Left Frontal Lobe CCM with Hypertension

Discussions about the illness, treatments, doctors, etc.

Left Frontal Lobe CCM with Hypertension

Postby Breebers84 » Mon Sep 10, 2018 2:50 pm

Let me start off by introducing myself. My name is Bree and I'm a 33 year old female from Northern California. I have an extremely stressful job working for the State of California Tax Board in their call center. I'm having the worst experience of my life currently with care for my CCM. It's hard to know where to start but I'll start with my diagnosis and go from there. Please forgive me for the long story. I have familiarized myself with this websites and looked through the newly diagnosed section in case you experienced users are wondering.

I am patient through Kaiser Permanente and was diagnosed with hypertension 2 and a half years ago. Headaches can be tied to high blood pressure; I was experiencing them frequently. This past year they were the worst until the beginning of May when I felt like there was a turning point with my symptoms. I experienced extreme headaches on and off with tingling and numbness to the right side of my face, arm and leg.

On 05/07/18, I went to the emergency room to what the doctor diagnosed as probably a really bad migraine but they decided to a CT to check my brain, later they did an MRI. Well they found a bleed in my left frontal lobe with multiple Cavs in various locations of my brain. I stayed in the hospital for 3 days under observation. When discharged my bleed was stabilized. I was given a steroid to reduce swelling in the brain that they found as well as Norco for pain. I was told if I had any new symptoms to come to ER. So on 05/12/18, I experienced more intense tingling and numbness to my right side. I went to ER and they decide to prescribe Keppra and I was to see a neurologist to follow up.

I went to my appointment with the neurologist and he told me that it looked like I had a ring that showed my CCM had bled before, as well as having a familial case (My grandmother, mother and two of my sisters also have CCMs). He also informed me that he really didn't believe I was having seizures so he prescribed a drug called Topomax. I took the meds but was still having symptoms and started to experience insomnia even though the meds were supposed to make me sleepy.

Well eventually, I decided that I wanted to try the keppra so I stoped use of Topomax. Overall my symptoms improved but I was experiencing dizziness and a little bit of balance issues with sporadic headaches along with light sensitivity and eye pain. So doc want me to go back to Topomax which I do. I start having the same problems as before so he increased dosage. At this point I get extreme nausea and other symptoms are only slightly improved. He lowered the dosage.

Fast forward to 08/11/18, I have intense pain again like the first time I went to the hospital, so I go to ER. They find fresh blood and keep me 2 and a half days for observation again. I should of also mentioned during the course of all this my blood pressure has remained pretty high most of the time unless I'm doing low activities and resting. I'm extremely stressed and trying to cope with everything along with not feeling well from symptoms. I feel that the high blood pressure is contributing and making my symptoms worse which most of the medical staff agree with, telling me to eliminate stress as much as possible. I should also mention I have been off work since this point.

So they discharge me 08/13/18 with a stable bleed. The neurosurgeon recommends surgery because of the new blood and gives me 3 weeks to decide. My neurologist is on a leave of absence during all of this, so I email him when he gets back to let him know what happened and that I need additional time off work because I'm still having symptoms. Per ER, they advised me to return to work 08/20/18. The doctor does not respond to my email but has his office call to set up a phone appointment 08/27/18.

I have a follow up with my Primary Physician on 08/17/18. During the appointment they say they can't treat me because my blood pressure was high and I had a slight temperature so they have an ambulance take me to ER. While in ER my neurologist tells the ER doctor to increase my topomax again and prescribes another drug. At this point I don't feel like he's listening to me and I ended up scheduling an appointment for a second opinion. I'm discharged the same day after review of CT and no change to the bleed from 08/13.

The second neurologist was less helpful prescribing Effexor that causes high blood pressure and bleeding when those are some of my underlying issues. She extends my work note to decide on surgery and states that I can stop taking the Topomax. I review the side effects of Effexor and don't feel comfortable with the symptoms so I ask if she can prescribe another drug. She tells me that they are limited on what they can give and does not recommend another drug. At this point I'm not taking anything for my symptoms.

I reviewed the option for surgery but weigh the pros, cons, and risks. I feel like at this time I want to decline the surgery because I feel if I can get my blood pressure under control and take a different med for my symptoms (My mom, and two sisters have declined surgery and found stable meds and are doing well) then I can return to work. Also my symptoms increase because of various stress related reasons and not taking meds.

I email neuro to tell her of my decision. I ask for more time off work to find a medication that can help. She states that based off of her expertise, she thinks I'm okay and need to return to work. I should also mention that I commute to work and live 60 miles from my job. I haven't been driving or feeling comfortable to drive since I was diagnosed with CCMs. I feel that she is retaliating against me because I declined surgery and the meds that she prescribed. She's ignored all the symptoms that I have expressed. I feel like she doesn't believe me.

