Diagnosed with PTC 11/03.  Got pg the end of December.  Had one spinal tap the beginning of December.  Not taking any meds at this time and currently doing fine, thank God. If you have any questions, feel free to contact me at sealpup_1979@hotmail.com.

Had ptc for 2+ years had the vp shunt surgury in November 03 still feeling great. Got pg january 04. This will be my third child I am 22 years old been married for five years have two girls Faith 4 and Kate 15 months . We just found out its another girl!! She is perfectly healthy and expected mid october. And to those fellow pg ptcers I felt so good during my last pregnancy I thought my ptc was gone I had no meds and haddent had the shunt yet so I hope you feel awsome during this pregnancy to 

I am currently in my 8th week of preg.  I am 25 and this is my first child.  I quit the diamox and have some headaches since and some vision loss, but otherwise feel great.  I already have a great Nuero and Opthm. and the OB I chose has experience with PTC (Yahoo!!!).  My Opthm has referred me to a Neuro-Opthm who I see next week and according to my Opthm she is the best in the country.  I am blessed to have doctors willing to work hard to keep me healthy and save my vision.  Good luck to the other mom's and I will keep you all posted.

I've had PTC for 12 years and also had trouble conceiving.  But so far, everything's going great.  I'm on NO meds for the PTC since I got pregnant and I've not had any trouble.  I'm keeping my fingers crossed that it continues this way, but I still have two trimesters left!!!

Hi. My name is Jillian, and I am 20 years old. My husband and I have been married for a year and a half. I found out I was pregnant in late September. I am currently 14 weeks. My neuro has taken me off of the 600mg of Zonegran I was taking. In the beginning, my headaches were nonexistent. But after having come off the medication, I am having terrible headaches almost daily. I am currently not taking anything for them, and I see my neuro in 2 weeks. But you know, as bad as they are, I am managing to live through each day without lying in bed in pain. I think it's knowing that I am giving my child a better start by not taking the medication. I am really looking forward to my January appointment, when I can find out the sex of the baby at last! Oh, and I was diagnosed with PTC three years ago.

Have an LP shunt.  pregnancy has been going wonderfully so far. *knockin on wood*

I was diagnosed with PTC in December. The OB said no to the Lasix and Diamox so my only form of treatment thus far has been LPs every other weekand medicine for the pain. My baby seems to be growing just fine and not having any problems. The neuro is hoping that after the baby this will all just go away. We'll see....

This is my fourth pregnancy and my first with PTC. Everything is going great and the baby looks fine. We are still planning on a homebirth with my midwives and hopefully everything will go smoothly :)

 

 

 

 

 

 

 

 

 

 

I've never been happier even though the effect on my PTC has been pretty severe.  I had a lumbar puncture a few weeks ago at 11 weeks.  They drained me down to a really low pressure and I felt dreadful for days.  Still, hopefully it will save my sight as I am really looking forward to seeing my baby.

Hi All,

 

Congrats to all my fellow mothers to be!! This is my second child, My daughter is 14 years old. This is myfirst pregnancy with PTC and Im praying all goes well! I went off my diamox 9/1/05 when i found out I was pregnant. I have started to get the heartbeat in my left ear which is my first sign the PTC is back....  Well at least I lasted a month without it.... The docs say I am gonna have to go back on the diamox when the symptoms get more severe but I really dont want to... I am gonna suggest a LP which should get me a little further along in the pregnancy. I've heard its safe to go back on diamox after 20 weeks... ( I wish I didnt have to at all)

 

Good luck and wishing you all pain free days!

 

Dawn

This baby was very unexpected so I was taking Topamax from conception until week 7. I'm now only taking topamax when i really need to. My neuro has had 5 patients with Epilepsy go on to have healthy babies and they had to stay on Topamax the whole time. My only concern is the reports my GP found where babies had been reported to have some disfigurations. Whether from the topamax or not, he doesnt know.

