Post-surgery Q: Mental acuity & writing (focus) --take longer?

General
1

I had decompression surgery almost one year ago. I haven't had a headache since I woke up. I am very much improved.

However, right before I found out I needed surgery, I started a new job. I worked for 5 months (in excruciating pain) then I took off for 3 months around Christmas last year to have surgery for Chiari and tethered cord. I was back at work in the beginning of February.

I am an attorney and the job I work in requires intense focus and attention to detail. I feel like it is only in the last month that I have been working more to my capability. However, it still takes me longer to focus and complete a writing assignment than would be "standard" or me or for most people.

Officially, my job was "temporary" with the intention of hiring me permanently. (I work for the government). My supervisor told me last week that the position was approved for "permanent" but that she didn't think the job was for me...that it took too long to turn in my work, my work product was inconsistent and I was "unreliable." (I am at work every day at 8:30 -- before she is -- and stay longer than 8 hours, every day. I can only assume she is referring to the time I missed. But I didn't ask for clarification on that point.)

My job involves what I do best-- reading, writing and researching. My supervisor acknowledged that my writing (in one type of writing product) is extremely good. The writing that I am not (consistently) doing very well with is the "new" type of writing that I have been learning since I started this job.

My questions: For those of you who have had surgery for Chiari --

- did you notice that things requiring focus take longer to do after surgery?

- do you feel you have reduced mental acuity (focus, memory, concentration and understanding)?

- if so, are you back to normal? And how long was it until you felt back to normal?

PS. Dr. told me that my medula oblongata was compressed and twisted; chiari malformation of 7mm; and the words "near pathological" were in his report discussing my diagnosis.

Any input greatly appreciated. Thanks.

2

Md,



I’m sorry that this happened to you. I can’t imagine how you must feel. Part of the injustice with Chiari is that we look good. It’s hard for the people around us to understand that we have a brain injury when we present so normally. I had my surgery almost 8 mos ago. My medulla was NOT kinked, and I still have difficulty with word finding, correct word placement, and spelling (my brain wants to spell everything phonically (sp?). I have had a lot if improvement though, especially in the last couple months. As with all of my symptoms I have good days and bad. I am lucky though, in the sence that my job requirs very repetitive verbal interactions with my coworkers and customers, I do not always need to think on my feet and my basic work vocabulary and moves were already ingrained as habit before the Chiari struck. It sounds like you have been kind of thrown to the wolves at your job. You have taken on a new role in learning a new skill while recovering from a brain injury. That says a lot about what a brave person you are. I wonder if your supervisor has even considered what type of person would take up the challenge that you have immediately after brain trauma and surgery. You can’t control what this lady is going to do, but you can be proud that you have guts and courage! It means a lot for us to hear what you have accomplished so soon after your recovery. I can’t answere your question about when you will be back to “normal” but I can say that I believe it gets better and better. At some point this new writing style that you are learning will become more fluid and habitual. It sounds like this lady doesn’t “get it” - but i hope she doesnt make a big mistake because of it. You have a lot to be proud of. I’m proud of you.



Jenn

3

I forgot to mention what an amazing role model you have been for kids too!

4

Jen,

I don't even know how to thank you. Your response brought tears to my eyes.

I have also gone through several other personal issues the past 2 years. (Multiple deaths in my immediate family and serious issues with my now-almost-18 year old teen).

I wasn't sure if I should think that these issues could still be caused by the Chiari.... but I have no other way to understand why it takes me so long to finish writing...

I think you got to the heart of it all -- I have tried SO HARD. This is a job that fits my skills and I truly enjoy doing the work.

It is so frustrating! Last week, when she sat down with me to review work I had given to her (some of it was from April - yes, really!), I immediately saw mistakes that I would never, normally, submit in my written work. I don't know how I missed them or why they were there. (However, I was having major issues with my teen in April; I wasn't sleeping and was so upset that I was vomiting in a can under my desk at work. I hid the vomiting, of course.)

She knows all I've been though...but you're right -- since we look healthy, it's easy for others to "forget" or underestimate what we are going through.

Thank you so much for your kind words. This is really difficult for me and you just made it a bit easier...

5

Yes, what you describe is definitely Chiari. I wish I could reach out and give you a big hug- it sounds like you have had a really trying year. I’m going think positive for you, I want you to keep that job, or one just like it (minus the unsupportive supervisor!)

6

Thank you so much! I just have to think that this may end up leading to something better!

7

Hi! I am almost 2 years post op and just came back to work from my 3rd medical leave. For 10 years I had this job, worked my way up, and now it is all going to crap because I just can not think like I did prior to surgery. I am making silly mistakes and forgetting what I am doing while in the middle of a project. I feel like I am at huge risk of losing everything. My brain is just not what it used to be! I feel like it did better under pressure, literally. So you are not alone but your situation really stinks. I hope this leads you to bigger and better things!

8

I I have a recommendation that would help your concentration. I talk Adderal XR because I can't take anti depressants and It increases my heart rate for my POTS.

We have found three additional benefits that we had never discussed.

1. I don't concentrate on my pain 24/7. I know it's still there and can feel it but it's not my main focus every second.

2. My concentration is remarkable.I can think and write again. I do have word blindness (it's a type of alexia) post CM, so if I am not feeling well I do misspell words and have grammatical issues, but am very happy my concentration has improved and I don't take any medications to cause brain fog , but that isn't a problem post CM either.

3. Weight Loss from not trying at all. You just aren't hungry. I would be embarrassed to tell you exactly how much weight I have lost since I started the medication in Nov., but lets just say I am the same size I was as a Sr. in high school.

