Living With Ptc

I was diagnosed at the age of 17 and have been living with this for 9 years now. In the begining I didn't realize what it really meant but after many ears and lots of research I have a better idea. I would like to hear others experiences with this disorder and how your life has been after the diagnoses. I just had an MRI today because I have been having a lot of headaches lately and my face has been going numb also. I am a little scared. I think they will probably tell me I need another spinal tap(LP). Am not looking forward to it.
allyKat allyKat
26-30, F
18 Responses May 7, 2007

My son has had this since 2009. I had never heard of it until then. He has a VP shunt. It is working fine. but it was too late for his vision. He is almost blind. The medicine did NOT work for him. The doctors drug their feet in giving him a shunt. I believe if he would of gotten a shunt right away he would still be able to see. I know medicine does work for some people, but it didn't for him. If you have been on medicine for a year or more and it isn't working please take my word and consider a shunt.

Im so sorry to hear that for ur son. Did they not try optic nerve sheath fenestration 1st??

I got the shunt nd i can see but i lost some vision in my right eye and left eye but I\'m thankful i can still see but i dnt know how long this last i have a lot of brightness but nomore headaches although i can see out of 1 eye I\'m still scared

What is optic nerve sheath fenestration

My name is Carmen I am 25 and have PTC it is not easy to deal with this ....I was dg with this 6 months ago it's been hard going threw so much pain , then seen all these doctors..and some of them don't tell u any info on this .....I was scared I cried a lot cause I have three kids....to deal with this now....every month I go to the eye doctor to check my eyes...I taking diamox....it helps me with the pain...but I hate the ring in my ears wish all this could go away...but I don't feel alone no more cause I see their are other people with this, thank u for your stories...

I have 5 kids n I\'m scared to no u not alone i cry daily

Make sure they check your potassium level. I've had PTC since diagnosed in 91. Diamox is know for helping w/PTC, but can deplete your potassium. I've been in the hospitals heart icu bcuz my potassium has been .1, Normal is .5. It's very dangerous if it gets that low. Potassium burns horribly, MAKE them use lidocaine if u ever have to get it. My face was getting numb & it makes your muscles not work right. It's very dangerous for your heart! Good luck. I had to quit diamox, made me hypokalemic. I'm on Spironolactone now, & my potassium is great now. Good luck, you'll be in my prayers. Laurie

hey there Laurie sorry this is such an old post but i have ptc and have just started spiro and am wondering what dosage you are on that has worked for you? as i have reacted to diamox and dont know if i will be able to go back on it? if you are able please feel free to email me at ridleyjenniferhotmail.com I would so appreciate you sharing your experience as i am fairly new to IIH. thx. Jennifer

Hi everyone, I was diagnosed with PTC in Sept 2011. I was put on Diamox first (which did not help at all) and had spinal taps every 2 weeks to remove fluid and lower the pressure, but my opening pressures just kept rising. After having an MRV which an MRI that looks at your veins, the doc found out I had narrowing of my venous sinuses (these are 2 large veins in your head). The pressure from my PTC had caused them to basically start to "collapse". I had to have a cerebral angiogram to confirm the pressure gradients inside the veins, which was horrible. I was then schedule for my surgery a month later. I had stents placed (just like people who have narrow or blocked arteries in their hearts) in my 2 veins in my head. I am now on blood thinners and antiplatelet meds also to prevent clots from forming by the stents. This is a newer form of treatment, so there is really no long term data. This is also not for people who are experiencing vision loss, the optic nerve fenestration is better. Anyway, my neuro and I decided to go this route because he told me the shunts have a high fail rate, which means you tend to need repeat surguries. Like the one lady posted above hers popped out of place. I had my surgery done at Freodert Hosp in Milwaukee, WI. I am not saying this is right or wrong, or that one is better than the other (if you read my story you will see I am still having problems with my PTC, so the stents are not a fix all) I am just mentioning stenting, because I have not seen anyone else on this page say anything. And maybe it will help someone! Thanks for listening to me ramble. Hope you can tell I am new here and I have needed to talk to other people who know what I am going through for a very, very long time. Thanks again..

I have PTC and have only been officially diagnosed for 9 months now, but started having the symptoms after my first baby which will be 2 next month. After all of the testing and different doctors that I have been to I was happy to find out about this, but on the other hand a little uneducated on PTC. It is nice to read the other comments and see that I am not alone and I am not crazy with the symptoms. My neuro automatically found it my first appointment with her (she was the 2nd that I had seen) She put me on diamox and recently increased my dosage. The optic disc looked good last time she checked but due to the symptoms still being there I went ahead and moved to 1000mg a day. And soon after I started getting the numbness and tingling which was enough of a burden to me that I requested to lower/stop my meds. I guess I am looking into other peoples stories because my neuro never told me anything besides a LP that I can do. Now after reading I see that a LP is just going to bring on more and more LP in my life which is not what i want. I am 21 and I want to live my life and be able to play with my kids, so is a shunt the best way to combat the PTC and get on to as normal of a life as I can? I mean I understand that I will have things to worry about for the rest of my life but I feel like I am sitting around in PAIN waiting to go blind. I have already have decrease in my field of vision so I am thinking that maybe I need to combat it early before I have something like blindness happen.

