Is "Happy to be alive" good enough?

[Lifelines Dallas]

Hello. My name is Kimberly Aikman. I survived a rupture brain aneurysm and emergency brain surgery in 2000 when I was 31 years old. I have spent the last 7 years finding the ways to improve my quality of life and remediate the deficits the brain injury left me with. I was moderately to severely brain injured. Now I'm not - I have restored my higher level cognitive functioning and am in the final stages of remediating the neuroendocrine and sensory integration issues that still limit my quality of life. I have found all the missing pieces of who I was and have returned to the person I was before my rupture - with notable improvements that maturity, aging, and the gaining of knowledge provide.

I am posting a letter that I recently wrote to the neurosurgeons who treated me. To provide some history - I was recently asked to coordinate an existing brain aneurysm support group at the hospital where they practise. After the letter was sent, the neurosurgeons shut down the support group. This is the second time they have done so as a response to my request that better information be given to their patients.

I would like to hear people's responses to this letter. In addition, I would like to know how other survivors feel about their recovery - if they were told the brain cannot heal, that a broken life is the best that they can hope for. For example, I was told to go home and watch television - and while this might be good advice for the first few weeks after discharge, it does not help someone return to a functioning life. That's all the instruction I got.

What I really want to know is if I'm the only one who really wants to be better. Are people content just to get by? Do they believe a doctor when he/she says this is all you get back? Would they be willing to try alternative forms of therapy like neurofeedback, acupuncture, Tomatis, etc.? Is the issue that the information and/or knowledge about how the brain can heal and the therapies that can restore brain functioning is just not available? Or is it that people just really want a quick fix - and if they take an antidepressant then their worries go away?

My life and recovery are a miracle. I would like other people to have the same miracle but I'm not sure if that's possible. What I hear is that most people are happy just to be alive. How can that be good enough when the chance for a near complete recovery is possible - a life without drugs, without side effects and a return to the person you were before the brain injury?

Here is the letter. I appreciate your thoughts.

Dear Drs. X and Y,

I don't know if you remember me, since it's been 7 years since my discharge from Hospital Z. I recently spoke with AB about the support group and volunteered to become the coordinator. I would like to use my experience and help make the group one of the best resources for brain injury in Dallas. To give you some indication of what I envision, I would invite speakers who address the variety of issues brain injury survivors face, and introduce therapies that will help them heal and restore their quality of life. The majority of these therapies are what you would term "alternative." An indication of my core philosophies can be found at www.lifelinesdallas.blogspot.com.

The purpose of this email is to give you some indication about what it means to recover from a brain injury. It could be that I am the first patient to give you this kind of feedback. Please know this email does not mean that I am not grateful for my life - I am. But my life is nothing without the ability to survive and function, and I lost my quality of life the moment my aneurysm ruptured. Ultimately, I hope that if you realize what the issues are and how brain injury survivors are treated, then perhaps you could use your power to chart a course for change. I see that opportunity with the support group - presenting the reality of brain injury, resulting complications, and the road map to recovery - so survivors have some guidance in the aftermath of their life changing event.

When I asked for help surviving in the aftermath from brain injury from the DEF medical system, what I faced was overwhelming ignorance and ineptitude from physicians, psychologists, and ancillary staff who were theoretically trained to handle brain injury. Some of the diagnoses given to me were major depressive, conversion disorder, and a variety of opinions that ultimately signified there was nothing organically wrong with me. I believe Dr. Y even questioned "Why doesn't she get on with her life?" in the spring of 2003 when I asked about CranioSacral Therapy.

What I have learned over the course of the last seven years, due to my own courage, perseverance, and firm belief in myself, is that I had and continue to have a variety of organic issues that stem directly from the brain injury. At every step along the way, had a doctor taken the time to fully examine the issues I was having, these problems could have been dealt with in a more timely fashion.

For example, my medical record from a visit in 2000 with Dr. Y shows a diagnosis code of connective tissue disorder. I was not told of this disorder nor were any of the resulting referrals to physicians reflective of this code. I was instead treated as though the pain was psychogenic. I took me 6 years to figure out for myself, with no guidance from the doctors, that I have Ehlers Danlos syndrome, hypermobility. A medical geneticist confirmed the diagnosis. The physical pain that I have had to deal with for 7 years can now be addressed and treated appropriately.

I asked nurse W in the fall of 2000 about biofeedback. I was told this therapy would not help me. It took me four more years to find Dr. G, start neurofeedback, and with this therapy I have experienced a near complete return of higher cognitive brain function.

I asked repeatedly about the physical issues resulting from my stroke and was given a variety of psychogenic diagnoses. It took 7 years for me to have an occupational therapy evaluation that revealed I have severe vestibular and proprioceptive issues that continue to limit my ability to function. A recent examination by a neuro optometrist revealed I have a right side visual midline shift. This makes sense, given the ischemia I experienced in the hospital. I was also told that I had right sided neglect - another physical issue that I was never properly diagnosed nor treated for. I also have other sensory integration issues that have now been identified.

