Unexpected medical adventure

[TooPatient]

Pulling this out of random comments as it has become more than just a pssinpa thing... I wish it was!

I started losing vision in one eye Friday. Saturday was pretty bad so I saw an optometrist. No physical damage so he referred to a neurological opthalmologist. By Sunday morning, my vision was very severely impacted so DH took me to the emergency room. MRI of my brain showed three lesions on my brain. I was transferred to a specialty hospital to continue testing and treatment.

This morning, I have almost no vision in my eye. Not even shapes or colors. That isn't what they would expect with the lesions so they are looking for what is causing it. Looks like a neurological opthalmologist visit is on schedule for the day.

My full body CT scan was mostly clear but there is something on my liver. Another team is working to asses that.

Neurosurgery is bringing oncology in due to the appearance of the lesions and my family history. They may need to do a biopsy of my brain as early as tomorrow. With the location of the lesions, that would be a nickel sized hole cut in the back of my head if they do a needle biopsy. Otherwise a larger hole if they remove then biopsy.

All three are small. The largest is under 1 cm. Two smaller are on one side of the back of my brain and the larger is on the other.


Any advice, things to watch for, recovery after brain surgery, etc very welcome and appreciated.

 

[missy]

Too Patient I’m so sorry. I’m keeping you in my thoughts and prayers and sending bucketloads of good luck dust and healing vibes your way. We are here for you in any way we can be. (((Hugs))) and love to you.

 

[AGBF]

Darling TooPatient,

I have no experience (except that I have had the scans of my brain, as has my daughter), so you have already had everything with which I have had personal experience. All I can share from here on in is empathy and research if you should want us to do any for you. (As I am not a scientist, my research would probably not be the most sophisticated, but once you get a diagnosis, I will definitely dig in and do my best!)

Please know we will be here for you as you go through this and that we will be willing to do what we can. You are such a wonderful member of our community. And of our dogs' community, too! They need your advice!!!

Love and hugs,
Deb

 

[YadaYadaYada]

I'm so sorry to hear about this TooPatient. I lost the central vision in my left eye when I was pregnant (retinal vein occlusion) they *think* mine was caused by a clot but they were never able to determine the exact cause. The ophthalmologist was able to see this during an exam.

I don't have anything helpful to add except that I send you good thoughts and maybe the vision loss isn't permanent.

 

[redwood66]

@TooPatient I don't have any advice but I have plenty of hugs, prayers, and love to give to you. ((Hugs))
Red

 

[Puppmom]

Toopatient, no advice or experience but wanted to send some positive energy your way’

 

[junebug17]

TP, no advice but I just wanted to offer lots of support and love. I hope the vision loss is diagnosed soon and that it's not permanent. Really sorry you are dealing with all these health issues, (((HUGS)))

 

[mary poppins]

Sorry to hear you are having health issues, TooPatient. I don't have any advice or knowledge about your circumstances, but I am sending lost of PS dust for quick diagnoses and complete recovery. Don't hesitate to let us know if there's anything we can do to help.

 

[december-fire]

It can be shocking, scary and surreal to find oneself in a serious health situation.
At this point, there are questions concerning what's going on.
However, you have experts working to figure things out.
Once you have a diagnosis, it will be possible for the professionals to determine options and discuss next steps with you.

Thank goodness you went to the ER.
The lesions have been found, and you said they're all small.

As scary as this must be, try to take things one step at a time and keep in mind that amazing things are now possible in the field of medicine.
By no means do I wish to imply that this isn't serious, and I really wish you weren't dealing with this terrible situation.
Just try to have faith in the professionals doing their job.

Sending hugs, prayers and comforting thoughts.

 

[Gabbycat]

I have nothing to tell you by way of medical knowledge, but just wanted to add my well wishes. This must be so frightening for you, but it's amazing how strong we can be when we have to be. Just keep putting one foot in front of the other and take it one step at a time.

 

[Arcadian]

Around 2009 they found a couple of tumors on my mother's brain. Not much they can do about it (can't be removed) so they watch it closely. When she was first diagnosed it did cause vision issues and she had a minor stroke. Its the reason why she was put in the hospital in the first place.

She didn't have anything liver wise but she's got other organ problems.