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com

This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I've been suffering since diagnosed in 91. Had 50 plus lp's, 10 blood patches, have been in cardiac critical unit 9 times due to diamox depleting my potassium, had optic sheath fenestration on both eyes. The neurosurgeon cut a wrong blood vessel on my left eye so its permanently blown my pupil. My veins have been ruined by all the painful potassium drips. I just want me back. My email is tynkerbelle39@gmail.com. I get nerve block shots & botox now, helps for awhile, but not for the 3 mths inbetween botox shots, you look good, but not much help w/our type of migraines from the pressure. Thx Laurie

After a 8 months i round up gettn a shunt i think if thy would have done the shunt rite away i wouldn\'t lost so much of my sight

How did this product help u did it help ur vision or what desperate seekn help

1 More Response

My daughter has PTC she is 19, I know shes in alot of pain she has had 3 spinal taps in less than a year. First one put her in hosp for 3 days cause it didnt seal. Now Dr. is wanting spinal taps once a month. First she has to have 2 in 2 weeks. Is there any hope of her having a normal life? She is in college for RN but im afraid with all her headaches she wont be able to do this. I feel like a bad mom cause I push her to attend classes and I just want her to have a normal life. She already has a heart condition a GI condition and now this, Im afraid one day she will just give up. Is there anyone who can give me some advise? PLEASE!

Hello, My name is Jamie. I have been dealing with this. I was on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I am 23 and just got diagnosed with ptc, im terrified I dnt want to go through this. I was put on ,500 mg of Diamox. How long will I have to take this, how long until I feel better.

Hello, My name is Jamie. I have been dealing with this. I was on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I just wanted to say that yesterday my doctor told me I have PTC. I'm now scheduled for my first MRI and Spinal Tap. I'm really not looking forward to it. I have every symptom of PTC so I'm pretty sure the diagnosis is correct. I just wanted to thank everyone here for all the information you have provided. I've been very scared and emotional these past two days and it helps to know that others are here if I need them. It's hard for my friends and family to understand. I'm already tired if hearing "it will be ok" when it's not going to be ok. I have to live with this for the rest of my life and it's sad. I pray I don't lose my eye sight the last thing I want is to throw away my dreams of becoming an animator and ending up with a college debt of $65,000.00 on an education that I can't use. My grades in school have been dropping and I've been missing so much work. I'm 27, single and don't live close to family so I am feeling very alone. Thanks for letting me share my story.<br />
<br />
Shannon Cox

Hello, My name is Jamie. I have been dealing with this. I was on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

i am 25 i was told at 17 i had primary PTC and i have never stopped having problems i have no medical and cant afford it! i am prescribed a number of things but my question is with the pain meds i get lortab and for 18 months it worked but now i cant sleep barely eat go outside or attend class the pressure on my eyes the stabbing pains in my head and the tension in my shoulders and neck are killing me daily i on average have 5 out of 7 days i feel like i could stay in bed from the pain but i have to get up and try to deal with it i want to have the optical surgery but with no insure i cant right now i cant even afford half the medication im on i hardly ever get to go to a doctor to have my eyes tested. i get scared all the time that they wlll return again and i cant go through its to much.. have any of you found a combination or a single drug that helps at all? i dont know if i cant go another day like this and i feel like i have to explain PTC to the doctors i see im truely lost in my battle please help !

It sounds weird but the only way I have been able to get any of my pain in my head and neck to go away was to start seeing a chiropractor