 

Anyhow i had an ultrasound on Thursday (week 6), and all is looking fine. My neuro said to stay on it if i have to, or come off it if i dont! (topamax). So im taking each day as it comes.

 

This is my third child, first since being dx with PTC 3yrs ago. I have noticed a few changes such as 'all day morning sickness' and I'm alot more tired with this one, that i didnt have with the last two.

 

Will update with anything new...

 

Mel

 

Update: 7th May 06 (27wks pregnant)

 

I've pretty much stayed on Topamax throughout this pregnancy, but have reduced the amount I take. I didnt go into 'remission' at all. I still wake up with a heavy head etc.

I've had 3 ultrasounds in total now, and everything appears to be normal.

 

FINAL UPDATE: One year on! Everything went well, I was induced 3 1/2 weeks early as my neurosurgeon was worried about a stroke (something new I'd never heard of before). Anyway I had a normal vaginal birth, with an epidural. My son was born 6lb10oz. I breastfed for 7mths while on Topamax and to this day I dont believe Topamax harmed him at all. My only concern was him being induced early. He had 3 hernias, which Drs say is probably due to the fact he was early (and happens more often in males). One year on he's developing as he should!

 

 

 

Dx: 12/'03  treated w/ 1000mg Diamox and LP's every 4mo.

 

I am 34 and 28wksalong with my long awaited first child.

 

Neuro took me off meds when I found out I was prego at 5wks. Treated me with LP's every 2mo. Got different opinions from different Dr.s about safety of diamox for baby so I went with my neuro and stayed off it.

At 23 weeks I moved and started seeing new Dr's. Still got conflicting opinions about diamox and my tests revealed rapid vision deterioration and I was told an ONSF or shunt was needed to save my sight. At 26wks I had a LP shunt put in. I was terrified, but by the Grace of God, baby & I came through it fine. Thanks to God and a wonderful team of Dr's I will be able to see my little "Grace LaDelle" when she comes into this world.

I was diagnosised with PTC in October of 04 in May of 05 I had an LP shunt placed and then replaced a month later.  I have since moved to South Australia and I am now pregnant with our second child.  I am here for support and answers to my questions.  I am now 9 and half weeks pregnant and have had three previous miscarriages so I am scared and worried about the changes my body is going through and how it will effect my PTC.  I was wondering anyone could tell me if they delieved with an LP shunt and if they were alowed and Epedural or not.  I am not sure how my LP shunt will effect the delievery if at all!

 

I am now 12 weeks pregnant as of Oct 20th

My name is Monica and I am currently 10 weeks pregnant. I was diagnosed with PTC in January and ever since been on a crap load of meds. I am 26 years old and live in Miami, FL. As soon as I found out I was pregnant I stopped all medication and I am taking the pain as a "man" so to speak. lol

According to my docs, the form of treatment to follow is lumbar punctures as needed. I am trying to schedule my first one this week, but my new neuro is a pain in the butt and I cannot get ahold of him. So far I have been doing cranio sacral therapy for pain management and it has helped a bit, but i still need the puncture.

Well, I will be bugging lots of you with questions.

Hope you all have a pain free day!!

I am currently 10 weeks pregnant.  I was only diagnosed at 7 weeks so the last few weeks have been crazy for me.  The neuro-opthamologists want me to either have a shunt or start taking Diamox as they are concerned for my vision-i have visual disturbances in the right eye already.

My OB is happy for me to take the meds after 13 weeks so hopefully i can hold out till then.

Update-Well i managed to go my whole pregnancy with no meds.  I was watched very closely (weekly) by the neuro-opthamalogist and there was no vision deterioration so i managed to get to my booked c/section at 38 weeks with relatively few dramas.  Amy was born on the 7th of June and is beautiful.  I still have swollen optic nerves which are monitored very closely.