She advised me to reach out to my primary care physician for additional time off but when I do that the doctor responds and tells me that the same neurologist put in my chart that I refused all treatments/Meds/and recommended procedures. So my primary Dr. with not authorize a note based off of the nuero's expertise.

I feel like I am stuck under a rock in a hard place. I'm currently trying to find another neurologist but it is going to be difficult to get help with this negative note on my chart. I've never been an insubordinate but I know my body well. The doctors don't trust me, especially now even though I told my PD that what the nuero said is untrue and gave background of our conversations. She still will not move forward.

Has anyone else had this problem? Does anyone have any advice for me? I just want to get better and go back to work. Has anyone else had similar symptoms with hypertension and cav?

I'm extremely stressed and I'm still experiencing symptoms. I've been having increased pain and tingling on my right side especially my arm and even some in my left foot on the heel and it hurts when I walk. I'll experience weird nerve type pain in my right leg. Headaches are all over the place but mainly in the front on the left side. I've also been having pain on the upper part of the back of my head right above my neck close to my ears on both sides. It's a weird sensation, overall it feels like my neck hurts. Anyone have similar pain?

I apologize for the long post. I just didn't know who else to talk with. I see how helpful most of you are on here. I also wanted to post this, in case someone is going through something similar. Thank you so much in advanced for your opinions and advice.

Bree
Breebers84
 
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Joined: Thu Sep 06, 2018 3:52 pm

Re: Left Frontal Lobe CCM with Hypertension

Postby Elizabeth » Mon Sep 24, 2018 5:24 am

Welcome,

I'm sorry it took us so long to approve your post and for anyone to respond. I'm very sad to read your story and it sounds like you are advocating very well for yourself. I'm sorry you are encountering incompetent doctors...I know the feeling. When I first got dx I too had an HMO because I was never sick, never went to the doctor... But this dx changed that and as soon as I could switch to a ppo..I did. Its still hard finding good doctors but I encountered a few good ones along the way. First suggestion, lose kaiser as soon as you can...might have to wait til January unfortunately. Northern California...can you get to UCSF or Stanford? There are good doctors there. Finding a nice supportive primary MD or neurologist would be ideal so they can listen to your symptoms and try different medicines and things to bring down your blood pressure and manage symptoms. If you end up needing surgery, you want an expert surgeon not some kaiser hack. Sorry for my frankness. I'm not going to get my head cut open without major considerations and being sure I did my homework. I think your making a good choice based on what you said, but you might want to check with an expert or two to make sure. With multiples it changes things so being sure you're with a good doctor is key. Also, finding a doctor willing to give you a break from work while you figure it out would be great. This stuff is stressful enough, you don't need to stress about work and money too. Geez, I wish I could write the note.
Now, the otcs? Make sure you're not taking blood thinners. No advil, aleve, Excedrin, aspirin, etc. Take good care!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Left Frontal Lobe CCM with Hypertension

Postby Breebers84 » Wed Sep 26, 2018 12:43 am

Thank you so much for responding. No worries! Life happens, I understand. I just wasn't sure if what I posted was inappropriate! I hope things are better for you.

I had a feeling Kaiser was going to be a problem. I can check to see if they will approve me to see an out of network doctor but it's a process. I'm able to switch my insurance now, so I'm going to do that today.

I'm just worried because I've been having weakness and pain to my right leg and arm to the point where it's hard to pick heavier things up.. as well as walk sometimes. It happens sporadically throughout the day. It's a very weird sensation.

They didn't even check my spine or back of my neck. I feel a pain back there but I keep thinking that maybe I'm imagining things. It hard when I'm not feel well. I'm honestly scared to go to back to Kaiser.. They treated me completely unfairly, basically calling me a liar when I've told one of the doctors about my symptoms. I'm a very forthright person. This whole thing has put me in a bit of a depression.

I'm currently waiting for the grievance that I filed against the doctor to complete. I'm still not getting anything from Kaiser in the mean time. I can't fake a bleed on my brain. They saw it on CT and the MRI. That seems serious enough to me to allow someone to take off work. I can't work, it's impossible in my condition and I fear I'll get worse even if I go back to work.

I have family in the bay area but it makes it difficult if Kaiser won't allow me to see a specialist. I feel so helpless and frustrated.
Breebers84
 
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Re: Left Frontal Lobe CCM with Hypertension

Postby PattiG » Wed Sep 26, 2018 5:38 pm

Hi Bree,

If you have to consult w/ Kaiser, I'd encourage you to consider Dr. Lewis Hou in Redwood City, near Stanford. Dr. Hou was one of the Stanford residents involved w/ my 3rd surgery and he was wonderful!
https://mydoctor.kaiserpermanente.org/n ... to=1&sto=0
Hope this helps.

