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Pineal mass
Last year I was diagnosed with Chiari Malformation type 1. During the initial MRI not only did the Chiari present (I've since had surgery to correct it.) but also a 2.9 cm x 3.5 cm pineal mass.
Shortly after my Chiari surgery my headaches returned. Not as bad so I was happy. My surgeon told me the headaches may not go away 100%. They kept getting worse and worse so he ordered an LP. It came back on the extremely high, normal side. That was the end of that.
Starting a week and a half ago the nausea set in. I thought pregnancy but my period started. The nausea continued getting worse and I have thrown up a few times. And yesterday the stiff neck started. I can't eat without getting sick. I can't drink without getting sick. H3ll even doing nothing makes me sick.
I have contacted my neurosurgeon but it's Sunday...I am friends with a few of his residents (I work at the hospital he practices out of) and I was talking to one today about it. He didn't give me to much advice once he found out I was talking about myself.
Could the pineal mass be growing? Or affecting me?
Shortly after my Chiari surgery my headaches returned. Not as bad so I was happy. My surgeon told me the headaches may not go away 100%. They kept getting worse and worse so he ordered an LP. It came back on the extremely high, normal side. That was the end of that.
Starting a week and a half ago the nausea set in. I thought pregnancy but my period started. The nausea continued getting worse and I have thrown up a few times. And yesterday the stiff neck started. I can't eat without getting sick. I can't drink without getting sick. H3ll even doing nothing makes me sick.
I have contacted my neurosurgeon but it's Sunday...I am friends with a few of his residents (I work at the hospital he practices out of) and I was talking to one today about it. He didn't give me to much advice once he found out I was talking about myself.
Could the pineal mass be growing? Or affecting me?
I've been eating a ton of saltines. That seems to be helping. Gingerale and water have been my friends also.
Unfortunately I have had bouts of vomiting which *****.
I'm at a week +1 day till the tests and appointment.
Unfortunately I have had bouts of vomiting which *****.
I'm at a week +1 day till the tests and appointment.
Best thing is not to fight it - go with the body. I do hope your doc gives you something for nausea if OTC items like ginger tea, ginger candy (with real ginger), ginger - and even sometimes the pickled stuff too.
Sometimes soda works too - fizzy stuff. Since I need salt the salty bicarbonate stuff is great for me! I keep those around. I use the Italian types - the lemon fizzy stuff... brioschi or something like that.
Sometimes soda works too - fizzy stuff. Since I need salt the salty bicarbonate stuff is great for me! I keep those around. I use the Italian types - the lemon fizzy stuff... brioschi or something like that.
I've only had the one surgery...so far. I'm really not looking forward to the possibility of another.
My hubby and I have been talking for most of today and he's been doing his own research on the whole subject and as much as he doesn't want me to have another surgery thinks it would probably be best for us to discuss removing the mass with my surgeon or asking for a referral to one of the endoscopic neurosurgeons in his group.
On another note...today is a bad day. The nausea is so unbelievably bad today. The headache has been this dull, achy throb since I woke up. And the fatigue is pretty wretched. I may have to take a nap shortly.
My hubby and I have been talking for most of today and he's been doing his own research on the whole subject and as much as he doesn't want me to have another surgery thinks it would probably be best for us to discuss removing the mass with my surgeon or asking for a referral to one of the endoscopic neurosurgeons in his group.
On another note...today is a bad day. The nausea is so unbelievably bad today. The headache has been this dull, achy throb since I woke up. And the fatigue is pretty wretched. I may have to take a nap shortly.
As far as I know, shunts are used for CSF pressure issues and stuff like that - not a mass...
Yeah, I would not really want one, but given the headaches a leak would give, maybe a shunt would be preferable to constant pain...
I have had 12 surgeries - I had one doc tell me I was *surgery seeking* - I was like WTF! They were tumors and diseased parts, not plastic surgery!
Yeah, I would not really want one, but given the headaches a leak would give, maybe a shunt would be preferable to constant pain...
I have had 12 surgeries - I had one doc tell me I was *surgery seeking* - I was like WTF! They were tumors and diseased parts, not plastic surgery!
I hope it's something other than a VP shunt. One surgeon mentioned that and I've been slightly freaked out since.
I absolutely do not want hardware. I've seen too many people come back with infections and problems, and it's just my absolute last choice I would die without it type option.
I don't want another brain surgery, but if removing it will fix me...I will go back under that knife.
I absolutely do not want hardware. I've seen too many people come back with infections and problems, and it's just my absolute last choice I would die without it type option.
I don't want another brain surgery, but if removing it will fix me...I will go back under that knife.
When I looked it up for others, it was surgery. They can use an endoscope though. Hopefully they will yank it out soon.
With this being a teaching hospital I'm not sure. If I get who I think I'll get as far as residents go I'll be fine. He has amazing hands and is an amazing surgeon. He also happens to specialize in skull based surgeries and problems.
One of my nurses that I work with pointed out to me yesterday that I seem to be suffering from aphasia...so I suppose I can add that to my list of issues.
This s*cks.
What treatments are their for pineal masses? I'm not even sure if it's a cyst or a tumor. They never checked. Just kept saying mass.
One of my nurses that I work with pointed out to me yesterday that I seem to be suffering from aphasia...so I suppose I can add that to my list of issues.
This s*cks.
What treatments are their for pineal masses? I'm not even sure if it's a cyst or a tumor. They never checked. Just kept saying mass.
Ask - and don't allow the newbie - they can observe but not touch. You are allowed to say that, aren't you?
My last LP wasn't awful. I had a dr who had been doing them for 15 years and she was AMAZING! I hope I have her again. So fingers crossed for that. It was nothing more than a lot of pressure on my spine. With my luck I'll get when of the resident neurosurgeons who has no idea what the hell he's doing. That'd be a big boo.
