Brain injury white matter, encephalopathy, and encephalitis

Posted by Lisa @techi, Jun 18, 2017

I was told i had white matter in my brain. My previous neurologist was saying i had conversion disorder, depression, anxiety and the list goes on. I just went tl the mayo clinic and the doctors was suprised at what ive been through and how i still handling it. I told them it was just the grace of God. They are still trying to find out things because now my ana is high and they are trying to find out why. The cardiologist l went through in the past told me l had an enlarged heart and angina. The cardiologist at the mayo clinic said you don’t have heart disease only uncontrolled high blood pressure and its controlled now. Praise God. But I’m still falling and sometimes when l try to go to the bathroom or kitchen maybe enven feed the dog l cant. This Saturday l was talking to my daughter and we were laughing over the phone. I tried to get up and send the dog out and l couldnt. My husband put the wheelchair and my walker in the room. My lifeline was charging so l didnt have that on. I tried to get to the walker and i did but l couldnt get the wheelchair so l had to get down and slide to the wheelchair. I didn’t know how l would get up because both brakes weren’t on. I did get the other one on. I was trained in my clinical as a occupational therapy asst. about safety. I got in the wheelchair and i was able to get the dog out. Now this was a little hard because my hands was shaking. I know God was with me. I then had to get back in the room to sleep some of this off. I could only get the wheelchair up to a certain point in my beadroom and i knew i had to get in bed so l tried to pick myself up on the edge but l couldn”t so l knew if l went to the side maybe this will work. At first l tried the first time and l slide back and hit my head and my back was hurting. Now l can take anything for pain because l’m allergic to so many medicines. And it could be cause of my liver. So l tried a second time and it worked. I just had to praise God. I went to sleep for a few hours and then l was able to get up and walk. They said l have white matter in my brain and ceberal ischemia. I was also diagnosed with MS and Parkinson disease. I shouldn’t be able to write, read, and even think but it onlybthe Lord l’m still alive. And now he’s goven me titles to 2 books and l’m getting ready to go back to school to become a speech therapist assistant. When one door is shut God will open another if you just trust him. And through these trials l have so many learning about different types of illness and how you just have to hold you head up high because you can get through your difficulties no matter what they are. And l wouldn’t trade anything l been through because it gives me so much trust in God because he will only see me through.

@stephenluptak

I am not allowed to drive; my wife is to ill to take me on a long trip. Are you aware of Mayo-quality care in Memphis TN?

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@stephenluptak

Do you have any friends or family that might be able to help you with transportation? I have often called my church and asked for help for transportation to appointments and procedures. There are always retired people who are interested in a little adventure and willing to take a drive to help me out.

Also, I looked at the link that @jenniferhunter posted above regarding Mayo Affiliated hospitals: https://www.mayoclinic.org/about-mayo-clinic/care-network/members. I see that St. Elizabeth Hospital in Kentucky is a Mayo-affiliated. Here are the locations where they have neurologists, https://www.stelizabeth.com/find-a-location?serviceLineId=19185674-2c95-4838-b645-f97fde2a3dfa

Liked by Paul_2001

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@hopeful33250

Good morning, @stephenluptak

I just read your latest post and I see that you don't feel you can afford a trip to Mayo right now, and that is understandable. (Please remember that they have 3 facilities in Minnesota, Arizona and Florida)

In lieu of making a Mayo trip, look for a teaching medical center in your area (I live near Univ. of Michigan) which qualifies as a teaching/research hospital.

Another option would be to connect with an organization that supports people with brain disorders, they will often have a list of specialists in a particular disorder and will list their names and addresses from all over the world. I have a rare type of cancer, Neuroendocrine Tumors, and the national NET organization has a list of all of the researchers/specialists throughout the world. Through Mayo Connect, I have been able to help people find specialists, even in Sweden.

If you need some more help finding the best doctor to treat you, will you let us know?

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Hi Teresa, thank you for your offer of help. I could use it! The Hydrocephalus Association was able to recommend several pediatric neurologists, but not for geriatrics; I'm 68.
Again, thank you for your kind response!

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@hopeful33250

Hello again @stephenluptak,

One more thought for you in seeking the best treatment available for you. Are you aware that Mayo Clinic has affiliated hospitals throughout the country?
Here is a link to an article about this, https://www.mayoclinic.org/documents/cautiously-mayo-builds-an-empire/doc-20139626.

As you can see, from this article, the affiliated hospitals have direct contact with Mayo doctors for consultations. It might be a good option for you to consider in order to get the Mayo expertise, but just closer to home.

If you are interested in finding out more about a Mayo affiliated hospital in your state, you might consider giving one of the Mayo facilities a call and finding out where the closest affiliated hospital is to you.

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Thank you for your response. However, I didn't see a location within several hundred miles of Memphis,

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@hopeful33250

@stephenluptak

Do they have a medical school? If so, you might check out their neurologists online and see if any have specialities in the areas where you need help. Also, you could call the neurology/brain department and explain your problem and see what they say.

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I'll give UT Memphis a call!

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@hopeful33250

@stephenluptak

Do you have any friends or family that might be able to help you with transportation? I have often called my church and asked for help for transportation to appointments and procedures. There are always retired people who are interested in a little adventure and willing to take a drive to help me out.

Also, I looked at the link that @jenniferhunter posted above regarding Mayo Affiliated hospitals: https://www.mayoclinic.org/about-mayo-clinic/care-network/members. I see that St. Elizabeth Hospital in Kentucky is a Mayo-affiliated. Here are the locations where they have neurologists, https://www.stelizabeth.com/find-a-location?serviceLineId=19185674-2c95-4838-b645-f97fde2a3dfa

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Again thank you, but my last drive the trip to St. Elizabeth Hospital took me all day. My remaining friends in Memphis are sick/elderly.

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@stephenluptak

I would like to have access to Mayo, but I can't afford it. Is there a quality medical center in Memphis TN? So far, I have been less than impressed from the neurologists in Memphis.
PS: My dad recuperated from his WWII wounds at Mayo. He described it as a modern-day Lourdes! The Mayo staff performed miracles for my dad!

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Vanderbilt is very good as well

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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?

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@bstechman

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?

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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?

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@bstechman

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?

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@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.

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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.

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@geimdieke

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.

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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?

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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

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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

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@jimdhud

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

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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?

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@jimdhud

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

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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

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