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Pseudo Tumor Cerebri / Lumbar Shunts

Jan 24, 2008 - 25 comments
Tags:

PTC

,

Tumor

,

shunt

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lumbar

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cerebri

,

syndrome

,

menieres Disease



Hi My name is Adriana and I live in Phoenix, Arizona. I'm 31 yrs old. When I was first 22 I was diagnosed with PTC. I had no clue as to what was going on! and pretty much still don't.

A few years after my lumbar shunt surgery, I started getting dizzy spells and severe vertigo. I was diagnosed with Meniere's Disease (Syndrome). I have lost significant hearing in my left ear and in the past week started experience a fullness or hollowness in my right ear. I'm afraid that the Meniere's is acting up again or that the shunt is malfunctioning and may need to be replaced.

Has anyone else experienced and or think that the Menieres is related directly or indirectly to the PTC??

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by dmoncus, May 17, 2008
Hi, my name is Donna and I have a 12 y/o son with PTC  they say that it is rare in young boys and just informed me that he will need a shunt  I was wondering how you have done since the shunt and has it helped in the pain level.


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by mamita00, Aug 06, 2008
Hi Adrianna, nice to meet you. My name is Kim. Sorry I don't have info on Meniere's Disease. I would like to as you about the shunt, though. What was it like having it done? Where is it? Was it a difficult decision to make?  I'm almost maxed out the Topamax, already done so on the Diamox and take Neurontin three times a day. My neck hurts so badly as well as my head and I live in sunglasses. The neurologist says after the next tap perhaps we should do a shunt. Not a for sure, a thought at this moment. I want to know more about it/them.
                                                     Thanks

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by anc8469, Dec 26, 2008
Hi Adrianna, my name is Ashley and I'm 15 I've been dealing with PTC since I was 12. Its very rare anyways but ever more rare in younger children. I've had 15 shunt surgeries so far, and I've had about 30 spinal taps (Lumbar puncture). My Neurologists have tried the Diamox on me before and it didn't help when they first diagnosed me. They tried it again after they put in the shunt and it helped. My Neuro-Surgeons say I have a very hard disease to treat and I'm the most complicated that they have seen yet. I go to Vanderbilt Childrens Hospital and they have one wonderful in treating this and staying on top of things.

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by Eye8863, Mar 08, 2009
Hi
I have just had my 3rd shunt surgery in 4 months.This time the doctor put a control switch in my abdomin that can be adjusted with a magnet to either increase or decrease pressure. I'm hoping this works because this disease really *****!

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by mert656, Apr 09, 2009



Hi,
I am Mariann I am 36 and have had PTC for 14 years. I spent a year with spinal taps and in pain then I had a shunt put in my lumber area. I had the surgery because I didnt wont to live in pain anymore and I was going blind in my left eye. It had gottin so bad I couldn't get out of bed. With the shunt and meds I was back to my life in 6 weeks. I still have headachs, neck pains and some eye problem. Not even close to what is was.

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by jqualls, May 27, 2009
Hi-

My name is Jenna, and am 24 years old.  I was diagnosed with ptc about 4 years ago.  I have battled severe headaches and feeling dizzy...  almost like a car sickness feeling all of the time also.  I finally decided to have a Lumbar Shunt surgery after exhausting all other options including medications that made me very sick, and also numerous spinal taps which also made me very sick!  I also had Chiari surgery at the same time.  I just had a mild Chiari, but if I didn't have the Chiari surgery done along with the Lumbar Shunt it would have caused it to become worse from the spinal fluid being drained, which would have pulled my brain further down into my spinal column.  It's been about 6 weeks since my surgery, and my headaches are tons better...  most days none at all!  The dizzy car-sick feeling is also tons better!  The only problem I am having now is with the tubing.  I have had terrible sharp stabbing pains in my stomach and pelvic area!  The doctors keep telling me this is normal and will take a little while for it to scar down...  but I'm in agony!  Has anyone had any of these problems with the tubing after the Lumbar Shunt surgery, and if so how long did it take to settle down?  Any information would be great!  Thanks so much!!!    