Healthwise my mom has Lupus, which can be nasty indeed. She had already been diagnosed many years when this all happened.

The only thing I can say is have them check for autoimmune disease, and if not already done, meningitis.

Otherwise, I'm coming up pretty empty as I'm not a medical professional.

You have my love and my prayers. I'm so sorry this is happening to you.

 

[lyra]

I'm so sorry! My daughter has one permanent lesion on her brain from a small stroke she had in her early 20's. She was diagnosed with a blood clotting disorder and has since had to stop any sort of hormonal birth control, as that seemed to be what triggered it.

I hope you will get a diagnosis and treatment plan soon. It is so hard not knowing what's going on. Take care. Wishing you all the best.

 

[tyty333]

Oh no Too_Patient...I'm so sorry you are having issues. I really have no advice but am thinking about you and what you're going through. Hoping they
can get to the bottom of it and that its no big deal. Sending {{{Hugs}}}...keep us posted.

 

[Tekate]

@TooPatient sending good vibes your way. @cflutist as you may remember had brain surgery 2 years ago I think (maybe more maybe less, age ) Now let me tell you about my not kidney cancer.

In 2000 I had a huge problem gastro wise, they sent me for an ultrasound of the upper stomach area.. the ultra sound came back with a reading from the radiologist saying things like: neoplasm, hurry, .8 cm lesion, don't lose to followup , irregular...etc. now the thing was, that I had gone to the doctor about this problem 4 months earlier and he sent me for this US and 4 months later I went back to him for this continuing gastro problem this is when MY doc finally read the radiologist report - in front of me - he freaked, so I sort of freaked (my mom had died 4 months earlier and I was deep into crazy assed grief)... so then I went get a CT scan, then I had to go to a urologist then he sent me to the hematologist/cancer doc.. both the urologist and the hematologist didn't want to do a biopsy as they both were afraid of cells getting loose in my abdomen (cancer cells).. again I was just severely depressed, sad and scared of course, my sons were at the time 8 and 12.. so both physicians told me to continue to have CT scans every 3 months for a year nothing changed, I took the last pix to my urologist, he said he didn't think it was cancer anymore but FAT in my kidney, then I had an appt with the oncologist 2 days later and he just kept looking at the scans, so I said, "the urologist thinks it's fat in my kidney" he turned quickly and says "ME TOO!" I tell you this long story because you cannot go by the first readings second etc.. My sister in law was /is (she just retired last week) Vice Chairman of Cardiology at a top 10 medical school, when I got the first report she said to me: "Take your pictures Kate and walk, get as many second opinions as you can" It's easy for me to say it is probably nothing, but it has a good chance of not being anything really serious, I send you my most since caring loving vibes/dust/etcs.. Remember in the medicine world WE are our advocates, my opinion on physicians is fairly low these days. A hug and caring thoughts and a belief in you and your being strong. It's hard. all love. Kate

 

[Asscherhalo_lover]

I hope whatever it is is treatable and you regain your vision, I'm so glad you listened to your gut and went to the ER and that they are fast tracking everything. FX for treatable news soon.

 

[TooPatient]

@TooPatient sending good vibes your way. @cflutist as you may remember had brain surgery 2 years ago I think (maybe more maybe less, age ) Now let me tell you about my not kidney cancer.

In 2000 I had a huge problem gastro wise, they sent me for an ultrasound of the upper stomach area.. the ultra sound came back with a reading from the radiologist saying things like: neoplasm, hurry, .8 cm lesion, don't lose to followup , irregular...etc. now the thing was, that I had gone to the doctor about this problem 4 months earlier and he sent me for this US and 4 months later I went back to him for this continuing gastro problem this is when MY doc finally read the radiologist report - in front of me - he freaked, so I sort of freaked (my mom had died 4 months earlier and I was deep into crazy assed grief)... so then I went get a CT scan, then I had to go to a urologist then he sent me to the hematologist/cancer doc.. both the urologist and the hematologist didn't want to do a biopsy as they both were afraid of cells getting loose in my abdomen (cancer cells).. again I was just severely depressed, sad and scared of course, my sons were at the time 8 and 12.. so both physicians told me to continue to have CT scans every 3 months for a year nothing changed, I took the last pix to my urologist, he said he didn't think it was cancer anymore but FAT in my kidney, then I had an appt with the oncologist 2 days later and he just kept looking at the scans, so I said, "the urologist thinks it's fat in my kidney" he turned quickly and says "ME TOO!" I tell you this long story because you cannot go by the first readings second etc.. My sister in law was /is (she just retired last week) Vice Chairman of Cardiology at a top 10 medical school, when I got the first report she said to me: "Take your pictures Kate and walk, get as many second opinions as you can" It's easy for me to say it is probably nothing, but it has a good chance of not being anything really serious, I send you my most since caring loving vibes/dust/etcs.. Remember in the medicine world WE are our advocates, my opinion on physicians is fairly low these days. A hug and caring thoughts and a belief in you and your being strong. It's hard. all love. Kate