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Re: Left Frontal Lobe CCM with Hypertension

Postby Breebers84 » Fri Sep 28, 2018 5:33 pm

PattiG wrote:Hi Bree,

If you have to consult w/ Kaiser, I'd encourage you to consider Dr. Lewis Hou in Redwood City, near Stanford. Dr. Hou was one of the Stanford residents involved w/ my 3rd surgery and he was wonderful!
https://mydoctor.kaiserpermanente.org/n ... to=1&sto=0
Hope this helps.

Best wishes,
Patti


Thank you for the suggestion PattiG. At this point, I don't want to have surgery, especially with Kaiser. I would like to manage my symptoms with medicine. Unfortunately my request to get another opinion by a different neurologist has been denied. They continue to ignore my underlying symptoms because I don't want to have surgery at this time and the drugs they previously prescribed had side effects that were only adding to my symptoms or are contraindications to what I'm already experiencing.

To be honest, even if I chose to have surgery, I don't think they would allow me a referral to see a neurosurgeon that far out of my area. They are bullying me into doing exactly what they want while ignoring everything I've said. I wish I could switch insurance but I've been out of work since my diagnosis and I'm on leave so they will not even let me change my plan for next year.

I filed a grievance but I've been researching online about how Kaiser handles them, there are a lot of negative comments associated to patients' filing grievances against the hospital/doctors. If a patient tries to advocate for themselves and doesn't agree with the doctors, they basically side with the hospital. They will do little to no research on my actual complaint. So I'm just stuck with no way to see another neurologist or to get a doctor's note so I can continue the little money that SDI pays me for being unwell.

I've also been experiencing more intense pain in my right arm and leg. As well as neck/back of the head near neck pain. I've been having these leg spasms. It's been hard to walk at times because of the pain. I've also been having sharp pain in my back on my spine, continued numbness and tingling that seems to have spread. I don't even want to go to the ER at this point because of what the previous neurologist has put on my chart. I feel that they will basically say I'm not telling the truth. This is an unfortunate situation. I'm also at risk to lose my job because I'm not well enough to drive myself or have to take phone calls without extra stress, plus all my symptoms make me unfocused. My job is stressful; I'm already stressed enough in my current situation. I've lost hope and have no idea what to do.

PattiG, how did your surgery go? Did you fully recover or do you still deal with symptoms? Did you have neurological deficits after surgery? What were they if you did? Michelle, what about you? What was your experience like with surgery and the outcome after? Anyone else please feel free to share your experiences and recovery from surgery.
Breebers84
 
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Re: Left Frontal Lobe CCM with Hypertension

Postby Elizabeth » Sat Sep 29, 2018 4:16 pm

I'm so sorry!!! I hate managed care!! I would try to switch...if that's not possible then a few options. Try to work with hr to switch, explain your situation. If they won't budge, I'd look for a private insurance policy...I did that for my son when our employer insurance denied occupational therapy that he needed...but you might have to wait til January to get a new private policy thanks to "Obama care" sigh! You can also send your MRIs and history with current issues to Dr. Lawton at Barrows. He and his team will review your case and make recommendations for about $100. You don't have to have surgery even if he recommends it, but at least you will have an expert opinion for little cost. You can also get an opinion from Dr. Steinberg for free...I think it's still free. If you still don't like their opinions, you could pay cash for an office visit with whoever you want to try. I'd personally call around and try to get a good feel for someone good first and then try to negotiate a discounted cash price for an office visit since you don't want surgery anyways. You might be able to manage symptoms with medication, at least you can try. Worst case, you can make an appointment with more Kaiser MDS and hope you find a needle in the haystack...a rare MD that at least cares to try to help. I'd try everything else first though. I had surgery too. You can read my story on my blog. I only had one and it was problematic, so it had to go. Been a long road but I'm doing pretty good now considering everything.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Posts: 1664
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Left Frontal Lobe CCM with Hypertension

Postby PattiG » Sun Sep 30, 2018 6:37 pm

I'm so, so sorry for all the misery you're going through, Bree.
As if our diagnosis and symptoms weren't enough, let alone incompetent drs. and insurance bureaucracies?! :(
Is it possible an insurance commissioner would be helpful? :idea:
I too have multiples in various locations. Between 1988 and 2009, my bleeds and 3 surgeries were reasonably accessible and deficits affected cognition and easily fatigued. My 4th bleed and surgery of 2010 in the thalamus (near brainstem) was devastating and debilitating, as I ended up w/ double vision, left-sided numbness and excruciating pain 24/7 known as central pain syndrome, CPS (AKA thalamic pain, or post-stroke pain).
So hoping you can soon get beyond the maddening bureaucracies and find competent answers and direction of care that is right for you.

