Hello Everyone,

I hope you are all well and happy! I am so happy to have found this site, as I am totally, absolutely desperate for some help.

My husband was diagnosed with Hydrocephalus in early June this year, he is a 61 year old engineer.

What has happened since then has been a real nightmare - not of the garden variety.

I will explain our journey thus far, although I am sure many of you will doubt its authenticy as I myself cannot really believe the chain of events. Apologies for the long winded post, but if I don't get it all down somewhere, I am going to implode as I do not have much of a support network, with most of my family scattered throughout the country and not close.

June 2011, Diagnosis of Hydro - tried Third Ventricluarostocomy - did not work.

July 2011 Insertion of VP Shunt into Abdobmen, which 1 month later was 'rejected' by the body. My husband kept telling the neurosurgeon that the shunt was not 'working' and was labelled paranoid and told to give it time, only after he absolutely insisted, did they take him seriously and investigatge to find out that it was in fact recoiled back into his abdomen and was 'free floating'.

September 2011 Reinsertion of VP Shunt into Abodomen, which was rejected yet again. Same as above he was ridiculded, told to go on anti depressants and 'get a grip', went to another neuro who checked it out and found out, yes it had 'recoiled' yet again.

October 2011, Insertion of Shunt into Plural Cavity. (Dire outcome see below).

While the above sounds reasonably standard, it really was not, my hubby is an Engineer (lots of experience in fluid dynamics, mechanisms, etc), when he woke from the last round of surgery he was fine for 24 hours and appeared to be convalescing as he normally does, which is really well. The next day though he was acting really, really weird, banging his head on the wall, screaming out in pain, incoherent and totally disoriented in terms of not knowing who he was or where he was. His symptoms were as if overnight he had developed high level senility. The doctors responded with all of the normal tests, ie. shunt tap (it is working), CSF cultures (all normal), MRI of the neck, as the unbearable pain is at the base of the skull found normal arthritic changes consistent with age.

This syndrome has continued for 9 days while he has been hospital with the neuro (who is one of Australia's) top surgeons is unable to explain why this has happened as the last op was only to re site the tubing from the shunt from the abdomen to the plural cavity.

I have demanded every test available and they have not been able to find out what is going on - meanwhile the man I know and love is no where to be found, instead I have a shell of a person who has to try to cope with unbearable pain which the Doctors keep saying is a psych problem as the shunt is functioning and there is no infection.

It is not a psych problem as there has been no sign of any of these symptoms from previous ops; Hubby is presently home but unable to function other than get out of bed fro 15 minutes at a time for basics, eat, sleep etc, he is also very, very confused and stammering and stuttering.

It is heartbreaking and I can't seem to get any help. Any advice or similiar scenarios/outcomes gladly received.

Not wanting to burden anyone, but surely someone has seen something like?

HydroWife x

Hi HydroWife and welcome to NeuroTalk. Here is the link to our Hydrocephalus Forum..http://neurotalk.psychcentral.com/forum14.html

I hope you will find some answers and support there. I'm glad you have joined us but sorry for the reason.

Hydro - what your husband has experienced is not beyond belief! I can tell you from experience that unexplainable medical phenomina happen more often than you think. My doctors had no medical explanation for how I survived what should have been a fatal overdose.

I hope with all my heart that your husband's terrible symptoms can be understood, treated, and relieved!

I hope and pray you find the help you need for your husband. When you are in that kind of pain, it can and does destroy lives. don't settle on just one or two opinions, keep going until an an answer can be found. His pain is real, and don't let some physician tell you any different. People don't act like that because they want to, it is the pain that causes the behavior. I will keep you in my thoughts and prayers. I hope somebody on this neuro site can direct you to more help. You will find support and compassion here. I wish you both all the best help you can find. ginnie

I agree Ginnie, there has to be a reason this has happened but all they keep saying is he is depressed whack him on a strong 150mg doze of anti depressents 'he'll be right'. I am not going to stop until I find out whey.

Welcome, and lots of hugs for you both

It is sad to watch your husband in that shape. Your love will hold you both together. You can only do what you can do.

I am not familiar with hydro problems, but there's many here who are.

I pray you find some peace in your life, someway.

24/7 pain is terrible to endure.

Try to take care of yourself, ok?

HydroWife,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, just let us know how we can assist, you see we are are supportive and relaxing place to be. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Don't let them just give him anti-depressants, that doesn't cut it for pain like that. Sometimes it takes a supreme effort to find the doctor that can get to the bottom of the trouble and not just blow you off. I was not depressed before all the pain I went through. Pain can put you in a very bad place indeed. I hope you get that help, and please wish your husband well from me. Keep close as you can to him for support. Take care of yourself too with sleep and all. You are in my thoughts and prayers. ginnie