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Our Organization |
Info on Hydrocephalus |
Treatment of Hydrocephalus |
Articles & Stories |
Guestbook |
Survey Results |
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Our Organization |
Info on Hydrocephalus |
Treatment of Hydrocephalus |
Articles & Stories |
Guestbook |
Survey Results |
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Guestbook |
The 2009 Hydrocephalus Survey results are posted!
Our next Hydrocephalus Conference will be held in Spring 2011.
The National Hydrocephalus Foundation needs your support!
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| Name: Tony Kirt Peters | Posted: 2010-06-10 12:17:00 |
| E-Mail: t.peters.place@live.com | Location: Ponder, TX |
| I was born with Hydrocephalus back in Febuary 7th 1960. Had a shunt put in on right side at 1 month old. The end of the shunt is at my collar bone near my jugular vain (at present). As of this writing I am 50 years old and have had only 2 seziers back in 1978-79 but, came out inconclusive as to weather it was seziers or not. I had a learning disablity growing up. I could read word for word but, I could not comprehind what I just read. No clues. I did go to special reading classes that taught me how to overcome the problem and eventually read quite well today. about a 10/11 grade level. | |
| Name: Rachel Prohigh | Posted: 2010-06-06 08:36:13 |
| E-Mail: rachel@prohigh.com | Location: philadelphia pa |
| Daughter Caragh diagnosed 6-5-10 with axial hydrocephalus. her head circ. at 110% for term baby while she was an 11 week preemie. not hitting milestones severe develpomental delays. previous daughter with trisomy 18 and another daughter with bilateral chroid plexus cysts unresolved at birth. want and need as much info as i can get.feel free to email please. thanks |
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| Name: Melissa Carter | Posted: 2010-05-20 13:35:46 |
| E-Mail: mcarter@dotfoods.com | Location: IL |
| I have had hydrocephalus ever since I was diagnosed at 3 months. I feel fortunate enough that I do not remember any of the surgeries from my early years. The last shunt revision I had to have done was almost 20 years ago. There are times I worry that something might be wrong and I do not realize it, I remember all too well when I was in grade school and had troubles, the headaches were excruciating and I hope I never have anything like that again. Plus I had been told by my Neuro doctor that if I had not been having any troubles for so long that I did not need to continue with yearly visits, I am still unsure how I feel about that. My yearly visit to my doctor before him was how we found out the shunt had disconnected, I really had no symptoms in regards to that. I have noticed here lately though that I have been a little more irritable then I have been and for me that is not normal and have wondered if this is something I need to get checked out to make sure nothing is wrong. Would you be able to give me some insight? Thank you, Melissa |
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| Name: Geraldine T. Sia | Posted: 2010-05-19 15:47:23 |
| E-Mail: geraldinetansia_dmd2002@yahoo.com | Location: Philippines |
| I've met this little girl with a hydrocephalus when she was 5 yrs old.Her dad literally carried her to my office because her head had grown so big that she can't balance herself.I extracted her badly broken baby teeth after a series of questions regarding her condition.She only attended nursery due to her condition,yet i saw how smart she is.Years passed by,she became a regular patient of mine without hearing any complains about her head.Not until i had a heart to heart talk with Beverly,her mother died of breast cancer last May 22,2009.Now she's turning 10 on the 31st of July,all she want is for her to have a normal life..to ride a bicycle,to go to school,to walk on her own feet.I am humbly asking your good office to help her to have a bright future.Thank you and God bless. | |
| Name: Steven Riker | Posted: 2010-05-14 19:36:18 |
| E-Mail: stevenriker@ymail.com | Location: New Mexico |
| First of all, I thank you Debbie for having this website up and running. Thank you for being there for me and my wife Deb from 2004 to the present. If it weren't for your compassionate words of understanding via phone tags with us, we would've been lost in the tangles of confusion when it came to hydrocephalus, shunts, implants, revisions, the dependency on living with an implanted shunt, and its' symptomatic issues. Also, thank you so much for your kindness of answers to all of our questions, and your caring heart to be concerned on both of our health and well-being. Thank you very much Debbie. I am a 50 yr. old male with an inoperable mid-brain cyst with obstructed hydrocephalus in the third ventricle, and in 2004, a MedTronic VP Programmable Shunt was implanted on the right side of my head. I have had nine brain operations within 6 yrs, from 1998 to 2004. I suffer daily from constant levels of severe pain due to various types of chronic headaches. I have the tendency of needing to lay down more than sitting up in a vertical position. I am on prescribed pain medications but it doesn't alleviate the severity of the headache pain completely, it just masks it for a few hours. I have a Neurologist I see every 6 months to a year. He prescribed a medication for my headache pain: Verapamil ER, 120mg tablets, taken twice a day. I don't feel this med is effective as it should be, because I haven't had a pain free day yet. The neurosurgeon I would like to be seen by, but don't, is more dedicated to spinal, (neck-back), injuries. Instead, I am seen by a Physician's Assistant. By luck, when I am seen by the neurosurgeon, me and my wife's conversation starts with my symptoms that we feel needs medical attention amongst other why/what concerned questions we have at hand. The answers we normally hear are: "you look physically great, seems your shunt is working