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Mitch (mcl3086) ...My Story...


mcl3086
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Hello! I am so glad to find a group like this; I hope it turns out to be a good experience.

I am a 53 year old male. About 2 1/2 years ago, I had to start a Long Term Disability (LTD) because of a myriad of chronic illnesses, the combination of which made it impossible to keep working. It all started about ten years ago, when I first started suffering from symptoms that were later diagnosed as Meniere's Disease. For those that aren't familiar with it, Meniere's causes severe vertigo, hearing loss, tinnitus, "roaring", fullness in the ears, etc. As the disease progresses, you usually lose hearing in the affected ear, but the upside is that the vertigo usually lessens as the hearing decreases.

About a year ago, after a few years of no vertigo, I started suffering from it again. This was very concerning; sometimes Meniere's can "jump" from one ear to the other, and I was afraid that I was now on a path to lose the hearing in my other ear. After the vertigo became consistent, I went to my ENT, who, of course, ordered a head/brain CT to see what was going on. When I met with him in the follow-up appointment, he told me that they didn't find anything horrendous, and he thought they could treat my symptoms out of his office, with antihistamines. The hospital/doctor network I use offers an electronic updating service, and my CT test results weren't posted for a couple of weeks, so I requested that they be, so I could see them. I honestly think that this was the first time the ENT had read the report, rather than just look at the images himself.

When I read the Radiologist's report I noticed something unusual in it. The last sentence was one I'd never seen before...it read, "[small, opaque growth] may be a meningioma". Not knowing what a Meningioma was, I immediately Googled it, and found it was doctor-speak for a brain tumor. A BRAIN TUMOR! And the ENT had told me there was "nothing horrendous" present.

About an hour after it showed up on my computer, I received a call from the ENT's office, saying that they would like me to meet with a neurosurgeon. (Hence the thought that he had never read the report until this time...) :)

Okay, I know you're wondering where the heck I'm going with this long, drawn on story, so here's where it should get interesting to all of you...I hope.

Turns out that what they thought was Meniere's Disease was actually a tumor, extremely rare type, that was growing directly over the Endolymphatic Sac and placing pressure on it...causing the Meniere's symptoms. There are less than about a dozen documented cases on the internet.

Surgery was scheduled, and on October 30th of last year, I had surgery to remove this tumor. When they got inside, the two neurosurgeons found that the tumor that they thought was the size of a pencil eraser was actually about the size of a racquetball. They had to remove quite a bit of brain matter and bone to feel they had removed it all. That surgery all went very well.

The problems began in recovery.

While in recovery, I suffered a "moderate" heart attack. Cardiologists were consulted, and they, of course, wanted to immediately put me on blood thinners to help prevent any further damage to the heart. The neurosurgeons objected, as they had just drilled a two inch hole in my skull, and knew that blood thinners would greatly increase the risk of a "bleed". In the end, a compromise was reached, and I was (supposedly) placed on the lowest possible dose of Heparin, a blood thinner.

The next night, I had "the worst headache of my life", and started having delusions with it. Thinking I had been abandoned, I tried to get out of bed, breaking an IV needle off in my arm in the process. After testing, it was confirmed that I had, indeed, had a "bleed". Bad enough that in an emergency procedure, in my hospital room, a neurosurgeon drilled three holes in my head to relieve the pressure.

In the end, I spent 21 days in the hospital, and when discharged, was told I'd had a tumor resection (removal), a heart attack, a subarachnoid hemorrhage, hydrocephalus, an emergency craniotomy, and a "cerebellar tonsillar herniation". Many of you are probably familiar with all those terms, as I have become over the past few months.

That was about five months ago. I still have a number of lingering effects, and that is what worries me the most, and why I have sought out a group like this. I feel somewhat "patronized" by my neurosurgeons; they always smile and kind of "pat me on the head" while telling me how good I look, and how that was all "no big deal". Everything I read makes it sound like it's a very big deal.

No one will tell me what to expect, what to watch out for, what I will have to deal with for the rest of my life, etc. And I understand that they don't want to create any "self-fulfilling prophecies", but I feel I need some answers and to be treated as an adult. Honestly, it feels like they're trying very hard to keep me from suing them...like perhaps something could have been done differently.

