Arrested hydrocephalus

[hodsdonn]

Hi to everyone. In May of this year I had a MRI and was dx with enlarged ventricles (actually they called them "massive"), thinned or absent corpus callosum( they are not sure which) and if they had to come up with a dx. it would be "arrested hydrocephalus". I have seen 2 neurologists and 2 neurosurgeons and also seen in
the USF Neurology Department in this short 3 months. They have not been able to supply too many answers, just theories. They all do agree that I was born with this condition(and lived with it for 55 years without treatment or knowledge of it). I have mild cerebal palsy, they think. (they use this term to explain my shuffling gait, clumsiness and spastic reflexes, I had none of this until recently). Both neurosurgeons agree that I would not benefit from a shunt. All of this is news to me, I have basically been asymptomatic until just recently. In the past 10 years, I graduated from college with honors, yet these experts say I have decreased brain matter. How can this be? I desire to get another opinion at Cleveland Clinic since we have connections there. My problem is that my health insurance will not approve this. My primary medical MD is working on getting this approved, but all of this takes time with no guarentees. From a medical standpoint, should I be concerned with the lag time? It is frightening to just learn about this at my age. I am reading about this as much as I can, but there are so many opinions out there, it gets confusing. Even my dx is confusing. Any suggestions are welcomed. You can also contact me via email : k.hodsdon@att.net Thank you and God Bless.

[LIZARD]

I'm sorry you're going through this and wish I had some wisdom for you. I'm wondering if you have been to the wrong surgeons. I can tell you that a neurologist will do NOTHING, because he can't. You do need a nsg, and it's so important that you get one who's well-versed with situations like yours. The fact is that, if you were asymptomatic and are now experiencing symptoms, you do NOT have arrested hydro, plain and simple, and if your symptoms are worsening rapidly, time is of the essence. I would contact the Hydrocephalus Association at www.hydroassoc.org, or the National Hydrocephalus Foundation at www.NHFOnline.org with everything you told us. I think you need help right away.

Good luck!



LIZARD

[Nat Hyland]

Normal Pressure Hydrocephalus? This sounds more likely in someone of your age. I doubt that you would have survived this long if you have had untreated hydro (with massive ventricles, as you put it) since birth.

Nat.

[hodsdonn]

Hi Nat,
Thank you for responding. That was my point as well. How could my ventricles have always been this "massive" and I just developed symptoms at my age? I did ask this question when I saw the neurosurgeon at USF. He encouraged me to get other opinions and admitted he just had theories as to why I have been able to live out a relatively symptom free life until just recently. I respect that he was comfortable enough to answer many of my questions with "I don't Know" but I want to be evaluated by someone until I get better answers. My insurance is fighting this request and my primary providor is appealing this for me. Unfortunately, that is the way my insurance operates. In the meantime, I have fears for my health although at this time I feel well. I have the number to Cleveland Clinic scheduling and also have a personal friend who is a Neurologist there.I feel more comfortable getting an opinion from an Institute of their size and reputation as opposed to USF. This chasing physicians and insurance companies is frustrating and tiring Any other suggestions?

[Becky1219]

Your post is extremely interesting to me. My son, 2 years old, was dx this past spring with hydrocephalus, hypoplasia(thin) of the corpus callosum, decreased myelin, metopic synostosis, chiari 1 malformation, tethered cord, syringomyelia, etc... When he was born he had esophageal atresia, tracheoesophageal fistula, and a bowel perforation. Anyway, getting to my point, obviously all of his specialists are keeping a close eye on his head circumference, but his NS said this "since he has decreased myelin and his head/brain are of normal size something has to take up the space of the myelin, so the CSF is doing that." A shunt is still a possibility, but he has so many issues we must deal with the most pressing first and like your NS his does not think it will make a difference at this point. He just had his tethered cord released in June and is scheduled for urodynamics testing in September which will lead us to the next step (surgery).

As for your cognitive ability, from the literature that I've read, there really doesn't seem to be anything to predict who will have normal cognitive ability and who will not when it comes to the ACC or P-ACC and also the decreased myelin. There is a full spectrum of cognitive abilities with these anomalies. Jack is a smart little boy, but he does have motor planning problems which is why we had the first MRI ordered in the first place.

[DystoniaGal]

Before you go all the way up to CC, why not try getting a consult at Shands at UF here in Gainesville. Fantastic group of NS, been with them for 6 years and have seen most of them in one capacity or another. If you want more info here is a link http://www.neurosurgery.ufl.edu/

Shoot me an email at dystoniagal@gmail.com I am in medical billing and coding just curious with some insurance questions for you.

[Zubenelgenube]

Arrested hydro is very rare. It would be a good idea to get a pressure reading. If the hydro is very active, the pressure will be elevated. With "normal pressure hydro", it is not so simple... it is more subtle.

Have you been forgetful? Headaches? "Tightness" in the head? Pulsing vision?