Brainstem cavernoma

[Thankgodforlife]

I'm 25, mine bled for the first time, in August 2014, I'm just wondering if there's any reports of them never bleeding again?

[ianstu Partner Cavernoma Alliance UK]

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[sheyee]

I have a cavernoma at the top of my spinal cord that bled for the first time in March 2010 and it has not bled since. Recovering from the effects of the episode took awhile and I still have a chronic pain on my right arm but I hope you feel better soon.

[Thankgodforlife in reply to sheyee]

thank you, have you heard anything about radiation treatment, the doctors are recommening me to get that, but I'm not sure if it works..

[sheyee]

Radiation treatment wasn't an option offered to me, my neurologist and neurosurgeon said at the time that I could have an operation to have the cavernoma removed or wait out to see if the hemorrage would settle with the help of steroids. I chose not to remove the cavernoma since it is in a risky area and the hemorrage did settle after a few months. I went through a few months of rehabilitation to re-learn some movements but fingers crossed I am much better now and can do all the things I was able to do before the episode. Hope this is helpful.

[lilymay2011 in reply to sheyee]

where is your cav

[dawmjw]

I have a brainstem cavernoma and have had many bleeds starting when I was 22, I am 49, with each time losing some feeling in a portion of my body with chronic nerve pain down my right arm and left leg due to the most recent bleed two years ago. Each time I rehab to almost 90-95% of normal. Looking at me, I look, speak, and act completely normal. I call this my invisible disease. Daily exercise is the only way I have been able to fully rehab and manage pain without drug dependency. Even skipping a day of exercise, brings back neurological pain and deep numbness. I had surgery for the spinal cord cavernoma that I also have in addition to multiple brain cavernomas. My spinal cord cavernoma burst 2 years ago which caused paralysis sporadically through my body starting at C5. That surgery was very successful, just two years ago this June 3. Although it took 6 months to fully rehab from the paralysis damage, I am nearly normal and completely normal to the naked eye. In a nutshell, so far I have survived this condition with relatively few issues in the grand scheme of other much more debilitating diseases. The takeaway here is that we can live with this despite the cavernomas being placed strategically in the most dangerous place possible, the brainstem. The temporary steroids are a god send when the swelling and bleeding causes so much damage and I even think without them I would be far worse off. So take them when you have a bleed, it improves the rehab process dramatically. I have never had surgery for the brainstem cavernoma and don't plan on it unless no other choice. Have considered Gamma Knife radiosurgery but my brain surgeon said there is no evidence at this time that radiosurgery is effective thus it is an unnecessary danger. Good luck to you but remember to look around you and observe that there are far worse conditions out there.

[lilymay2011 in reply to dawmjw]

can I ask why ypu wouldn't consider surgery on brainsyem cav

[Thankgodforlife in reply to dawmjw]

thx thats good news im glad u recovered well, its been almost a year, my hand still isnt the same but it was way worst. how many bleeds did u have and how far apart, and could u fly on airplanes?

[lilymay2011 in reply to dawmjw]

Interesting story thank you, good to listen to. Mine is in brain stem

[Dandemaglie in reply to dawmjw]

Did you have restrictions on flying due to cabin air pressure?

[julebee in reply to Dandemaglie]

i would like to know this too as I have just had a bleed in the pons of my brain and am planning an OS trip in August next year....have you found out anything about the risks?

[Wendysparks in reply to dawmjw]

Thank you for your encouragement. I have recently been diagnosed with a cavernoma in the brainstem and have had a bleed. I have double vision in my left eye and numbness down my left leg and foot. The neurosurgeon says it is inoperable and that I must just take it easy so that there is no further bleeding. Any idea how long this will take before I can start my normal activities i.e. walking, golf etc.

[Thankgodforlife in reply to Wendysparks]

it depends on how bad the bleed was, i can only speak for myself, so my double vision was gone at 2 months and i got rid of my wheelchair at 6 months, went back to work at 8 months , and not the same or as fast as before but i can jog but my sport was basketball, and i still cant play that , i hope to see more improvements but most of all pray for no more bleeds

[Wendysparks in reply to Thankgodforlife]

Thank you, that is encouraging news. Keep strong.

[lilymay2011]

I was told they can't say...1-20% annually

[Thankgodforlife in reply to lilymay2011]

i hope im lucky

[lilymay2011]

I was told might never bleed again, also didn't realiae they can shrink and disappear. .

[Thankgodforlife in reply to lilymay2011]

that would be awesome

[dawmjw]

I have had 5 bleeds, 2 in the brainstem and 3 in the spinal cord. The first was in 1992, second in 2005, third 2011, fourth 2013, and fifth 2014. As you can see, it has spanned many decades. The first one was not diagnosed and thus became unknown until 2005, although I was diagnosed with MS first. No don't have MS!

I have never been told not to fly. However I was told not to engage in hard core weight lifting. Haha! A bit funny as I am very petite!

The spinal cord cavernoma has been removed via surgery two years so the subsequent bleed the following year was in the brainstem. I have a dozen or so more in my brain but they are not active nor in dangerous places. I have not contemplated surgery because it is very risky and could cause more damage than the cavernoma itself bleeding. With the spinal cord surgery there was permanent damage by the surgeon despite being one of the best in the country so it is very risky. I was told by my surgeon not to do surgery unless there is danger that the bleed will not stop or if the current bleed is large enough to warrant surgery. My spinal cavernoma bled for 2 months and would not stop so it was necessary to save my life. If I didn't have surgery, I would have been a quadriplegic.

I do have some residual neurologic pain in my right hand, right arm, and left leg. It improves with exercise and constant movement throughout the day. Sitting for a couple hours does cause it to intensify. I also have deep numbness in the same spots which also improve with exercise and constant mobility. Those have all been caused by the spinal cavernoma and subsequent removal via surgery. I am not up for brain surgery. I am still counting my blessings with the last surgery in 2013.

My cavernomas come and go and shrink and swell for the most part except for the brainstem one. I was told with the first bleed that it would probably never bleed again. Obviously not the case. Typically when they start to bleed, they do have more bleeds. But that is my experience and listening to others as well.

Again I was told just recently that radiosurgery has not been proven to reduce, enlarge, eradicate or otherwise. There just isn't enough data at this time.

[Dandemaglie in reply to dawmjw]

When it bled for 2 months how did you know ? Did the pain intensify? Did your symptoms increase?

[Juanam]

Had a Brainstem Cav (pons)

Resected 3 years ago after being hospitalised 3 times post bleeds.

To halt further perm damage, I opted for surgical intervention.

I have deficits that I am still working on but no longer worry about further bleeds that would have eventually affected many

Functions, breathing being the most frightening.💜

[Happy759]

Mine first bled in 2015 and hasn't bled since. It's different for every person I think.

[Thankgodforlife]

It seems like it , still with one bleed as well 🙏🏼