Just don't understand-Help

[LilStep]

I am going to try and explain what I am confused about, but if at times I don't seem to make sense, please bear with me.

Ok, I have been having terrible pains in my head the last 2 to 3 months. I have taken lyrica, Maxalt melt, and several other meds to headaches I can't even think of. Nothing really seems to help.

It started with a feeling of hotness in my brain that start in the front of my head and would travel to the back. Then I started to get very short blackouts. During the second month I started having pain in my head when I would bend over to pick something up. I was almost like I could feel my brain expanding. i guess the inflamation.

Ok, fast forward to now. I saw my neuro last week and after explaining all my symptoms, she immediately believed that I was having a flair and that my drug of choice Copax was no longer working. She had me schedule an MRI to see if there was any new activity or lesions.

Well, I had the MRI and the results were good. No new lesions or activity was shown. Neuro said to stay on Copax.

Ok, so here is the weird part. I had brain surgery back in 2009. She said that what appears to be happening is that I am having simple partial seizures due to the surgery and I should take Gralise for my symptoms. My neurosurgeon never mentioned that I would develop seizures due to the surgery.

I just don't think that is what is happening. I believe something else is going on..more MS like. I don't know, this is just so confusing to me.

Oh by the way, I've been on Copax, Tysabri, Rebif, and back to Copax which I've been on for 1 1/2. I have multiple brain lesions (too many to count) and no spinal lesions.

If anyone out there can give me some insight to this, please respond.
Thanks - sorry for such a long post and I hope I made sense.

[hunterd]

I would say to trust your dr's opinion. You can always schedule an appt for a second opinion. Not everything is caused by ms, so have differeent sx checked out.

[MarkLavelle]

Ok, so here is the weird part. I had brain surgery back in 2009. She said that what appears to be happening is that I am having simple partial seizures due to the surgery and I should take Gralise for my symptoms. My neurosurgeon never mentioned that I would develop seizures due to the surgery.

I agree that this sounds weird (that's a long time post-surgery), but it isn't necessarily wrong...

Does your MRI report say anything about the part of your brain where you had the surgery? It's possible something new was noticed about your surgery site. Every time my brain gets scanned the report mentions my 1998 surgery, usually only to say that it looks normal for a post-resection site.

I think asking the neurosurgeon about your new sx and MRI might be a good idea.

[kingrex]

I am going to try and explain what I am confused about, but if at times I don't seem to make sense, please bear with me.

Ok, I have been having terrible pains in my head the last 2 to 3 months. I have taken lyrica, Maxalt melt, and several other meds to headaches I can't even think of. Nothing really seems to help.

It started with a feeling of hotness in my brain that start in the front of my head and would travel to the back. Then I started to get very short blackouts. During the second month I started having pain in my head when I would bend over to pick something up. I was almost like I could feel my brain expanding. i guess the inflamation.

Ok, fast forward to now. I saw my neuro last week and after explaining all my symptoms, she immediately believed that I was having a flair and that my drug of choice Copax was no longer working. She had me schedule an MRI to see if there was any new activity or lesions.

Well, I had the MRI and the results were good. No new lesions or activity was shown. Neuro said to stay on Copax.

Ok, so here is the weird part. I had brain surgery back in 2009. She said that what appears to be happening is that I am having simple partial seizures due to the surgery and I should take Gralise for my symptoms. My neurosurgeon never mentioned that I would develop seizures due to the surgery.

I just don't think that is what is happening. I believe something else is going on..more MS like. I don't know, this is just so confusing to me.

Oh by the way, I've been on Copax, Tysabri, Rebif, and back to Copax which I've been on for 1 1/2. I have multiple brain lesions (too many to count) and no spinal lesions.

If anyone out there can give me some insight to this, please respond.
Thanks - sorry for such a long post and I hope I made sense.

May I ask what kind of brain surgery you had? FWIW, seizures s/p brain surgery are common, and I'm curious why you doubt the neurologist's opinion.


rex

[LilStep]

Thanks for replies.
Mark, my MRI showed normal post resection site. Nothing abnormal indicated. I just think its weird that neurosurgeon didnt mention to me about the possibility of seizures occurring. I saw him a year after surgery and it wasn't even mentioned.

Rex, I had a menigioma removed.

[kingrex]

Thanks for replies.
Mark, my MRI showed normal post resection site. Nothing abnormal indicated. I just think its weird that neurosurgeon didnt mention to me about the possibility of seizures occurring. I saw him a year after surgery and it wasn't even mentioned.

Rex, I had a menigioma removed.

Surgeons don't generally discuss things which may not even happen. They're not the patient-friendly sorts, as opposed to your PCP who might be more concerned with your overall mental and physical well-being (although not all of them are, either). I had a quadruple bypass, and I've only spoken to the surgeon once since then, and that was 2 weeks after I went home from the hospital. There was never any discussion of possible post-op events (of which there were several). Surgeons are on to the next case pretty quickly, and they funnel all after-care to the clinical specialist, who for me was the cardiologist and for you, the neurologist.

Depending on the location, surgery for a meningioma can be traumatic to surrounding tissue, and seizures do indeed occur in some patients. I hope things improve for you.


rex

[MarkLavelle]

Surgeons don't generally discuss things which may not even happen. They're not the patient-friendly sorts, as opposed to your PCP who might be more concerned with your overall mental and physical well-being (although not all of them are, either).

That's so 'tactful' I actually laughed out loud!

I've yet to meet a surgeon who didn't have an oversize ego, but would you want a surgeon who was unsure of his skill? Fortunately, my brain surgeon was also surprisingly informative and easy to talk to.

[Sylvielynn]

headaches are a major thing with me and what you explained is exactly what I feel. Maxalt and all that crap doesnt touch it. I went to my nuero a week and a half ago and she thought flare up and I got IV steroids and MRI which like yours was good with no changes. The headaches remain. they seem to come and go I wont have one for a couple hours and then at times I get a stabbing, pressure, dull or just ache. Nothing helps the dr gave me percocet and that didnt even help. I think it is the MS.

[jfoster]

I was just recently put on Gralise for MS pain. I am still on titration but so far it has helped the pain so much. I am feeling better than I have in a long time. I hope this info helps!

[deb46]

My brother had the same type of brain surgery as you in 2010. Shortly afterward he started to have simple partial seizures. From what you describe you sound just like him. I am no doctor but that is what it sounds like to me.