Small Vessel Disease in the Brain & Cavernous Malformation

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and ir is so much easier to do that. The sad part is I don’t really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

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Dear Venkatesh,You can overcome the problem thru regular practice of Meditation, Yoga , Pranyam, Exercise .You should try to walk, Exercise in Sunlight and learn Yoga at earliest.Chanting and Prayers are very effective.Simple Veg Diet , Fruits and dry fruits are wholesome and good .Whaever is good for heart is good for brain.I have suffered severe heart attack 7 years back and at times I do get similar symptoms as above.I take Aspirin BUT stopped Statin.I think Statin does not help .I read some research showing Low Cholesterol increases risk of stroke.I wonder whether Doctors Agree ! My Prayers for your speedy , miracle like recovery thru Divine Intervention.It has happened to me.Pray intensely and HE helps.Om

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Great post and great message, @nancywootten

Thank you for this important reminder!

Teresa

Liked by nancywootten

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@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

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@kishanvasekar You are so right when you say, "what is good for the heart is good for the brain." That includes exercise and the right foods.

Teresa

Liked by kishanvasekar

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@venki

Hello everybody I am 55 years &as already mentioned I have been suffering from CSVD, Cerebral atrophy with sleeping & movement disorder. Last night my head was hit at a stone slab in the middle of the head & since then headache continues. When I walk i plan to put to my leg at one place but the leg goes to another place. Is it gait walking? How can I control this. No coordination with my brain and body. What is the remedy? How can I assess the damage without taking MRI. I have already taken 2 MRIs. Is it safe to take more MRIs? Kindly explain.

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@venki

Check with your doctor about MRIs. It would probably be good to have the injury from the head trauma assessed in some way. I have had lots of MRIs (more than I can count).

Are you involved with physical therapy or other exercise programs? This was most helpful to me with Parkinson's. You definitely need to be doing something to impact the coordination problems.

I look forward to hearing from you and knowing what steps you are taking to improve your walking.

Teresa

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@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

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@venki

I agree with @nancywootten. Giving up (or giving in) are not good options. They just create more problems.

Teresa

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@rpbrosa

At 71, I have similiar issues with balance and fatigue. I steadily increase the use of my cane. It appears my body is slowly wearing out which is a long way from where I was in the younger days. I blame this on Agent Orange exposure during RVN time but, but and but. I can drive but exercise is almost impossible except from a couch. Laying down is immensely more comfortable while walking becomes increasingly diffcult within minutes. Good Luck

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I think Yoga will help you immensely.Posies in sitting , lying down are available.Physical training helped me to recover from 30 days in ER and 40 days in hospital .Ihad severe heart attack, kidney failure in 2011.

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@colleenyoung

Welcome to Connect, @traceg19 and @rpbrosa. Have either of you tried chair exercises or chair yoga?

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I do Chair yoga also.My wife is trained Yoga teacher and I also learnt.We are in MN till Aug 8 or so.Will Love to share my experiences on Conquering Heart Disease.After careful evaluation , I stopped Statins in consultations with my Cardiologist.Fine now.

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@bellisima

Does anyone has been diagnose with carvernos malformation

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I was diagnosed and has surgery to remove it. Do you have one?

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I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

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Welcome to Connect, @maria7521,

I moved your message and combined it with this existing discussion on cavernoma. I did this as I saw that you had also posted in this group, and thought it would be beneficial for you to be introduced to the many members who have discussed much of 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 talking about their or their loved ones' experiences.

We have several members talking about cavernoma – please meet @ees1 @jeans @bellisima @jc2buds @nancye3 @brenda68 @pegorr – and you may also be interested in joining these discussions:
– Meningioma and Cavernoma https://connect.mayoclinic.org/discussion/meningioma-and-cavernoma/
– Cavernoma https://connect.mayoclinic.org/discussion/cavernoma/

While we wait for members to join in, here's some information from the Angioma Alliance, about what to expect after surgery:
http://www.angiomaalliance.org/pages.aspx?content=82&id=73

@maria7521, have you seen a doctor for your symptoms after surgery?

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@maria7521

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

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Hi Maria….I'm glad you are recovering. Do you know how long you had your cavernoma before you and your doctors decided on removing it? I have one on my thalamus. I am trying my best to keep it from bleeding! I wish I had some answers for you but I have no idea. I will be keeping you in my prayers!

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@kanaazpereira

Welcome to Connect, @maria7521,

I moved your message and combined it with this existing discussion on cavernoma. I did this as I saw that you had also posted in this group, and thought it would be beneficial for you to be introduced to the many members who have discussed much of 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 talking about their or their loved ones' experiences.

We have several members talking about cavernoma – please meet @ees1 @jeans @bellisima @jc2buds @nancye3 @brenda68 @pegorr – and you may also be interested in joining these discussions:
– Meningioma and Cavernoma https://connect.mayoclinic.org/discussion/meningioma-and-cavernoma/
– Cavernoma https://connect.mayoclinic.org/discussion/cavernoma/

While we wait for members to join in, here's some information from the Angioma Alliance, about what to expect after surgery:
http://www.angiomaalliance.org/pages.aspx?content=82&id=73

@maria7521, have you seen a doctor for your symptoms after surgery?

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Thank you. My dr is 2 weeks out.

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@maria7521

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

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I found out I had it and then it bleed 3 time in 3 weeks so they had to take it. I’m so sorry you have one as well, such a hard decision you have to make.

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@maria7521

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

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Goodness 3 times in a week….that is a lot…from my readings there is no way to tell what makes them bleed or when they will bleed. People seem to all be very different. They did a angiogram and he said they would do a scan in like 6 months. I just really have no idea when it does bleed. It causes me no pain. Just put me into sleeping and I feel like I am far away. The first time I finally drove myself to the Medical Center I don't remember driving there…and the nurse came in to ask me questions…I couldn't answer any….they transferred me to the ER and did a scan to find it….finally got in touch with my husband. The second bleed…. I just felt somewhat away…not as bad as the first time….and it was about 1 1/2 year after the first time. I sat on it that long because the Asheville doctors had no idea what it was…so I was fine with it…but then when I went back and he kind of made me feel like a crazy woman for coming back…I ask for a second opinion. I went to Duke and the doctor told me right away what I had. It really takes yourself getting to know it all the best way possible. I feel that is what I am doing….hope its the right way! Keeping you in my prayers! 🙂 (hope this made some sense!…I am awful at writing!)

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@maria7521

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

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I loved your post! I loved what a great advocate you are for yourself. That is so very important regardless of what condition you have. If you know something is wrong you keep trying until someone pays attention to you.

Good for you Brenda!

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