New DVA with CCM seeking help, feeling depressed

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New DVA with CCM seeking help, feeling depressed

Postby DebbieW » Wed Aug 30, 2017 1:50 pm

Good day,

I am in South Africa. I have recently been diagnosed with a cavernoma in the right cerebellum, which shows previous bleeding. I also have a DVA (Developmental Venous Anomaly) in the nearby vicinity. My neurosurgeon has said not to have any surgery and only to repeat the MRI on an annual basis. The problem I am having is that I suffer with persistent headaches, nausea, ringing ear for +- 3,5 months and dizziness. Sometimes the dizziness is so severe, it feels as if I will actually pass out, although it only lasts about 3-5 seconds at a time with the severe attacks. They seem to think that my symptoms are ear related, which is why I had the MRI done, but all is fine with the ear. After reading all the stories, it seems as if cavernous angiomas should be surgically removed, but I am being told no. I am 52 years old. Is it due to my age, diabetes, high blood pressure and high cholesterol perhaps? It may also be due to me being a smoker, which I am in the process of quitting. I am 52 years old.

Some of my other issues are: sudden sharp pain when sneezing or blowing my nose, loss of balance/unsteadiness at times, swallowing difficulties at times, my right ear turns purple at times (not due to cold), I have tingling in my feet, right hand and numbness in my right thigh, right baby finger and intermittently in my arm. A huge issue for me is the lack of concentration, short term memory issues as well as my spelling has become appalling, which is unlike me.

My Specialist Physician is referring me to another Neurosurgeon for another opinion, as she seems quite worried. I suffer with cervical spine issues, which were picked up on the same MRI. I am not sure how advanced the medical fraternity is in SA, regarding the surgical removal of cavernomas. It cannot be lasered or radiated, due to the close proximity of the DVA, which needs to be left alone. I am due to see him in 2 days time.

Thanks so much for any assistance you can offer. Please can someone help, I am feeling rather depressed about all of this.

Many thanks and kind regards,
Debbie
DebbieW
 
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Joined: Wed Aug 30, 2017 1:01 pm

Re: New DVA with CCM seeking help, feeling depressed

Postby Elizabeth » Sun Sep 03, 2017 3:08 pm

Hi Debbie,

I'm sorry you are going through this. I don't know anything about doctors in south Africa. Getting multiple expert opinions is a good idea, and then you can better decide what's best for you. You can mail ur scans to Dr. Lawton at Barrows in phoenix az and they will give you their opinion. All of the risk factors you mentioned would increase your surgical risk, so a good idea would be to try to reduce those risks in case you need surgery some day. Yes, stop smoking ASAP. Healthy diet and light exercise if you can tolerate it is good usually , but talk to your doctor about reducing your risk factors and they can give you ideas of what is good for you. I also had dizziness they thought was from my ear...it wasn't. Cerebellum control balance so dizziness is a common symptom from that location. My advise, try to figure out how to get as healthy as you can and then deal with your cm. No blood thinners, scuba diving or rollercoasters.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: New DVA with CCM seeking help, feeling depressed

Postby DebbieW » Mon Sep 04, 2017 7:13 am

Hi Elizabeth,

Thank you for your advice and encouragement. Please can you provide me with the contact details you have mentioned, so that I can send through my scans.

I hope that your stroke has not had too severe an impact on your lifestyle and wish you continuous recovery. I too wish that I could be rid of this bleeding thing in my head.

Many thanks and take care,
Debbie
DebbieW
 
Posts: 17
Joined: Wed Aug 30, 2017 1:01 pm

Re: New DVA with CCM seeking help, feeling depressed

Postby Elizabeth » Mon Sep 04, 2017 5:47 pm

Dr. Lawton is the new director at Barrow's in Phoenix Az. That's where I had surgery, but my surgeon, Dr. Spetzler, retired. You can call them, and ask what you need to send and where to send.
https://www.barrowbrainandspine.com/phy ... /dr-lawton
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1550
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: New DVA with CCM seeking help, feeling depressed

Postby DebbieW » Tue Sep 05, 2017 7:10 am

Thanks Elizabeth,

I will follow up with them accordingly.

Take care,
Debbie
DebbieW
 
Posts: 17
Joined: Wed Aug 30, 2017 1:01 pm


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