The following material is taken from psychiatrist Dr. Louis Tinnin’s former blog. The material was removed from the Internet after his passing last year, but I think it’s important for the public to have access to it. I called Intensive Trauma Therapy, Inc. in Morgantown, West Virginia (ITT) and asked the staff to repost the material. I was told that Dr. Linda Gantt, Dr. Tinnin’s wife and colleague, who oversees this material is very busy attending to a multitude of issues since her husband’s passing, which is totally understandable. So I hope ITT doesn’t mind if I repost some of the material in the interest of helping those seeking answers to questions about trauma, lifelong suffering and the possibility of relief. The following material is excerpted from Dr. Tinnin’s former wordpress blog. I am forever grateful to him for his groundbreaking work, along with that of Dr. Gantt and the ITT staff, and their efforts to reach out to adult survivors of infant surgery without anesthesia who suffer from PTSD (Post-Traumatic Stress Disorder) and other trauma-related problems.
December 30, 2010: “How can one determine if present symptoms are due to surgery during infancy? Of course, there is no blood test for this. The usual clinical diagnosis of PTSD is not enough because the present symptoms might be described by other diagnoses, such as panic disorder or major depression. However, in the presence of chronic symptoms and a history of surgery during infancy, a trial of treatment may be wise. Answers to the following questions and discussion with a knowledgeable therapist can help one decide.
1) Did you have an infant operation before 1987? If so, what was it?
2) How old were you then, and how old are you now?
3) Do you feel it has affected you over the course of your life: constantly, only at times, or not at all?
4) How would you describe your symptoms or if no evident symptoms, then your quality of life in general?
5) Had you connected the operation with your symptoms, and if so how did you make that determination?
6) How long have you been aware of this connection? If not aware, have you suspected there was something deeper at work in your life that you did not understand?
7) Have you sought treatment and if so what kind? How did you feel about its effectiveness?
8) Was the operation ever discussed with you, as a child, as an adult? What importance did your parents or caregivers place on its possible long-term effects if any?
9) Have you ever considered suicide?
10) Do you believe your life can improve with proper treatment?”
Understanding that an infant surgery or invasive medical procedure may have caused PTSD or other related problems can in itself be healing. Many survivors sense that the early operation was traumatic and hijacked our lives, but because we have no information about this and were often told that we couldn’t possibly remember what happened to us so quit whimpering, we rationalize our pain or ascribe it to different causes.
When I learned that my PTSD symptoms could be due to my early trauma, an understanding about my life–depression, suicidal thoughts, lack of feelings of self-worth, and self-harming behaviors–clicked into place. The trajectory of my life made sense, and I felt a mix of relief, astonishment, fury, exhaustion, and shame. Overall, however, it was one of the most powerful experiences of my life, for the confusion over why I was not happy and had not achieved many of my dreams became absolutely clear. This clarity made room for compassion for myself that I’d rarely let myself feel. I experienced immediate healing and not only began to connect with others who’d suffered from early surgery and invasive medical procedures but also to succeed in my life in ways I’d never before been able to. While Dr. Tinnin’s questionnaire was not the source of my understanding of my PTSD roots,* may it help or guide those of you seeking answers. I welcome your comments and look forward to communicating with you.
*I learned of the connection between my PTSD symptoms and trauma from my early stomach surgery (pyloric stenosis) without anesthesia in the writing of my memoir manuscript, Autobiography of a Sea Creature – Coming Home to my Body after Infant Surgery, and researching infant medical trauma at the University of California at Davis campus medical library.
That’s fab Wendy. At least we are still sharing the info that may help xxx
It’s so important to keep getting the word out, isn’t it? Thanks for being part of this effort.
Thank you for republishing this foundational document for those of us who have battled with the ghastly ghosts that can be left after early surgery, especially as that was often done before the ground-breaking work published in the 1980s.