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

hi my name is Katti. Im 24 and i have PTC. Found out i had PTC in 08. I have had the worst time having. I lost friends i lost my job. The way they found out i had this was an eye exam. Only one part of the eye exam really. Once they put drops in my eyes and he seen my optical nerves and disk in the back of my eyes. He told me that i need to see a nero fast. so i did. I did they put me on a long list of meds and some didnt work some did i had to tell them how i felt on the meds before anything.... the pressure in my head got worse and worse then the ringing started and never stopped. Most the time i would have to lay in bed and never move... every time i tried to get up i would get sick and my body would push itself back down again... This is when i was rusted to the hospital and i got my first shunt... worked for a while along with spinal taps... in one week i believe i had 10 spinal taps... i have told my doctors to never want me to have another one again... my lower back is in so much pain now... after a couple of months my shunt stopped working and the pressure was getting worse and worse again... i went in and they replaced it.. month and month of more doctors and more testing more pills.... i was so drained.... i felt alone in the world... i felt like i have lost..... but i pushed myself hard... went to work did what i had to but then i lost my job bc of this... it was xmas and i called in bc i couldnt get out of bed again but i had my shift covered so it wasnt tht big of a deal and i get a call the next day and they fired me... so after that i took everything really hard... i got really sick and i told them i think a need a second shunt... so they did... i felt so great.. after this... i felt like maybe everything was looking up... but then the tubing in my stomach popped out of place of the left side so i had to rush to the hospital once again and get it taken care of... so now i have been good for a while now... my head hurts still my eyes also... ringing sometimes.... pain all the time now... now my nero doctor said to me just 2 weeks ago she doesnt know what to do for me anymore... wow this is rare and u would think ur doctor would be there for u but now i feel like i have no hope bc of her and im just going to have to deal with everything... it hurts... but anyways... im just happy my husband has stayed by my side with all this!!!!! this is what im going to write for now... please i would love to hear story or even help with anything... <br />
<br />
katti

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

Do u still have ur eyesight

does anybody with this condition know if it is possible for it to affect your heart in any way?

Yes, if your on Diamox it can deplete your potassium, making u hypokalemic, your normal potassium s/b .5, mines gotten as low as .1, &amp; anything below 2.1 has landed me in the cardiac care unit, hooked up to heart monitors 24/7 until they get your potassium back up. I went on a potassium foods only diet, but ultimately had to come off the diamond &amp; be switched to spironolactone. It stays normal now. Good luck.

Hi, I am in the process of being diagnosed. I started feeling dizzy and having vision problems along with light headaches. I hope my condition doesnt get any worst, since From what I hear from other people it can be very nasty. best wishes for everybody who suffers this disease.

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I'm new to having PTC. I have only been diagnosed with it for about 11 months it will be a year come Feb 2011. I got told this when i was 20. I lost 50% of my vision in my right eye. I had two opritc nerve fenestration done both my left and my right eye. I am starting to see some progress with regaining my vision in my left eye but my right eye i see none. It was extremly fustrating in the beginning I would break down in tears because of the headaches and the neck pain. I haven't had any headaches in awhile. I've only gotten 1 spinal tap so far and hope i don't have to get more. <br />
I noticed that some people mentioned vision loss in there right eyes. Is there a reason behind that.

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I understand what you're going through. I was diagnosed a year ago. And it came back this september. Ive had 9 spinals. Like somebody above said under x-ray its not as bad! they find the 'sweet' spot easier :)

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

I was diagnoses is PTC Christmas of 1995 and two day later have optic nerve fenestration. Even though I lost 50 percent of my eye sight in my right eye, I was happy to do it. My other option was taps and after 1 of those that was the righ choice for me. However, the last 6 months , i am having difficulty, and my face is going numb. Eveything in my head seems amplified. Ringing ears, numb face, vision changes are happening again, along with headaches. I have had two MRI which will show nothing, however, I am now requesting a tap, with fenestrations again. As it worked well for 14 years wtihout fault...So for all of you out there, don't give up...I am willing to take diamox or decadron or do whatever it takes. I hav been nursing almost 20 years and am not ready to give up yet....

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

Hi, I have PTC and I do not have a shunt but I did have the optic nerve sheath fenestration done. It was to stop me from losing the vision in my right eye. My vision has not gotten any better but I am no longer losing any more vision in my right eye.<br />
I've had PTC for about 4 or 5 years. Since I no longer have medical insurance (long story..not going there), I've had headaches but they are bearable. My neck is stiff most of the time. I have constant ringing in my ears which I am getting used to.<br />
I think I'd rather have all these symptoms than get a lumbar poke... I hate those spinals.. They are absolutely horrible. I had 1 that was done with no problem at all and that was done in the hospital.<br />
My doctor gave me the choice of shunting of the sheath fenestration and I chose not to have a shunt done. I told him that I'd rather live with the headaches then to have something put into my body that might need to be fixed over and over again.<br />
I'm just waiting for the day when this is over. No one seems to understand what I go through here.. I just grin and bear with it. I'm just so glad I can still work. There are those who cannot work at all. <br />
Get a tap done under fluoroscope. If you have a good doctor you should not feel a thing.. Like I said, I've only had 1 good spinal done and the doctor did it under fluoroscope and he found the right area.. used the right technique and bam.. No pain.<br />
Good Luck!

Hi, I have PTC too. I got 13 spinal tabs, before I get my shunting. Can't they 'put' a shunting in your body? It helps very good! ;) I hope the MRI was going good!<br />
<br />
Greetings Mazzel, from The Netherlands

thanks for sharing... there are numerous stories of spinal taps on here and I'm sure someone else with PTC will be along shortly...