I asked Dr. Y about my hair falling out in the first weeks after my discharge. I was told it was due to the stress of the trauma I survived. The reality is that hair falling out is a clear indication of a thyroid problem, and in fact, neuroendocrine complications following subarachnoid hemorrhage are quite common. This information took 5 years for me to figure out and I did this through scientific based research. I have continuing issues with adrenal insufficiency and diabetes insipidus that I have yet to find an endocrinologist to help me with.

In 2001, when I attempted to start a support group on campus, I was met with great resistance from your staff. In fact, all members of my then health care team mention in my medical record that I should not start a support group, when in reality, starting the group was the best thing psychologically (as indicated in any textbook) and most healing thing for me to do. Today, the same group that I was judged not to be able to handle is the best brain injury support group in Dallas and I have become the leading resource for both brain injury survivors and health care professionals in the metroplex.

How I was treated is unfortunately no different than how the majority of brain injury survivors are treated. I would like to foster change in this arena - because it shouldn't take someone 7 years to be properly diagnosed and treated. Survivors need guidance, information, and healing therapies. When someone loses the ability to think, which is what happens following brain surgery, they then need a road map because without the proper information and recovery, what quality of life can they ever hope to have?

I understand that the medical system is not conducive to one recovering from a brain injury. I understand that you feel these issues are not in your arena. What I hope you understand is that your arena is where the life changes, and the guidance needs to come from you. Primary care physicians are not trained to handle brain injury issues. In my own case, I was discharged from the hospital without any evaluations - physical therapy, occupational therapy, or neuropsychological. Given the extent of the trauma I survived, this is inexcuseable. To counter this, survivors could be given a simple discharge planning sheet that lists the complications and the resources needed to address the complications. I have developed treatment protocols that can be given to survivors in the first few months of discharge.

The creation of the support group indicates that change is possible. It is my hope that you are ready for the next step.

Best regards,

Kimberly Aikman

[Kyria Dylan]

I really enjoyed your post! I wish there were a million more people like you addressing this problem. No"Happy to be alive" is not what i want,iwant some quality to life and i was not told prior to surgery all or any of the possible side effects of brain surgery. So there was certainly no mention of how to deal with them. I will reply more later to your post just wanted to let you know 'Thank God for people like you'!!! Kyria Dylan

[ChrisC]

Excellent letter Kim! Congratulations to you for believing in yourself and working so hard to overcome all the difficulties you encountered! You are one VERY strong and determined woman! My hat's off to you!

Prayers that your support group continues to flourish!

[Craiger]

I too read your posting twice and found it most interesting. I can't help but think that maybe there is another side to your story.

Your ideas seem well thought out and organized on the surface. I can't speak to the medical validity of some of your claims since I have not done the research or have the medical background to either support or dismiss them. You oboviously beleive strongly that with your support and under your direction the aftermath of a rupture could be more appropriatley addressed. It surely seems on the surface like a noble cause that could possibly help many rupture sufferers who have deficit after the rupture to overcome them, or at least learn how to deal with them.

Having said all that, I'm at why not? Is there perhaps another side to the story that justifys the cold shoulder? Please don't take this as a "nasty" or "doubtful" post. The way you present it leads me to "why not?".

[FireflyR7]

That is awesome!! You are an inspiration!!

I can so realate to your story but, it has only been 2 years for me!! I was 45 when mine happen I have a very long complicated story and almost didn't survive my rupture. Had 2 surgeries for stenting and coiling.
I understand how you feel, I have been homebound for 2 years and just starting to get out. The Dr's DO NOT understand!!!! It has been very frustrating for me also, I too have been doing my own therapy at home!!

I wish I could send a letter to every Dr. in the world and tell them about all of us and to get a clue!!! I started to write a book, but my skills still leave a lot to desire and my eyes are terrible!! I am still sleeping a lot... I have a great Dr. that I found on my own, who has helped me so much! I was so until I found him and finally got relief for my headaches...

I use to be a firefighter until my rupture and now I am lucky to be able to do housework... My husband still has to help take care of me a lot, my sister had to come stay with me for over a year when hubby was at work. (He is a EMT, so that was helpful!!) They took such good care of me and tried to keep my spirits up!! I miss my old life so much!!! I am very happy to be alive, although there are some very rough days! It has been a struggle, I know I have a long way to go.

I am so sorry you have had to go through so much for so long!!! I know they didn't have near as much technology back when you had yours as they do now. They have a long way to go!! ESP. with aftercare!! Is the support group only available in TX?? Do you have a online group like this one?? I looked on the site and didn't see one?? I have nothing near me to go to, this is my support group. How can we help?
God bless you for what you are doing! I will be keeping you in my prayers!!

