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Living with chronic depression

Wednesday, February 3rd, 2010



Chronic, severe depression. Medications. Suicide Attempts. Therapy. Hospitalization. Tara Aliotta, 50, of New Jersey has battled depression since she was 11 years old, and the illness has wreaked havoc on her life. She has tried many different approaches to overcoming depression, but so far, nothing has made a difference in her life.

Now she is attempting what she calls her “last chance” at getting better. In May, Tara underwent surgery for “DBS” – Deep Brain Stimulation. DBS is a surgical treatment involving the implantation of electrodes into the brain, which send electrical impulses to specific parts of the brain. This is part of a study by the University of Pennsylvania.

On this site, you can follow Tara’s journey and see if this dramatic step will pay off for her.

April 2011 Tara returns to Pennsylvania Hospital to have the electrodes taken out. They have been shut off for two months, and Tara experienced no difference in mood. She talks about the end of this difficult road, her own disappointment, and what’s next for her

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Dr. John O’Reardon discusses the overall results of the DBS study, and what areas researchers will study next.

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October 2010 Other patients in the study are seeing results from DBS. Kiara has suffered from a severe depression that derailed her life for many years. At first, it didn’t seem like DBS was working for her either. Then one day, during a session with Dr. Bhati, he changed the settings, and things started to improve:

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October 2010 Dr. John O’Reardon and Tara Aliotta have not seen much change or improvement in Tara’s mood. She has had known stimulation for a year now. Here, they discuss what’s next:

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June 2010 Tara’s situation continues to be difficult. She is still living with her parents, and her father has not recovered well from his surgery. He is typically the caregiver and pillar of strength in Tara’s family, and his current frail health has put a lot of stress on everybody.

Tara is not seeing any improvement from the DBS so far, but together with Dr. O’Reardon, she continues to look for new options.

Hear the conversation with Tara and Dr. O’Reardon:

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Tara during her session with psychiatrist Dr. Mahendra Bhati.

Tara during her session with psychiatrist Dr. Mahendra Bhati.

March 2010This time, I met Tara during her session with psychiatrist Dr. Mahendra Bhati. He is the “unblinded programmer” for the study, which means he meets with patients and programs the types of stimulation that’s delivered through the deep brain electrodes. He asks them questions about how they feel, and changes the settings on their electrodes accordingly.

Here, Dr. Bhati talks about the study and his work:

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Here, Tara talks about how she is doing. Her father has had surgery, and life has been difficult:

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IMG_1277February 2010 Tara is now several months into the active phase of the Deep Brain Stimulation trial at the University of Pennsylvania. During the first (blind) phase of the study, neither Tara nor her doctors knew whether the electrodes in her brain were turned on. She did not experience any benefit during that portion of that study. Now the electrodes are definitely turned on, but Tara is still not experiencing improvements. Her doctors are working on optimizing the settings, and also changing her medications.

Listen to the interview with Tara and Dr. O’Reardon

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December 15, 2009 Tara Aliotta is now in a new active phase of the DBS trial.

Until October, she was in the blinded phase of the research study. During this part of the research study, some participants’ devices are turned on, others’ are not. Participants are seen by their doctors consistently, to monitor improvements, which allows researchers to track if the DBS can be credited with improvements if there are any. Neither Tara nor her psychiatrist, Dr. O’Reardon knew whether the electrodes in her brain were turned on or off.
She experienced no improvement during this three-month phase of the trial, and said it was a very difficult time for her and her family. She stayed on her usual regiment of anti-depressants.

She got through this time in hopes that as soon as she entered the new phase of the study, things would change for the better.
Now Tara is in the active phase of the trial, the devices have been turned on for sure, and doctors are trying to optimize the settings on the electrodes for maximum benefits. So far, Tara has experienced no benefits, and is very demoralized at this point. She has had to stop working, and has moved back in with her parents.

Dr. O’Reardon is hoping that it’s a matter of finding the perfect setting for Tara, and giving the device some time to start working for her.
Tara is trying to make it through this very difficult time.

I will meet up with Tara and Dr. O’Reardon in early January.

