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AVM Survivors Network

Site relaunch: Wondering where all the spinal AVM posts are?


#1

Hello dear community,

just wondering about this empty forum. Why are there no spinal AVM survivors? So if empty, just the first Topic here. Keep on fighting, keep on living,
Michael


#2

Hi, I am one of the spinal AVM survivors. I’ve posted before and the saga continues. My current thoughts on the issue follows. The AVMs were at T2 and T5 and diagnosed end of November 2013, embollized that December. Prior to surgery I could barely walk up a flight of stairs. After the surgery I also gained heavy continuous level of pins and needles and very poor balance. Much more information found in my prior posts; but let me continue onto new data.

Earlier I believed I plateaued about one to two years ago, but now I am not so sure. I think I am getting a little bit better. And this is much more noticable in the last week. I live both in Hawaii and in PA while spending much time in Chicago, San Francisco and Seattle. In Hawaii I have optimal personnaly managed PT, in the mainlamd it is not so good because of both the terrain and temperture. For me relerning to walk and advance through levels and types of walking have been the main issue for recovery and wet, warm packed sand appears to be optimal. I left HI for two months and proceeded with suboptimal PT and when I returned appeared to have regressed. Bit within three days of the morr optimal PT actually feel better than when I left. I am hoping that this is because I am slowly improving and ot took a lapse in proper comparitive data to see this.

Right after the surgery I did a simple calculation to determine my expected recovery time. I based this calculation on four assumptions. First that there were nerves still living between and at my spinal cord all the way to the tips of my toes. Secondly that new nerves and nerve strengthing could occur along active but challenged pathways if the living nerves were excited and challenged. Third, I could create, monitor and continuously improve the nerve challenges so that they would indeed strengthen and grow new cells. Fourthly, that nerve growth was of the order of 1 millimeter per day and that maximum nerve length growth was of the order of 1.5 meters. With these assumptions it would take 1500 days or approximately four years from my surgery for new nerves to grow as needed. I have not as yet determined if additional training time is needed for these nerves to properly conduct sensation and motor actuation stimulus. As the operation was December 2013 I truly rough engineering guesstimations says I should expect improvements up to Dec 2017 and probably further. So maybe I am on path. I am an engineer, not a medical person, so please understand this ismpure (hopeful) guesswork. Duke


#3

Thx for your detailed interesting post duke. Have u bowel and bladder issues too?


#4

Yeah i second Michael where all the posts gone??


#5

I am also a spinal an am sure

rvivor and have posted before now I can’t find the site that l was directed to when I joined in June


#6

Hi Pattycake,

Unfortunately we had to migrate to this new website format recently as our old provider was no longer available. It is a bit of a learning curve to get used to, but I can promise you we are working hard to improve it! We definitely welcome your feedback- what features do you miss? Which parts are difficult to navigate?

Meli from Mod Support


#7

Hi Michael and Robert,

I am new to the Mod Support team, but I will see if I can help you out! All the posts should be transferred to our new site, but they may not be easily found like before. Was there a specific heading for Spinal AVM posts?

If you can remember the name of the particular discussion, you can use the search icon in the top right corner of the green bar. Typing in “Spinal AVM” may also help you find them.

Hope this helps!

Meli


#8

For example, old links here:

http://www.avmsurvivors.org/group/spinalavf/forum/topic/show?id=1543517%3ATopic%3A751718&xg_source=msg

http://www.avmsurvivors.org/group/spinalavf?commentId=1543517%3AComment%3A751777&xg_source=msg_com_group

http://www.avmsurvivors.org/group/spinalavf?commentId=1543517%3AComment%3A751784&xg_source=msg_com_group

And so many more…


#9

Hi Michael,

What I imagine has happened is that those are links to the old website, and no longer exist here in the same place. And it looks like when we transferred discussions over to Discourse, they weren’t properly classified under “Spinal AVM.” We will have to find them on the new site, can you remember what they were called?

