Permanent Brain Loss and Damage

[mommasita]

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.

 

[SoonerSarah]

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?

 

[mommasita]

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

 

[SueM in MN]

For anyone who wonders what a Chiari Malformation (CM) is, here is a good resource:
http://www.ninds.nih.gov/disorders/chiari/detail_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.

 

[WheeledTraveler]

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".

 

[disfan07]

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

 

[mommasita]

Thanks everyone for your replies.

I wanted to post to say a thank you. I have started these new pills, and right now am not used to them yet, and I have a lot of dizzy spells. So, I can't really form a good thought or answer, but I will.

Thank you again

 

[mommasita]

Typed out a long post, and the computer ate it

I'll try again.

Thank you to everyone, to you Sue M, and everyone else.

Right now I am in physio/ergo 2x per week. I also meet with a psychologist after my last session per week, she works at the same center. Next week it was supposed to increase to 3x per week, but they say I am not ready yet.

I actually saw my Neuro last week, and am awaiting a Cat Scan and an MRI because he is fairly certain that the Chiari has returned . I hope and pray this is not the case, but there are a lot of signs pointing that way. I honestly don't think I can undergo that surgery again. I had a HUGE CSF leak a week later, landed back in the hospital with a shunt from my spine to my brain, and that was worse than the surgery itself for me. Nothing was stopping the leak, and even my surgeon consulted with the Mayo clinic as to what to do if the shunt didn't work (it did), and it just was absolutely petrifying. I later found out that I had a stroke and a large bleed during the Chiari surgery, and I just don't know if it is worth the risk again.

Today was my meeting with the psychologist. I can say it went well and it did not. She is going to get some info on some closed groups because I am shy, and she thinks that open ones won't work to my benefit. I won't speak up, and well what is the point. She had some recent medical tests, memory, and others. She also spoke of the possibility of never being able to return to work. I guess I will just take it day by day, what choice do I have.

I can tell you that I am in extreme pain tonight, and too sore to sleep. My legs are throbbing.

Thanks everyone.

 

[Earstou]

mommasita,
If you do feel you need surgery again, I urge you to seek out one of the Chiari specialists. If your doctor told you your Chiari was "gone" and has now "returned", then he truly is not a Chiari specialist. The Chiari specialists fix many surgeries done by inexperienced doctors. They also will give advice and suggestions on treatment, which isn't always surgery.

There is no cure for Chiari, there is only surgery to address the symptoms. Some people do become symptom-free after surgery, others do not. I have heard that the longer you have Chiari before surgery, the more damage is done, and it's less likely you will be symptom free after surgery.

Dr. Paolo Bolognese, at the Chiari Institute in New York is one of the leading Chiari doctors in the world. My surgeon, Dr. John Oro in Colorado is also fabulous and one of the top doctors. Both see many patients from all over the world. Usually Canadians pick Dr. Bolognese because of his location.

Dr. Oro has perfected his surgery to the point that far fewer of his patients have problems such as you experienced. He talked to me about using very fine stitches to avoid CSF leaks. My surgeries with Dr. Oro, decompression and a cervical spinal fusion (totally unrelated to Chiari), have been some of the easiest recoveries I have ever had, and I think it's due to his skill as a surgeon.

Join an online Chiari support group. Ask about brain damage and how to cope. You can also learn so much just by reading other's questions and answers. Dr. Oro's site lists some groups here: http://chiaricare.com/Resources/Patient-Support.aspx

I haven't been tested, but I know my short-term memory is not good. Before I was diagnosed, I used to worry I would wake up one day and not remember my kid's names! Now I work at remembering, trying to come up with things to help me. I will leave notes to myself, in places where I won't miss them. On my keyboard, on the sofa, on my mirror right at eye level. If it's something really important, I leave multiple notes.

I had surgery 10 years ago, and, because I was seeing doctors that did not know Chiari, searched for an answer for 13 years before that. Because I went so long, I have quite a few symptoms that still bother me.

