Need help on questions regarding side effects after embolization procedure

My name is Marco and I was born in Quito, Ecuador South America. My AVM was discovered in February 1994 after a major headache so my mother took me to the ER for a CT when I was 19 years old. After the discovery of the AVM my mother and I traveled to Mexico City where I had mutiple embolizations within the effort to reduce the size of the avm, several years later I was fortunate and blessed enough to be in the United States to have Stereotactic Radiosurgery at Saint Joseph's Hopital of Atlanta and it is now completely obliterated.
Although the AVM is gone and I am thankful for a second chance in life I am still dealing with the side effects caused by multiple embolizations in Mexico. The side effect is being able to only use 80% of the right arm and leg.

When I originally had my embolizations prior the stereotactic radiation 16 years ago in Mexico City, the Doctors went into an area of my brain too often perhaps somewhere that they were not suppose to and as a result I completely lost movement, coordination and some sensitivity of my right side of my body (particulary arm and lower leg). After several months of physical therapy I was able to regain my strength and coordination in my right arm to almost 95%, however, the lower leg and foot regained only approximatelly 80%.

Anyway, there was great progress made over a few months during the physical therapy and over the past 16 years I have been able to do most daliy activities other than the daily embarrasement of consistant limping and people asking questions.

Over the past several months I have noticed changes in my leg coordination and ability to walk, I went to my new neurologist, he did his typical 5 minute (close your eyes, touch your nose, squeeze my fingers) test and told me that everything is normal. Since I insisted that someting was wrong with my ability to walk again and my coordination, he agreed to send me for an MRI (with contrast and w/o contrast), shortly after my MRI his medical nurse called me to tell me that everything looked great.

I am extremelly frustrated with their answers at the same time relieved and thankful and blessed that my avm has not grown, however, I still would like to know why am I experiencing the same syntoms like the ones I had right after my embolizations? Also I have noticed that when the temperature is extremely cold outside my right side of knee down and my right hand are extremely cold and painful.

I guess what I would like to ask to any of you who have gone through this is if the syntoms are likely to come back? Is physical therapy heplful again? although the Dr's told me years ago that the damage was permanent.........

If anyone has the answers to these questions of if you are experiencing similar syntoms I would really like to hear them.

God Bless you,

Marco

Hi Marco,

A lot of your story is very close to my wife’s. Following embo #2, she had a pronounced limp in her right leg (AVM was on left side of the brain). Early PT helped some, but she ended up wearing a foot brace for 10+ years. Most likely, it was caused by damage to brain tissue controlling leg / ankle muscles. Her right leg muscles atrophied as well. She had similar to “foot drop” which stroke victims often get.

She had surgery to correct the foot drop (ligaments shortened and reattached), but the BIG improvement was finding a personal trainer that KNEW the body muscles thoroughly! She developed workout routines for the wife that didn’t try to fix the non-working muscles, but strengthened the WORKING muscles so they could take over with the walking. It has taken about 2 years of diligent exercising, but some people now don’t even notice her limp.

Like you, if it’s cold, she’s tired, or hasn’t exercised enough, the limp is more pronounced.

Our personal trainer asked for, and we provided permission, for her to review the physical therapist’s diagnosis and treatments, so that she could be sure that what she was suggesting would help. She also had us take her exercise info to the therapist for concurrence of the plan. The therapist said the trainer’s plan was spot on!

This might be a path you want to take. The key is finding a trainer that is not just a gym rat, but knows which muscles do what.

Best wishes,
Ron, KS

Hola Marco,
I, too feel the frustration. I can sure relate to your situition-- got a second chance. The yr.03’ suffered a major enursym, woked up 3 wks. from a coma, didn’t catch it on time, so a lot of Phy. and mental damage was done. went thru a bunch of MRIs Phy. theropy, to me all this was working too slow. As Ron KS said, impotant to get a good Phy. theropist, finally, got lucky got a very, very good theropist, it took about 1 yr. to learn to walk and speak. I can not walk normal, lack of balance/coordination, saw 2 Neuro drs.-- they could not provide an answer. Five yrs. went by, asked another Phy. theropist, he said my brain stem cells had to heal/rebuild to anable me to walk normal. Not much research has been done in this area, I’m doin a lot of researsh, I sure miss all the phy. stuff I was able to do before this happen, Oh mental stuff too, not to normal, BUT a heck of a lot better, Many types of herbs sure helped. Good luck and God bless you.

Esta luego

Ron,
Thank you so much for your feedback, you had actually giving me a lot of encouragement to continue moving forward. I am glad that your wife is doing better and I will take your advice about the personal trainier.
Thanks again,
Marco

Ron, KS said:

Hi Marco,

A lot of your story is very close to my wife’s. Following embo #2, she had a pronounced limp in her right leg (AVM was on left side of the brain). Early PT helped some, but she ended up wearing a foot brace for 10+ years. Most likely, it was caused by damage to brain tissue controlling leg / ankle muscles. Her right leg muscles atrophied as well. She had similar to “foot drop” which stroke victims often get.

She had surgery to correct the foot drop (ligaments shortened and reattached), but the BIG improvement was finding a personal trainer that KNEW the body muscles thoroughly! She developed workout routines for the wife that didn’t try to fix the non-working muscles, but strengthened the WORKING muscles so they could take over with the walking. It has taken about 2 years of diligent exercising, but some people now don’t even notice her limp.

Like you, if it’s cold, she’s tired, or hasn’t exercised enough, the limp is more pronounced.

Our personal trainer asked for, and we provided permission, for her to review the physical therapist’s diagnosis and treatments, so that she could be sure that what she was suggesting would help. She also had us take her exercise info to the therapist for concurrence of the plan. The therapist said the trainer’s plan was spot on!

This might be a path you want to take. The key is finding a trainer that is not just a gym rat, but knows which muscles do what.

Best wishes,
Ron, KS

Hello Marco . Have you discussed your issues with your ( regular old ) family physician ? Sometimes they see the " whole " you instead of the avm “stuff” only . Even though we are different with avms-some things are the same ( only more special ) as we have muscles , tendons , nerves , etc . just like everyone else and perhaps your family physician might recommend a round of physical therapy to get you back to center . If your gait is off and weather change causes these affects well…you know yourself better than anyone…
Be good to you . Take care of you .