So, I don't have any real questions yet, but I'm sure I will. I will continue to read many of the posts, and as things sound familiar, I will probably ask a few questions. If anyone has any advice or input based on what I've written so far, I'd be very interested. I feel I'm currently just kind of getting around to accept all of this; that I've been in some sort of denial up til now. I also am feeling somewhat depressed. I have an appointment with a counselor this afternoon to discuss some of this. The thing I am learning, albeit slowly, is how I have to learn to be patient. How nobody really knows what will happen in each individual case, and how time is required to learn what has been thrown into my path. I'm horribly impatient, unfortunately.

Thank you all for being here, for being willing to help others who have also had SAH. I hope mine is a situation/case worthy of your attention. No one has ever been willing to acknowledge the "S" word, even though I came right out and asked, "Didn't I basically have a stroke??". Should have heard THAT response...

Thanks again, and I hope you all have a wonderful weekend.

Mitch/mcl3086

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Welcome to BTG. I am guessing rightly or wrongly that you are not UK based but there is support here for all. We have members from all over the world.

What you are experiencing is generally common to us all. On saying that everyone's recovery is different and over a varying period of time. Some have a full recovery and others are left with deficits. No one can predict their outcome.

Counselling is a good move as it should help you come to terms with what has happened. To alleviate any headaches you may have make sure you keep well hydrated.

In the UK, I don't know about elsewhere, SAH is termed as a type of stroke, an haemorrhage stroke.

Read around the forums and you will find a mine of information but please be aware that none of us are medically qualified so there are some questions that only a medical practicioner can answer and advise upon.

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Hi Mitch, welcome to BTG. What a story you have!!

I don't know where you are from but I'm wondering if there is a brain injury association near you. In the UK Headway comes highly recommended by many on this site. Where I am is the Brain Injury Society and there are many other similar organizations around the world. There is lots of wonderful information here too of course.

We seem to get more meaningful information from people who've been through it like here on BTG and from those associated with Brain Injury organizations.

Sandi K.

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Mitch,

Welcome, ask as many questions as you need to! I do not think the Neurologist or Neurosurgeons know what the end result will be and that is why they never answer us! I just do not think they know enough about the brain to tell us.

Gee, I have a mengioma and was sick almost a year prior to SAH & strokes but in 2009 I lost balance and grip they thought/ think it was from my fibro but it has often made me wonder as I had so many neurological aspects along the way as well.

Ah the "stroke" word! Man, neurosurgeons hate SAH being lumped into the stroke catagory. That was the only time mine lost his cool when I said "stroke" and mine you I had a couple! I personally hate the SAH being grouped in there as well.

You are still so early on ( I am at 19 months) and it gets easier. I wish I journal the time but I did not. I also can tell you after 1 year I am still seeing improvements. I started therapy about 3 months ago - I only go monthly but that has been really good for me. I think I really need to be validated montlhy that I am doing well for what I have been through! I am sure it is so normal to be depressed somewhat after all this and heart attack as well. I think we all are in some state of depression on and off. Mine is so much better but I have done a bunch of postive thought process that has helped a great deal. Except ups and down don't be surprised when they happen!

I think as a whole most of us like ourselves better now. I do not wish to go through it again but man it has taught me a lot and a lot of patience along the way. I learned in therapy I had to let go things beyond my control as they wear me out! That was huge. I just need to worry about little old me!

Good Luck , Maryb

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Thank you all for responding and welcoming me. No, I'm not in the UK, I live in a suburb of Salt Lake City, Utah. If it makes any difference, my first ancestor to come to the USA was from Marlowe, which I understand is a bit west of London? Didn't know him...that was in the late 1600's. ;)

I appreciate the advice; I know I need to be patient. I was also told at my last follow-up with my NS that I'll have to have imaging done at the one year mark...to make sure the tumor isn't coming back. What a horrible thought!!

For further background, as I mentioned briefly, I've been on disability for about 2 1/2 years now. I have been diagnosed with 8 herniated discs, fibromyalgia, Chronic Fatigue Syndrome/M.E., myofascial pain syndrome, degenerative disc disease, spinal facet arthritis, and most recently they've confirmed small fiber neuropathy. Pain is my constant companion.

Thank you again. I look forward to getting to know you all over time.

Mitch

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