Hello. I am new to this awesome group. I was diagnosed with 2 aneurysms on July 1st of last year. By the time I went into surgery a month later they found a 3rd. 1 5 mm on the right and 2 on the left 2mm (sister aneurysms). All are clipped. My skull was cut open craniotomies. Right side cut open twice due to skull flap sliding down right away.
Prior to this about a year I had extreme vertigo and a couple of close fainting spells.
Then vertigo again in May that wouldn’t go away and headaches I thought were migraines.
Sorry to hear some suffer with this dizziness still. I have no taste , smell or tears now. And like many others the periodic PTSD.
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Welcome again and glad you like the group! I may be biased, but I think our members are the best, and now you’re one of us!
Sounds like you’ve been through the wringer. When they did your left and right sides did they open both sides of your skull on the same day? How long did it take them to reopen the right side? I haven’t had a craniotomy, just a lot of coils, balloon assist and a stent.
Have you been to the ophthalmologist about your eyes? My eyes were drying out so much it felt like pointy rocks. My ophthalmologist has me on prescription eye drops and OTC eye drops which have helped enormously. He even told me how to save money on both by putting the lid back on the little vials so I can use them 3-4 times instead of once and toss.
I had right side done on 8/02, left side on 8/04 and then about midnight on 8/04 to reopen right side. I don’t have support here in Alaska with neurology department. And in Seattle where I had this done keeps referring me to them with my questions or concerns. They say my loosing my smell, taste and tears has nothing to do with surgeries or craniotomies I had?
That’s a lot in such a short time! Since I’ve never had a craniotomy, I looked to the Internet and found this old study from 2009. I try to stay within the last 3-5 years because medical science changes so quickly. Anosmia after endovascular and open surgical treatment of intracranial aneurysms - PubMed. Seems to me (not a doctor) that if the surgeon was near the olfactary nerve it could be the cause of your loss of taste and smell. I did develop really dry eyes after my SAH but my ophthalmologist says it’s age and being outside and of course on electronic devices. He already had me using OTC eyedrops prior to my rupture because of having to be on the computer so much after the agency moved the hard copy files to the computers. His preferences changed over the years changed to Systane preservative free.
Since you’re not getting any help from the Neurologists, I’d see if your PCP can refer you to an ENT and an ophthalmologist. Hopefully you live near or in one of the larger cities in Alaska and not like my cousin, in a small town. He says it No Man’s Land but it can’t be since he was a psychologist for a substance abuse center. Haven’t been there but he told us when we come, we have to take a small plane to get to him, no car rentals available.
Unsure of how Alaska does it, hopefully you don’t have to go back to Seattle. ENTs are the ones who deal with loss of smell which can lead to loss of taste. I’m crossing my fingers it comes back for you.
Thank you. I live in the largest city in Alaska also known as Los Anchorage. More than half the population of Alaska lives here. But I am familiar with small villages here. Born in one and traveled to many as I worked in the airline industry.
You see people believe we get free health care if we are of Native descent. But that is a whole other story to dissect. Here in Anchorage we do not have the surgeons available to perform craniotomies at our Alaska Native Tribal Consortium.
And it takes paperwork and going to see specialist first. I bypassed the specialists and ended up in ER on July first with 2 aneurysms. After 32 days waiting on paperwork - I am flown to Seattle for surgeries. And
I get texts and voicemails from the health beneficiaries at the native hospital telling me my Medicare does not consider my aneurysms as an emergency.
I went into surgery the next morning anyway. And the surgeons were in agreement that the now 3 aneurysms are better to be clipped! I told the surgeons I didn’t want to go back to Anchorage as I recovered because I didn’t believe I would get the care I needed as I did there. And unfortunately I was right. I have seen a neurologist here once.
I appreciate you acknowledging my concerns. I did order a kit via Amazon to help retrain my brain to smell again. And I still try to cook food that I know I would enjoy. There have been faint smells here and there. The Smokey smell from the Hemplers bacon I cooked for my son. And peppermint…an essential oil I drop on my tongue for heartburn.
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I love peppermint for all kinds of things, I use a muscle balm based in peppermint and it works wonders. I think I’d eat a tin or two of Altoids when I was able to work, never had heartburn so that may have been the reason. The GI doc who had to check my upper GI tract said I had a remarkably healthy upper GI for someone my age back several years ago. Our local radiologist thought an ultrasound was suspicious of cancer, it was DM.
