long term results post op for spinal CA

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long term results post op for spinal CA

Postby var281 » Sat Feb 24, 2018 3:33 am

I had a thoracic T4/T5 small cavernomous angioma / cavernous malformation removed in 2016 by Dr. Spetzler. I am a male, aged 31 years old, former athlete. Overall my condition has improved and I experience less pain and muscle spasms compared to before. It does seem better going after each year, but it is a very subtle improvement. My MRI results show a small area of hemosiderin staining at T4/T5. I understand that Hemosiderin staining does not go away except possibly after a very long time. I also understand that Hemosiderin is neurotoxic and can cause symptoms. I walk each day, lift light weights, and use a concept 2 rowing machine. I try to stay active but it is difficult. I find that I have to lie down a lot on some days due to the pain and spasm. It is hard to think clearly due to pain and I do not sleep very well, although I try. I also avoid pain killers unless absolutely necessary. I have a band of pain and spasms that runs around my ribs from T4/T5 area and pain and spasm that runs down the backside of my legs. It is worse on the right ribcage and left leg. It often feels very hot or very cold in these regions and there is an uncomfortable prickling sensation. I also find that my body is very sensitive to cold temperatures, I seem to have more pain and spasms when the temperature is less than 70 degrees, which makes much of the year more unpleasant.

I would like to know what I should expect long term as I am still not working full time and have a lot of pain still.

I also have not found any drugs that I can stay on long term without having them increase in side effects and decrease in effectiveness. I have tried tramadol, oxycodone, baclofen, neurontin, valium, and medical cannabis. I have experienced terrible withdrawal symptoms from tramadol, oxycodone, and valium. Valium was so bad that I will never use it again. Tramadol is not very usable unless dosed frequently and long term, so I don't use it much anymore. I use oxyocodone about twice a week in 5 mg quantity, which is low enough that I do not seem to habituate to it, I try to spread out my use of it. It makes it hard for me to read. I have found that neurontin/gabapentin was worthless. Baclofen made me very weak and did not provide any positive benefits. Cannabis works but only in the short term (1 or two weeks of continuous use) but is very stupefying for me, even in high CBD medical formulations. In fact, higher THC formulations work better and were less stupefying for me than CBD. Long term beyond a few weeks, it actually seems to increase my pain.

Most days of the week I am not using any medication at all. I would rather experience the symptoms than experience the side effects of the drugs or have to deal with withdrawal again.
T4/T5 Spinal Cord Cavernous Malformation removed by Barrow 2016, some remaining hemosiderin
small T11 Syrinx
Spinal Cord Detether in 2013
var281
 
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Joined: Fri Feb 12, 2016 6:13 pm

Re: long term results post op for spinal CA

Postby Elizabeth » Sat Feb 24, 2018 2:52 pm

I'm sorry. Dealing with pain long term is an animal I wouldn't know how to deal with. I'm an incredible wimp and I can't imagine anything worse. Sounds like you've tried all the usual txs with little to no success. I hope things continue to improve for you however slowly. I had surgery on my brain with Spetzler 7 years ago and I seem to continue to improve year after year even now....just SLOWLY. Some of what you describe sounds like nerve pain...CPS(central pain syndrome). Hopefully not but maybe. There's little research on it and currently no cure. Treatments tend to be some of the drugs you've tried and I think some antidepressants too. Do you have any other angiomas? Because if you don't have others, I would probably explore more different types of CBD or cannabis. There are so many types and they are all different. Also the dosing needs to be super low and slow to get the best results. Where are you? If you are in CA, you can try to reach out to cannakids.org. they treat adults too. You can do a phone consult with a nurse, but you need to live in CA to buy anything. Sorry I don't have better advise, I hope you feel better.
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: long term results post op for spinal CA

