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Old 12-05-2012, 11:08 PM   #1
mommasita
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Permanent Brain Loss and Damage

Hi, I was wondering if anyone has any experience in dealing with this?

Although, I was quite certain I had a fair amount of loss, It was confirmed to me this week, that it is permanent and it may continue to get worse. Counseling was suggested to learn how to adapt for myself, as well as my family.

I am a 43, and have had a few surgeries, brain, spine. They believe my Chiari malformation may have started a long time before it was found, and that the damage was from this.

I am currently 2 years and a little past my last surgery, and this week have started Physio and Ergotherapy, to attempt a return to work.

I was pretty bummed when my Dr (whom I trust) seemed very concerned with what type of work I can do.

Thanks in advance.
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Old 12-07-2012, 01:58 PM   #2
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My youngest daughter had a playground accident when she was 20 monhs old, she has a TBI and suffered a stroke. Her recovery has gone well, but she does have permanent brain damage.

I don't have experience with chiari malformation, but I know what it is. I am sorry you have had to go through this. Have you sought out any support groups?
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Old 12-08-2012, 09:06 PM   #3
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HI. I am sorry you had to go through that with your daughter.

Honestly I haven't. I think I am about to. I just get that "it is time" feeling. Seems like it isn't a popular topic here, and I guess that is a good thing.

Thank you
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Old 12-09-2012, 07:31 AM   #4
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For anyone who wonders what a Chiari Malformation (CM) is, here is a good resource:
http://www.ninds.nih.gov/disorders/c...ail_chiari.htm
This looks like a good website also:
http://www.chiarimalformation.ca/
It is worldwide, but based in Canada. it has a lot of information about Syringomyelia, but is for anyone with CM or related conditions.
(Syringomyelia is a condition some people with CM have that involves fluid filled cysts that form in the spinal cord's central canal.)

My youngest DD has Cerebral Palsy, so has permanent grain damage. We got the diagnosis about it when she was 19 months old, so have had a long time to get used to it.
I've never gone to any support groups, but whatever the condition, I know some people benefit a lot from participating. People do have difficulty absorbing and adapting to new or changing health conditions. Feelings of loss and grief related to that loss are common, normal, natural reactions.
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Old 12-09-2012, 10:35 AM   #5
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If you use facebook, I'm sure there are groups on there. Also, look for local groups for people with brain injury. While they may be aimed more at people with traumatic brain injury, I'm sure they'd welcome you in. I know there are facebook groups for Chiari and similar conditions. Plenty of people who've had Chiari end up with lingering neurological issues

I'm glad you're in physical therapy and ergotherapy. Is either of those giving you any occupational therapy support as well? I recently (through a weird range of events) ended up in an inpatient rehab hospital for a couple weeks, which was the first time I had access to real occupational therapy. Now that I know how it works, I'm pushing to get more as an outpatient because it's giving me all sorts of tricks and hints on how to do more things without overtaxing my body or my brain.

I had Chiari (decompressed about 16 months ago) and have several other conditions that have caused neurological issues that didn't necessarily get better after the surgeries to fix them. I also have brain fog issues that are from other conditions that aren't really "fixable". I'm 28 and had to give up work about 2 1/2 years ago, but that was a culmination of issues (I have Ehlers Danlos Syndrome along with a host of other issues). If you can, see if you could work with a psychiatrist or other sort of therapist who has experience working with people with disabilities (especially acquired or progressive disabilities). My shrink is a lot of the reason that I was able to ever work in the first place (no one expected me to ever be able to work initially) and then has been instrumental in my coping with not being able to work anymore. I may eventually be able to go back to very limited work, but one thing I'm working on is defining myself by things other than "work". It's hard to do since as a society we define people so much on what they do for work. It's kinda silly when you think about it because there's so much more to people than "what they earn money for doing".
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Old 12-09-2012, 01:02 PM   #6
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[QUOTE=WheeledTraveler;46887385]If you use facebook, I'm sure there are groups on there. Also, look for local groups for people with brain injury. While they may be aimed more at people with traumatic brain injury, I'm sure they'd welcome you in. I know there are facebook groups for Chiari and similar conditions. Plenty of people who've had Chiari end up with lingering neurological issues

I'm glad you're in physical therapy and ergotherapy. Is either of those giving you any occupational therapy support as well? I recently (through a weird range of events) ended up in an inpatient rehab hospital for a couple weeks, which was the first time I had access to real occupational therapy. Now that I know how it works, I'm pushing to get more as an outpatient because it's giving me all sorts of tricks and hints on how to do more things without overtaxing my body or my brain.

I had Chiari (decompressed about 16 months ago) and have several other conditions that have caused neurological issues that didn't necessarily get better after the surgeries to fix them. I also have brain fog issues that are from other conditions that aren't really "fixable". I'm 28 and had to give up work about 2 1/2 years ago, but that was a culmination of issues (I have Ehlers Danlos Syndrome along with a host of other issues). If you can, see if you could work with a psychiatrist or other sort of therapist who has experience working with people with disabilities (especially acquired or progressive disabilities). My shrink is a lot of the reason that I was able to ever work in the first place (no one expected me to ever be able to work initially) and then has been instrumental in my coping with not being able to work anymore. I may eventually be able to go back to very limited work, but one thing I'm working on is defining myself by things other than "work". It's hard to do since as a society we define people so much on what they do for work. It's kinda silly when you think about it because there's so much more to people than "what they earn money for doing".[/QUOTE]

I agree 100% with this. I think finding a therapist is one fo these best things to do. especially if you can find one who specializes in medical conditions.

I don't have any permanant brain loss but I did have some neurological changes after my pineal cyst removal 2 years ago. I have more problems with concentration and attention than I did before. I also still have some balance issues (we all thougt they would have resolved by now) but its better than what I had before surgery. I also still have some visual issues because of the cyst (mainly just night time vision/driving...very minor). But I also have a whole list of other, non neurological health problems and its hard. My life seems to change day by day and week by week. I'm in college but have not really been able to have the normal college experience.

I have been working with a psychologist whos specialty is working with individuals with chronic medical conditions and she as been wonderful. She's a huge part of the reason why I have made it this far and why I can deal with all of the constant chanegs in my health.

I was reluctant at first but I've been working with her for almost 2 years and she is amazing.

Good Luck
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