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My neurosurgeon appointment
Saw the neurosurgeon today and he was awesome. He sat with my husband and I and showed us my MRI and explained what he was showing us.
He said he disagreed with the finding of hydrocephalus and he had had another doctor look at my MRI too and she was in agreement with him. He said that yes, my ventricles are larger than "normal", but maybe I was just born that way. He said there was no blockage and there was no way he was sticking a shunt in me. Such a relief!
He also said that my pressure was perfectly normal at 13 - it can be up to 20. Why the nurse told me I had high pressure I don't know.
I'm a little bit irked by the way this was handled by the original neurologist. She was very nice and I feel she was very thorough, but I feel like she should have set up an appointment or at least called me herself and explained to me exactly what she felt she was seeing instead of having her nurse call me, tell me I have enlarged ventricles and high pressure and need to see a neurosurgeon!! I'm wondering if that doctor even looked at the MRI herself or if she just looked at the report.
He pointed out the "bright spots" on the MRI and said something about them being "nonspecific" which means, essentially, that they don't know what they are, but they seem to be normal. To me it just looked like my brain had some highlighted areas. I asked him about MS and he said he didn't see anything in my test results to suggest that.
So, I didn't get any real answers, but it's such a relief to know that I won't need brain surgery.
He said he disagreed with the finding of hydrocephalus and he had had another doctor look at my MRI too and she was in agreement with him. He said that yes, my ventricles are larger than "normal", but maybe I was just born that way. He said there was no blockage and there was no way he was sticking a shunt in me. Such a relief!
He also said that my pressure was perfectly normal at 13 - it can be up to 20. Why the nurse told me I had high pressure I don't know.
I'm a little bit irked by the way this was handled by the original neurologist. She was very nice and I feel she was very thorough, but I feel like she should have set up an appointment or at least called me herself and explained to me exactly what she felt she was seeing instead of having her nurse call me, tell me I have enlarged ventricles and high pressure and need to see a neurosurgeon!! I'm wondering if that doctor even looked at the MRI herself or if she just looked at the report.
He pointed out the "bright spots" on the MRI and said something about them being "nonspecific" which means, essentially, that they don't know what they are, but they seem to be normal. To me it just looked like my brain had some highlighted areas. I asked him about MS and he said he didn't see anything in my test results to suggest that.
So, I didn't get any real answers, but it's such a relief to know that I won't need brain surgery.
I know, who CAN you trust?
I certainly agree about not panicking when you read your reports or look over your scans. At the same time, I believe in being an informed patient.
I'm not going to go in and insult anyone's intelligence (and years of training) by saying that I read online about such-and-such and because of that I believe they're wrong. Yet we're all human and do make mistakes, including doctors and Radiologists.
I believe that there is nothing wrong with asking questions. Blindly accepting what they say can be detrimental to your health. I have a dear friend whose husband recently passed away with bile duct cancer who can attest to that.
By reviewing my own records, I discovered that my first MRI did show a sizeable lesion and was NOT normal as my neuro had stated. Then, my second neuro found another lesion. I also discovered another patient's information had been entered into my record (they apologized profusely and changed it).
Do I have MS? I don't know. But I know something isn't right, and had I simply accepted what my first neuro had told me, I would just be suffering through these symptoms thinking it was because of lack of sleep (which, by the way, no sleep study recommended) and carpal tunnel (which was later ruled out and determined to be neurological).
Wow...23 vials and nothing but a juice box???! What a rip-off! ;)
Sorry to hijack, GrannyKay and hope you are doing well and have a great weekend!
Hugs,
Minnie
I certainly agree about not panicking when you read your reports or look over your scans. At the same time, I believe in being an informed patient.
I'm not going to go in and insult anyone's intelligence (and years of training) by saying that I read online about such-and-such and because of that I believe they're wrong. Yet we're all human and do make mistakes, including doctors and Radiologists.
I believe that there is nothing wrong with asking questions. Blindly accepting what they say can be detrimental to your health. I have a dear friend whose husband recently passed away with bile duct cancer who can attest to that.
By reviewing my own records, I discovered that my first MRI did show a sizeable lesion and was NOT normal as my neuro had stated. Then, my second neuro found another lesion. I also discovered another patient's information had been entered into my record (they apologized profusely and changed it).
Do I have MS? I don't know. But I know something isn't right, and had I simply accepted what my first neuro had told me, I would just be suffering through these symptoms thinking it was because of lack of sleep (which, by the way, no sleep study recommended) and carpal tunnel (which was later ruled out and determined to be neurological).
Wow...23 vials and nothing but a juice box???! What a rip-off! ;)
Sorry to hijack, GrannyKay and hope you are doing well and have a great weekend!
Hugs,
Minnie
I know, right? Alas all I got was a juice box and a very sore arm!
I've learned a lot here about looking over my own images/reports. For example, two days ago my neuro was looking back over my MRI at some "non specific" lesions and commented how they can't matter (no pun intended) since the largest is not even 1 mm. But I'm looking at the actual radiology report where it says the largest is 4 mm. Who can a gal trust? ;)
I've learned a lot here about looking over my own images/reports. For example, two days ago my neuro was looking back over my MRI at some "non specific" lesions and commented how they can't matter (no pun intended) since the largest is not even 1 mm. But I'm looking at the actual radiology report where it says the largest is 4 mm. Who can a gal trust? ;)
Always happy to read good news like yours, Gran.