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by bsolberg, Jun 21, 2009
Hi-

My name is Bethany and I am 29.  I was first diagnosed with PTC at 16.  It went away for a while then came back 2 years ago. I have had at least 20 spinal taps and my back can't take it anymore. I finally had the lumbar shunt placed in December.  I didn't have any headaches for two months after surgery and then they came back.  Now my pappilodema is coming back and I am back on the diamox and feeling miserable.  The surgeon who placed the shunt insists it is working, but now a different surgeon is going to do a revision.  I just want to get back to having some resemblence of a normal life again.  I wanted them to take the lumbar shunt out and put the other kind of shunt in my head, because they can adjust things on it.  The new neurosurgeon I met with was rude and completely inconsiderate.  I am just wondering if doctors are ever going to treat this like the life altering disease that it is.

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by orangehsmiles7, Aug 15, 2009
I am 33 and after about 20 years of severe headaches and no relief I started having vision changes. I woke up one day and while taking a shower basically felt like after weeks of seeing black that I was unable to get the fuzzy sleep out of my eyes so i went to urgent care. I spent 11 hours that day going from one doctor to the next with all of them in a panic that this is something that has to be done taken care of now attitude to a 3 week wait to get into the neurologist. While the man is nice enough as we all know this is ot a common illness so most do not know how to handle it. I have been there for the past year and a half. Until Last week when I decided it is time to take the next step. I have daily headaches, dizzy spells, blackouts- in the sense for 30 -60 second intervals i cannot see, black auro around things, and the list goes on.
I went into the doctor and let him know that its time to take the next step. I have been on diamox for the last year plus+, been through 5 spinal taps, and endless doctors visits. I do not want to lose my sight and alll the reservastions the doctor has is no longer acceptable to me..
I want to move to the next step and see if I can get some relief.
Tuesday I have an appointment for scheduling the shunt..and then its off to the eye dr. to set up the optic nerve windowing.
wish me luch...
Heatheer

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by indian684, Oct 16, 2009
Hi guys! My namsehe Angela, I have a sister with similar condition as you all. she's been diagnosed with pseudo tumor
cerebri 5 yrs ago, after that she had a shunt put in to place but after a year and half the doctors had remove it because
it had cause a bad and hse almost died from gangreen. She is getting sick again worst than before. In my opion it seems
a if the shunts cause more problems that good or I may have that this out of frustation it just seems as if thids disease is
here to stay and not going any where.I was just wandering if any one could recomend a Neurosurgon that can help her any
way can reach me a ***@****. Than you. I will be praying for all of us that is going through this in one way or
another.

Angela

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by Adriana853, Oct 18, 2009
Hello all... I've gone back and re-read your entries to my posting and I wanted to give you a few more details.

After being diagnosed with PTC, I searched and searched the internet for clues as to what this disease is. Do not give up hope.

I live in Phoenix, AZ and there is a neuro surgeon by the name of Dr. Harold Rekate, he works out of the Barrows Neurological hospital. He specializes in shunts but in pediatrics. Although I was not a child when this happened (I was 22yrs old) he did my surgery because 10 years ago this was extremely rare disease. My own family doctor couldn't diagnose what it was. He tried by giving me pills at first. He thought it was migraines, then when those pills didn't work, he thought it could be hormones (I had just had my daughter) so he gave me hormone pills, still didn't work. He did CT scans, MRIs, and several spinal taps to no avail. The breakthrough was that the hospital never checked for PRESSURE while doing a spinal tap!! Please make sure to ask what the pressure of the spinal fluid is in your spinal tap. Once that is established they will know to do a shunt. The lumbar shunt worked for me and continues to work for me after 10 years.

I no longer have headaches like the ones I had before my shunt. I have learned to diagnose my headaches. Are they tension headaches? Stress? Hunger headaches? Seasonal allergy headaches? I have learned to listen to my body. I go thru a checklist of items when trying to decide if my headaches are because of my shunt. If for what ever reason I feel that it's because of my shunt I go in for a check up. Like any thing that is manufactured, it can and will one day need to be replaced.

The lumbar shunt I have is composed of three pieces. The first tube goes up my spine, there there is a t section that connects the first tube to the second tube. This section has a little ball that rolls when I lay down and rolls back into positon when I stand up. This is what regulates the spinal fluid from draining. The second tube went around my midsection and drained into my stomach. BUT I kept having a lot of problems with this tube coiling and attaching to the inside of my belly. I could always tell when it did that coiling thing because it would bulge very noticeably. I had to go back twice to have them uncoil it but after the second time the surgeon decided to take out that tube and just leave enough of it to drain into my pelvic cavity. It's been working ever since.

It's late and I'm going to bed now, but if you have more questions let me know how I can help you.