Thank you. Definitely good to remember. I'm going to ask about follow up scans and reach out to another cancer center for advice too.

 

[ksinger]

I can't speak the the location issue that is causing them to want to biopsy - and location is very important - but has anyone suggested MS to you? Optic neuritis with brain lesions is a pretty classic presentation of MS. And are they lesions or masses?

I know this though, a brain biopsy is not what I'd be all good with right out of the chute unless they really are sure that it's going to tell them something. Buck up a bit until you're totally OK that cutting is the proper course. Make them justify it to you, because too often docs like to cut when a more conservative approach is better. And I can't see any way it would help the eye issue. Has the neuro opthalmologist said what he/she is seeing when he looks in your eye? Optic neuritis should be pretty easy to determine.

I'll be thinking of you and hoping for the best.

 

[TooPatient]

I can't speak the the location issue that is causing them to want to biopsy - and location is very important - but has anyone suggested MS to you? Optic neuritis with brain lesions is a pretty classic presentation of MS. And are they lesions or masses?

I know this though, a brain biopsy is not what I'd be all good with right out of the chute unless they really are sure that it's going to tell them something. Buck up a bit until you're totally OK that cutting is the proper course. Make them justify it to you, because too often docs like to cut when a more conservative approach is better. And I can't see any way it would help the eye issue. Has the neuro opthalmologist said what he/she is seeing when he looks in your eye? Optic neuritis should be pretty easy to determine.

I'll be thinking of you and hoping for the best.

MS was talked about. I need to ask about it again as it hasn't been talked about since yesterday. The location is in the very back. One is up near the optical something.

I haven't seen the neurological opthalmologist yet. Still waiting on that.

 

[azstonie]

Okay. Deep breath you're on way to getting a handle on this.

having said this:

First thing to establish is whether or not this is metatases from another location (the primary). Livers frequently have all kindsa stuff on them: Nodules, cysts, etc. that are basically benign. So "something" on the liver is not something to pull the panic cord for although you would want to determine what "something" is or is not right now. Start with specific imaging first, its noninvasive. Liver biopsies are a procedure, that would be done after quality imaging of the liver.

The comment re MS is good, you would want an MS-specialist/neurologist on that question.

Regarding the diff between a biopsy of one of the lesions on your brain or a removal: IF THIS IS NOT EMERGENT, don't do a gross removal UNTIL YOU ARE AT A CENTER OF EXCELLENCE FOR NEUROSURGERY. Gross removals can result in death, paralysis, brain damage, etc., so you want The A Team doing this, people who do this every day with the top-notch equipment to do it with (my good friend was just diagnosed with glioblastoma and had a biopsy done (mistake) at a small hospital in Idaho (mistake) which lacks the proper equipment to do this biopsy and also lacks The A Team). I do not know where you are located but in the case of my friend in northern Idaho, his A Team Options are UWashington or Fred Hutchinson Cancer Center.

Your brain runs everything; you want the very very best neurosurgeon and equipment if a biopsy or gross removal are done.

Pulling for you, TP.

 

[TooPatient]

Okay. Deep breath you're on way to getting a handle on this.

having said this:

First thing to establish is whether or not this is metatases from another location (the primary). Livers frequently have all kindsa stuff on them: Nodules, cysts, etc. that are basically benign. So "something" on the liver is not something to pull the panic cord for although you would want to determine what "something" is or is not right now. Start with specific imaging first, its noninvasive. Liver biopsies are a procedure, that would be done after quality imaging of the liver.