June 22, 2009 Tara has entered the next phase of the study she is participating in. After recovering from brain surgery, she is now in the blinded portion of the study. This means neither Tara nor her doctor, psychiatrist John O’Reardon, know whether the device that was implanted into Tara’s brain is turned on or not.

Half of the people who are participating in the study will have their devices turned on, the other half will not.

I met up with Tara at Dr. O’Reardon’s office last week, right before this phase of the study was going to begin. The blinded phase will last 16 weeks, and after that, every patient’s device will be turned on so that they can experience the potential benefits of the procedure.

After talking to the principle investigator in the study, Dr. O’Reardon, we decided to not post any interviews during this blinded phase, because our discussions could compromise the study.

I will be in touch with Tara throughout this period, and we will resume our reporting on her story in October.

This is the last interview with Tara until the blinded phase has ended. Listen:

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May 14th, 2009 Ten days after her six-hour brain surgery, Tara continues to recover at her parents’ home, and will be off from work until July. At the earliest, the device that was implanted into her brain will be turned on in early June. She says while it is not in her nature to be optimistic, she is hopeful that the surgery will pay off.
Maiken Scott spoke with her on the phone. Listen:

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May 6th, 2009 Tara Aliotta spent the first day after her operation in intensive care, and will spend one more day in the hospital. Since she is participating in a research study she won’t know if she will be in the control group, or in the group of people whose brain stimulation devices will be turned on. If her device will be turned on, it won’t happen until the beginning of June so that she can fully recover from surgery. Maiken Scott visited her today:

Scott: Tara is recovering from surgery and seemed in good spirits. I had brought my camera but didn’t feel comfortable asking her if I could take a picture. She looked fine, but her eyes were swollen, and there were two bloody marks on her forehead, as well as two stapled scars on her head. All of this will disappear, but the question is whether her depression will fade along with the scars from the surgery. She seemed happy to see me, and remembered several parts of her surgery. Everybody participating in the study will get their brain stimulation devices turned on eventually, but for the first few months of the study, they won’t know if their device is on or off. Tara said she is looking forward to going home, and is hopeful that all of this was worth it.

Interview with Tara post-op–Listen:

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May 5th, 2009: Dr. Gordon Baltuch called yesterday afternoon to say that Tara Aliotta’s surgery went well. Tara will be in the intensive care unit for the next two days.

Dr. O'Reardon speaks to Tara Aliotta prior to surgery

Dr. O'Reardon speaks to Tara Aliotta prior to surgery

May 4th, 2009: Dr. John O’Reardon is a psychiatrist with the University of Pennsylvania. He is the principal investigator for the DBS study, and has worked extensively on other new approaches to the treatment of depression, such as Vagus Nerve stimulaton and TMS, transcranial magnetic stimulation. He spoke to Maiken Scott the day of Tara’s surgery, and described how DBS works:

Listen:

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Story: Testing a new approach to treating severe depression
Maiken Scott – May 4, 2009
A study at the University of Pennsylvania is evaluating if a surgical procedure could help people who are suffering from severe depression.

May 4th, 2009: Dr. Gordon Baltuch of the University of Pennsylvania Health System performed the six-hour surgery to implant the electrodes into Tara’s brain. Before the surgery, he explained the procedure:

Listen:

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May 4th, 2009 Tara arrived at 6 AM at Pennsylvania Hospital for brain surgery. During the procedure, electrodes will be implanted deep into her brain, in hope to stimulate areas that are not functioning correctly. Maiken Scott spoke with her and her mother before the surgery:

Listen:

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May 1st, 2009 Tara came to the WHYY studios before undergoing a series of blood tests at Pennsylvania Hospital. She talked to Maiken Scott about her history of depression, and what her life is like living with this disorder.