fine, a revision isn't needed," and that's the end of our conversation. When we pursue on to get the answers to our questions, the questions gets ignored, and we're left in the dark once again. Prior to us leaving the examination room, the calibration of my shunt gets checked, and I am scheduled for another appt to be seen in six months to a year. The symptoms I have been dealing with for quite some time now has not been further re-examined, and me and my wife's questions still lingers for answers. I am at the mercy of this neurosurgeon because he the only neurosurgeon in the town I live in. My wife and I are at the mercy of the internet and our research has brought us to medical websites, forums, blogs, etc..., and that's where we find the information we need to be aware of. What I once loved doing for a fun activity, I am unable to do, which is scuba diving. My daily activities are slim to none due to daily excruciating headache pain and other affecting symptoms. Upon waking up from my already para-insomnia state during the night, I feel fatigued, sluggish, tired, and sleepy. During the daytime hours, I feel exhausted and find myself dozing off, even though I haven't done much. My headaches exert me to the point of me needing to sleep more than I am awake. What I once was actively involved in many aspects of living a life fulfilled, I now live an inactive lifestyle. My wife and I have noticed a week ago that my implanted shunt is more noticeable than it should be. By touch, it feels it has somewhat protruded significantly. Since then, we both have noticed changes in my auditory, physical, and psychological demeanor, and we've also been noticing an increase in my symptoms, except for vomiting. We are aware that me and my shunt need to be looked at for further re-examination, and on what's really happening. I've had this MedTronic Programmable VP Shunt since 2004, and because it's just a machinery, it will need to be either revised, or I will need a shunt replacement. I pray I will not need another brain operation for a Shunt revision or replacement. Should anyone know of any top ten neurosurgeons at University of California, Davis in the Sacramento area, please drop us a line. We have a relative who lives there who we are able to stay with, to save monies we don't have. Our prayers and good wishes to you all. Take care, and God Bless. |
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| Name: J.R.! | Posted: 2010-05-09 23:34:28 |
| E-Mail: maninpa2009@yahoo.com | Location: Erie P.A.! |
| Hellow! I'm Aviah's son! i would Love to chat with all most of you. butt if not all most of you! It will help me to understand! more about what I have! my mother has told me about most of it, as well as my familly! BUTT do I realy understand? sometimes I want to meet someone that has the same thing that I have! I ask a lot of Qustions and i'm looking for some people to Ask me some Qustions to see if i can't help them! and if i Cant help them! Then I know somthing that will Help Just talking to people! will help more then telling them what the Doctor's will tell them! I Really would would like to meet in person! and talk to see what they are like! :) I'm a veary Nice person! That everyone will just like! If i don't have the Ancer to your Qustions! HAVE A GOOD NIGHT! AND HAPPY MOTHER'S DAY TO ALL THE MOTHER'S ON HERE! |
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| Name: aviah | Posted: 2010-05-09 01:55:45 |
| E-Mail: aviah@atlanticbb.net | Location: erie pa |
| hello,im aviah and i have a son jr who has had so many shunt surgerys i can not even start to count.he is now 23 and is going through a very bad time. he has been in the hospital for 3 weeks due to shunt problems caused by a hit on the head.the doctors sent him home early this week we were so happy,but now he cant even reamber what he did a hour ago or if he had his meds.im feeling so upset i cant stop crying i did not want to cry my self to sleep,so i went on line to see how many people had some of the same problems and found this site. it realy helped me when i read some of the posts and know that there are others like my son. i will let jr know about this site later this morning.jr will be so happy to have other people like him to chat with.thank you for reading this post- aviah | |
| Name: Lynn Granzow | Posted: 2010-05-08 19:48:33 |
| E-Mail: Lynn.Granzow@comcast.net | Location: Grand Rapids, MI |
| My son is 24 has had one revision to his shunt. He has a learning disability in written expression and has had a hard time in college and transitioning into adulthood. Ideas? | |
| Name: Nathan Reedy | Posted: 2010-05-03 15:34:31 |
| E-Mail: n1986@netzero.net | Location: Denver, Colorado |
| My Personal Experience with Hydrocephalus, is that I was born with it, & that by the time I was 21 Days old, both of my shunts were put in. Life is not always easy especially because in addition to Hydrocephalus, I also have too much muscle tone on the entire left side of my body. This is a great Site Though! Nathan. | |
| Name: Evanjelita Cintron | Posted: 2010-04-30 21:23:11 |
| E-Mail: cintrone@gmail.com | Location: Florida |
| I'm a 27 yrs old woman who was born with hydrocephalus-VP Shunt. I have had 11 surgies so far and my last surgery was in 2001. Iam a medical of assistant and right at this moment I'm not working due to my low blood pressure and now that I'm 6 months pregant with my first child and married. I'm very blessed and fortune for this.I thought i would never be able to have any children and now I have a blessing from God. I have been a very lucky lady and never had nothing wrong with me besides having surgery after surgery replacing my shunt. I would advise to anybody who is in the same situation that I am is carry god with always and think positive and everything will be fine.I have carry God in my heart always and thanks to him he has been there for since forever. If I can do it so can you so don't give up please. God is big!! God Bless!!! | |