Your husband should get the doctor to clarify what exactly he should look for - as there can be a lot of... degrees and well, people get normally confused and heck when I don't get sleep (right now the pain issue is messing with my sleep schedule) my brain goes to mush.
So I would bring it up, and ask - with being able to read and comprehend, I would guess (pure guess) you are still ok, but best to ask. How confusing is that!
That is one test I have not had *fingers crossed* and don't want... so I can totally relate on the not fun tests... Hang in there and I hope you get the MRI - noise is better than big needles!
So I would bring it up, and ask - with being able to read and comprehend, I would guess (pure guess) you are still ok, but best to ask. How confusing is that!
That is one test I have not had *fingers crossed* and don't want... so I can totally relate on the not fun tests... Hang in there and I hope you get the MRI - noise is better than big needles!
After more talking my surgeon decided on both an lp and two mri's. One of the brain and one of the cervical spine.
I guess now it's just waiting until the appointments and seeing what the results show.
I guess now it's just waiting until the appointments and seeing what the results show.
So I heard back from my surgeons office. I either have to have another LP done or an MRI. The PA (the one I communicate with the most) has to talk with my doc and get back to me with his final decision. Big boo to the LP. I HATED getting it done the first time.
The insomnia is definitely messing with me.
I've apparently developed a new symptom I wasn't even aware of. Every night I read to my boys before bed. The past few nights my husband has noticed that I pause while reading or I repeat what I'm reading as though I'm having problems understanding it. Which is very unlike me. I have absolutely no issues with reading and understanding things. I know confusion is one of the symptoms my neuro friend (he's a skull based surgeon) told me to watch out for...would that be considered confusion? I'm confused on what he means by confusion. lol
I've apparently developed a new symptom I wasn't even aware of. Every night I read to my boys before bed. The past few nights my husband has noticed that I pause while reading or I repeat what I'm reading as though I'm having problems understanding it. Which is very unlike me. I have absolutely no issues with reading and understanding things. I know confusion is one of the symptoms my neuro friend (he's a skull based surgeon) told me to watch out for...would that be considered confusion? I'm confused on what he means by confusion. lol
Duh.... OMG sorry - I cannot read lately... yeah that is larger and can push things around.
Keep us posted. Nothing like no sleep to mess your head too.
Keep us posted. Nothing like no sleep to mess your head too.
Not mm...CM. It's 2.9 cm x 3.6 cm.
The neuro group I'm with actually has a bunch of neuro-endo surgeons in it. I'm not sure about the optho though. I'm just waiting for my usual neurosurgeon to set up an appointment with me so we can decide what to do. (He's also chief of the department so I figured he'd be able to send me to the right person if he doesn't want to do anything about it)
The neuro group I'm with actually has a bunch of neuro-endo surgeons in it. I'm not sure about the optho though. I'm just waiting for my usual neurosurgeon to set up an appointment with me so we can decide what to do. (He's also chief of the department so I figured he'd be able to send me to the right person if he doesn't want to do anything about it)
The pineal mass could certainly cause the nasty insomnia.
I am not sure though that 3mm could cause a chiari... but I am only a layman. I would also contact Dr P - he is only a short drive from you and he certainly does surgery in those areas (aka skull base) and has tons of experience.
I also suggest you find a neuro-endo and a neuro-optho to get some testing - you want to see if it is doing anything on the optic nerves or whatever...
I am not sure though that 3mm could cause a chiari... but I am only a layman. I would also contact Dr P - he is only a short drive from you and he certainly does surgery in those areas (aka skull base) and has tons of experience.
I also suggest you find a neuro-endo and a neuro-optho to get some testing - you want to see if it is doing anything on the optic nerves or whatever...
The group of surgeons at my hospital do pretty much everything with the brain. My specific surgeon doesn't deal with skull based surgeries, but I do know one who does.
I did contact the office now I'm just waiting for a call back to see what the next step is. When talking with my friend, a neuro who primarily does skull based surgeries, he told me to get another scan done to see if it has grown. He did mention that the mass could have possibly caused the Chiari. I didn't even know that was possible.
I think either way I'll see if I can meet with the 2nd surgeon to see what he suggests.
I have had some nasty insomnia. I sleep maybe 3-4 hours a night and I'm just exhausted. It's all so frustrating.
I did contact the office now I'm just waiting for a call back to see what the next step is. When talking with my friend, a neuro who primarily does skull based surgeries, he told me to get another scan done to see if it has grown. He did mention that the mass could have possibly caused the Chiari. I didn't even know that was possible.
I think either way I'll see if I can meet with the 2nd surgeon to see what he suggests.
I have had some nasty insomnia. I sleep maybe 3-4 hours a night and I'm just exhausted. It's all so frustrating.
Most of the people posting here have much smaller lesions on their pineal gland.
I am guessing you went to a special place for chiari and they don't do pineal glands? I would send your films off, after contacting the office, to the expert here - and get an opinion (he does not charge, or was not) and he may know someone near you. Of course I did travel for my surgery so I always say it is a good idea to get the best surgeon possible no matter what.
Have you had any testing lately? And can you get a zofran or phenergan from your PCP so you can stop the vomiting? Mostly I know it can effect sleep so how is that?
I am guessing you went to a special place for chiari and they don't do pineal glands? I would send your films off, after contacting the office, to the expert here - and get an opinion (he does not charge, or was not) and he may know someone near you. Of course I did travel for my surgery so I always say it is a good idea to get the best surgeon possible no matter what.
Have you had any testing lately? And can you get a zofran or phenergan from your PCP so you can stop the vomiting? Mostly I know it can effect sleep so how is that?
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