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Meningioma in my Superior left parietal lobe-4 yr DX ann. Help!?
Good evening friends! Thanks in advance, for all of your support & info for me to consider, when it comes to my diagnosis of a Superior left parietal lobe meningioma (see MRI pic) & Cheiri malformation 1.
My backstory.....When I was 7 years old, I ended up getting diagnosed with viral meningitis for my first time. However, I was shockingly admitted into the hospital with viral meningitis repeatedly after that, an astonishing 13 additional times, over the past 41 years of my life. I was told, that I was born with the herpes simplex virus formed & laying dormant, in my cerebral spinal fluid. Whenever I would have a compromised immune system due to surgery, physical or mental stress or illness, that virus would activate and I would end up being admitted to the hospital, with viral meningitis again and again.
My question for the ones who have been diagnosed with a Meningioma, have you ever experienced the same, something similar to that or has a specific traumatic event or illness happen to you, to cause the Meningioma to start growing?
Is it typical, to be diagnosed with a cheiri malformation 1, if you have a Meningioma or is it just coincidental?
My neurosurgeon has & is opting for the wait and watch method, yet my tumor has grown from 1.2 CM & the Cheiri malformation, measuring at -4 mm under the foramen magnum, to my present tumor measurement of 1.9 CM & the Cheiri malformation is pushing down even further to -6 mm under the foramen magnum, how much bigger does it have to get for any type of treatment?! It seems to me, like the growth rate would be sufficient enough for some type of treatment option to help me with it but apparently my neurosurgeon doesn't agree, how rapidly and how big, would a Meningioma need to grow in order for it to be deemed sufficient enough for some type of treatment action??
I'm now experiencing an increased level of symptoms & I've been really suffering. Some examples include not feeling my extremities - causing falls, dropping items in my hands to not being able to feel my arms to catch myself, severe debilitating headaches, migraines, vision disturbances causing bouts of semi-blindness, extremely severe exhaustion and fatigue, where I can sleep literally 20+ hours a day, for months at a time without any type of relief or feelings of restedness. I'm often nauseous -can't eat normally, I also have extremely painful neuropathy as well.... my neurosurgeon doesn't want to discuss ANY of my symptoms that I've been feeling at all and says that I should talk to my neurologist about the symptoms instead. Her suggestion was to get Botox on top of my migraine meds. But no real answers either.
He also says that I should see an infectious disease Dr, to get started on an antibiotic & an antiviral medication, so that if I need brain surgery soon, that I will be able to stop the activation of the dormant viral meningitis when healing and I will live on. If I don't start those meds, even if surgery is 100%, he doesn't believe that I will live through it. Fine, makes sense, But then I asked him about how large does my meningioma have to grow yet to get surgery or something for treatment, he says to me- that depends on my symptoms - yet won't discuss my symptoms.... 😖 I'm getting so frustrated. I'm so tired of not being able to get anyone to proactively treat me so that I can kind of enjoy the time I have left to live or really what's the point?! (I'm not suicidal just frustrated)
Anyone have any ideas for me? I hope that I've explained this well enough. Let me know if you have any questions. Thanks again!
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Hello @missjacquelinep, and welcome to Mayo Connect. It sounds as if you have a rather complicated health issue. As you know, Mayo Connect, is a patient-to-patient network where we encourage and support each other in our health journeys. Therefore, we cannot offer medical advice.
As your situation seem complex and given your frustration with your current medical team it might be worthwhile to seek a second opinion from a multi-disciplinary health system such as a university medical school or a facility like Mayo.
Have you considered a second opinion to help clarify your treatment options?
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4 ReactionsGo for second opinion. And prepare questions for those people
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3 ReactionsHello @missjacquelinep. I'd like to add my welcome along with @hopeful33250. I am so sorry that you are feeling frustrated. I think it is completely understandable to want someone to speak directly to you when you have questions. For me, I think I would pursue other opinions and doctors until you feel you have someone you can trust with your care.
I wanted to include a link to some information that you may find helpful as it relates to learning about care models at other hospitals. There are two tabs, one for Symptoms and Causes and one for Diagnosis and Treatment. There is a video on each that you may find helpful.
- Brain Tumor: https://www.mayoclinic.org/diseases-conditions/brain-tumor/symptoms-causes/syc-20350084
Like @hopeful33250 mentioned, Mayo Clinic uses team-based care across departments and specialties so you don't just get one opinion, you get multiple. You can learn more about that here: https://www.mayoclinic.org/departments-centers
Do you feel you are interested in a second opinion elsewhere?
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5 ReactionsI am so sorry that you are going through this. I also had a meningioma and I got a second opinion and it was
worth it.. I had surgery about a month ago and the surgeons did a great job of removing it. I still get some side effects but I can deal with it. The side effects are not too bad. I went to Providence St. Vincents in Portland to get it done. I strongly recommend a second opinion. Good Luck,
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5 ReactionsHi. Welcome. Sorry we have to meet under these circumstances. I'm responding bc I share some history + current status. It helps ppl not feel so isolated to know there are others. I sleep a whole day - or more- except for for bedside teas and BR after I exert myself for a few hours of work, just standing in my feet. I have a meningioma plus Post COVID Syndrome. I drop many things. I have similar physical sensory+ strength problems but mine side from cervical stenosis. However, I had a childhood of hospitalizations bc of anaphylaxis and Epsten Barr virus. I was diagnosed with a meningioma while being evaluated post Covid for a possible stroke. This tumor was deemed not operable bc of location + risk. HOWEVER neurosurgeons determined my symptoms were not the result of this tumor, and watching it showed no activity. So I'm not receiving treatment.
