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Avatar universal

An update and some questions

I know I've been MIA since my big surgery day, They did the decompression and laminectomy of my C1 and C2. I actually found out after the surgery that my poor brain was so squished that I was months away from having a stroke. It's been chaos with trying to recover, the twins and getting back to work. Yeah, I've been back to work for FOUR weeks already. I only needed 5 off which was great. The surgery itself was good. No complications and only 2 1/2 days in the hospital. Luckily everyone at the hospital loves me so I was able to stay on my floor with all the nurses I know and trust. In fact, I still see the residents who took care of me and my surgeon every weekend. My incision is healing nicely. My surgeon definitely did an AWESOME job.

Now, the questions. When I was diagnosed with Chiari they also found a 1 cm Pineal Mass. My doc wasn't all that concerned about it. We did multiple MRI's, CT Scans and tests and he's certain it's just a benign cyst. He did tell me to schedule yearly MRI's to keep an eye on it and if it grows then he wants to do surgery to remove it, but for now..just let it be. The problem...my headaches were gone for a good month. Not a SINGLE headache. I loved it. Now, slowly, they're starting to come back. Not nearly as bad as they were, but they're creeping back. They're always on the left side and I'm a bit concerned that it could be the pineal mass. I know there is no CSF leak, I've been careful and keeping an eye out for the symptoms. My question is...could the decompression surgery have made room for the pineal mass to start growing? And if so, would it be growing after only 9-10 weeks???
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620923 tn?1452915648
COMMUNITY LEADER

It is always good to read the reports....I found things Drs never told me once I got a hold of mine.....
Helpful - 0
Avatar universal
I actually jest went through and read the results from my very first MRI.

There is approximately 1.0cm T2 hyperintense pineal region mass,
which is incompletely evaluated on this study, likely represents a
pineal cyst. Further evaluation with dedicated thin contrast
postcontrast sequences to confirm the cystic nature of this mass is
warranted.

Nobody ever ordered contrast with either of my MRI's or CT.

I may bring that up to my NS when I call him this week.
Helpful - 0
Avatar universal
Thanks, Selma; interesting.
This forum has been so helpful,  w/cautious optimism & a wide variety of experiences.  We could be a tv show!

Good luck honeydew
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Avatar universal
I'm going to make an appointment for after next week. We're leaving for our vacation on Tuesday, and it's our first one as a family, so I don't want to ruin that for my family (or myself. I haven't had a relaxing week in years)

I have noticed that the headaches only go away with asprin or going to sleep, which doesn't last for more than an hour. I was talking to one of the residents today and he said the same thing about making an appointment. I'll let you guys know what the good doc says.
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620923 tn?1452915648
COMMUNITY LEADER

  The 3 month time frame is something I noticed from everyone that posts...it is how they feel emotionally or have symptoms returning.....I did not push the issue when I had surgery, I was more looking to see what everyone else's experience was....and u can see patterns....it is generally 3 months...and I think it has to do with the meds leaving our system...by then we r off most of the stronger meds, and nething from the hospital should be out of our system,.....we can feel the healing at this point, and that is y we also feel the symptoms....plus, bcuz we have feel so wonderful to this point we rush to get back to normal life and sometimes we over do it,


@honeydew- yes it makes a diff the HA's r diff, but u have to wonder if it is that u r doing too much....could be scar tissue has formed...or it could be ICP.....do get this checked.
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Avatar universal
Does it matter that these headaches are different than pre surgery?

Before it was a ton of pressure and this throbbing in the back and across my forehead. Now, it's a pounding at my temples. Plus my vision has been getting a bit blurry, I'm nauseous (no vomiting...yet)  and every now and then my head feels...heavy. That's the only way I know how to describe it is heavy.

I work tomorrow night so when I see one of the residents (they've all been actively involved with my health since my first apt.) I'm going to chat with him and see what they suggest or if they're concerned.
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Avatar universal
Selma, I've seen you mention this approx 3 mo post op time frame several times.  Is there any explanation for it?  How typically would you say it has come up?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and thanks for the update...I am shocked u r back to work so soon!!

Many times at around the 3 month post op time frame we tend to have some symptoms resurface...it is part of the normal healing process...and the more u do, the sooner u may have it.

We should move, and do some things. but u r still healing and may be doing too much too soon.JMHO

As for the mass, I too do not know much about it to advise u only to keep an eye on it....but not even considering it, how u r feeling is normal for the time frame....u may want to slow down a little when u feel a HA coming on....keep in mind it can take up to 2 yrs to fully heal the nerves....just bcuz the incision looks good does not mean we r done healing.
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Avatar universal
My NS is in Europe for another week for some conference or something of the sorts. I may have to give one of the residents a call/text and see what he suggests. I'd hate to have gone through the decompression surgery and just as I'm getting better need another surgery or chemo/radiation. That would really s.uck.
Helpful - 0
1306714 tn?1327257080
Nice to see you back and that everything went o.k.  I can say for me the surgery helped a lot, but I still have HA's daily, but not pressure HA's so they are different.  Getting back to work and being active can cause this also, but I don't know about the mass.  Did you ask your NS about this possibility?  Just please take it easy.  I didn't get a 2nd CSF leak until 9 wks after my 1st surgery which the NS couldn't believe.  I am happy to hear your taking precautions.  Keep in touch and let us know what the NS says about this mass.  Best wishes.
Linda :)
Helpful - 0
1925822 tn?1333705617
Mmmh...on the pineal mass i also can not give u answers.but 1cm of a mass more in the head can definetly an issue in a too small skull.u might search another opinion on that.great.to hear about ur decompression sucess.and sad but true...surgery is not a cure and symptoms can come back...oh these ha i know
Helpful - 0
1968463 tn?1374757813
zI am sorry that I have absolutely nothing as far as answers to offer you, but I wanted you to know that I am thinking and praying for you. Best wishes <3
Helpful - 0
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