Listen:

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46 Comments

  • jennifer iezzi says:

    tara i was in the hospital with you last year my room was right across the hall from your room and i have always wondered how you have been i havent been doing well either i was approved for the vagus nerve stimulation surgery but medicare wont pay for it so they have been stringing me along for a year and i desperately need the surgery my depression is very severe if you ever want to talk i am on facebook i know what you are going thru thanks

  • Sorry it has been a while. Keep in mind please I am off my Antidepressants, so that in 2 Weeks I can try an older Medication I have never been on.I still have tranquilizers(PRESCRIBED).
    Today, just like yesterday I wish I were dead. Since the time I was 11, my mother has threatened Suicide. It wasn’t just words. She acctually would take an overdose. My Dad and always me,(I am the Oldest of 4 Daughters) either by ambulance or a fast ride to the ER.
    At each Qverdose, I swore I WOULD NEVER BE LIKE HER!. My Father was a Workaholic. He spent time with her, than He would tell me to stay with her all day. She was out of it. I just sat by her bed, feeling worse every hour. My Dad was unaware of the emotional toll it took on me and my sisters. There would be a List of Chores we had to do when I came back. We were like little Soldiers dusting, mopping,sweeping.
    From Grades 9-12 on average I missed 30 days of school a Year. I guess in the 70′s, and given my respectful and obedient nature;as well as the Guise of being in prominent Family.
    The reason I was kept home was to watch my mother. To prevent another overdose..
    Suprisingly, I was consistently on the Honor Role. I would say my sisters and I were done a diservice. There was no Family Therapy, nobody to explain what was going on with my Mom,just Fear and Sorrow . Since I was the oldest, I was responsible for making Dinner and taking care of my Sisters.
    From 12 on I kept Journals on my feelings.
    Most of my Pages consisted of Suicide notes. There was no Happy notes. A few times, for no apparent reason, I became hysterical, I couldn’t stop crying. The School Secretary would call my Dad at work and He would send someone to pick me up, if He couldn’t leave the office. Funny thing noone at School (Adults) would ask any Questions. I met my future Husband at 16, married when i was a sophmore in College with the promise to My Dad I would Graduate College.
    In between, I was at Carrier Clinic in Belle Meade, NJ for 6 Months. I was threatened with Commitment. I was 56 lbs, 5ft.2 in. and it was my first visit to the DREADED Psch. ward. I also followed up 3 Days a Week with a Day Program.There is no cure, but I am in RECOVERY for a good 20yrs.
    Then about 5 years later I was Admitted to th Institute of Living in Hartford Conn.I was there 2 and 1 half years. In between Carrier and the Institute I attempted Suicide.This outlines my wasted life. From 18 on I consistently saw a Therapist and took Medication.
    In between Hospitaliations, I got a Master’s in Education, and became a Certified Guidance Counselor.I taught for a few years.
    My Divorce after 7 years after of Marriage and my Tubal Ligation were done to protect my ExHusband. I was very sadly cognizant that I was Mentally Ill, JUST LIKE MY MOTHER.(I SWORE I WOULD NEVER EVER HAVE DEPRESSION) And I couldn’t bring an Innocent Child into this world Knowing about severe Depression and how it can affect a Family.
    My EX was a decent person, he tried at times. Mental Illness can ruin a Family. At 56lbs I surprised him by telling him I wanted a Trial Separation. As strong as He was. I had to save him.2 Days after the Trial Separation was notarized I served him with Divorce Papers.
    Why am I wasting anyone’s time? I had to react when my mother after 15 yrs, was admitted to the Psch Ward at her local Hospital for Suicidal Ideation/ I have been living with my Parents for 8 Months. I know I have to get out, it’s Hard(money issues
    I keep saying how easy it would be to take a bottle of pills or 2.I so much want the DArkness to cease. I want peace. I see no future.
    My Father has always been there, He tries.When I wasn’t supposed to be working per my Doctor, He called me at least twice a day. I know He loves Me. But as He has stated, Between my Mother and Me, He has had it! I feel so guilty for this illness. I want to close my eyes.
    21 Shock Treatments, the Vagus Nerve Stimulator, and DBS within the last 3 Years, and still no relief.My Doctor and my Programmer Doctor,, as well as a talented Social Worker all trying to put me back together again. I have heartful appreciation to all of them. Sorry if I misspelled any words, just too upset to check. God Bless you for listening

    • herb says:

      Dear Tara,

      I read your very moving posts unfortunately with much understanding and compassion for you but from a different perspective. Joyce, my spouse and I will have been married 47 years this August. I have been the support person and health care advocate for my spouse.