Adriana

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by Shanredfrog, Apr 02, 2010
Hello Everyone,
   My Name is Shannon and I have been dealing with all of these things you all have been through. They diagnosed me 4 yrs ago and have had me on all kinds of medications and done several LP's. I am at my wits end with this. I have a 5 yr old son I can't play with like I used to and this condition triggered so much to go wrong in my body. I have finally decided to let them do the shunt surgery but because I have pre-exsisting  conditions with my back, they will be placing the shunt in my brain. Also partly because I have lost 85% of my vision. I am very scared about this surgery and the life I will lead after with my son. So I guess what I am asking is after the surgery that I am having with them going through my brain and not my spine, How has that particular surgery worked out for people?

I shall pray for everyone going through this and their families for strength :)

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by Brendasoo, Apr 12, 2010
Shannon,
My daughter has had six surgery's. Her Dr. in Phoenix told her he couldn't do anything else. Are there other places in the U.S. which treat this condition?
Thank you,
Brenda

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by lmh0426, Apr 30, 2010
I am so amazed that there are so many of us going through the same things.  I have ptc and I have also had 4 embolizations for a davf in my brain.  Nobody can say if the ptc was a result of the problem with the fistula.  I take 6/250 mg Diamox a day and I still have to have lumbar puncure (spinal taps) every 3/4 months.  I was also told to have a shunt placed.   Not sure if I should do it or not.  I welcome all advice from anyone who has had shunt placement.  Good luck to you Shanredfrog!  Hope things went well for you!

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by Adriana853, May 01, 2010
Hello my friends,

I don't want to scare you away from considering the shunt but it was a very painful surgery for me.
The deciding factor was when I started to lose my vision. That was the scariest thing of all. I went to my PCP, he noticed something in my eyes so he sent me to the Opthomalogist and from there I was sent to the Neurologist who admitted me to the hospital thru the emergency room.

At the time all of this was happening, my daughter had just turned 1 and being a single mom, it was so very hard to decide to do the surgery but I grabbed on to anything that I thought would help me. For me, the shunt was a life saver. I was tired of getting the spinal taps once every couple of weeks. It was hard. When I came out of surgery the morphine wasn't working and they'd just given it to me, so they gave me Demoral in conjunction and that made me hallucinate but it was enough to make the pain go away. It was a very terrifying time but now it's 10 years later and I've been doing great. I have headaches every once in a while. I am on a low caffeine/sodium (salt) diet and every once in a while when I've over done it, I will take a diuretic to help expell the excess water retention (especially around the time of my menstrual).

A few years after my shunt surgery I was diagnosed with Meniere's Disease. Extreme vertigo, vomiting, ringing in the ears and partial hearing loss in my left ear.  I do not know if these two diseases (the PTC and the Meniere's) are linked but I have a very strong suspicion they are. That one caused the other. I have asked Dr. Rekate (my neuro-surgeon) about the possibility but while there may well be a possibility, there is nothing to prove that it was or is linked.

Has anyone else developed Meniere's Disease after or even before being diagnosed with PTC?  I'd like to hear your thoughts.

Adriana

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by Kshay90_09, Jun 13, 2010
Hi,

My name is Amanda, and I am 19 years old. I was diaganosed with PTC when I was 17, 2 years ago. I have had 7 spinal taps, and a blood patch as well. I'm considering getting the shunt tube, the doctors have even suggested Optic Nerve Sheath Fenestration, but there are no doctors in my area who do that surgery. The Diamox makes me so sick that I can barely get out of bed or function while taking it. My neurologists actually said that my initial pressure was the highest he had ever seen, it was 560. I'm worried about the shunt tube surgery because of the fact that they tend to malfunction and have to be replaced often. But after reading this i'm really thinking i'm going to go ahead with it. My PTC got better for a while, but then as time progressed got worse. And, is now as bad as it was when I was first diagnosed, I can go 5 minutes without being able to see, like a bright light has been shined into my eyes, and I have constant headaches, especially driving at night with passing cars headlights shining in my eyes. I barely talk because when I do that even induces a headache. I hate the fact that I have a disease that they have no idea what causes it, and exactly how to cure it. The treatment is painful as well as the disease itself. I've actually had to begin being sedated while spinal taps because there is so much scar tissue they hit every nerve possible while doing the taps. Thank you for writing this, because it has honestly helped me make my decision. No decision is easy to make when considering surgery, but it's even worse when it's dealing with your brain, spine, or eyes! Thank you for writing this.

Amanda

Best of luck to all of you with PTC. It is a very hard thing to live with, and very scary as well. I wish all of you the best, and even though I don't know you, you're all in my prayers.