We continue to miss the kind and supportive presence of Dr Tinnin and his blog, and we respect the right of his team to pursue their own goals. But as you write, there will be many like you and me who value especially these 10 diagnostic questions: finding them was an “Aha!” moment for me, although I also had already considered that my private pain was the result of my infant Pyloric Stenosis having been dealt with without suitable anesthesia… 70 years ago today!
Wow, Fred! 70 years! I am so glad you survived and that you are an important part of my life. The 10 diagnostic questions are so seminal in my life that to this day, I keep them handy in my desk drawer. It’s easy to succumb to the “ghastly ghosts” and go into numbness. I have to keep reminding myself that my tendency to freeze and cut myself off from myself is rooted in infant torture, a torture that ironically and counterintuitively saved my life. Dr. Tinnin’s questionnaire affirms my struggle and reminds me that I am part of a forgotten tribe of folks who deserve respect, love, and perhaps most importantly, truthful information. I too ‘knew’ that my pain was due to early sources, but Dr. Tinnin’s questions gave me much-needed validation and witnessing. I hope the people who need it find their way to this information. It can be life-saving.
I too had pyloric stenosis surgery with no anesthesia at two weeks old in 1943. Throughout my life I have suffered with severe stomach problems, muscle pains beyond the norm anxiety, depression, hyperalgesia, paraesthesia, hyper vigilance, hyperacusis,vestibular disorder, panic attracts, levator-ani,vulvodynia, photophobia, tinnitus, dysphasia, night driving difficulty, sensitive to temperatures, burning tongue, difficult concentrating, fiber fog,bruxism, legs vibrating, heavy cuticles and osteoarthritis.
Only a few months ago I had the thought that all of this may have something to do with my early surgery and began to research. Not a lot out there but enough to make it plausible that is where my troubles began.
Thank you, Nancy Solove
Would appreciate any input or web sites you could recommend.
Hi Nancy, I’m so glad you found my website and wrote to me. I have suffered many of the conditions you listed, broxing or bruxing (gritting teeth, right?), hypervigilance, and depression in particular. My life got so much better gradually over time after I realized the extent to which the early surgery affected me spiritually, intellectually, emotionally and physically. Yes, you are onto the reason that your “troubles began” and so very brave for following the light of this insight. I have a lot of material on my past blog posts about many aspects of the effects of the surgery. My blog used to be called Myincision.wordpress.net and you can still Google it and find the material. But I did fold those blogposts into this new one. I’ve been blogging about this issue since 2009, so please check out the archives that are listed on the left-hand column of my blog. I write a lot about PTSD (which I have) and ways to cope with it through journaling, drawing, doing bodywork, and engaging in EMDR therapy (Eye Movement Desensitization and Reprocessing) which has helped me a GREAT deal recently. I also summarize books about trauma that I’ve read and discuss different videos I’ve watched that may be helpful. Books by Dr. Peter Levine, Dr. Bessel Van der Kolk, Dr. Rober Scaer, and Dr. Judith Herman have been of immense help. Also, the article written by Drs. Anand and Hickey was a big eye opener — the two who did the research convincing the medical community that babies DO feel pain (KJS Anand and PR Hickey: Neonatal pain and its effects http://www.cirp.org/library/pain/anand/). Dr. Bruce Chamberlain’s article (easy to read) is a must-read: “Babies Don’t Feel Pain: A Century of Denial in Medicine.” Google it. It’s on the web.
Fred Vanderbom has a blog that is a must-read called Stories of Infant Surgery. I have it listed on my blogroll, so just go to my blog and click on his link or just Google it. He writes a lot more about the literal physical ailments that pyloric stenosis survivors cope with over their lifetimes, especially stomach conditions. His story under “My Story” is wonderful. He too had pyloric stenosis surgery without anesthesia back in the early 1940s in Holland. He now lives in Australia. He too has been blogging about this issue since 2009. Dr. Louis Tinnin used to be a wonderful source, a psychiatrist who headed a clinic for healing trauma in West Virginia and wrote a book about trauma, including the issue of infant surgery, and wrote a blog about infant surgery without anesthesia. Unfortunately, after he died in, I think, 2014, his wife took the blog off the web, for she was overwhelmed with responsibilities for the clinic which fell on her. Also, the book is currently out of print, for she and her husband were updating and copy editing it for a second release. The website is Intensive Trauma Therapy, Inc. Google it. There is still some valuable info up there and the program, if one can afford it, would definitely help to heal the effects of infant surgery without anesthesia. I’ve read the book and his methods are, in my opinion, right on though I have not experienced them myself.