A few years back was one of the worst times for me. I was told that eventually I will be trached and on oxygen. Another local doctor told me I would continue to lose weight until it was necessary for a feeding tube. Both of these diagnoses were made based on the fact that I have Chiari, made by people unfamiliar with Chiari. Since that time I've learned that I have Dysfunctional Vocal Cords, causing the breathing problems, and working with a speech therapist to learn breathing techniques has helped. Also, I've gained weight instead of losing weight, so I no longer worry about the feeding tube.

I often say that I am making lemonade, meaning I take the bad and try to see something good that comes from it. I also laugh at myself alot! I sometimes say that if I didn't laugh, I'd cry...and I'd rather laugh.

Hang in there! You have a rare condition, and you have already survived brain surgery. Be proud of that! I think us zipperheads must be really strong to endure everything that we must with this strange condition!

 

[mommasita]

Thank you for all that

My original surgeon never did say it was gone, he really did explain it well. I think, as far as I can remember.LOL

I actually have changed Dr.'s for a few reasons. My surgeon came very highly recommended for Chiari. For me it was more language. I am fluent in French, but when it comes to medical issues I am not. Also, he was extremely far, and I am not a fan of driving these days. My husband works long hours, and this new Dr is a the Neurological Institute.

I have my CT Scan on the 26th at 8am. I couldn't believe that, but I am glad it is soon. If indeed the results are not favorable, I may reach out to one of yours. It would depend on $ though, as here it is all without cost. After all the surgeries I had, and time spent in the hospital, I can't imagine the cost of it all.

Boy you have been through a lot. You are a trooper

I do laugh at myself as well. Sometimes I cry, but I am a glass 1/2 full person. Even the psychologist said was NOWHERE near depression, she thought I was the total opposite.

I will investigate you links thoroughly. Thank you very much

 

[WheeledTraveler]

The suggestions for Chiari specialists in the US are good and I'd like to add Dr. Fraser Henderson, in Maryland, to that list. He did my Chiari at the same time that he needed to fuse my skull->c2. He also did surgery on me for occult tethered cord syndrome. Both he and The Chiari Institute doctors would likely evaluate to see if there are possibly more unusual things going on along with the Chiari (tethered cord syndrome of any type is unusual, for example). Dr. Henderson has also worked with several patients from Canada. The only friend I have who saw Dr. Oro had already had Chiari and tethered cord surgeries, as well as having extensive other diagnosed medical conditions so I have no idea whether he evaluates for things like tethered cord and cervical instability the way that Dr. Henderson and TCI do. (I expect he at least evaluates for the cervical instability side of things.)

I've found online support groups better than in person for me. Online I can deal with them in my own time, at my own pace, and take breaks if things are too much. I also tend to find I'm less shy online. I don't always find them good for coping skills because often the people you find in online support groups are the ones not coping. That can turn into a cycle, which is one reason I take breaks at times. That's why I like my combination of online support groups and then one-on-one therapy. I really don't think even in person support groups would ever be able to fulfill the one-on-one therapy I've needed to learn coping skills. Not to mention that, like you, I'd be too shy to speak in an in-person group!

 

[Earstou]

WheeledTraveler, yes, Dr. Oro does check for other conditions like tethered cord and cervical instability, also Ehler-Danlos syndrome (EDS). I know he has done TC surgery and fusion for instability on other support group people.
He diagnosed and then did surgery a few years ago for my cervical kyphosis.

You bring up some good points about on-line support groups. It is nice that we can take them at our own pace, because I find it all can seem too much for me to handle at times, and I need to step back for awhile. Sometimes it's nice to focus on things other than health concerns.

mommasite, glad to hear your surgeon came very highly recommended and explained it well. Good luck on your CT scan !

 

[mommasita]

Thanks guys!

I joined one group on FB, and I will look into the others.

Such good points brought up here. I do like the online thing, and for the same reasons. Some days you just can and want to, and other days (weeks sometimes for me) you just don't want anything to do with anybody. Nice to see that I am not alone there. I don't mean any malice by it. I can just see myself sitting in a room of chatters, and just being a wallflower really. ALso, my attention span is -zero . I want to listen attentively, but I just wander off.

I have 2 physio appt this week, and then it is closed until Jan 3 for the holidays. In between I have the CT, so that is plenty for me these days.

I am just glad I have private insurance. It is almost 4 years, and every month I am thankful that I do. The thought of not having it scares me.