Postby var281 » Sat Feb 24, 2018 3:12 pm

Thank you for the reply.
I have tried a few CBD sublingual oil and flower products but not a huge fan. They interfered with my thinking quite a bit. It was hard to describe, kind of like being unable to absorb any knowledge and feeling very tired. Different from feeling stoned from traditional marijuana but equally unpleasant. Now that MD has medical marijuana I have tried a few flower products but it is hard to tell how helpful it has been. It has helped most of the time but it is something I cannot do more than once or twice a week because it is just too much. It has been slowly improving each year but I would like to get my life back on track faster of course. :lol: I can tell some of it has improved because I am sleeping better and I am taking less medication to get through the day while having more activity. However I am the kind of person that needs to constantly move around so the sedentary aspect wears on my mind. Another problem I have is I have a lot of intense sweating when I am sleeping if the room is cold. Pretty awful. Wake up feeling like a bucket of cold water was dumped on me. That also began around the time of the first bleed/ooze in 2010 and while it happens less than it used to, it still occurs.
T4/T5 Spinal Cord Cavernous Malformation removed by Barrow 2016, some remaining hemosiderin
small T11 Syrinx
Spinal Cord Detether in 2013
var281
 
Posts: 10
Joined: Fri Feb 12, 2016 6:13 pm

Re: long term results post op for spinal CA

Postby PattiG » Sat Feb 24, 2018 4:24 pm

Hi,

I'm so sorry you too suffer w/ pain.
I echo Elizabeth w/ the possibility your pain could be central pain syndrome, CPS.
http://www.angiomaalliance.org/pages.as ... 459&id=369
Have you tried Amitriptyline, a tricyclic antidepressant? It may or may not help w/ the pain, but may be worth looking into. Also, have you tried Ativan? While it's impossible to relax being in constant pain, a low dose might help calm you and bring a little relief.
I too suffer w/ central pain syndrome, yet so far none of the 'usual' meds help, so I cope day-by-day. I have tried CBD oil a little, but like yourself, side effects of THC are not worth it for me.
During the cold of winter, my symptoms worsen too and the heat lamps my husband <3 made for me is soothing.

Take care,

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Location: Oregon

Re: long term results post op for spinal CA

Postby Elizabeth » Sun Feb 25, 2018 2:45 am

Have either of you tried a zero THC cbd oil like this one? There are several different kinds but from what I hear this one is supposed to work pretty well for pain. Just an idea.

https://www.lazarusnaturals.com/shop/ti ... h-potency/
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: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: long term results post op for spinal CA

Postby PattiG » Mon Feb 26, 2018 4:57 pm

Hi Elizabeth,

Thanks for providing another source.
Will look it over for consideration.
I did try two other brand's of CBD oil without THC, but didn't find any relief...

Thanks again! :)

Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
Moderator
 
Posts: 1091
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: long term results post op for spinal CA

Postby var281 » Tue Mar 06, 2018 2:35 pm

Thanks for sharing info on the CBD. I have tried CBD isolated without THC but it makes me feel drunk. I seem to have more pain relief from THC products but I have to be careful to use very small amounts and infrequently to avoid unwanted side effects. I avoid using it more than twice a week.
T4/T5 Spinal Cord Cavernous Malformation removed by Barrow 2016, some remaining hemosiderin
small T11 Syrinx
Spinal Cord Detether in 2013
var281
 
Posts: 10
Joined: Fri Feb 12, 2016 6:13 pm

Re: long term results post op for spinal CA

Postby skyeiris1 » Fri Mar 09, 2018 12:52 am

My case is very similar to yours. Dr. Spetzler removed a tethered angioma from the T3 spot in Dec. 2009. It's great that you are working out despite the pain. Keep moving. That's the thing that I found working best for me. Perhaps, exercise helps the body to absorb the blood. I almost thought for a moment that my nerve pain was even disappearing, but then I noticed that some symptoms were acting up. My right leg was occasionally misstepping again, and I was feeling warmth in my back, and the nerve pain, which fortunately hasn't been excessive, was flaring up again. My worst pain was with my first bleed, which was probably around 2006. It was excruciating at that point. I could barely stand the touch of clothing, and a slight breeze caused me to shudder. Make sure you keep getting MRI's every year. They had pushed mine back to 3 year follow ups starting in 2014 so I didn't have one until Jan. of this year, 2018. I have a new one in the same spot; It also could be that a little portion was missed and grew back. I don't want to undergo the surgery again. It's like going backwards, but I don't like the risks either. I'm in Dr. Lawton's care now at Barrow's since Dr. Spetzler retired. I live in Tucson. Feel free to email me anytime. skyeiris@gmail.com
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