      I also appreciate your acknowledging through your experiences and intellect an understanding of the extremely difficult role one understands as that support person but in your case also from a dual perspective. And yes as you also know the difficult tolls it takes on one’s children. Our only daughter although fortunately she was adopted has not gone un-impacted by her mom’s illness although we do discuss these issues.

      In any event, I do care about you and read your thoughts very carefully. Also in doing so you’ve now raised a technical question which I’d appreciate if you would care to address.

      I have maintained collaborations for more than a decade with a number of study patients originally implanted with VNS for Depression as Joyce was one of the earliest study subjects. After some 36 years and a number of suicide attempts the VNS has proven beneficial for her. Knowing as I do this was not true for a number of other patients one of which was also able to enter the DBS study at Columbia in NY. One of those other unsuccessful VNS patients went on to try rTMS with Dr. O’Reardon which now brings me to my question.

      I know VNS patients can have rTMS. I know this fact as I’ve collaborated with the patient, Dr. O’Reardon on this subject and also with Dr. George at MUSC but I never got around to inquiring about rTMS with DBS. Can DBS patients have rTMS and have you discussed and/or considered this alternative therapy option with Dr. O’Reardon? I raise the question as this unsuccessful VNS patient with whom I collaborate has been receiving a degree of efficacy from rTMS.

      I would also like you to know in my eyes you are anything but a failure. You are remarkable and an inspiration. You are truly to be admired for your courage, fortitude, perseverance and intellect despite your early familial difficulties and challenges and worse yet the additional scourge of this heinous and debilitating illness. And despite these challenges being able work and obtain a Master Degree; unbelievable. I do understand how this illness robs individuals of their self-worth and worse yet their lives only the mirror reflects you’re image to me with a significant difference.

      Only I have a need tell you I truly admire all those qualities I previously to which I’ll extend my additional admiration for sharing your life and these experiences with me and being a guinea pig for others to learn and educate themselves while also encouraging hope and persistence.

      It took Joyce and me some 36 years to find something that gave her some relief. I can only implore you from a distance to please not give up. The answer for you I truly believe is out there and hopefully with the help of compassionate, caring and knowledgeable physicians such as Dr. O’Reardon you too will obtain your answer.

      If you feel up to it and would like to chat by telephone please email at vnsdepression@gmail.com and we could exchange telephone numbers. I’d be more than happy to call you if you’d like and if it would be any comfort to you. I also know there are others reading this forum and some participating on this forum that along with me who send our heartfelt best wishes your way.

      Warmly,
      Herb
      VNSdepression.com

    • Kathy G says:

      Dear Tara,

      I cannot express the admiration for you that I have. Through all of this, you have the courage and conviction to share your story with others. You are truly an inspiration. I truly hope and pray that your relief is coming soon. I know that this will all be worth it to you when you are finally able to have your vacation from the pain and truly enjoy what life has to offer. You are an amazing woman to be suffering so much pain and yet so selfless to take the time to make many phone calls giving accolades to those who try to help you. Your recognition is greatly appreciated and you hold a special place in the hearts of all those around you.

    • Denise says:

      Hi Tara,

      I just want to tell you that I know two people who both have been on a study of DBS for depression. However, the trial that they are on is stimulating to different parts of the brain.

      As far as I know for the first year only one spot was targetted and they both felt worse for a while and then not much better. However, during the second year when another part of the brain was targetted they both had felt a huge improvement. One of the people I know is now going out and doing things and enjoying life where before he never left his house.

      It might be that they just need to find the right spot and the right parameters for you, so don’t give up hope.

      I suffer from suicidal depression and anxiety when I stop my medication and to be honest medication doesn’t really help me to enjoy life like I used to so I would consider this operation myself. I’m 44 years of age and I really don’t feel as though I have much to lose.

      Denise

    • herb says:

      Dear Tara,

      I hope this note finds you doing better.

      It has been awhile since you last posted and you are in my thoughts. I would appreciate if you would care to share with me your recent mood state, treatment regimen and any thoughts you’d care to share.