I hope this information helps. If I think of anything else, I’ll email. Write anytime. You can email me at firstname.lastname@example.org if you prefer.
Sending healing thoughts your way, Wendy
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Thank you for this. I had my first open heart surgery when I was one week old in 1981. I’ve always been very sensitive and had anxiety issues (mainly socially related) pretty much all my life, and finally fell into a deep depression after my last two surgeries in my teens. I’m still very much struggling with depression, anxiety, and body issues and am only beginning to learn about infant surgical trauma. A friend suggested that my issues might be due to my surgeries and even bought me a book about Complex PTSD to learn more. Initially I dismissed it since I never saw myself as suffering due to my heart issue – in fact I saw myself as very lucky for surviving and being able to be a normal kid in terms of keeping up and such – but perhaps she’s right. I can’t explain my problems and it’s been hard finding any information which is why I’m so grateful I stumbled upon this blog.
Thank you for writing. I’m so glad you found me. And have you found Fred Vanderbom’s blog as well SIS (Stories of Infant Surgery)? I hope some of the information on this blog helps you see that of course it makes sense that your depression, anxiety, body issues, etc. likely stem back to the preverbal trauma. I too struggled with coming to terms with accepting the extent to which the early surgery at one-month old influenced my life negatively, for I too felt grateful and lucky to have survived. I thought that feeling anything else was a betrayal of my parents and all those who helped me survive. But I’ve come to see how much grief, rage, and distress resulted from the surgery. Yes, my life was saved but the price emotionally, intellectually, socially, and physically was actually quite large. I did not suffer physically afterward but had PTSD all my life from this operation and did not even know it until I hit my 50s. I have gone through depressions, suicide attempts, and extreme anxiety, which I write about. I’ve figured out many ways to find my way to a better place. I hope my posts are useful to you. Recently I’ve been doing EMDR (Eye Movement Desensitization and Reprocessing) to unhook myself from the early trauma and create new neural pathways so that the anxiety, fear, and terror diminish; it has helped tremendously, especially is getting in touch with compassion for my early self as a baby who experienced so much suffering and isolation. As a child I learned to deny my pain and service the adults around me, soothing them and ignoring my truth. Preverbal trauma is such a secret in our society and little is public, but more and more people are realizing that what happened to us in these critical early years matters; advances in brain science and neurobiology are helping us understand the way that our brains, emotions and bodies were altered due to preverbal trauma. Are you in California? I live in Sacramento and am teaching a class at the end of June in Writing as Healing, in which techniques to cope with and heal from trauma will be shared and practiced. In any event, I’m so happy to hear from you and encourage you to write back if you’d like to ‘talk’ more. Please tell me more about yourself if you like. Wishing you well, Wendy
Thank you so much for replying, Wendy. Yes, I have found Fred’s blog; I read quite a bit of it yesterday.
I’m in Sweden actually. I’ve been trying to find information regarding infants not getting anesthesia in my country but haven’t had much luck. Do you know if the 1987 cut-off is true for most countries, or is it specific to the US? I supposed I could ask my cardiologist but I’m rather afraid to. I haven’t been able to go see him in almost 10 years due to my issues. I used to take pride in being a ‘good patient’ who always did as told and never complained even when it hurt, but now I’m constantly cancelling appointments and skipping my regular blood tests. I’ve gotten better at the latter – I take them about once a month – but I completely stopped for almost 3 years and I still have times where I put it off for weeks. I can’t really explain why. I guess partly I’m ashamed of what a failure I am after all the time and effort that went in to saving my life. I’m unemployed and very isolated. I hate my body and see myself as fat and ugly even though people tell me I’m not. I’ve had eating disorders and still struggle. As I gained weight as a teenager, doctors and nurses would comment on my body, saying I needed to lose weight, while my mother agreed. It was humiliating, and disheartening that they spent more time on that than reassuring me and giving support before the surgeries. I remember being wheeled in for my last one and my teeth were chattering from fear even though I’d been given a sedative.
