After effects

[sadlisa]

Hi all,

Iam wondering what after effects anyone has. How long they have had them and if they are better over time. Has anyone had a doctor figure out what is causing their symptoms and what was done to help?

My after effects/symptoms are always worse when I exert myself. They have been bothering me for 8+ years now. They are not as bad as they were in the beginning, but have not resolved. The worse ones are: lightheaded/dizziness, headache, stiff/sore neck and occasional nausea. I have explored the idea of a CSF(spinal fluid) leak and none has been found. My HNS(ent) is now thinking that because I lost my hearing in my right ear that maybe some of the nerves might be causing these symptoms. He wants to try a labyrinthectomy (removing the inner ear) to see if this helps. Since I have no hearing in that ear I really have nothing to lose. Has anyone had this surgery? Did it help? Thanks,

Thia

[dmat01]

I wonder about the aftereffects also with my husband. I know that I recognize one thing- the aftereffects( Symptoms) are real. We have explored the spinal fluid leakage also. So far, they say that is not an issue for him. But, whenever anything occurs like a seizure, headache, earache, name it, whatever- then he seem to lose any ground he has gained. His cognitive skills take a nose dive, his hearing worsens( if that is even possible). He becomes more mechanical in his talk and motions after any issue. Where I can get a cold and manage through it- He does not. Unfortunately, many times what is an issue for him, seems very trival to others.( they just don't understand ) You know, we take for granted so many times how uneventful most experiences are until someone we love gets something like meningitis. I honestly take nothing for granted anymore. I wonder each time we experience any event ( little or big by our calculations) what the overall event is going to be on him.

As for hearing, He was literally almost completely deaf when coming out of the comotose state. According to the doctors, he does not hear any better, and he has three different issues concerning his hearing. But he has learned to compensate the loss with speech therapy concerning the central nervous system, lip reading, and some really outdated hearing aids he had prior to the meningitis. We have been advised to go for the cochlear implants and advised that it was too much of a risk because of the meningtis. A few Doctors say they do it all the time, and other Doctors say that they would never consider it. I say this, I am still seeking more professional input concerning our issue on hearing because to be quick frank about it- everyone has a different opinoin and there is no real data to completely validate the opposite varying viewpoints. I usually say nothing ventured nothing gained- but after meningitis has entered our lives, I am not sure I believe that anymore.

I want to encourage you in your journey. I answered this post because encouragement from those whom have walked this path are not so readily available for this disease. Yes, people do get this disease, live with it, and suffer through a lot of it, but it's not your neighbor, relative, or immediate friends whom have any experience with it. If I was not able to help you any other way, at least I hope that this contact encourages you that others are walking in the shoes of aftermaths of meningitis,there are others which understand what it is like from the inside, and you are not alone in your search of knowledge and resources for the decisions concerning this disease.

[sadlisa]

Hi dmat,

I have not checked the forum for a while. It is nice to get your reply. When you say your doctors say a csf leak is not an issue why have they said so? Is it because of his symptoms or have they tested for one and one has not been found? I have had extensive testing to look for one, but none has been found. It is frustrating because it took 3 years before anyone would listen to me when I said I had symptoms that would not resolve. It was just too easy for them to say "after affects of meningitis." By that time I think I was 75 % healed and the problem will be a hard find. There is no one to my knowledge who specializes in after affects of meningitis.

So far this very healthy person who never gets sick has had 4 surgeries after meningitis. I believe it is the under lying problem that is causing this havoc in my body. These surgeries after meningitis (2-2001) include ovary cyst (8-2003), parathyroid (12-2006), sinusitis (9-2007) and labyrinthectomy(10-2009.) I now have a complex cyst on my kidney. I am waiting the results of the CT scan. All of these things are happening to me and I never get sick. No colds or flu since my meningitis. My symptoms still get worse with exertion. Something is causing this.

I hope your husband continues to improve. If you would like to chat by email send me a pm and I will be happy to listen and share what I know.