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by cheryl307, Jun 30, 2010
Hi,

My name is Cheryl, I am 38 years old and have PTC.I had a lumbar shunt put in four weeks ago. I felt better istantly when I woke up from surgery.  The pressure was gone and my head felt clear. I started having severe abdominal pain a week after surgery. I went to the ER and they removed my appendix. The pain came back and I was told to go see an OBGYN and had an ovary removed. I am affraid since I never had this pain before the shunt that it is related and will resurface. This pain in my stomach area is so unbearable that morphine doesn"t touch the pain. Has anyone else had these stabbing stomach pains?

Cheryl

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by amandalowrance, Aug 26, 2010
My name is Amanda. I am 23 years old. I was recently diagnosed with PTC. I am also 5 months pregnant. I went to the eye dr to get some glasses and she found that I had papilledema and referred me to a neurologist. I had been having headaches but no vision problems so I wrote it off as normal pregnancy headaches. The neurologist ordered MRI and LP. The lp was horrible! My opening pressure was a 45 (or 450).The doctor who did it didn't even measure my closing pressure or how much spinal fluid he took off. My neurologist was not happy. 2 days later ended up in the hospital with extreme headaches and vomiting. Spent 3 days in the hospital with most of my nurses and the on call doc not knowing was PTC was! I was given Dilaudid and anti nausea medicine for pain and discomfort but never treated bc my neurologist was on vacation!!! I am just starting with this illness and I am wondering what is in store? I can't have any of the pills or surgery since I am pregnant. Can anybody give me some advice? I haven't found another PTC patient who is pregnant either.

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by jazziesmom, Aug 31, 2010
My name is Kristin.  I am 30 years old and was first disgnosed with PTC in 2008.  I thought it had past since I had 2 spinals done and the doctor nor I every thought about it again until a couple of months ago when I went to see the neruologist and he noticed that it had come back or in my case never left and has been untreated for 2 years.  He put me on Diamox, however, I can not function with it due to it making me sick and I feel like I have jumped in a swimming pool with all my clothes on and gotten out.  During the past 2 years I had come use to the headaches even though I wished I didn't have them.  2 weeks ago my doctor told me the next step for this was surgery.  I thought I could just have another spinal done and keep taking the meds and deal with the side affects until he told me I would go blind and the the more spinals you have done the more at rish you are of infection.  So, currently I am waiting to be seen at Vanderbuilt Medical Center in Nashville, Tn.  I do not know what to expect or what type of surgery they will perform.  I know that my doctor had told me about "brain surgery" where they put the shunts in, however, I also read on here about the other type of surgery where they go in thru the eye.  For those who have had the surgery either one, could you please tell me what to expect.  Such as, how long the recovery time is, how long do you stay in the hospital, and what not.  

Thank you to all who have shared their stories so far and my prayers are with you all.

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by India02, Sep 24, 2010
Hello,

My name is India I am 23yrs old and I found out in Dec 2009 I had PTC. I have already lost all vision in my right eye because I waited to long to get checked out I just thought it was sinus headaches(although I've never had problems with them) and never thought more into it because I didn't have insurance and then finally I realized this is serious I am blind in one eye so I went to see a Eye doctor and they took pics of my eye and told me that I need to have a MRI done and then after that I need to been seen by a Neurologist so she sat everything up for me and everything came back mormal and then thats when the Neurologist told me it was PTC and she didn't think I would get the sight back in the right eye but to keep the left one from going blind she put me on Diamox and now I'm taking 6/250mg a day and they help the headaches a lot everynow and then I'll get a little one nothing compared to what they was and I have had 5 Lumbar Punctures and a blood patch and now my Neurologist is wanting me to get the Opitc Nerve Sheath Fenestration or the Spinal Fluid Shunt done, the shunt will end in my stomach and I was wondering about the shunt thats the one she keeps bringing up alot and I'm thinking of gettting it done and i was wondering how long the recovery time was for the ones who have had it done. I have 2 little girls and I need to know about how long it takes to get back to normal. And I'm still not sure how they do them I have been looking up everything I can think of and still no answer on which surgery would be best. Just the thought of haveing the shunt worrys me and having to replace it but I'm thinking the shunt would probably be best. Any suggestions?

