Brain injury white matter, encephalopathy, and encephalitis

Vanderbilt is very good as well

My husband is a possible candidate for NPH spinal fluid testing and possible shunt surgery? Does anyone have an idea what the success rate of shunt surgery for correcting the ventricle pressure?

Hi, @bstechman, and welcome to Mayo Clinic Connect. You'll note I merged your post here to this post, "Brain injury white matter, encephalopathy, and encephalitis." I did this so the members already discussing similar topics would see your message and so that you could read through what the members have already shared. If you are replying by email, you can click on VIEW & REPLY to be brought to the new location of your post.

Please meet @jeancary @stephenluptak @uldiver @jenniferhunter @hopeful33250 and others who've been part of this discussion. Hoping they can add some thoughts about your husband being a possible candidate for normal pressure hydrocephalus (NPH) spinal fluid testing and possible shunt surgery, and the surgery's success rate for correcting ventricle pressure.

Also, this Mayo Clinic information about hydrocephalus may be helpful: https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604

@bstechman, what symptoms has your husband been experiencing?

@bstechman Hello and welcome. I wanted to share what I know about shunt surgery. My father in law had that done when he was elderly and he did just fine. We had to sit with him in his hospital room because he kept pulling out his IVs. He was suffering with Alzheimer's at the time and had been aggressive toward other people, so that is why they did the surgery because he had some increased pressure in his spinal fluid and an enlargement in a ventricle. Some of the aggression was probably from the Alzheimer's. I don't recall how long it took him to recover from the surgery, but it wasn't disabling to him. He wasn't really aware he had it done. He just wanted to get out of the bed and go somewhere. Maybe it was a week or two, and he was able to return to the nursing home Alzheimer's unit. My dad had a bur hole put in his head after his head injury (skull fracture) to relieve pressure, but for that, they induce a medical coma. That is a standard care after a head injury because brain swelling from the injury can kill you. That lasted about 2 and half weeks if I remember correctly, and there were no bad effects from the bur hole. He had some brain damage and recovered to a degree, but was never quite the same. He passed 2 years ago, and I still look after my mom.

My husband was recently diagnosed with NPK after an MRI revealed enlarged cranial ventricles Has anyone in this group had experience with this condition? He has an appt with Mayo neurologist in early December and with Neurosurgeon a few days later.

Hello, @geimdieke. Welcome to Mayo Clinic Connect. We do have some members who have talked about normal pressure hydrocephalus, and because some of them are talking here in this discussion,
"Brain injury white matter, encephalopathy, and encephalitis," I've merged your post here.

Please meet @bstechman @stephenluptak @techi, who can tell you about their experiences with normal pressure hydrocephalus. @uldiver @johnbishop and @hopeful33250 may also have some input for you on this condition and as your husband and you prepare for his upcoming neurology and neurosurgery appointments at Mayo Clinic.

What are your and your husband's biggest concerns at this point, @geimdieke? Do you have any questions?

Hello, @geimdieke. I would like to add my welcome to Connect with @lisalucier. I don't have any experience with this condition but found an article that may provide some more information for you while you want for others to join the discussion.

Enlargement of cerebral ventricles as an early indicator of encephalomyelitis.
-- https://www.ncbi.nlm.nih.gov/pubmed/23991157

It may be good to write a list of your and your husbands biggest concerns and/or questions and taking them to his upcoming neurology and neurosurgery appointments. It helps me to have questions written down before an appointment so I'm able to recall and ask questions during the consultation with the doctor.

John

I am 85 and have had conflicting diognosis. About four years ago I fell ( due to a wrench slipping) and hit my head on concrete. Never lost conscious, but took six staples to close the wound. A little over a year later,I became aware I could walk a straight line. No pain involved and thought it would pass. It got worse so went to my internist. He sent me to a Neurologist at Metholisist Hospital Houston, tx. He ordered mri and spinal tap. Spinal made NO difference in my walking! He said I have NPH and needed surgery to get better. I wanted second opinion, and went to the top group at University Texas Medical branch. 2 nd spinal & mri. No change in my walking. Their lengthly opponion was I may have it but the test don’t verify it. About six months latter I found the top truma brain surgeon with Herman Memorial Hospital. Again he looked at the old test and decided I may have it, but can’t verify it. Did NOT recommend surgery based on the earlier test. In the mean time my balance is getting worse as my walking stibility. I need a knee replacement which adds to the confusion. I have recently gone into a wheel chair! I go to the gym once a week for leg exercises. I feel good and would fly to see whoever if it would help. I have always been very active, and this has shut me down. Anyone have any suggestions.
Jim Huddleston

Hi, @jimdhud, Welcome to Mayo Clinic Connect. I can imagine it's very confusing to have conflicting diagnoses.

I moved your discussion and combined it with this existing discussion, "Brain injury white matter, encephalopathy, and encephalitis" so that you could meet other Connect members who have discussed similar situations to what you are experiencing.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members like @bstechman @stephenluptak @techi @geimdieke @jenniferhunter @johnbishop. I trust they will have some thoughts for you on the conflicting diagnoses and what route to go at this point.

Here’s some information from Mayo Clinic about hydrocephalus https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604

As the brain surgeon did not recommend surgery, what did he suggest for next steps, @jimdhud?

Hi @jimhud, I would like to add my welcome along with @lisalucier and other members. I don't know much about NPH but I would not feel comfortable opting for surgery when faced with conflicting diagnosis if it were me. I did find some balance therapy tips for NPH patients which may be helpful.

-- https://www.hydroassoc.org/balance-therapy-tips-for-nph-patients/

John