Thia

[sadlisa]

It is so. A test for Beta 2 Transferrin confirms I DO HAVE A CSF LEAK! It only took 6 1/2 years of trying to convince my doctors this could be my problem. I will now get another test to look for the location of the leak. This time my doctors have made a plan, they are not just throwing a test at me. I will keep you all posted.

Thia

[dmat01]

Thanks for the last post. I have gone back to work. Most nights I am so tired that I have forgotten to check the site.
Why they say he does not have a leak- I don't know. But, with the information you just shared, I am certainly going to pursue an answer again. Update- the seizures are stilll a horrible experience. He had a seizure on December 2, 2010 and mostly likely another stroke. Depending on which test they use to compare with, some say he has hit his baseline again and others say he has slide down a bit. As for me, I know that he has lost some ground. But, I am not the doctor, I am only the one whom lives with him daily and sees the ups and downs through each episode not some notes left in the chart by the previous providers on duty f the prior episode. What does a test for Beta 2 Transferin consist of, and what is the expectations of findings from this test. I am very interested. Leakage was discussed from the beginning and I can't remember exactly why they said there was none. But, the puncture site did cause damage to a disk, and it is something that is treated with pain medication at this time. Only at the onset was leakage discussed and ruled out almost immediately by saying it was damage to the disk due to the puncture site.

He was at the ER again yesterday. It was a scare. The Doctor did a Cat Scan with contract to rule out blood clots, heart problems, or lung issues. The Cat Scan reflected something in which the Doctor said is indications of possible heart problems in our future. The cardiologist looked at the test and said to make an appointment for further care of this issue. What issue, I don't know. I guess we will find that out when we have an office visit. Sometimes I feel as if they believe they spare us when they prolong telling us the whole story or potential possiblilities at once. I guess they fail to realize we would rather know sooner than later. And afterall, since Oct 09 we have learned to soak in whatever it is and find the way to navigate through it. He is on more antibotics.... it was a bacterial infection bronchitis. Bacterial Infection is two words that we never like to hear. So, time will tell the story about how this episode plays out. I am hoping for the best, but always prepared for whatever it is.

I so much appreciate when you share what you know. It helps me tremendously. Look forward to future post. I promise to check more frequently.

[sadlisa]

I too have not visited the forum because I had to reregister to log on. I decided to reregister when I found out I did have a leak. I wanted everyone here to know. Don't ever give up looking for answers. It took me a long time and a lot of rejection from nay saying doctors. Most said you don't have a leak. We have to stay strong. I do frequent a CSF leak site because I was 99.9 % convinced I had a leak. My history and symptoms fit. I do think you should ask again about this. What are his symptoms? He could even be leaking at the LP site from when he was diagnosed with meningitis. If he has a runny nose, it could be CSF(cranial leak.) Beta 2 Transferrin is only in CSF, perilymph fluid and something else(that I can't remember at the moment.) If you can collect some of his nose drippings in a sterile container it can be tested for B2T. If B2T is present it will be positive and they will know for sure. My nose was not very runny and I had to use pieces of cosmetic sponges(new, sterile) to collect the fluid and squeeze my drippings into the container. I feel as if my leak is slow and intermittent at this time because my body has tried to heal.

Does he have a headache that is worse when standing and better when he is laying down? This is called an orthostatic headache and is the main symptom for spinal leaks(like where his LP was.) My headache is not that bad and is a cranial leak.

If you have questions and want to PM me, we could communicate directly. Good luck, Thia

[taramills]

First of all I am so happy to have discovered this site. I don't have any hearing problems from meningitis but wanted to reply about after effects. Also it is so true that it is not well understood about how it can effect you years later. When I get a cold or virus or anything even just too much stress, I end up always getting an infection of some sort or other. For the past nine years I have been on antiobiotics at least three times a year. I am often embarressed that I am sick or in pain so often as compared to other moms and friends. I always feel that no one takes how I am feeling seriously ( even doctors). Has anyone felt like this? I also feel that I am constantly inconveniencing my husband and not being as available as I would want for my three children. The most frustrating part is that I don't have a name for what is going on, so I can't easily explain it to others. Has anyone seemed to have returned to normal only to find that years later they have an increase in symptoms of muscle pain, headaches, and even confusion and anxiety? I don't feel comfortable commiting myself to making plans to do stuff anymore because I never know when I will have a "bad day".

