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...
Hey everyone, this is my 2nd ever post and I appreciate any/all responses.
I went for my LP shunt on 12/30/14 and the Shunt was placed but the Dr. didn't open it b/c he accidentally tore my colon while tunneling the catheter. So, I'm now on antibiotics and supposed to return later this month to have the shunt opened. Kinda Sux b/c I was told I should get immediate relief with my pressure being so high.
I'm curious who else had opening pressures around 50 ? My Dr. says this is probably why Diamox didn't help me b/c it just didn't get my pressure down enough to notice a difference. He did remove 25cc of CSF during the shunt placement, but I think the pressure came back too quick to notice a difference b/c of the new incision pain for the colon repair.
I can't believe my shunt wasn't opened ! I know that there is a risk of getting a brain infection by doing so with a torn bowel, but at the same time, walking around with a number like 50 is Insane. I'm pretty sure this explains why I have been so ill.
I know this explains my Empty Sella. I wonder why more isn't "Smushed". My ventricles look ok on MRI. I wish I knew how I got this. I'm 46 now and this all started at age 38. I was fine up until then.
I appreciate the Sleep Apnea response. I am trying to lose weight now. I need to lose about 30 lbs total. I do have sleep apnea and I now use a machine. It is set to Auto and adjusts on it's own somehow. My Testosterone is very low at 170 Norm = 350-1300. I just started T Injections for that.
I'm 5'10" tall and about 230 lbs. I was Muscular before all of this and the 30 lbs will put me back to baseline. I might need to lose more.
I'm curious if any of you have noticed that a change in Elevation = a change in symptoms. I'm at about 1400 feet above sea level and when I go to visit my parents who are at about 300 feet above sea level, I seem to do so much better. Far from perfect, but better.
I'm glad I found this group and look forward to sharing more with everyone. Thanks in advance. !!
I went for my LP shunt on 12/30/14 and the Shunt was placed but the Dr. didn't open it b/c he accidentally tore my colon while tunneling the catheter. So, I'm now on antibiotics and supposed to return later this month to have the shunt opened. Kinda Sux b/c I was told I should get immediate relief with my pressure being so high.
I'm curious who else had opening pressures around 50 ? My Dr. says this is probably why Diamox didn't help me b/c it just didn't get my pressure down enough to notice a difference. He did remove 25cc of CSF during the shunt placement, but I think the pressure came back too quick to notice a difference b/c of the new incision pain for the colon repair.
I can't believe my shunt wasn't opened ! I know that there is a risk of getting a brain infection by doing so with a torn bowel, but at the same time, walking around with a number like 50 is Insane. I'm pretty sure this explains why I have been so ill.
I know this explains my Empty Sella. I wonder why more isn't "Smushed". My ventricles look ok on MRI. I wish I knew how I got this. I'm 46 now and this all started at age 38. I was fine up until then.
I appreciate the Sleep Apnea response. I am trying to lose weight now. I need to lose about 30 lbs total. I do have sleep apnea and I now use a machine. It is set to Auto and adjusts on it's own somehow. My Testosterone is very low at 170 Norm = 350-1300. I just started T Injections for that.
I'm 5'10" tall and about 230 lbs. I was Muscular before all of this and the 30 lbs will put me back to baseline. I might need to lose more.
I'm curious if any of you have noticed that a change in Elevation = a change in symptoms. I'm at about 1400 feet above sea level and when I go to visit my parents who are at about 300 feet above sea level, I seem to do so much better. Far from perfect, but better.
I'm glad I found this group and look forward to sharing more with everyone. Thanks in advance. !!
I think I know the problem. I do not trust auto-CPAP. mine said my pressure was 7-8, but upon titration at Stanford, the pressure I needed was 12-13. then, CPAP made me ill because it raised my ICP. I tolerated BiPAP much better. however, nothing really worked because PAP creates a valsalva. I had jaw surgery and it put me into remission. now if I try BiPAP, I have ICP symptoms if my pressure is set any higher than 8/4.5.
meaning, I think that the CPAP you are getting is not enough for your OSA, because the machines are not sensitive to detect all the hypoventilatory episodes which are significant enough to raise ICP. but there is a PAP pressure that reduces your OSA enough to reduce ICP, and a PAP pressure that then starts to increase your ICP. the nadir of ICP at the compromise point will still be an abnormal ICP. the OSA must be treated, but if you find no relief and your ICP is 50, then I don't think your auto-CPAP delivers a PAP that is even close to what you need. I found that a tongue retaining device actually made me feel better, probably because it eliminates the ICP elevation from CPAP. and I think it pulls the tongue off the jugular veins, to allow drainage of CSF.
I'm so sorry about the shunt mishap, that makes me angry for you. I hope that once they can open it, that you get some relief.
The vast majority of us HAVE and most likely always have had other health issues that may not have presented in the past. The tipping point was and always will be our DIET!
As other health impared individuals we simply cannot expect to pump our bodies full of poison and function properly, especially when we have other health imparements.
Get your diet right, and now, no giving in to tempatations, learning food swapping, and becoming a master of additives, preservatives will serve you well. You will become master of your symptoms based on what you eat, your body will tell you what it dislikes.
As far as weight loss goes, while obviously being fit is always great, I personally have lost 96 pounds since 2013, and haven't had improvement, so it is not a cure for everyone.
That said, I too experienced a big drop in my testosterone; and my levels are just under 200. There is definitely pituitary involvement, but I do not have an empty sella. At this point, i still debate the chicken and egg when it comes to hormones and IH. My opening pressure was 36 when I was diagnosed, but I appear to be in remission with an OP of 16, although I still have many of the symptoms, just not to the degree I once did. Anyway, I would really like to get to know more about your history. Do you remember if you were on any medications when you started getting sick? Antibiotics, prostate meds, acne meds, etc?
I suspected Chiari for so long b/c I had most symptoms, but no actual Herniation. However, I do have low lying tonsils. I think they are low lying again from the high ICP, but I do think the pressure came first.
I have several theories about all of this. My shunt will be opened for the first time on 1/21, so this will give me more information then.
You don't have to have 100% Empty Sella. It can just be flattened or semi-flattened. If your T is very low as you indicated, it is obviously being affected. I would love to know how soft this gland is as many times Empty Sella is the only sign of high ICP. And, the literature doesn't even make the direct correlation b/c it can be an incidental finding, but I beg to differ. Incidental or not, it should not be flattened or "Empty".
I'm so sorry to hear about your shunt and I hope everything heals soon without any additional complications. I will keep you in my thoughts during your healing, sending well wishes your way!
I also had an opening pressure near 50, mine was a 46, so I can imagine how miserable you must feel and I sincerely hope you are able to experience relief soon! I am currently in remission, so I don't respond to this group as often, but I'm frequently on daily strength visiting other groups if you ever need anyone to talk to.
As far as elevation goes, it absolutely can have an impact. When I was ill and would travel to the mountains I often noticed worsening symptoms.
I'm so sorry.
Mal
I purchased the new iPhone 6 Plus due to its size and the built-in barometer. It has been interesting to check the thing and relate it to my symptoms during various windows of time.
Check out this altitude calculator (plenty of other interesting pages on this site too):
http://www.altitude.org/air_pressure.php