Hydrocephalus

[livingwith]

I am a 55 year-old female who was diagnosed with hydrocephalus in 1993 at age 39. My symptoms included severe headaches with extreme pain in my eyes, morning nausea, confusion, and numbness and tingling of the extremities. After confirmation of hydrocephalus by CT and MRI studies, I received a VP CSF shunt in 12/93.
I was told by my neurosurgeon that my hydrocephalus was most likely congenital and my body began “decompensating” for it due to the aging process. I have had no prob...Read the full article

[Jmoore]

Hi. My husband, who is 33 years old was just diagnosed with Hydrocephalus 2 months ago. They say this was congenital also. He received the shunt on 12/06/08. This was caught by a routine eye exam and swelling of the optic nerve. He did not have many symptoms. He is now recovering but if you don't mind me asking how did you feel immediately after surgery? Emotionally he is having a very hard time dealing with this. It is great to hear that you have no problems or complications. I have been searching the internet for success stories for him and you are the first one that I have found. Just curious how long before you felt completely normal again?

[mp327]

Hi J. Moore--

So sorry to hear that your husband has had to undergo a shunt placement for hydrocephalus. I think it is a difficult diagnosis to get as an adult, especially when you have lived a normal life up to that point. As I mentioned in my intro, I was 39 when I found out about mine. I had had killer headaches, especially pain in and around my eyes prior to diagnosis, along with confusion, memory lapse, and numbness and tingling in my extremities. When I had my shunt placement in 12/93, I remained hospitalized for 2 days and was limited to lying on my back during that time. As I recall, I did have some pain, not necessarily a headache, but more related to the incision area. Mine is a VP shunt and that small incision in my abdomen was quite painful, not to mention the one on my head. Once I got home, I slept a lot--I think it just took me awhile to completely shake the effects of the anesthesia. However, after seeing the surgeon a few days later for a follow-up, I was released to return to work about 10 days after surgery, but no driving for a couple of weeks. I felt very good after the shunt was placed, and all of the above symptoms subsided very quickly. The only time I have ever had a concern after the surgery that there might be a problem was about 8 months post-surgery. I was having cognitive problems and occasional headaches. I saw the surgeon again, who "tapped" my shunt, and sent a specimen of my CSF to lab to rule out infection. It came back clear, and by the time the results came back, I was feeling much better.

I think the hardest part of this disease for me has been the stigma attached to it. Perhaps this is what is making it difficult for your husband to deal with the emotional side of all of this. Most people know of hydrocephalus as "water on the brain," a term which I absolutely hate! It conjers up thoughts of someone with an enlarged head and limited intelligence. Neither of these apply to me or your husband. But this disease is so misunderstood by the general public. Therefore, I made the decision when I was diagnosed to share this news with only those closest to me. I did not want to give anyone the idea that I was different because of this disease. I was an intelligent, independent woman, holding down a job with huge resposibilities, and I did not want anyone forming new opinions of me, based on this diagnosis. I don't know how you and your husband have handled this news--whether you have shared it with others or not. I know everyone has to deal with this on their own terms. I chose to not share it with everyone I knew.

As for how I'm doing now, 15 years post-surgery (my anniversary was on December 29th.!), I am doing great, despite a huge unrelated setback this year. In June, I was diagnosed with anal cancer--yes, another disease that is misunderstood and carries a stigma. I began 6 weeks of chemo and radiation on July 28th., which concluded on September 9th. Since that time, I have been working hard to regain my level of fitness and energy, and resume my normal activities. I am just about there--there are only a few things that have yet to return to pre-chemo/rad status. My hydrocephalus was only a concern when I had surgery to put a chemo port in my chest. Normally, these are put in on the right side. However, due to the shunt tube route, which starts on my right side, goes across my collar bone area, and passes just to the right of my heart, into my abdomen, it was decided the port needed to be on my left side. This eliminated any risk of interference with the shunt tube.

I am a very active person. The only limitations the neurosurgeon put on me after surgery was no skydiving (no problem!) or climbing. Well, no desire to jump out of a plane anyway, but the climbing thing, I have somewhat ignored. I volunteer to help build houses and have been known to get on roofs and scaffolding, and have climbed around in the rafters 2 stories up (please don't tell my neurosurgeon!). I am also a runner and have gradually built my strength and endurance back up so that at I can run 3 to 4 miles on my treadmill 6 days a week. I also lift weights 3 days a week, and am back up to my pre-cancer weights in most exercises.

I am only telling you all of this in hopes that it may encourage your husband. I am determined not to let either of these diseases control my life or limit me in any way, if I can avoid it. I feel like the hydrocephalus is a "done deal" and really don't think about it on a regular basis. Even when I wash my hair (which I have less of right now due to the chemo), I don't notice that bump on my head. I know hydrocephalus can be a challenging disease for some people to live with, but I have been very fortunate.

I wish you and your husband the best in dealing with this. Please feel free to post on my thread any time you have any questions I may be able to answer, or if you just have a need to "vent" to someone who has experienced what your husband is going through. I will keep you both in my thoughts and prayers and would appreciate an update on how he is doing. Take care.