Being on Medicare means I have to get pre approved, a couple of times the request went to the denied pile. I would have to call and ask about it. Are you able to call for yourself or does someone in the tribe have the only authority to do it? Do you have to get Medicare through the tribe or can you find another Medicare provider? Sorry about my ignorance, I only had to know the ICWA for work. I had a friend at work that worked on a Navajo Reservation and remember her saying trying to get any help for her clients was daunting, frustrating and slap near impossible. Her belief was most tribes in the US are too poor to fight in Washington adequately. Politicians it seems to me are not going to put much effort in bills that come up for votes unless it helps the personally. I’m on a roll about this so I best stop before I have to moderate myself.
My cousin did say Alaskan Natives have the short end of the straw and any serious complicating issues are done in other States for everyone. He gets really miffed about it since so many of his clients are Natives. Sorry I forget what it’s called. Something about 3-4 States work together, it was above my understanding as I was in my early years following rupture. I feel for you.
I know he’s not overly fond of salmon and asked Mom not to grill any. Growing up in LA county, Dad was always bringing home albacore, we got tired of it too. Guys would fill the trunk of his car up and we all had to pitch in to break it down so it could be frozen. Oddly enough I miss it now. We live too far inland for really fresh fish, our rivers are dangerously polluted so no fishing for me anymore. The mountains which I thought were foothills when I first moved to NC no longer get cold enough for trout to taste decent.
The Eastern band of Cherokee I think has the market on federal aide over all the other tribes at least here in the South. It seems to have paid off for them having strong tribal leaders back decades ago that didn’t take the pay out as some of tribes did here in NC. Those tribes are now fighting to get recognition but the Eastern band is lobbying against their lobbyists. It’s a hot mess, it will mean less federal money for the Eastern band if the tribes get full recognition. No one wants less money, especially with prices continuing to skyrocket.
I did do a little more research on loss of taste and smell following a craniotomy and they all referenced the olfactory nerve with a pretty significant number of each of the small studies getting their senses back. I hope this happens with you as well.
I’m still hoping you can get in to see an ENT and an Ophthalmologist. I don’t know if this helps, but my Ophthalmologist told me to use Systane Ultra Preservative free to use along with my restasis(expensive as heck with Medicare). With both, I just put the cap back on and keep them in empty pill bottles.
I do know a bit about PTSD having worked with folks who experienced it. The first thing is identifying what your body does when a trigger occurs. Do you clench your jaw or hand? Does your stomach get tight or upset? Maybe your neck starts to hurt. Everyone has a tell but since we’re thousands of miles away from each other, you will have to figure it out on your own but ima sure you can do it. Once you feel or see it, start doing relaxation breathing immediately. It’s a good thing to practice all the time so when you need it, it comes naturally as putting one foot in front of the other. There’s an abundance of methods on YouTube so that would be a good start if you don’t know how and it’s taught differently now than what I learned in the ‘70’s and taught until my forced retirement in 2013. The way I was taught was to inhale through your nose for a count of 5, hold it for a count of 5 exhale through you mouth for a count of 5. It does have to be practiced all the time to become effect but if your faithful you’ll have it mastered in a couple of weeks. Do it as soon as you wake up, when your in the bathroom, before and after meals, when your walking about or cleaning the house, you get the idea. You have to breathe down to your diaphragm and that can be difficult to learn but keep trying. I’m also going to change the title of your topic a bit so folks who have had craniotomies will recognize it.
All the best,
Moltroub
I am on good eye drops for dry eyes now that require a prescription. Xiidra and burns like heck when administered but eye doc recommended keeping in fridge to alleviate the burn. And yes! Now putting drops in 2x a day is painless.
I have found a few who truly listen to me when I say something is happening to my body I have no control over. Not easy to find in native care. Some just in for the money or end up getting burnt out helping those who don’t want to help themselves.
Not my first go around with neglect or n healthcare. I miscarried and as days and weeks went on I kept letting doc know I am in pain and crying quietly too not disturb my husband. He said quit feeling sorry for yourself and just go home.
Again I end up in ER with a tubal pregnancy that ruptured as doc out his finger in my abdomen. And with this same pregnancy - twins - I lost 5 pints of blood in ER.
