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6 month mark. Good and Bad


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I hit my 6 month anniversary from the day it happen and I went to the eye doctor. The Good news from all this…. my eyesight improved! I have been nearly legally blind since I was 8 and now my prescription is less than half of what it was before! So weird!!!

The bad…… my body hates me. This fall I contracted viral meningitis which just about did me in. The doctors said it was because I went to Disney for the weekend and my immune system is so weak I should be avoiding crowds, especially air planes , trains and buses. Who knew?? My awful neurologist said "You only asked if me it was okay to travel from neurological perspective. You didn't ask me if I thought you *should* travel." FIRED ON THE SPOT! My primary doctor called the supervising doctor at NY Presbyterian in front of me and cut them to shreds for advising me to travel 4 months after a SAH. So now I have NO doctor looking at my head and I never got my 6 month MRI.

To be honest, I am depressed. I've often thought, if it wasn't for my family, it would have been so easy to just "go". I found out yesterday that I need surgery to repair my shoulders….. BOTH shoulders. They have no idea why my shoulders are so torn up inside. I'm not an athlete at all! I'm a couch potato who spent most of this year laying on back with illness. So the great mystery is why my entire body is against me. This started two years ago. I went to the Rheumatologist and had every test in the book. I told them I was in pain… REAL PAIN. I could barely move. My entire body was so stiff and painful. Then in May the Rheumatologist said it was orthopedic because the ligaments were torn so I had surgery on one shoulder. Then I got a staph infection and two weeks later a SAH. Not one doctor has connected the dots that there something systemic in my body wrong. A housewife doesn't tear apart both shoulders and both knees as well her spine and hips from doing laundry!!! My surgeon said I have the body of a professional football or rugby player! (American not UK!)LOL There's that much damage inside.

Here's the thing. I know surgery is the only way to fix my shoulders and end at least *that* pain but I'm afraid the next time I will die. 6 months ago my brain responded to all this by exploding. Why would a rational person subject themselves to all that surgery after surviving a SAH?????

I think I 'm babbling now. Sorry if this isn't even making sense. :sad1:

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Babble away Susan,

Now you need things to make you feel better but as you have so much pain it's catch 22.

I have spine problems and I cannot walk very far, could be my weight !! I have gained a lot since I had shunt put

in. (If in doubt blame the shunt Win, joke).

We need to be happy when possible so try and think of a time when you had a real good laugh and really cried

with laughter.

I wish you well Susan and try and think positive.

Easily said than done xx Give it a try though xx

Good Luck

WinB143 xx

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Hi Susan,

You've had a tough year. I do like reading your posts though. Always descriptive. It seems like it is always something as we get older. Gone are the carefree days of the biggest worry of wondering what to wear to go out with the girls.

13 years ago I dealt with cancer and then an SAH? I woulda never guessed.

I am sorry about your doctor. I am terrified of flying right now. My boss wants me to fly to FL and that's only about 2 hrs for me and I will not do it yet. Heck, just driving thru the mountains made my head hurt!

My neurosurgeon is in Philadelphia, PA if you are close and would like his name. He is fabulous.

Iola

Edited by iola
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Susan,

It is good and bad to pass mile stones. The good out weighs the bad as the time passes. Congratz on this one.

Since my bleed was not caused by an aneurysm, I don't really need to follow-up with scans and such. My brain had enough scanning and there was nothing to be found. I'm not sure if you're in the same boat or not. So I said good riddance to my neurosurgeon.

One thing that I can tell you about my symptoms at 6months is that I had terrible pains all over the place. Especially my joints. Grinding knees, painful hips, a neck that was sore over nothing, arms that clicked like they were coming out of their sockets if I put them overhead...and my back, I felt like I threw it out all the time.

I realized that even though it felt like muscular pain, it was coming from my motorneurons. The brainstem is where they all are. Gradually, the pains lifted one by one. I no longer have grinding knees, my neck is usually OK, just recently my hips got better, I don't click anymore and my back is way more stable. Some of these symptoms come back at night or when I get too tired, but they're gone the next am.

I'd ask your doctor if they can actually see damage to your shoulders and such. I understand not wanting to undergo any surgeries so soon after the SAH. If it was life threatening, that would be a different story. It's up to you how much pain you can tolerate.

Good healing and reaching your next milestone date :)

~Kris

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I do have significant damage to my shoulders. The latest MRI showed it is way worse than the doctor thought. I have a very high tolerance to pain so I don't complain or ask for meds. There are no less than 5 pea sized cysts in left shoulder, tears to the ligaments, and now I have bone marrow edema in both knees, both shoulders and my spine. This has been going on for years but they never find anything conclusive. I've tested negative for Rheumatoid arthritis, lupus, MS and lyme disease. But yet I clearly have an autoimmune disease. I think it is what made the environment perfect in my head for a SAH.

I'm just really sad and frustrated. I just don't understand why. I need to be strong for my son. It's like a cosmic joke. "I'm going to give her cancer, take her uterus, make her use a surrogate to get her miracle baby and then make the child autistic." 5 years later, brain damage from a Perimesencephalic SAH and a broken body just kick it up a notch. Oh and my husband may lose his job in 2014.:shocked:

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I am so sorry Susan. I can relate to some extent though. I had cervical cancer and at 34 had a hysterectomy 3 months before my wedding. We adopted 5 years later. We waited 3 yrs for a birth mother to choose us. We decided to stay in the U.S. so it can take quite awhile. But, well worth the wait. She's mine all mine.

I have a friend with an autistic child and we spend a week at the beach each year with them. Quite a challenge and its only one week for us!

If it is any consolation you are in my prayers as all the BTGers are.

I

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Susan, you have been through so much, feeling so unwell and having so many things to deal with its not surprising you are feeling really sad and frustrated ! You should be very proud of how you have coped and are coping.

I cant imagine how hard it must be for you.

Just wondered if Keyhole surgery was an option for you to help mend your shoulder pain? My husband had this and was given a nerve block rather than anesthetic. .

Susan I wish you and your family well for 2014. Sending big hugs and positive vibes your way xxx

Edited by Tina
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Hi Susan,

You have got such a lot going on, no wonder you feel down and constant pain is so wearing both on energy and humour!

Surely your neurologist should have thought of the wider picture for you - after all, he's the one that went to university for years and he should understand that after sah logic and reasoning is affected and nothing is simple or obvious anymore, how frustrating!

I hope things pick up for you very soon, you have survived a huge event and you are much stronger than you think you are xxx

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