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by becky433, Feb 04, 2011
Hello,

My name is Becky and I have had PTC for 7 year and I have had 3 VP shunts and 21 spinal taps.Also take Damox and Topamax. The headaches and sick to the stomach are the pits. My tubing in my stomach likes to coil and it feels like it is a knife. Now my ventricles have collapsed so I have to have a LP shunt. I am scared.But through all that has happened my faith in GOD has never failed. I now that HE will pull me and all of us thru. HE will cure all of us. There will be no more PTC. There will be no more shunts or spinal taps. THERE WILL BE MORE SICKNESS!!!!!!     WE WILL ALL BE HEALTHY AND WHOLE!!!!  Do not get me wrong I am not preaching I am just BELEAVING!!!!    God Bless Us All!!!



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by mitmit315, May 16, 2011
Hello, my name is Misty, I was diagnosed in 09 with PTC  when I went to get new classes. for years I had miagraines. I was put on Topamax by my family dr. before I found  out. I went to get new glasses when they seen something wrong. I myself was getting bad at hearing  for  5 yrs prior. I was alson diagnosed with Meneiers disease also. I have bad vertigo. I live in the bed. I have had spinal taps and at one time on 2000mg of Diamox. Yes, 2000. All of my potassium was depleated and my left side cramped up and went numb.. Now I am down to 500mg. Had a number of dr's and hospital stays. came home after a spinal one time and the headache was so bad they had drained too much . my back stays in so much pain for me to walk. the next step is the shunt.Should I get it? I do think Meneier's is connected with this. Right now I am getting prepared, because I am very sick with vertigo and cannot eat. I know I will go on the hospital soon. . My twins graduate fom middle school tuesday, so I am trying to make it through. Glad I found this website. would lovee to talk to u. Thanks

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by staceyh80229, May 18, 2011
hello Adrianna my name is Stacey Henderson and i too at 22 had a lower lumbar placed because of to much fluid pressure im 31 now and now they say due to my mris that it is draining to much i have dizziness and numbness in my left side my neurosurgeon signed off on me and i don't currently have a neuro surgeon im scared the shunt will kill me as far as taking to much fluid off when they saw the cast of fluid in my left eye and did the tap i was at 45 cm of fluid now it is very low.im legally blind in my left eye and still have the bad neck and head pain my ears feel they are clogged all the time was on diomox,topical,and imitrex nothing worked i have never suffered a blow to the head or any blunt trauma i was writing to you to see if you know how this happened or why it happened to you????i live in Augusta,Maine and i have a facebook my name is Stacey Henderson and feel free to look me up and i would like your input on this if you can help me it would be great im so very glad that i found this website and know that am not alone thanks for the info that you have already posted in has helped a little I'm very scared that i am going to die because of this....thanks again Stacey

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by rylansmom, Jun 02, 2011
Hello I am 32 years old and went yesterday to see my eye doctor for a regular visit and had marked on my paper that I have headaches just about every day and some days they are really bad, but I work in a office and I am constantly looking at two different computer monitors, so I thought my headaches were from that.  He took pictures of my eyes and dialated them and looked at them several times and dx me with pseudo papilledema.  He referred me to an Neuro-opthamologist, I do not go for 2 months.  Does anyone know what I should expect when I go see him?  Thanks

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by psudie, Jul 19, 2011
Hello, I am 39 and have PTC. I have gone through two LP's and have indured the pain of lower pressure headaches after the LP's and for some reason the neurologist that I was going to at that time failed to offer me the blood patch. Although I work for neurologist myself and knew this I was in too much pain to ask for it so laid in bed both times for 7days flat of my back. On the second go round my husband took me to Mississippi to the doctor. We were told by several neuro's that PTC is usually seen in Obese people and they were totally puzzled. Now, I'm on round three in the 4th year and on 300mg of Topamax and titrating back up on my Diamox to 2000mg as I was before. My eyesight is getting worse and i'm afraid that they will offer the shunt next. I have no energy to do anything and I work a fulltime job.
Does this just drain you all?

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by Pitlove, Aug 22, 2011
Hello, my name is Mariann. I am 30 years old and was diagnosed with PTC last year. I was on Diamox and Topomax but recently found out I am pregnant and am no longer on any meds. I have lost my depth perception and my pereferal vision comes and goes. My neurologist won't see me now that I am pregnant and his only advice for me with the headaches and other symptoms was Tylenol. I am waiting for my insurance to start so I can see another neurologist but for now I am just dealing with the pain and vision loss. I guess my question is...when I finally see this new doctor is there any medications out there that I can ask for that will be safe for me to take while pregnant?

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