So I advocated to rush my paperwork with the news of aneurysms. I called Seattle and they informed me via zoom doctor appointment. This is their standard usually 30 days to process paperwork. I ended up back in ER with more pain and walking like I was intoxicated upon awakening. More than likely when 3rd aneurysm formed?
The health insurance reps they had working were not happy I was inflight to Seattle and saying my Medicare said it was not an emergency. As I noted prior. I ignored their voicemail and text and showed up for surgery 7am the next morning.
We know our bodies don’t we! And what Medicare didn’t cover, Alaska native health consortium authorized this surgery also- required to cover the rest. But I also did financial aid paperwork with Swedish cherry hill hospital and they approved whatever is not covered they will take care of. So why all the issues for me saving my life?
3 days into smelling different oils to help my brain remember smell.
I have been told more than once by doctors here. You sure know how to advocate for yourself. Usually after I have upset them because I tell them something is wrong with my body but they do t listen. Even this January when bleeding would not stop and I end up in ER. They realize I have ulcerative colitis.
I have changed providers 2x since last July and did not care for last visit with new doc. Was very kind at first but now very cold and almost rude.
I wish I had private insurance. But my main goal to attain my health back. 3rd set of steroid shots in back last Wednesday and I hope this is correct spot this time. I have not had pain since.
I know I should be grateful but I can’t seem to adjust living in Hud housing and opening my door to see lines of walkers down the hall. I am grieving a lot right now working to have who I was before everything last summer. I feel locked down to a prison and yes it is my own mind scared I will end up with a walker too soon in life.
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Sorry about a couple typos in last reply. When doc put finger on abdomen was one and the other I lost 4 pints of blood not 5. I have thought of writing a book on the medical and dental care I have had at the native facilities. A good title would be’ “Free Healthcare That Almost Took My Life.”
Many blessings your friend,
Mary Lou
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It sounds to me as if you’ve had what is called medical gaslighting it’s a big deal now https://www.amjmed.com/article/S0002-9343(24)00396-6/fulltext. I’ve had a few doctors in my lifetime that presumed one thing and didn’t follow through with what they should have. It’s a really common occurrence with female partners sad to say. I’m proud of you for sticking to your guns and getting the care you needed. If the hospital in Seattle deems it needed to be done sooner, rather than later and your consortium okayed it, it makes no sense why Medicare fumbled the ball. But for me, everything I get has to be pre approved by my Medicare provider. Only once did I have to call and ask why it hadn’t been approved and the guy explained someone quickly looks over the request and it goes to the pile - approved or not. He said mine should have been approved and got it okayed in a day. So simple human error.
I was saddened to hear you experienced the loss of your unborn children. A GS who my PCP said was an OB/Gyn told me I’d solve my issues by getting pregnant. Found a real OB/GYN who literally threatened the GS with a lawsuit with her own money if he didn’t hand over my records immediately. She had me in surgery the next day. I have too much scar tissue in my uterus and could never have children. I didn’t know women who picked up things more than their weight could “strain their baby maker” until decades later. I think the OB/GYN said no more than 25% percent body weight, who knew?
I say yes, to you writing a book. Grandma (b. 1895) taught me early on our stories are important. They tell us who we are and guide us to who we will be. Stories of others are equally important as they also help guide our journey. Others along my life have shared their stories with me and I learned from them. We share our stories here and I learn from them. Sharing your story with us has hopefully shown the continued issues Native Americans have in the USA. I knew some people who were Navajo and Cherokee from the big reservation on OK growing up were experiencing similar issues with most everything government related. You’d think the people in office would have learned by now. When you publish your book you might want to send it to the Alaskan politicians in Washington and some others in Alaska. Maybe they will get their light turned on. Thank you for sharing your story!
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Medicare did pay partial
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Please let me know if you do end up writing a book, as I would love to read it, and learn more about these additional challenges you have had to undergo as a Native American. We have much to learn from you to figure out how we can reduce these barriers to quality health care for everyone!
Sending good thoughts and healing energy out to you. Please keep letting us know how you are doing with all of this, we are here for you!