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
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Posts: 1094
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: Left Frontal Lobe CCM with Hypertension

Postby Elizabeth » Mon Oct 01, 2018 4:41 pm

I just got an email for an AA study. You might be interested...check it out:

https://angioma.patientcrossroads.org/i ... =component


Take care,
Elizabeth
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1664
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Left Frontal Lobe CCM with Hypertension

Postby Breebers84 » Tue Oct 02, 2018 3:07 pm

Elizabeth wrote:I'm so sorry!!! I hate managed care!! I would try to switch...if that's not possible then a few options. Try to work with hr to switch, explain your situation. If they won't budge, I'd look for a private insurance policy...I did that for my son when our employer insurance denied occupational therapy that he needed...but you might have to wait til January to get a new private policy thanks to "Obama care" sigh! You can also send your MRIs and history with current issues to Dr. Lawton at Barrows. He and his team will review your case and make recommendations for about $100. You don't have to have surgery even if he recommends it, but at least you will have an expert opinion for little cost. You can also get an opinion from Dr. Steinberg for free...I think it's still free. If you still don't like their opinions, you could pay cash for an office visit with whoever you want to try. I'd personally call around and try to get a good feel for someone good first and then try to negotiate a discounted cash price for an office visit since you don't want surgery anyways. You might be able to manage symptoms with medication, at least you can try. Worst case, you can make an appointment with more Kaiser MDS and hope you find a needle in the haystack...a rare MD that at least cares to try to help. I'd try everything else first though. I had surgery too. You can read my story on my blog. I only had one and it was problematic, so it had to go. Been a long road but I'm doing pretty good now considering everything.
.

My only problem is I currently have no income because I don't have a doctor's note to approve SDI. So I have absolutely no income at the moment to even pay anything out of pocket. I don't even know how I'm going to afford all these bills this month and to top it off, it's my birthday month.. Happy Birthday to me! I've tried to see other doctors within Kaiser too. All are in agreement with the incompetent neurologist. Currently Kaiser will not allow me to see another neurologist either. They denied my request for another opinion. I've already seen two. The first one was better than the second but he was not listening to me when I told him about the meds prescribed and side effects I was experiencing. The second one is the incompetent one.

I'll check out the trial, not sure what I need to be eligible but it's worth a shot. At this point, I have no other options since Kaiser has completely denied me further treatment unless I take the prescribed medications that causes prolonged bleeds and high blood pressure, which I'm already dealing with. SMH! I'm hoping I can at least apply for medi-cal to get an opinion outside of Kaiser. I'm currently waiting for my job to tell me if I can change my insurance, it's hard since I'm on a leave of absence. They are fully aware of what Kaiser is doing. I've kept them in the loop.

As far as Dr. Steinberg, how do I get in contact with him? Do I just send over all my medical records? Or how does that work?
Breebers84
 
Posts: 7
Joined: Thu Sep 06, 2018 3:52 pm

Re: Left Frontal Lobe CCM with Hypertension

Postby Breebers84 » Tue Oct 02, 2018 3:17 pm

PattiG wrote:I'm so, so sorry for all the misery you're going through, Bree.
As if our diagnosis and symptoms weren't enough, let alone incompetent drs. and insurance bureaucracies?! :(
Is it possible an insurance commissioner would be helpful? :idea:
I too have multiples in various locations. Between 1988 and 2009, my bleeds and 3 surgeries were reasonably accessible and deficits affected cognition and easily fatigued. My 4th bleed and surgery of 2010 in the thalamus (near brainstem) was devastating and debilitating, as I ended up w/ double vision, left-sided numbness and excruciating pain 24/7 known as central pain syndrome, CPS (AKA thalamic pain, or post-stroke pain).
So hoping you can soon get beyond the maddening bureaucracies and find competent answers and direction of care that is right for you.

Best wishes,
Patti


What is an insurance commissioner? I'm not familiar with that terminology. I do know that Kaiser has a strict policy that makes their doctors agree with other doctors diagnosises. I've been doing a lot of research and I'm completely appalled at the things I've found out. It was pointless for me to even file a grievance because the people reviewing my case have no medical background whatsoever. They will more than likely side with Kaiser anyway. It's just crazy that a healthcare facility would not be for the patient. What about the Hippocratic Oath?
Breebers84
 
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Joined: Thu Sep 06, 2018 3:52 pm

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