The comment re MS is good, you would want an MS-specialist/neurologist on that question.

Regarding the diff between a biopsy of one of the lesions on your brain or a removal: IF THIS IS NOT EMERGENT, don't do a gross removal UNTIL YOU ARE AT A CENTER OF EXCELLENCE FOR NEUROSURGERY. Gross removals can result in death, paralysis, brain damage, etc., so you want The A Team doing this, people who do this every day with the top-notch equipment to do it with (my good friend was just diagnosed with glioblastoma and had a biopsy done (mistake) at a small hospital in Idaho (mistake) which lacks the proper equipment to do this biopsy and also lacks The A Team). I do not know where you are located but in the case of my friend in northern Idaho, his A Team Options are UWashington or Fred Hutchinson Cancer Center.

Your brain runs everything; you want the very very best neurosurgeon and equipment if a biopsy or gross removal are done.

Pulling for you, TP.

I'm in the Seattle area so blessed to have the full A-team here. I'm at one of the top neurological centers in the area (and world) so am glad for that.

 

[azstonie]

I talked to a neurosurgeon at UW after my friend in ID was diagnosed with a glioblastoma after imaging at a visit to the ER. One thing he did mention to me is that friends/family of neurologists do NOT get yearly dental x-rays (or any other imaging of their heads unless a serious reason presents itself). He has been a neurologist for 30+ years and he feels there is an increase in tumors due to constant dental x-raying. I no longer allow my dentist to get imaging on a yearly basis ("But your insurance will cover it!").

This is from WebMD Archives:

Dental X-rays Linked to Brain Tumors

Annual X-rays May Expose Patients to Unnecessary Risk

By Salynn Boyles
This article is from the WebMD News Archive
This content has not been reviewed within the past year and may not represent WebMD's most up-to-date information.

To find the most current information, please enter your topic of interest into our search box.

FROM THE WEBMD ARCHIVES
April 10, 2012 -- Getting frequent dental X-rays appears to increase the risk for a commonly diagnosed brain tumor, a new study finds.

Exposure to ionizing radiation -- the kind found in X-rays -- is the biggest known environmental risk factor for largely non-malignant meningiomabrain tumors. Routine dental X-rays are among the most common sources of radiation for most healthy people in the U.S.

The new study suggests that performing frequent X-rays may expose patients to unnecessary risk.

"These findings should not prevent anyone from going to the dentist," says lead researcher and neurosurgeon Elizabeth B. Claus, MD, PhD, of Yale University School of Medicine and Boston's Brigham and Women's Hospital. "But it appears that a large percentage of patients receive annual X-rays instead of every two to three years, which is the recommendation for healthy adults."

Dental X-ray, Benign Brain Tumors
While the vast majority of meningiomas are non-malignant, they often grow to be very large and can cause a wide range of potentially serious symptoms, including vision and hearing loss, frequent headaches, memory loss, and even seizures.

They are the most frequently diagnosed brain tumors among adults in the United States, accounting for about a third of all primary brain and central nervous system tumors.
***************************************************************************

Another Viewpoint:

"The level of radiation used in a typical dental x-ray is extremely low. A full-mouth series of radiographs – which involves 18 separate pictures of the teeth – exposes an individual to roughly the same radiation risk as a plane passenger would absorb during a cross-country flight. At such levels, radiation is thought to have little or no effect on the risk for cancer.

Some studies have purported to show a link between dental x-rays and thyroid cancer and certain forms of brain cancer such as gliomas and meningiomas, but the results of such studies have been questioned because of a problem known as “recall bias.” Instead of showing a direct, physical connection between x-rays and cancer, these studies have relied on patients’ recollection of how many radiographs they’ve had during their lifetime.

Today, dental patients are exposed to even lower levels of radiation than in the past, as a result of digital x-ray technology, more precise radiation beams, and the addition of collars to x-ray shields placed over patients’ chests. When considering a dental x-ray, it’s important for patients to weigh the potential benefits – early and accurate diagnosis of oral and dental diseases – against the very minimal risks, says Jennifer Frustino, DDS, PhD, an oral medicine expert with Dana-Farber/Brigham and Women’s Cancer Center."