Fin Whale Fan 
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Thank you. I did not bite the bait that the surgery wasn’t ann emergency and yes Medicaid paid a portion of my surgeries and ANTHC (native facility that approved the surgery) paid some. How much I don’t know. But I do know I qualified for financial aid with the Seattle hospital also. Why the people in the native hospital benefits department here in Alaska acted like payment was coming out of their own bank. I don’t know. Even our native corporations up here in Alaska have a stake in giving them money.
The book will have its challenges. I was adopted into my Alaska native family and raised in a bi lingual home. And it showed when I attended college and had to write my own papers. Ni had to take English classes to help with my writing. But my parents would be proud. A first generation high school graduate and college degree child.
I feel so encouraged among those who know what I just went through recently. I am still in a bit of survival mode to make it on a retired budget. Which has made this all even more difficult to swallow. You all cheer me up!
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I bet your parents are proud and you should be proud of your accomplishments as well! No easy feat to be the first. In the county we just moved from, there is a place that one can get budgeting advice for free. You may have something similar in Anchorage. I know many seniors have to work part time to supplement their income if they’re able. One needs to be very careful they don’t go over the SS allowance. A friend I know who retired went back to work part time and wouldn’t say no to the agency we worked at and exceeded the earnings allowed, she had to pay back three months I think it was and then lost another couple of months. I know a couple of people who speak Spanish and have supplemented their income as translators, perhaps that’s possible in your neck of the woods. It’s much easier to have a translator in person but there are companies who offer whatever language is needed over the phone. There’s also some tribes in our area that offer classes taught by their Elders so the younger generations of their tribes can learn history, storytelling, language, etc.
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I am just going to chime in that I wholeheartedly agree with @Moltroub!
Being a strong trailblazer is not easy, and it is simply a FANTASTIC accomplishment to be both the first to graduate high school and college. That tells me you are a very strong and determined individual, and I have absolutely no doubt you will bring that same fight and determination to your current battles with an aneurysm diagnosis.
From my experience, I would agree that your current struggle is not easy, having to manage not only the physical and emotional issues of an aneurysm diagnosis, but add on the financial impact it has - and on top of it, you have to do this without your community close by! We will try to be here for you though.
@Moltroub will laugh, as it is obvious I am a research-type of person; I just can’t help myself! If of no interest, please just ignore me then! However, you brought up a question in my mind as to how can we do a better job budgeting, given the financial impacts a healthcare diagnosis has on us. I will admit I haven’t found anything ideal (looking at both the Anchorage Public Library, the Seattle Public Library and AARP’s Smart Planet), but I finally did stumble into the National Council on Aging’s website, and they have a section on Personal Finance. Just quickly, there are some good tips in here I need to look into further myself, so thank you for that!
Hoping you have a beautiful day!
Fin Whale Fan
P.S. Learning more about your story makes me want to read your book even more! 
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We could just laugh together, I think we have the same addiction! :rofl Great link we can all learn from! The first time i went to get budgeting advice, the guy gave me the sheet, stressed how important it was to budget in entertainment. I told him I couldn’t afford to go to the movies. He stressed it again and gave me a form which I filled out. He took one look at it and said something like, “We can’t help you, you don”t make enough money.” Years later ran into him and he asked if I had entertainment funds yet, I said probably, but I rarely go to the movies.
Best advice I received while in my 30’s was from a couple who came to the US with $1500, two children and three suitcases back in the “60’s I think. Dorothy kept a shoebox and up front she immediately put 20% of their weekly earnings to pay themselves, the next section was for their family needs (utilities, housing, food, insurance etc) the last section was for their wants. If there was nothing left after paying themselves and their needs, they wanted nothing. Kit and Dorothy took their 20% and started with a financial advisor investing their money. BH and I started that practice as soon as we learned it. We didn’t go to Myrtle Beach or Dollywood for a week every year like most folks we know. In our area the factories used to shut down for the week of the 4th and the week of Christmas. We would travel to visit our parents when we were able to get time off. Then every 5 years, we would take a really nice vacation to different States. To be honest, the first month or two was the hardest for BH, but we have done decently enough over the decades. We won’t die multimillionaires like Dorothy and Kit did but that’s ok. My Aunt and Uncle used to travel a lot after retirement, they would use Elder Hostel which is now Road Scholar and said it was the cheapest way to travel and the short classes are usually interesting. Kit and Dorothy used the Smithsonian to travel. Hopefully this helps some, I know it won’t help all, especially for those of us who are retired.