Well,  I am due in a matter of days and my whole pregnancy has been symptom free up until now! All of my pain has returned including my eyepain and my doctors don't talk or  know what they want to due I have a LP Shunt and I have had one since Oct. 2005 and I am hoping that since I had issues with my shunt since it was put in they will replace it after the birth of the baby! I do have to have a C-Section and everyone has been telling me that I should have any problems with epidural or the C-Section itself! I just hope everything goes well on the 12th my scheduled C-Section!

Hi all I am in my 12th week of pregnancy and so far everything has been ok I have been taken off Topamax for now because I was having very little symtoms but now I have started to get some minor headaches which thank god for Tylenol controls. How has everyone else coped?

 

 

Just thought I would update everyone, I am now going on 19 weeks and will find out on the 31st what the gender is so far my PTC has controled well without meds but I do get headaches occasionally to where I have layed in bed all day. But it is a small price to pay.

 

 

Just wanted to update everyone we had our little boy on 10/3/07 and boy have we been busy since he has had two surgeries but is awesome now. I was in remission for almost ayear and now go see my Neuro next week boo hoo. Wish everyone the best of luck with there pregnancies it is so wourth it.

Hi everyone!  I am 25 and pregnant with my first child.  A little girl!!  I am about to hit 28 weeks tomorrow and my pregnancy isgoing REALLY well! No major problems as of yet.  I was told that I may possibly have to get a C-section due to a low-lying placenta but the doctors say it still has time to move.  I'm starting to get concerned about the delivery and if I am going to be able to get an epidural due to my LP shunt.  Still doing my research on the subject.  =)  Hope everyone is doing well!

I was diagnosed with PTC when I was 16 years old, I was seeing double and throwing up from the awful pain I was in.  With the help of meds I was able to avoid a shunt, but I had already lost a large portion of my peripheral vision by then.  The only trigger I can think of is if I gain 10lbs or more my pressure starts to go up.  I have yet to find a doctor that I feel is confident in treating me and I find that this makes dealing with PTC harder.  I was doing great for a year and started coming off my meds so that my husband and I could have a  child.  Part way through my first trimester I was in the ER for a spinal tap my pressure was at 32.  Once I had finished my first trimester I was able to go back on Diamox but at a low dose.  I also started taking codein because the "great" doctors we have here in Ottawa On, will not give spinal taps to relive pressure instead they want you to drug your baby!  I am now 24 years old and in my third trimester (28 weeks) and am trying to convince my neurologists that Codein is not good!  Well wish me luck.....  I only hope after I have the baby perhaps I will have a shunt put in and that will resolve me fighting with the ER and neurologists over spinal taps. 

Hi. I was diagnosed with PTC last year after a month on an extremely high dosage of antibiotics to ward off a staph infection.

 

I was taking topamax prior to finding out I was pregnant, then for the first 12 weeks I saw the neurologist frequently and updated him on any symptoms. 

 

At 12 weeks I began losing some vision and having severe headaches again - an LP showed an opening pressure of 35. AFter this I was placed on Diamox which I am still taking.

 

I am still experiencing all day nausea however the docs were able to find a safe anti-nausea med to help with that.  I am about 20 weeks now and have limited my weight as much as possible - 4 lbs at this point. 

 

A recent storm system seems to have stirred up some of the pressure and I am heading back to the Neuro this week.  Otherwise I medicate with tylenol when it is needed and some other herbal remedies for rest and relaxation. 

 

Ill keep you posted on any changes. 

