have some complication. I am so tired of having surgeries and keep thinking, "what if this one doesn't work"? I'm trying to stay positive but for some reason this next surgery has got me rattled.
Sorry this is such a long rant.
After that surgery about a week later I got sepsis and was hospitalized again...I had a 103 temp and convulsions.
Then I started having low pressure headaches, which are the worst headaches I've ever had. I can stay up for about 2 hours and then have to lie down for about 3-4 hours. If I don't lie down right away then I get migraine like headaches and throw up. I've been dealing with this for over a month.
My upcoming surgery, my NS is going to clamp shut my first shunt and keep the second shunt with the resevoir.
I'm really scared/nervous about this third surgery. I think I'm scared that I will get sepsis again or have some complication. I am so tired of having surgeries and keep thinking, "what if this one doesn't work"? I'm trying to stay positive but for some reason this next surgery has got me rattled.
Sorry this is such a long rant.
I would be nervous and scared too. You have been through quite an ordeal and sepsis is a scary thing to go through. I cetainly don't blame you for not wanting to repeat that experience! I might suggest talking to your neuro about your concerns prior to surgery, and also, if you are not comfortable withthis neuro surgeon, is it possible for you to get a 2nd opinion?
Anyway, I wish you the best of luck and will be sending positive thoughts your way in hopes that this will be you third and final shunt revision.
Please let us know how it goes...
Lucy
I am sorry to hear you are going through hell right now. I know about those low pressure HA"s cause I just had my first LP shunt put in on the 5th of this month, and still trying to adjust to it. But I am starting to get nervous because of ALL the revisions I keep hearing about with this. I hope that I will be the exception and not the rule as far as revisions. I would feel the same way if I had been through what u have been through, but keep your head up. Ooh yes I understand about being able to sit up for about 2 hr then Have to lay down cuz it gets to be too much... Be well.
Jazzy
ps. Hi Lucy, my husband, who is an OR nurse, talked with another NS and he said that shunts are more of an art than a science since everyone is diff. on what level their CSF is best for them. But, if I need another surgery I will def. see a diff. NS. Thanks.
Welcome to the group. Sorry to hear about your shunt complications. I too have heard that there is some art to this vs science espenially in light of how it attacks us all differently.
Question...You live in CA, so do I. If I can ask, where is your doctor? I have an apt with a NS at USC on Friday and trying to set up a 2nd opinion apt at UCLA asap. Are you in So Cal?
TJ
Good luck on your appointment this Friday. I have worked at a university medical center before and make sure if you get a resident, that it is a 3rd or 4th year resident, since they know the most.
Jazzy
ps. My Dr's office just called, and he has an emergency surgery on thursday, so I am rescheduled for Friday....ay caramba!
No residents for me. There are supposedly 2 doctors on staff at UCLA that are familiar with IIH (although I cant find anyone who answers the phones who has ever heard of it). Both NSs are past residency years by 2-10 years. It is tough getting in there. Every doctor wants information a certain way before they will even set up an appointment. Then they get the info and say oh thats what you are looking for, no you need to see so and so...UGH. Is this a University thing or just Neurosurgery in general? I hate the fact that I have to teach everyone who answers the phone what IIH is and then hope they are talking to the right doctor and telling them the right thing. This trying to find a good second opinion is turning out to be quite a challenge. Do you think it would be any easier outside of the University system?
Must be comforting to have a spouse that understands medical science and spends his time in the OR. Frankly I cant even watch a needle being stuck in my arm let alone looking inside of someones live (or not) body.
Sorry to hear you have to put your life on hold yet another day but hope it goes well when it finally happens.
TJ
OH and your "what if it doesn't work?" thoughts are very common in my mind as well...
I'm glad you aren't seeing any residents. I know, it is so frustrating to have to teach health professionals about PTC, when it seems like it should be well known by now. I do know the university system is especially frustrating, from working there and also having been a pt., to get to the right person you need, but once you do, it seems to be worth it. The good thing about universities is that they are on the cutting edge of the latest research.
My best advocate has been my neuro-opthalmalogist, who then referred my to my NS. If it wasn't for him and my husband I wouldn't have known who to see.
You are so smart in getting a second opinion. Even though my NS is good, I wish I would have gotten a second opinion.
I hope all goes well at your appointment! Jazzy
I'm sorry you've had to go through the same thing...especially in less than two months! Your body barely had time to heal before you needed another surgery.
Thank you for your well wishes, I hope this is the last surgery for you and me. Jazzy
Thanks for the feedback. Ya, I like the cutting edge part about the University system (but all the knives I have spoken with so far are on the dull side.)
Do you know any of the details about the 2 different shunt valves already inside you?
So Ill be talking to a doctor about an operation that you will be in the middle of having.hmmmm. I think I like my Friday schedule better than yours but then again my day is coming. Good luck for a final revision.
Brook,
How are you feeling? Kind of like an alien birth to a 2.5 lb CSF fuzzball? Did they get everything hooked back up? Did they use the same hardware or replace it? Have all your procedures been outpatient?
Sorry for all the qs but I have a list a mile long for Fridays apt.
Thanks,
TJ
My LP surgeries were inpt.(under general anesthesia) because my NS always gives two doses of the antibotic Vancomyocin that are 12 hours apart, via an IV, that kills all germs, since he wants to decrease the risk of infection (I had a kidney transplant so I am immunosupressed). But I found out he does that for all his pt's. (to bad it didn't work that great for me, but the sepsis was not from my surgery site, so not sure how it happened).
I have a small incision on my back and one in the front, some people get another incision on their side, if they are very overweight. They use those incisions to tunnel the shunt to your abdomen space.
The hardest part of the surgery for me, was the incisional pain for the first couple of days and then it got much better. So I just made sure I took my pain meds on schedule. My second operation he used the same incisions and I didn't have as much pain. I had some swelling around the back incision, but now I have a bump next to my spinal incision, that is the resevoir. He added small clips to connect the shunts and didn't take anything out. He said that he doesn't ever take out shuns, unless they infected. If it is no longer needed, he said he just clamps it shut.
I wasn't supposed to shower for two weeks (to keep the wound dry), and the sutures were the kind that dissolve. I was supposed to "take it easy" for 6 weeks...no lifting, bending over..stuff like that.
From the research I have done, it seems that the main issue with LP shunts is overdraining. Length of the tubing and the shunt valve the NS uses can affect the flow.
Mine are split valves, that open once my pressure reaches a certain level. I read that there are programmable LP shunts? (But my NS didn't know about them.) Sorry if that was too much information for you. Thanks for the well wishes for my final, (yes, I hope) revision and good luck on Friday! Jazzy
Great information and not too much for me. I like to know what I am getting in to. I am very concerned about the over draining issue so this will be a big topic of dicussion for me and the NS. I am a mechanical engineer so I understand hardware and will be asking this guy alot about it. I will not go with someone who does not have programmable hardware experience.
I also was amazed when Duchess first told me her surgery was going to be outpatient.
Thanks again for all the good details.
TJ
I think the surgery is usually done as same day surgery since my other Dr's were suprised I stayed overnight. But not really sure.
I haven't found any NS out here where I live that knows about a programmable LP shunt. I only read about a study done on it in a pediatric journal. But I've seen people post about it. I wish it was more common since it seems to make sense!
:) Jazzy