Both Patient & Caregiver

[Chris516]

My name is Christopher. I was born with Congenital Hydrocephalus May 16, 1967 in Berlin, Germany to U.S.-born parents(father, Tifton, GA; mother, Meridian, MS). I also have a ventricular brain aneurysm, Depression, Epilepsy and, PTSD. I had my first shunt placed in Feb.'68. That was followed by five revisions by the time I was 9yrs.-old, related to the Hydrocephalus and, the aneurysm. The Depression n' Epilepsy are a result of all the surgery. The PTSD is related to my exposure to military conflict. While I have never been in the military, my father had been sent to Saigon(Ho Chi Minh City since 1975), Vietnam by TIME Magazine. When my father returned from Vietnam, he brought back several horrific pictures from the war. I was fine, until, I lost a friend in Iraq last year. I took his death hard and, now I have a bracelet with all his military info on it.

The person I care for, is my fiance. She also has Epilepsy and, Hydrocephalus. We first got together in Aug.'02. In October of that year, I took her to the hospital with a severe 'migraine'.( Personally, I do not believe in 'migraines'. I feel they are a label the medical community uses, just so they won't have to look further.) When we got into the ER, I told the ER doc that, I would not put up with his just giving her something like Darvocet(pain med) and, sending us on our way. The ER doc got the on-call neurologist who, ordered an MRI. The neurologist was so concerned I might do something to him, that, he showed me the MRI and, I saw my fiance's Hydrocephalus, 'clear as day'. Later that month, we moved from Maryland to Minnesota. My fiance continued to have headaches till Feb.'04 when, her VP shunt was placed. In Dec.'05, my fiance hit her head on the ice yet, no one near where she fell, helped her up. She immediately started having headaches again. For the next 12mths., our neurologist and, my fiance's orginal neurosurgeion stonewalled on doing anything except prescribing more meds without even checking my fiance's symptoms. The first neurosurgeon is Chief of Neurosurgery, at the first hospital. I finally got fed up with the neurologist n' neurosurgeon and, got a new nerurosurgeon for her. The new neurosurgeon looked at the most recent films and saw, that, the original neurosurgeon had placed, part of my fiance's shunt in HER BRAIN TISSUE!!!! We are reporting him to the medical board for his negligence. The new neurosurgeon completely replaced my fiance's VP shunt, with, a programmable shunt.

I apologize for being so long-winded but, I had to get this out.

[trekker]

Hugs to you Chris and your fiancé. You did a wonderful job of advocating for her though it's a shame that they put you and her thru so much pain and aggravation. As a caregiver myself, I often think that the hardest part is dealing with the medical community...they have a tendency to look down on us because we have no "medical training" and yet we live with problems 24/7/365. We have been to so many doctors and thru so many tests and procedures that we pick up the medical jargon and often know more about our particular condition than many medical professionals. I have worked hard over the years to make sure that my hubby's doctors listen to me. I am with him 24/7/365 and they, at best, see him maybe 60-80 minutes a year. I do try to keep decent records about what goes on and my observations and this seems to help them realize that I'm no babe in the woods.

Could the fall that your fiancé had make her shunt move? Is she feeling better since the replacement?

I understand your need to express your frustrations. Please feel free to come here anytime. We may not always have advice or help to give but we always have ears to hear and hearts to feel your pain and cyber hugs to give.

Don't forget to go to the other forums here for both you and your fiancé. There is a hydrocephalus forum where others have gone thru similar situations. I also find the humor forum to be a lifesaver on many occasions.

[joy]

Welcome Christopher. Sorry you need to be here but it is a great place to vent and to ask for help. Trekker gave some wonderful advice and in my case now I am no longer a full time caregiver like I was for my mother who has passed away but do have to help daughter who has seizures and needs my help often. If we had not know how she usually acts when she has seizures, the medical people would have kept sending our daughter home as a drug overdose case even though it was prescribed medicine. We later found out she had a WBC that was way too high and had we not kept her ourselves the night after her last trip to the ER that she was released, she would most likely have died from pancreatitis. We took her in ourselves and asked that they please look further when we watched her sleep and knew from her breathing etc. that she was in trouble. It was much better to insist for someone to look into other causes rather than have her die at home and find another cause from an autopsy! Or have her buried and everyone just assume it was an overdose.

It has to be hard losing your friend. Take care of yourself so you can continue to have good health and watch and care for your fiance. It sounds like a very special relationship and don't hesitate to come back here or visit the other forums. There are a lot of good caring people at BrainTalk who will listen.

[purplegrrl]

Hi Chris... and I'm really sorry about your fiance... that sort of thing just shouldn't happen :eek: :mad:

Like you (and quite a few regulars who post on other boards), I'm both a patient and a caregiver.

I'm a brain injury survivor with resulting physical and learning disabilities and difficult to control epilepsy, also a history of PTSD and depression (tho I'm not struggling with either of those on a regular basis right now). My mum, who I care for, has dementia and several medical problems, including severe emphasema (on oxygen) and glaucoma/other eye conditions.

When we got into the ER, I told the ER doc that, I would not put up with his just giving her something like Darvocet(pain med) and, sending us on our way. The ER doc got the on-call neurologist who, ordered an MRI. The neurologist was so concerned I might do something to him, that, he showed me the MRI and, I saw my fiance's Hydrocephalus, 'clear as day'.

Sometimes, this being-both-patient-and-carer thing has its advantages, at least at first. Most new caregivers have very little knowledge of the system (in all its forms... medical, services, benefits etc). We (often) have a big advantage there! And other things, too... we sometimes know stuff that can help the person that we're caring for. When my mother's memory wasn't quite as bad as it is now, I taught her some of the same coping strategies that had worked for me! I've quoted energy conservation stuff straight from my own therapists mouth to her, too.

That all said, I'm no Pollyanna. Being a carer is hard... and when you have health issues/disabilities of your own, it's harder still. I get totally overwhelmed sometimes... and yes, my own health has suffered.

While you care for your fiance, important to get support for you, too. As someone else has said, BT is a good place for emotional support (and ideas, and personal experiences, people saying what worked for them). Also good to look for support within your own community - family, friends, neighbours, church, wherever your networks are or can be developed.

And make time to do things you enjoy - together with your fiance, or for some time out alone. It's so important (I sorta forgot about it, then woke up one day wondering why my life felt so bad... ummm :rolleyes: )

Good luck (and let us know how you're doing)

- Ria, up way past her bedtime, again

[Boopers]

Hi Chris,

Wanted to say that I am so thankful that you are taking such good care of your fiance. You are a great advocate for her care.
I wish you both the best of luck in the future.
Take care and post whenever you want to vent or want support.
Linda