Have most of you had bacterial meningitis? I actually had viral but it was very severe and I was hospitalized for 3 days and released earlier than I should have been due to no insurance and the need for me to get back to my 6mo. old. I received no aftercare and went right back to work within 2 days dispite not felling great. I did not know that I would go through chronic sickness afterwards and never realized that my problems could be linked to the meningitis episode untill I started seeing my new doctor who has done everything in an attempt to diagnose the problem. She feels that damage occurred in my central nervous system. What treatments have any of you tried for these problems? She is still trying new things with me.

Thanks for your time,
Tara

[dmat01]

My Husband had Streptococcus pneumoniae meningitis, which is also referred to as Pneumococcal bacterial meningitis. He has central nervous system damage, profound hearing loss, migraines, back pain, muscle issues, seizures and cognitive skill deficits. He went through extensive Physical Therapy, Speech Therapy, Occupational Therapy and Cardiac Rehab. His disabilities are rated severe with no likelihood he will ever be able to seek gainful employment.

I write a journal his journey since meningitis on caringbridge. org. His site is Http: //caringbridge.org/visit/denniemathews/my story. I wish I could have found someone's journal at the onset of our journey. I was lost and navigating through what I was very unfamiliar and scared about.

I can so relate to your post. So many times, we did not feel as if anyone cared about his many issues since meningitis.
Just this week, He was told that his thyroid has stopped producing. His primary Physician could not tell us without doubt meningitis did not contribute nor could he say it was the absolute cause of it. There are just too many unknowns. Although many people have thyroid problems, the meningitis is extremely suspect as the origin of this issue.

I trust our Primary Care Physician and Neurologist. But, I can not say trust is so forthcoming whenever we encounter other Medical Professions. At times we find Medical Providers whom are interested because they know virtually nothing about meningitis. Many times, some have been brutally honest concerning their lack of knowledge. They have told us that they did not have any working knowledge of the disease. They question and probe about our journey since meningitis. They are willing to learn. They are not ashamed to admit their lack of knowledge.
There is little room for lots of confidence when I am educating the medical providers whom I have sought out to meet his immediate medical needs. Emergency room triage and treatment can be very scary when they don't have any or much of a clue.

Although I am willing to talk to others about this disease, I hope you can relate and understand why I am not thrilled to be educating the ones whom I have sought out treatment from. I am always willing to talk about his illness in order to educate my family, friends, neighbours, co- workers, and even strangers willing to listen. I want this disease to stop being able to have the "bite" it does to its victims, survivors, and their loved one.

Therefore, I finish this reply with this question? Is it lack of concern or caring on the part of the medical profession or is it ignorance? In the eyes of the one seeking care- either one leaves you discouraged and causes you to feel like you will never find someone whom knows or cares.

[sadlisa]

Hi dmat

I would guess it is more a matter of time. There is no time for cases like ours. Most doctors have so many cases in a day, to do research on our minority illness just isn't possible. We all know Meningitis is rare. Having after effects is even more rare. There is no one that I know of that studies this. I have had a couple endocrine issues as well following my meningitis. I do believe there is a connection. Maybe something to do with the pituitary gland. We do need someone who can study meningitis and give us direction.

I am sorry your husband is having such a difficult time. You are a wonderful person to keep watching and speaking out for him.

Feel free to pm or email me anytime. Even if it is just to vent. I understand. Thia

[kmfeddersen]

Hi, About 6 weeks ago I was diagnosed with pneumonia (found via a abdomen CT). I have continued to have headaches especially when I lie down or think. I have had some short term memory loss, confusion, and some hearing loss. I went to see a neurologist and he believes I had viral meningitis. I have had brain MRI, CT, blood tests, and a lumbar puncture but nothing shows up. At this point it is as if my neurologist doesn’t believe me. Has anyone else struggled with headaches when they lie down or the short term memory loss? If so did you find relief or a cause?