Hi!  I'm new here.  I am currently pregnant and due December 19, 2007.  I was diagnosed with PTC October 2002.  My last son was born January 2002.  I was suffering from floater and seeing spots and went to my Opt.  They refered me to a neurologist and I had and MRI and LP.  The put me on Topamax because I'm allergic to sulfer.  I had a bad reaction to the drug and had to come off of it.  The following year (October 2003) the PTC started up again with a vengence.  I had severe neck pain and quickly began losing my sight.  I could not get in with the neuro I had seen previously and had to go through my family dr to be referred to the opt and then get refered to another neuro/opt in another county.  I was imediately put in the hospital and had 2 LPs and ended up having optic nerve sheath fenestration on both eyes.  I had already suffered permenant damage to both eyes and am now legally blind.  I never suffered from the severe headaches and that is one of the reasons it became so bad so quickly.  After the surgery I regained some sight, enough to function on my own, but not be able to drive or keep a job.   I became pregnant this year and I haven't had the swooshing in my ears or the minimal headaches that I had before.  My symptoms seem almost non existent.  I'm really worried about what will happen after the baby arrives.  I'm terrified something will happen and I may loose what is left of my sight.  This is the only place that I have found that has the information that I'm looking for about Pregnant with PTC.  I'm hoping to get advice here and support.  I'm thankful for any advice and reassurance I can get.  Thanks for listening.

 

Concerned with the symptoms of PTC and pregnancy.  I going to watch and try to control how I gain weight and try to only gain the minimum needed.  I am also concerned about prenantal vitamins and the effects they have on PTC.

I was told to wait to get pregnant by three doctors.  However, as soon as we started using birth control, we found we were already 5 weeks pregnant.  I'm a little nervous, but so far feel great.  My headaches have not been bad, which is unusual for me.  I'm just praying that everything goes well. 

Good morning moms-to-be,

          Congrats on your pregnancy's....Im newely diagnosed with PTC (2weeks ago) and have had this for i would say since 2006. I lived in Orlando, FL and the doctors kept telling me yah you have headaches and push me to the curve, i felt bad for about 7months and went into i guess a remission for 9-10months, and here we go again. I ended up in the ER complaining of headache and was sent to neuro, who happended to also be a neuro-opthamologist. He did an exam and said I had fluid and swelling behind my left eye....I know odd, its usually in both eyes. He brushed me off and said i had migraines and it couldn't be PTC since it wasnt a true papilledema. My headaches got worse and began with extreme eye pain and a whooshing sond in my ears, like a womb noise. Back to the ER because the pressure/pain was so bad i could not even talk, this was in the afternoon and the doctor told me to go to see an eye doctor....i was dicharged and seen an optomitrist who seen swelling and fluid in my L eye as well and told me i needed to see an neurologist immediately to r/o PTC. At this time i did not even know what PTC was. I went back to the same ER and seen the same ER doctor as i did that day, and he admitted me nor neurology consult. In the hospital i developed tingling in my hands and was totally freaked out. I seen neurology who told be he thought i had PTC....i had already at that point had an MRI which showed i had Chiari Malformation 1, otherwise was normal. I had MRA which showed i had a possible 2mm aneurysm, and an MRV which was normal, CT normal. I was discharged and scheduled for my first LP....I had it done, and did really well, no headahce after, it actually got better! My opening pressure was 22, not to high but when i had the LP i didn't have a headahce....I find that my headaches get worse when i do activities.  I was also recently diagnosed with Chronic Fatigue Syndrom, and was wondering if anyone else on the site has CFS or Chiari with their PTC? I want so bad a baby...Im 22years old and have been in my relationship for 4years now, and we talk about it all the time. I was just wondering what opinions if anyone had some, could be of help or comfort to me. I hope that all goes well with your pregnancies and look forward to talking with you all soon. Thank you.

                 Samantha

I was diagnosed on April 11, 2008 when I was about 20 wks pregnant!  As of right now I am on no medication but I have had 3 spinal tabs so far!  The Dr. just informed me today that I will be having them done every day till my pressure is normal (lower teens).  So far my pressures have been 48, 38, and 59+ (the last one, the drs gauge only registered to 59 and went beyond that).  I am in the hospital and not looking forward to staying here for as long as they are talking about.  I am scared out of my mind right now and miss my boys and husband, they only get to come up here once a day!