Sierra: 23 vials!!??!! I hope they gave you a sandwich and chips with that! ;-)
And Minnie, no secrets here! I look at every slide! I've learned a lot, but mostly here!
Twopack's usually right; no point in worrying about the "what-ifs" and "might, maybes." Once again, "Sufficient for the day is its' own trouble."
Sierra: 23 vials!!??!! I hope they gave you a sandwich and chips with that! ;-)
And Minnie, no secrets here! I look at every slide! I've learned a lot, but mostly here!
Twopack's usually right; no point in worrying about the "what-ifs" and "might, maybes." Once again, "Sufficient for the day is its' own trouble."
hiya, I will thankyou, see him Tuesday so hopefully I have good news, any news right now will be good
Hi, I am very glad you don't have to have surgery! I'm also glad the nneurosurgeon was awesome :D
I understand about looking at your own MRIs. I do it and I'm sure there are some "secret lookers" out there. Heck, I know the reason I do it... I've gotten inaccurate information before and plus it seems like forever before you can get in to see your neurologist! ;)
Let's all celebrate your good news with our favorite desserts :) Yes, I agree Limbo is no fun, yet neither is surgery.
Hugs, Minnie
I understand about looking at your own MRIs. I do it and I'm sure there are some "secret lookers" out there. Heck, I know the reason I do it... I've gotten inaccurate information before and plus it seems like forever before you can get in to see your neurologist! ;)
Let's all celebrate your good news with our favorite desserts :) Yes, I agree Limbo is no fun, yet neither is surgery.
Hugs, Minnie
Just read the good news! So glad for you, GK!
Just finished a rabbit trail of my own today, as my neuro sent me to a rheumatologist. I explained to the rheumy how I was getting the opinion of a second neuro on Monday and she said she thought that was a good plan. (She found nothing to suggest anything rheumatology-related, though she did take 23 vials of blood anyway!)
She asked if it was okay that she put in the notes that I was planning on seeking a 2nd (neuro) opinion as my original neuro might read it -- I said, sure! Maybe it will get him to give me the time of day! LOL
Again, relieved for you...though being back in limbo isn't terribly comforting, I know. :)
Just finished a rabbit trail of my own today, as my neuro sent me to a rheumatologist. I explained to the rheumy how I was getting the opinion of a second neuro on Monday and she said she thought that was a good plan. (She found nothing to suggest anything rheumatology-related, though she did take 23 vials of blood anyway!)
She asked if it was okay that she put in the notes that I was planning on seeking a 2nd (neuro) opinion as my original neuro might read it -- I said, sure! Maybe it will get him to give me the time of day! LOL
Again, relieved for you...though being back in limbo isn't terribly comforting, I know. :)
Hi ess. I was wondering about that too - there are definitely several "bright" areas on the MRI, but what do I know? Nothing! Lol
I know my doctor sent the referral over to the MS specialist, but I have yet to hear from them. The neurologist knew about my requesting a second opinion and questioned me about it. I basically told him that her sending me to a surgeon freaked me out, so I wanted a second opinion. I'm wondering if I might have ruffled some feathers by asking for that referral before even seeing the neurosurgeon.
I will call them this afternoon and see what's going on. Maybe they are just waiting to see what the neurosurgeon said.
I know my doctor sent the referral over to the MS specialist, but I have yet to hear from them. The neurologist knew about my requesting a second opinion and questioned me about it. I basically told him that her sending me to a surgeon freaked me out, so I wanted a second opinion. I'm wondering if I might have ruffled some feathers by asking for that referral before even seeing the neurosurgeon.
I will call them this afternoon and see what's going on. Maybe they are just waiting to see what the neurosurgeon said.
I'm glad she recommended the surgeon too, Shell. He was so nice but the best part was that he said I didn't need surgery! lol
I'm hoping with you that you have a good neurologist appointment. Be sure to let us know how it goes.
I would have put money on this turning out to be a non-event. Good!
Non-specific brain lesions are not 'normal,' though. They could be a lot of things, some of which need no treatment. But it's up to a neuro who really knows MS, not a neurosurgeon, to decide whether they're part of MS. Possibly they are, and are just not 'classic' for MS, which happens a great deal. MRIs are only part of the diagnostic process. It's a clinical diagnosis that requires taking a lot of factors into consideration.
ess
Non-specific brain lesions are not 'normal,' though. They could be a lot of things, some of which need no treatment. But it's up to a neuro who really knows MS, not a neurosurgeon, to decide whether they're part of MS. Possibly they are, and are just not 'classic' for MS, which happens a great deal. MRIs are only part of the diagnostic process. It's a clinical diagnosis that requires taking a lot of factors into consideration.
ess
Excellent! You got some much needed relief. I'm so glad you went!
These neurosurgeons are on the ball. And, while the neuro said what she said w/out knowing what she was saying (what the heck is the matter w/ppl these days, ha) Glad she recommended the surgeon! Though I'd bet you would of went anyway smart lady!
have a nice weekend,
-shell
These neurosurgeons are on the ball. And, while the neuro said what she said w/out knowing what she was saying (what the heck is the matter w/ppl these days, ha) Glad she recommended the surgeon! Though I'd bet you would of went anyway smart lady!
have a nice weekend,
-shell
Hiya, so glad to hear you got a nice Doc,makes all the differance. Also what a relief for you that no surgery needed. I have my new neuro apt next Tuesday, heres hoping he is also nice and takes the time to explain or look into things.
Very happy for you :)
Very happy for you :)
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