******************************************************

Cumulative exposure to radiation. That is what neurologists are concerned about here. If I don't have a toothache, I don't want risk and for some toothaches I want action taken so no need for imaging any way.

My friend in Neurology who first mentioned dental imaging and tumors to me, he was noticing it in his practice over time. Many more patients with brain tumors than he 'should' have been seeing.

 

[azstonie]

TP, excellent!!! You are indeed in a fabulous location considering the data you need to gather to make your best risk management decisions. I am so relieved to hear this.

 

[TooPatient]

Just talked with the internal medicine doctor. She wants to do a spinal draw (forget name) to check for MS before looking at other more invasive tests. The location and my age suggest more MS than cancer.

My liver looks to be a bloody benign thing that is common in women my age. They say not likely to be cancer.

 

[MaisOuiMadame]

Toopatient, I'm so sorry you are going through this! Buckets and buckets of dust, healing vibes and hugs and prayers across the pond.

 

[azstonie]

TP, if you undergo a spinal procedure ("draw" or "tap") ask that the Interventional Radiologist who does it (or the neurologist/tech who does it) have a blood patch at the ready in case you are one of the people who get a medication-refractory migraine after the procedure. Blood patch sounds scary but its really not and it'll save you from a couple days of incapacity and the worst headache of your life.

 

[missy]

My liver looks to be a bloody benign thing that is common in women my age. They say not likely to be cancer.

That is good news TP.

Here's some info you might find helpful.

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274


Good luck on your spinal tap TP.
(((Hugs))).

 

[Jambalaya]

Hi TooPatient, I am SO sorry that you're going through this. It must be really scary.

Hang tight. This too shall pass.

Lots and lots of hugs and best wishes J xxxxxxxx

 

[ksinger]

Yes, what azstonie said - a MS-specializing neurologist is critical, as is the advice to be sure you are getting an A-Team if it comes to cutting. MS is usually quite difficult to diagnose, and the number of neurologists who know very little about it, (only what they got in school) is very high. Finding ones who really know and can properly apply the MacDonald Criteria (which has just changed in fact, last October) can be a trick.

I'm going to guess and put you right in the sweet spot for MS: late 20s-40, female, fair-skinned, European or Northern European descent, presenting with optic neuritis and a lesion on or near the optic nerve. Unless there is some doctor there who knows something definitive that knocks MS off the table, they should be considering MS very seriously and doing the series of tests for it, before they cut you open. Seriously, all the talk of surgery seems very premature to me.

Oh, and another thing. If it turns out to be optic neuritis, they will probably give you high doses of IV steroids to shorten the course, and perhaps reduce the damage to the optic nerve.

I didn't have ON, I presented with half my body suddenly not working right: couldn't walk without help, couldn't write, had a tremor. Thought I was having a stroke. But I understand quite well the stress of what you're going through right now. Having them tell you you have lesions in your brain is pretty freaky, and don't I know it.

Azstonie, I'm not sure a blood patch at the ready helps, since the headache usually doesn't show up until you're back home. They had me lie flat on my back for 4 HOURS after the lumbar puncture. It was massively boring but I ended up without any "leaks" at least.

And yeah, just put the skids on any suggestion that the LP be done in the clinic, instead of a surgical setting with x-rays. And be absolutely SURE they take a blood sample at the same time they do the LP!!!! I know you are at a place that is good, but you knowing what they are supposed to be doing will help you in case someone starts forgetting something. If they are wheeling you out to go have the LP, and no one has punctured you for a blood sample, demand to know why not! The blood sample will be needed to compare to the cerebrospinal fluid they take. Otherwise it's a waste of time and stress.

Just read that the liver thing is benign. Excellent. One less thing to fret over.

 

[Ally T]

TP this all sounds very frightening & you must be going demented as I know I would. You have some fantastic advice on here & it sounds like the doctors know what they're doing. I have everything crossed for you that there is a simple explanation & positive treatment coming your way very soon. Lots of dust & gentle hugs to you x

 

[ksinger]

ADDED: clearly too much going on right now. Missed the part where they're wanting to do a LP. But the above advice still applies.

And I'm SO sorry you're having to go through this!