Now, I have really low normal BP that is why I take Adderal XR for POTS & it's been very successful & monitored closely. The Medulla Oblaganta plays a part in ADD /ADHD. It just makes sense ADD/ADHD medications could help your concentration.

9

TRod20,

I'm sorry to hear that you are going through this, too. It is SO frustrating!

I do the same kind of stuff...

It takes me forever to "get focused" and then, when I am writing, I have to stare and stare (way longer than I used to) to put what I want to say into words. Then I have to keep re-reading it over and over to make sure it is right...because if I don't there WILL be mistakes! Even writing e-mails, etc, take longer than they should!

And I forget things...I try making lists, but it's hard to write EVERYTHING down!

Someone should start talking about this so that others are aware...from what I am hearing and finding out, it is not an unusual problem.

TracyZ has a really good suggestion; maybe you can look into that, too? (I am going to!)

Thanks for sharing, and hopefully it will get better for you..


TRod20 said:

Hi! I am almost 2 years post op and just came back to work from my 3rd medical leave. For 10 years I had this job, worked my way up, and now it is all going to crap because I just can not think like I did prior to surgery. I am making silly mistakes and forgetting what I am doing while in the middle of a project. I feel like I am at huge risk of losing everything. My brain is just not what it used to be! I feel like it did better under pressure, literally. So you are not alone but your situation really stinks. I hope this leads you to bigger and better things!

10

TracyZ,

Thank you so much for offering a possible solutions; it actually might work for me...

When my Chiari symptoms got really bad, which was right before my surgery last year, I started having symptoms of narcolepsy. I was prescribed Nuvigil (a regular dose) which immediately had to be increased to work. Recently it stopped working and I had to move up to double the highest dose. I know that Adderall is a med that they for narcolepsy when Nuvigil (and/or another med) don't work or stop working for someone.

I was actually hoping the narcolepsy would go away...but so far, it hasn't...

I, too have VERY low blood pressure (as in...are you alive??) and POTS.

...now here's the really hard part.... I have to find a doctor that understands all this!

(PS my current narcolepsy meds are no longer prescribed by a specialist -- and originally they were given to me by a psychiatrist. I no longer see her -- it was pain related depression prior to my surgery.)

Thank you so much for this suggestion.

TracyZ said:

I I have a recommendation that would help your concentration. I talk Adderal XR because I can't take anti depressants and It increases my heart rate for my POTS.

We have found three additional benefits that we had never discussed.

1. I don't concentrate on my pain 24/7. I know it's still there and can feel it but it's not my main focus every second.

2. My concentration is remarkable.I can think and write again. I do have word blindness (it's a type of alexia) post CM, so if I am not feeling well I do misspell words and have grammatical issues, but am very happy my concentration has improved and I don't take any medications to cause brain fog , but that isn't a problem post CM either.

3. Weight Loss from not trying at all. You just aren't hungry. I would be embarrassed to tell you exactly how much weight I have lost since I started the medication in Nov., but lets just say I am the same size I was as a Sr. in high school.

Now, I have really low normal BP that is why I take Adderal XR for POTS & it's been very successful & monitored closely. The Medulla Oblaganta plays a part in ADD /ADHD. It just makes sense ADD/ADHD medications could help your concentration.

11

It honestly sounds to me like you've done remarkable learning a new job dealing with surgery and a teenager! I am not sure when things get better with vocabulary but I have had a few issues post-op. I sometime have trouble finding the word I want and sometimes I use the wrong word though I immediately know it's wrong and sometimes not even related to what I'm saying! I've always been very good at spelling but on occasion I find words look as though they are spelled wrong when they are not and I have to double check them. I am less foggy than I was before and immediately after surgery so I am just hopeful all this will clear up. In the meantime I do crossword puzzles on my phone, read frequently, and play Words with Friends to keep my brain working! :)

12

Thank you Anglyn.

I am to hear so many others have this problem; but as always, it is comforting to know I'm not alone!

I was really getting down on myself - I felt like I should be doing better than this!!

If I do end up unemployed, I will certainly do crosswords and continue working on my focus.

Thanks, and good luck!



Anglyn said:

It honestly sounds to me like you've done remarkable learning a new job dealing with surgery and a teenager! I am not sure when things get better with vocabulary but I have had a few issues post-op. I sometime have trouble finding the word I want and sometimes I use the wrong word though I immediately know it's wrong and sometimes not even related to what I'm saying! I've always been very good at spelling but on occasion I find words look as though they are spelled wrong when they are not and I have to double check them. I am less foggy than I was before and immediately after surgery so I am just hopeful all this will clear up. In the meantime I do crossword puzzles on my phone, read frequently, and play Words with Friends to keep my brain working! :)

13

Emmaline,

I'm glad to hear it isn't just me (...being stupid??)...

Just what you are talking about (paying attention to misspelled words, or where a comma is) is what my job is all about! And that's exactly what I'm doing...I take forever to complete work, when I'm done I read it and think its fine (or else I wouldn't have turned it in!!) only to later find out there are these things that I didn't see!



Emmaline said:

Sounds very normal to me...I still find trouble with words and spelling. I'll see a word I typed is underlined, meaning it's spelled wrong and I can't see what's wrong with it. I have to right click on it to put the right spelling there and still not be able to tell what changed. My surgery was a year ago June 1st, and it does still get better.

You seem to be doing awesome, and should be so proud of yourself! Pfft on your boss that doesn't recognize that!