Hi all, Has anyone's doctor noticed what looks to be spinal fluid around the brain, (Hydrocephalus), which can be caused by MS (amongst a number of other things)? I am undergoing some tests to determine if this is the case for me and scared out of my mind.
Hydrocephalus & MS: Hi all, Has anyone's... - My MSAA Community
Hydrocephalus & MS
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suzy20
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Never heard of this. Keep us posted.
starlight5 and Iona60 thank you for your support, I am so scared. I was diagnosed at Stanford with MS last March, I am 52. My MRI's showed MS lesions on my brain (cerebellum and brain stem), C spine and T spine. I struggle with balance and trouble walking/right foot& leg. I am taking Copaxone. On Tuesday, my husband and I went to UCSF for a second opinion on the diagnosis and DMT (because my symptoms are "invisible, my hubby has been in denial about my diagnosis and insisted I get a second opinion.)
The UCSF neuroimmunologist there confirmed there were MS type lesions, but she was more concerned with what looked like spinal fluid build up between the brain and skull- called hydrocephalus. There is a type of hydrocephalus called "acquired hydrocephalus" in which a brain injury/infection/lesion can trigger this type of spinal fluid build-up (normally the spinal fluid circulates and is ultimately absorbed into your body). The UCSF team is running a number of tests and I have another appointment in 10 days. I know I will have to undergo a spinal tap. The treatment for hydrocephalus is brain surgery and placement of a shunt in the brain to drain fluid. The symptoms of hydrocephalus include problems walking, tripping, balance, stomach problems &headache (similar to the MS symptoms and the symptoms I have). If they drain the fluid and get it circulating normally, the symptoms can be alleviated in some patients.
I am totally overwhelmed. Thank God for my husband and daughter and awesome family & friends. BUT, I just feel like I cannot take another frightening medical diagnosis. I survived almost bleeding to death after my daughter was born. Two years ago I had breast cancer. Last March was the MS diagnosis. I am usually very positive, but this is just too much. I don't know how I could face a brain surgery. And how in the world did Stanford not see this? I honestly was expecting UCSF to say "yes, this is MS," and that would be it.
Please say some prayers for me, I am so terrified I can't stop thinking about it, the waiting is awful. My husband is at work and daughter at school and I can't stop crying
Well you are in some of the best care in the WORLD. I think you could certainly focus on that. I did a really quick search and if you did need a stint you will feel remarkably better fairly quick. Wouldn't that be incredible!! Scary regardless but the outcome sounds very promising. Xxoo.
Oh yeah my brother in law had this done 3 years ago and it saved his life and made him feel wonderful!
SometimesCrazy Oh my goodness, thank you and thank God for your reply!
SometimesCrazy I can't tell you how grateful I am to hear this news. Do you mind if I ask how your brother in law was diagnosed? Where did have the surgery? I am so terrified they might have to do brain surgery..... how is he doing living with brain stents?
I think it was Stanford. I will ask my sister. She is in a woman's group in the mountains no t.v. or ph
Or phone. But email once a week.
SometimesCrazy I just meant "generally"-- (there is certainly no need to disturb your family or ask any invasive questions). I was wondering if you knew whether they diagnosed him based upon his symptoms and MRI? Did he have something else going on ie: another diagnosis (like MS) also? I am also wondering how long his recovery took from the stent surgery (again just generally). Thank you so much for sharing, it has helped me tremendously and more than I can express here.
Sorry. I've been off the forum for a few days. I understand how afraid you must be. Since the symptoms are similar, I wonder if it is possible that you don't have Ms at all. Maybe the stent will take care of everything. I was on copaxone for 10 years. It was a very easy drug for me to tolerate.
Iona60 That is a positive thought, thank you, thank you thank you and blessings to you and everyone on this forum.
Both of these diagnoses sound beatable and may be less intensive than what you have already endured with the breast cancer. You are a strong woman and will make it through. Just take one day at a time. You are in my prayers.
suzy20 I have never heard of this, and it sounds very scary. So very glad you have your family and friends by your side to be there for you. Please keep us updated on how things go for your tests. I'm sorry this was missed before but maybe it wasn't there before and it showed more recently? Or the tests that were run didn't detect it?
Jessie
bxrmom thank you. I won't know definitively until after the spinal tap test, but I will keep you all updated. The set of 6 MRI's was the same set that the first doctors looked at in March 2017. However, I believe that in October 2017 the diagnostic criteria changed slightly for MS and requires a more thorough ruling out of other possible diagnoses. This new criteria may have led to the second set of doctors catching this now and why the first set didn't catch it in March 2017. I am very glad I went for a second opinion if there is indeed something else wrong that was missed. Please send good thoughts and energy my way
suzy20 Good thoughts and energy are definitely being sent your way. With criteria being changed, over the years I'm sure that could be what let to the second set of doctors catching this.
Jessie
suzy20 I’ll keep praying for God’s comfort and peace, and especially for healing.
Update us when you learn more. We’re all there with you in spirit.
greaterexp thank you 💗
Hi, suzy20 . So sorry you're going through this. I have not heard of this before, but everyone with MS has such a different set of symptoms. Hopefully they will find out what it is with as little discomfort to you as possible and will either fix it or tell you that it's nothing. I don't blame you for being scared; fear of the unknown is very normal. I hope you get answers soon. Best of luck to you, and keep us posted. Sukie427
Sukie427 thank you
Jesmcd2CommunityAmbassador
Hi suzy20 how ya hanging on?😊 Hugs! 💕 I wish had the magic words to take the worry away!💕 Prayers on the Wings of an Angel my friend 💕
J 🌠
Jesmcd2 thanks for checking in, I’m hanging in there😘. Feeling very grateful for all of you here 🙏🏻
Jesmcd2CommunityAmbassador
We are ALL here for you! suzy20 My best friends daughter has a stint in her brain to drain fluid to her belly. She has had it since she was little.😊 She is 33 now💕.
J 🌠
Jesmcd2 thank you so much
In 2009 I developed Hydrocephalus due to a lesion blocking the duct that drains fluid from my brain. After going to ER 3 times and treated like a drug seeker, I begged them to do a MRI. It was then they realized I was in critical condition and transported to a facility capable of doing my surgery. Please stay insistent. You know your body and when something isn't right . Prayers.
Mimito2 Thank you so much, it has been a roller coaster. I am now back to. R&R MS diagnosis. I am so tired 😓 ...
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