Here is a search for “Spinal AVM” sorted by the most recent posts. Are any of those discussions here?
http://www.avmsurvivors.org/search?q=spinal%20avm%20order%3Alatest

Meli


#10

All my old post are gone as well. I have added some new data on my profile on this new platform. My AVM was at T10 and the surgery was on 29th Oct 2015 nearly a year ago. The calculation done by dukestur gives me hope :slight_smile: … Hope in 3 years time my walking will improve much better. Currently is plateau. I can walk some days 1 Km and on some good days 3 Km. 6 years ago before I had the AVM issue I can walk all day. At least I can walk now compared a few weeks before the surgery where sometimes I can’t even walk from my bedroom to the kitchen. Also my bowel & bladder issue are back to normal.
Greetings from Melbourne - Australia, Franz


#11

For your info, there is also AVM Support UK with similar AVM story/experience sharing between AVM survivors.
http://avmsupportuk.btck.co.uk/OurExperiences


#12

So great for you, that bladder and bowel are working again. That are my two bad things to handle. And the damn (sorry…) pulmonary embolism 2013, caused of a deep vein thrombosis, now compression and bloodthinner for life time. Best wishes to wonderful australia !


#13

Hallo Michael,
Sorry to hear that you still have problem with your bladder and bowl movement. What about your walking? With me I have good days and bad days with my legs. On good days I can walk up to 3 Km, but on bad days my legs are stiff and the pins & needles (Pin & Nadeln Gefühl) in my legs & foot are stronger and can only walk up to 1 Km. Next week I will have another MRI scan to check the spine around T10.
Let’s hope you will have some improvement with your condition.
Wishing you all the best, in particular during this Advent time.
Schöne Grüße aus Melbourne,
Franz


#14

Hallo Franz !

Yes, was a long way since Oct 2012. First they thought its Mutliple Sclerosis. Then they found (random) the suspect of AVM. So after many embolisations and big laminectomies all the post-checks have been good. No signs of new feeders.

Walking like you: Good days and bad days. But after over 4 years I learnt to handle it. Without helpers perhaps some hundred meters, for longer walker or wheelchair. The only problem still is the bowel “fear”. the fear of accidents.

Have you a numb side too? My left leg is para, the right is weak and numb. Its called brown sequard syndrom.

But after all, I am very happy to be here and to be able to write this lines to you :-9

Best wishes !
Michael


#15

Hi I have a spinal AVM n became a paraplegic 32 yrsago after my AVM paralysed me 32 yrs ago. I live in the U.K. n stopped looking at the site because it seemed to be mostly about support groups in the States when I would have loved particularly liked support n meet up with people in the U.K.

The site is great though cos us with AVM’s must love one another cos an AVM is a very rare health condition.


#16

Hello Dize,
yes its so rare. Have only handful over the world, no one in germany. How is your treatment, its obliterated? And have you bowel & bladder issues too? Best wishes !


#17

Hallo Michael,

Good to know that not only me who has good and bad days. I tried to investigate what are influencing good/bad days… but no clue so far. My family doctor also does not know, because I am his 1st patient with spine AVM problem. The neurologist said that not many people has this problem, they are still gathering information from the findings they are collecting from us from post surgery check-ups.

Good that you have learned how to handle your problem to go through your daily life. A few months before the surgery and 2 months after the surgery I also had bowl and bladder issues and had some accidents. I am glad that the problem has gone now and I have nearly to normal bowl movement (got constipation every 2 or 3 weeks) and normal bladder control. I don’t have numbness now. About 2 months before surgery I was not able to feel both of my legs. When my legs is touched I will not know. My foot was bleeding because might have hit something and I did not feel any pain. I walk like a robot without feeling of my legs and have to look at my legs all the time when walking to know that they are moving. I am glad that slowly after surgery the feeling on both of my legs are improving. Now I can feel when touched, but the temperature sensing is approx 10C colder than it should be. If I touch my legs with my hands, my leg feels that my hand is cold and my hand feels that the leg has same temperature as my hand. A warm metal item at 45C touching my leg will feel normal temperature. A metal object at 20C touching my leg feels icy cold.

Like you, I am happy to be able to walk around (not perfect) and enjoy my life :smile:
Cheers,
Franz


#18

Hi Michael

Yes unfortunately I lost control of both my bladder n bowel the day the AVM that changed my life over 32 yrs ago.

Dize


#19

Michael

I’ve found a way to move some topics, so I’ve moved a few into this category. If it is useful to do this, let me know and I’ll have a hunt around for more topics.

Hope this helps,

Richard


#20

Thx Richard,that’s a good idea!Will check my topics the next days. Thx for supporting Michael

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