You are an Angel on earth and a inspiration! Tricia

[tink]

Kim, I read your AWESOME letter and my God I thought you were talking about me! I have been through the same thing. It took over 1 year and a change of doctors and hospitals to be correctly diagnosed with hypothyroidism, and they discovered that when my annie ruptured it destroyed my pituitary gland. I have had doctors that didn't believe that my head hurts and somedays really bad. They accused me of being a "drug abuser" or a "drug seeker" just because the only thing that seemed to help was percocet. I too have been through intense neuro-psych cognitive therapy and I am 100% better today then I was when I was discharged from the hospital. I do plan on one day soon returning to my job as an ER nurse. I say you should continue your support group. I would have given anything to have had someone to tell me what I was going through was normal. God Bless you for what you are doing. Tell those doctors to kiss you @#^!!!!
Good luck!

Lori

[Jeanne D]

Hi,
I admire your courage and your gumption. I tend to think that you were a very determined person before your rupture. One can only speak about one's own experience. Mine is different. Neither is right or wrong, just different.
Maybe sometimes one has to accept limitations and change. You can pray to be back the way you were before the ruptures, strokes and hospitalizations. Sometimes the answer is no. I am different and my road to recovery has been slow and gradual. Somethings I will never get back. I did not have all the physical complications that you had, but we all had a epic change in our lives. I have been fustrated, mad and depressed about this. I try to cope. It is hard to balance contentment with complacency. I try to aim in between. You sound very smart to me and I think you will find a way.
Jeanne

[JulieNH]

Kimberly,
Thank you for a great posting, I have walked in your shoes, so I can more than relate to what you've written, but all those Dr.s and all those dropped opportunities for correct therapy you mention in your posting are fighting words to the medical establishment. Neurological surgeons and interventional radiologists are trained to FIX the aneurysm. That's it. If it doesn't fit in that little box, they can't handle it. They can't or won't think beyond what they're surgically trained to do. They don't understand there's so much more. Every one of us who have survived a rupture have been told at one point in time or another by their Dr's how lucky we were to survive. I remember standing in my IR's office and saying OK, Great, I survived, NOW what. Tell me. I need to get past this stroke, get my memory back, get my life back, I will get my life back. I need to know how? And he stood there and looked at me and said it again. "I don't think you realize what the odds were, and how close you came to death, not once, but twice." And I stood there, with my husband and mother and yelled "NOW WHAT?" and he couldn't answer.

I, like you, had to find my way back, without guidance of my IR or NS, or the hospital I had surgery in (which was out of state, and perhaps this was 1/2 the reason the ball was dropped in my particular case) through physical therapy, through occupational therapy, through speech therapy, through my own version of games to increase my memory skills.... it was pure stubbornness that got me through this aneurysm, and I have fought to learn as much as I can about Aneurysm Disease, because I know I have another forming.

I am sorry that the medical establishment was frightened by your approach towards an aneurysm support group. I think you have much to bring to a support group, and no one says you can't do a support group in the Dallas area without Drs X and Y or Hospital Z. Sometimes the old adage about a spoonful of honey will catch more flies than a gallon of vinegar is hard to swallow, but true. I give you a lot of credit for speaking your mind and telling it like it is. Until someone had walked in our shoes, survived a rupture, a stroke, been told that we're lucky to be alive, been sent home to watch TV, and are expected to accept it, then they have no right to pass judgment on how we feel. PERIOD!

This web site is a Godsend, and every person who has a rupture or is diagnosed with an aneurysm or has the hardest task: being a caretaker or survivor of a loved one with Aneurysm Disease needs to know about this site. Knowledge and support of those with aneurysm disease is key, and we need to spread the word, any way we can.

Like Kyria, I'll write more at a future time.
JulieNH

[rmbing64]

I did not have a bad experience with my neurosurgeon. The only doctors we had problems with were the rehab physicians, who told my husband that I was lazy and unmotivated, because I was tired, vomiting and had severe headaches, when actually I had developed hydrocephalus that resolved after I had a shunt placed. My neurosurgeon actually called the head of the rehab center and filed a complaint about the condition I was in when I returned to the hospital. When I tried to thank him for saving my life and asked him why I didn't have any vasospasms, he said he wished he could take credit for all of that, but it was up to a higher power than himself. He also told me all SAH pt's should have their blood tested for neuroendocrine disorders within 12 months of a rupture, just to rule out any problems. Yes, I do have to ask for things (like restarting physical therapy) but they have always been extremely helpful and very responsive to any requests I have made. I am sorry you had such a bad experience. It sounds like they became very defensive, to the detriment of all involved. Good luck. Rose

[Gabrielli]

Kimberly

I was very impressed with your post and happy to see yet another person not willing to sit back and be told this is the best you're going to be. It's been three years for me two Annie's (no ruptures) but did have a stroke a month after the clipping. I was told at nine months where I'm at is where I'll stay.I had PT/OT/SP for nine months along with a leg brace and still push myself everyday asking why am I still having problems. I was always strong and did a man's job before all this and it's hard to dealing with the fact that I can't do the things I did before as much as I try I still have a bum leg.But I won't and don't sit in front of the TV or let people do things for me. Some people become victims of these Annie's and others survivors,I'm one of the survivors. Thank you for sharing your letter....

ooxx
mimi