I share your experience with doctors who don't deal with symptoms or have related conversations. I didn't like to hear your Dr delegated TO YOU to get viral treatment. IMO that was his job to arrange.
I encourage you in the strongest terms to get a TOP OF THE LINE 2nd opinion. Pick a top graded hospital and send your images after making contact. You can get a great surgical/tumor review+a phone quick report. No one but experienced top brain surgeons can give you an opinion. If you can, call a call a Mayo Clinic nearest to you. Or another top 10. This will likely weigh strongly in determining your outcome.
Also, my sanity was saved by the American Brain Tumor Association. They have experienced, certified licensed medical people to help you with information and coordination + decisions AT NO COST. 1.800.886.2282
They coordinate with top treatment centers and even help with travel arrangements if you need it
Whatever the causes of our tumors, they all require a customized treatment plan. They may be alike in composition, but the differences ( location, size, growth, symptoms, patient status + more) make all the difference.
You need prompt medical support bc you don't really have any that's sufficient. It's ready at your disposal. ABTA + any top hospital (Mayo, UCSF, Duke etc) is where you need to get your MRI images sent to ASAP. Some hospitals can log in to the original imaging faculty thru a computer sharing option. Let ABTA help you navigate all this. Mayo Clinic is the
Gold Standard in medical care but if you can't get there, there are many excellent hospitals which SPECIALIZE in primary brain tumor treatment. That's the key.
My hope is that you will find the strength and focus to just call the ABTA + connect with a top facility. The rest will fall into place. Just keep your priorities straight and your hopes up. Perhaps even an immediate medical intervention such as steroids will give you enough relief to stabilize. Just a thought as an example
A team of specialist as the Mayo,Duke,UCSF etc approach is needed to address all factors. It's not something for you to be expected to do on your own. So sorry you have been overview overburdened by a deficient Dr. I had one too initially. He almost broke my spirit by his unreasonable demandsc and lack of truly needed assistance. There are great services a phone call away.
Try not to fear or worry too much. You'll find from this board how much hope there is and how great it will be for you to connect with the medical help you need
Persevere. You can reach the daylight in this ordeal.
Blessings!
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2 ReactionsHi. Welcome. Sorry we have to meet under these circumstances. I'm responding bc I share some history + current status. It helps ppl not feel so isolated to know there are others. I sleep a whole day - or more- except for for bedside teas and BR after I exert myself for a few hours of work, just standing in my feet. I have a meningioma plus Post COVID Syndrome. I drop many things. I have similar physical sensory+ strength problems but mine is from cervical stenosis. However, I had a childhood of hospitalizations bc of anaphylaxis and Epsten Barr virus. I was diagnosed with a meningioma while being evaluated post Covid for a possible stroke. This tumor was deemed not operable bc of location + risk. HOWEVER neurosurgeons determined my symptoms were not the result of this tumor, and watching it showed no activity. So I'm not receiving treatment.
I share your experience with doctors who don't deal with symptoms or have related conversations. I didn't like to hear your Dr delegated TO YOU to get viral treatment. IMO that was his job to arrange.
I encourage you in the strongest terms to get a TOP OF THE LINE 2nd opinion. Pick a top graded hospital and send your images after making contact. You can get a great surgical/tumor review+a phone quick report. No one but experienced top brain surgeons can give you a trustworthy opinion. If you can, call a Mayo Clinic nearest to you. Or another top 10. This will likely weigh strongly in determining your outcome.
Also, my sanity was saved by the American Brain Tumor Association. They have experienced, certified licensed medical people to help you with information and coordination + decisions AT NO COST. 1.800.886.2282
They coordinate with top treatment centers and even help with travel arrangements if you need it
Whatever the causes of our tumors, they all require a customized treatment plan. They may be alike in composition, but the differences ( location, size, growth, symptoms, patient status + more) make all the difference.
You need prompt medical support bc you don't really have any that's sufficient. It's ready at your disposal. ABTA + any top hospital (Mayo, UCSF, Duke etc) is where you need to get your MRI images sent to ASAP. Some hospitals can log in to the original imaging faculty thru a computer sharing option. Let ABTA help you navigate all this. Mayo Clinic is the
Gold Standard in medical care but if you can't get there, there are many excellent hospitals which SPECIALIZE in primary brain tumor treatment. That's the key.
My hope is that you will find the strength and focus to just call the ABTA + connect with a top facility. The rest will fall into place. Just keep your priorities straight and your hopes up. Perhaps even an immediate medical intervention such as steroids will give you enough relief to stabilize. Just a thought, as an example, not a medical suggestion.
A TEAM of specialist as Mayo,Duke,UCSF etc as their approach is needed to address all factors. It's not something for you to be expected to do on your own. So sorry you have been overview overburdened by a deficient Dr. I had one too initially. He almost broke my spirit by his unreasonable demandsc and lack of truly needed assistance. There are great services a phone call away.
Try not to fear or worry too much. I understand the stress! I had no help at first too and was weak, alone + overwhelmed
You'll find from this board how much hope there is and how great it will be for you to connect with the medical help you need
Persevere. You can reach the daylight in this ordeal!!!! Go for it! ❤️🙏
Blessings!
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Like -
Helpful -
Hug
2 ReactionsI made a few typo corrections I noticed after I wrote a reply but accidentally posted twice. Can't find where to delete first one. Apologies.
I just saw your post and am so glad to hear how you are. You sound great. Please stay in touch here.