Besides depression I also began experiencing severe migraines after my second surgery and got next to no support for either. The migraines are better now thankfully but I still need medication for them.
I’m not sure what else to write. To be honest I feel silly for thinking my first surgery has impacted me at all since I don’t remember it, but at the same time I know it was a big event in my life yet I know so little about it. There’s even an article about it, but only the abstract is available to the public: http://www.tandfonline.com/doi/abs/10.3109/14017438309099350. My mother claims not to remember much due to the stress at the time so I don’t know if she would be of much help. I’d be embarrassed to ask her anyway as I feel like I’m being self-absorbed for wanting to know about myself. I’m not sure if I’m making much sense anymore. Either way, thank you again for the reply and this blog. It’s given me hope.
Cecilia, You say you do not remember the surgery. Well, of course you don’t–not in the typical way, with words. But you do remember, if you don’t mind me saying so. You remember the way I remember, and tens and tens of others remember–through body memory, emotion, sensation (visual, tactile or touch, auditory or hearing). You remember through the way you’ve trained yourself to breathe–breath memory, for you probably tried to control the pain through controlling breath. Certainly you have somatic memory–our nervous system remembers. We have neural pathways that were created due to the trauma. As a result, we hold our bodies in different ways in order to survive and protect and cope. These behaviors hang on unless we work with them. Perhaps paradoxically, these types of memory are also the phenomena that can help us find our way back to ourselves. They are like bread crumbs on the trail. If we follow them, we’ll arrive home. Furthermore, when we experience trauma, our frontal cortex goes offline so to speak, so that the amygdala is recording the journey, that part of the brain dealing with trauma, to say it simplistically. The key is to hook the amygdala’s story up to your now verbal self so the real story you discover will heal you. I hope you can find the support you might need to listen to these more ‘silent’ cues. You must be experiencing some of them or you wouldn’t be writing and searching for answers. Certainly, I can relate to your shame and depression. For myself, I had to leave pleasing others behind–and yes, causing them pain–in order to follow the bread crumbs and take back ownership of my life. I’ll click on the link you provided a bit later and then email again, but I just wanted to get back to you as soon as I read what you wrote. I don’t know about the “cutoff” but asking your cardiologist might not give you the answer. Often, the surgeons themselves did not know what the anesthesiologist actually administered. Fred, who I mentioned before, might know since he was born in Holland and was operated on there at ten days old in 1946 and has done a lot of research on this. There are many variables, such as being operated on in a rural hospital or urban and the types of trained anesthesiologists available. Yours was done much later but before 1987. And yes, Europe would have been different. I urge you to email Fred through his Stories of Infant Surgery blog (SIS). In any case, you are very brave for considering the origin of your troubles to be your early surgery. You have begun a journey for which I hope I can be of continual support. Wendy
Hello again, sorry for the very late reply. I just found out that these methods were used during my first surgery but don’t really know what they mean, perhaps you do?
“The operation was performed on the seventh day of the infant’s life, using standard extracorporeal circulation, moderate hypothermia (30°C) and cold cardioplegia (Ringer’s solution with potassium).”
Interesting reading. I had heart surgery at 23 months for a PDA in 1974. I am going through lots of issues right now, but i have always been hypervigilent.