Martha

[Jmoore]

Thank you so much for your response. I hope your story will help him realize that he can not let this hold him back from doing anything! He is a fireman and afraid that he will not be able to return to work. His follow up to be released to work is tomorrow and I hope everything will go OK. I just hope he can get back on his feet. I worry about him because we have a 3 year old son and we were hoping to have a big family and this diagnosis has made him think maybe we shouldn't! He thinks only the worst is going to happen to him. I am hoping this is anxiety and he will get past this.

I appreciate your responding and I will keep you in our thoughts and prayers. I get the impression you are a very strong woman and will get through yet another obstacle in your life! Good luck with everything and I will keep you posted on Tim's success! Thank you so much again! I can't tell you how happy I was to find your story and share it with my husband.

[mp327]

Hi!

I am so glad that I was perhaps able to boost both you and your husband's spirits with my story. I know this is a difficult time for you and, despite support from family and friends, it can be helpful to hear from someone who's actually been there. He is still recovering from the surgery, so I would urge him to be patient with himself. It will take a little time for him to feel like normal again, but it will come.

I must say a big thanks to him for his service as a fireman. That is a career that requires a lot of courage and strength. Thus, I feel that he will benefit from those characteristics in dealing with hydrocephalus.

As for having children, I, for sure, am not an expert on this, as I have no children. But I would say this--if that is a dream that you both had prior to his diagnosis, I would not give it up due to this disease. There are many people who are living completely normal lives after shunting, and I feel that your husband will be one of those people. Since I have had to fight two diseases, my attitude is to not allow either of them to control my life. I may get bad news sometime down the road, but I don't get up each day just waiting for something bad to happen. I don't want to look back and say, wow, all those days or years I could have been living my life were wasted just because I was waiting for the next bad thing to happen to me.

I am going to make this confession, in hopes that if this seems like something that would be beneficial to your husband, or both of you for that matter, you may consider it. A few months after my shunt surgery, I was feeling real pity for myself and feeling like I was somehow less of a person. I mentioned this to my primary care physician and he encouraged me to get an appointment with a counselor. I was reluctant, but did so, hoping that it could help me work through all those feelings. As it turned out, it was very helpful, and after a few sessions, I never felt like I was any different than before this all happened. I know it may not be easy to talk to someone about these things, but for me, it was exactly what I needed to do. It's just an idea to consider.

I do hope you will keep me posted on your husband's progress--yes, progress! He will continue to get stronger and find that having a shunt really is no big deal. It improved my life so much! Had I not been diagnosed and received the shunt, I do not know where I'd be right now. Please know that you are both in my thoughts and prayers and I look forward to hearing from you again in the future.

Martha

[Jmoore]

Martha,

Just wanted to let you know that your story has helped my husband sooooo much! He had his follow up with the Dr. yesterday and everything came back perfect! I see a change in him already . They released him back to work with no restrictions and he could not be happier. I know he is dealing with a great Dr. at the University of Chicago and we have the utmost confidence in him. Thank you again and hope you are doing well! We may still have to make an appt. to see someone and that helped me convince him when you said that you did and it made you feel so much better. Thank you for sharing such personal information to benefit him. It is good to know that there are great people out there who care about a strangers well-being, especially when you have so much going on with yourself right now. Thanks again.

Jennifer

[mp327]

Jennifer--

Thank you so much for your kind words and for the update on your husband. I'm so glad to hear that his appointment yielded nothing but good news. I'm sure that being released to return to work by itself was a great lift to his spirits. He now knows that his doctor is confident that he can resume his previous activities and get his life back to normal. This is a huge step in helping a person overcome the emotional drain from this disease, or any disease for that matter. With my cancer, there were so many little things that I regained after treatment ended, and each one was a huge victory for me--like going up the stairs without having to rest on the way!

If you think of it, I would appreciate an update sometime in the future as to how your husband is doing. These past 15 years, I never saw any good reason for me to have this disease. But, since joining this forum, I now know that good things can come from bad. We must all use our experiences with this disease to help others who are currently dealing with it.

I wish you both the very best in your life together. You are troopers and have come through the worst part of this disease. Keep looking forward and celebrate all the things that make your life great!

Martha

[mp327]

Jennifer--

I would like to know how your husband is doing. I have thought of him often and wondering how his return to work has been. If you log on, please give me an update if you can.

Thank you--
Martha

[Jmoore]

Hi Martha,

He is doing a little better day by day. He is back at work but has been seeing numerous doctors. He is on an anti-depressent and some sleep medication. He just started seeing a counselor on Saturday and will continue to go once a week until he feels a little better. Physically he is doing great! Mentally not so good. I will keep you posted. Thank you for asking!

[mp327]

Jennifer--

Thanks for your response to my post. I'm glad to hear that your husband's return to work has been successful and that he is seeing a counselor. It is a difficult thing to accept, but with the proper help, I'm sure he will overcome the emotional side of it. I'm so happy that he is doing well physically.

I would appreciate keeping in touch with you from time to time, just to know how he is getting along. I know he will be fine, but you must give him some time to work through all the things he is feeling right now. He's been through a lot. I'm sure you are a great support to him, which is what he needs the most. Take care and please post if you have any areas of concern I may help you with or you just need to vent. I really do care.

Martha