Yes, the hypervigilence is common, it seems, in those of us who’ve had infant surgery or infant trauma of some kind. Have you read my post about Jill Lawson, whose son died from a PDA? She’s the parent who discovered that her son had not been given pain-killing anesthesia for the procedure and who made a public case of it, appearing on talk shows and writing articles protesting inadequate pain relief for infants who had this procedure and other types of interventions and surgeries. Just put her name into the search box on my blog and the post(s) will come up. Or Google her. Pain-killing anesthesia in America began to be used more after 1986. Do you know about your own history with anesthesia for the procedure you endured? Thanks for writing and hope post helped.
Wow. i came across your site in the midst of reading “healing developmental trauma” by Heller. this takes it to another level – your resources are good, but this is amazing. i was born premature in 1970 and put into an incubator, given a staph infection by the nurse subsequent antibiotics (wrecking gut flora and immunity), not breast fed, and then given 3 vaccines at once. i have long story too – and this “shock trauma” at birth set me up to be more suspectible to injury from vaccines – i’m now moderate severe ME/CFS (from 22 vaccines in peace corps in 1996) almost bed bound even after decades of trying many things to heal…and am getting ready to embark on a neural retraining program. it makes such sense to me on a deep cellular level…I will get your book and I will be writing my own opening up so much medical harm and deceit all in the name of profits.
Hi Susan, So sorry it’s taken a while to get back to you. Sadly, my book is not yet published but am seeking a publisher. About the neural retraining program–sounds good. I’d like to know more about it if you feel like sharing about this. I’m sorry about the trauma you experienced as a baby and I’m glad you are finding your way to information and treatments that will help. This preverbal stuff sets the stage for so much of our future lives. If you don’t mind my asking, what did you mean by “your resources are good, but this is amazing.” What did you mean by “this”? Hope to hear from you.
and these stories break my heart! i forgot to say this book, he mentions that the AMA didn’t recognize infant pain until 1988! this is madness to me. and then i went on a search b/c i don’t know what happened to me in that incubator…except infection in my belly button (the core connection with my mother).
Do keep searching. You are right on track. Yes, it’s crazy that the AMA denied babies’ ability to feel pain.
Hi, what an eye-opener this is. Thank you for sharing! Having just read an article in a history magazine, I was in disbelief that babies did not get anesthesia until the mid-eighties so I started doing some research. The reason I wanted to know is because I was operated in early 1977 when I was between 3 and 6 months old. I suffered from white-coat anxiety until my thirties and did at several occasions in my youth run away from doctors (even walking in the snow for 2 hrs). I always associated this because I was apparently left in the hallway for nearly 12 hrs on my own (a severe accident had happened) before the procedure started.
I have always thought this might explain my fear of abandonment (and commitment) but did not remotely realize that the operation itself could have left traces. I am now 41, have absolutely no self-confidence, am on the verge of my third burnout. My depressions (for which I have been hospitalized twice and treated for over 12 years) are currently being suppressed by several antidepressant, anti-anxiety and other. No treatment has ever helped. With this new information (that the operation may have been performed without anesthesia and that several people who underwent the same suffer from PTSD) I think I may address the subject with my therapist (I haven’t gone in over a year because it just felt useless).
Wishing all of you the very best!
Hello Anne, Sorry I haven’t replied sooner. (computer issues) You are on the right track. I am so glad you found your way to this information. I too have experienced depression in my life. I tried to kill myself several times and it took a lot of therapy and crying to reach some stability. I had so much grief built up over two decades and simply had to feel it. Grief over the suffering of my early trauma, grief over the trouble I put my family through, grief over having a scar on my belly. So by my early thirties, I had found some grounding. Now I’m doing EMDR (see posts) and healing on deeper levels. Yes, abandonment issues my whole life too. I hope you will find healing given this new understanding that you have. Please feel free to let me know if you are finding relief and gaining insight. Wishing you the best as well.
Do you have a link to the Chamberlain article? I’ve tried googling and my school library but it keeps coming up blank
I found it here: http://members.tranquility.net/~rwinkel/MGM/blog/chamberlain.html
Hope this helps!