      I’d like to wish you and yours and all those reading my post; Seasons Greetings and a very Happy, Healthy, Peaceful and Prosperous New Year.

      Warmly,
      Herb
      vnsdepression@gmail.com
      http://www.vnstherapy-herb.blogspot.com/

  • Tara says:

    I am sorry for the delay.Just a brief note.
    On June 8,2010 I had the surgery to change the two batteries located in my chest. The wiring travels up my neck going into my brain. I am at a loss for the correct medical terms to describe the whole process,please forgive me.
    Honestly I don’t feel any different, I still think about suicide every day. I just try to take it day by day.
    The only positive {but not really] is the extreme Depression that occurs when they shut down the device. You see my depression takes two forms,very low to very ,very low.the device is shut down to allow the doctor to change settings.When the device is turned off even for a short time the bottom of the barrel, lowest ebb of depression which is almost unbearable occurs.I have exprienced this feeling many times before DBS and after DBS. When it gets unbearable I retreat to my bed, and sort of hug myself and pray that desperation ceases.
    The rationale that made me go forward with the battery change is that I desperetly have to hang on to a thread of hope with this DBS. The thread is wearing thin.
    And again I have extremely dedicated doctors.Quite honestly I am at a loss as to how to plan a future.I pray I make it day to day.

  • Tara says:

    Memorial Day allows us to offer respect and honor for all the troops fighting presently and for those veterans whom have fought in the past.

    Yet I am still in the darkness,the shroud of depression . You view barbecues and people that
    are having fun on TV. I am an alien to that culture.
    Many times lying in my bed I feel the torment of Depression. Often I feel paralyzed. I hate myself and my existance and what it robbed from me .My parents have unselfishly opened their home to me due to financial constraints. We know it isn’t the ideal situation.
    Honestly I am not feeling sorry for myself.
    Depression wreaks havoc on your life.
    I sincerely hope those traveling in the darkness feel some relief.

  • Tara says:

    Apologies for the poor spellig qnd grammer. It is early, and I hit “submit” too quickly

    • Denise says:

      I just found this article on the web and was wondering how much truth there is in it. I am also wondering if they have looked at your scans for this Tara?

      Electrode implants which zap areas of the brain have mysteriously helped ease the symptoms of crippling diseases such as depression and Parkinson’s. Now brain scans could help predict who exactly might benefit from deep brain stimulation (DBS), based on seeing which interconnected regions of the brain “light up” at the same time, New Scientist reports.

      A new fMRI study showed that deep brain stimulation treatments seem to work by affecting a whole networked array of brain regions. Scientists focused on the subgenual region of the brain that tends to become hyperactive in people suffering from depression.

      Patients whose condition improved because of the electrodes in their heads seemed to have a connection between the subgenual region and a part of their prefrontal cortex. By contrast, patients who did not benefit from DBS treatment had a connection between the subgenual region and the amygdale — a part of the brain related to fear and other emotions.

      The study, conducted at Emory University in Atlanta, may do more than just offer treatment to more people — it has helped further our relatively paltry understanding of some of the brain’s most complex internal processes.

    • Denise says:

      No problem Tara. Still hoping you will start to feel better soon.

      Denise

  • Tara says:

    Depression How it ruins a Life?
    For the past 15 years, I was something of a Workaholic. All my energy, as an Event Manager went towards the most important goal.
    My DBS was in early May 2009.When We went through the Blind Phase, I kept saying “Hold yourself together till we get to the Unblinded Phase: . On 10/30/09 I could no longer perform at Work. I was Suicidal. I was admitted to the Psych Unit for 10 days. I figured I would be back at Work by Dec.2009.Iam 51 years old I always prided myself on my independenc. Well it is early April 2010. My Parents were unselfish enough to invite me into their home.
    I loved my collegues. My Boss was very caring and empathetic.Naturally my job could not be held for me. Which is totally fair. The Family I worked for was incredible! If I ever get better, it would be a privlige and honor to retain to retain my position. At 51 with a Masters Degree , I feel like such a Failure. My Doctor tried almost from Feb. 2007 urged me to stop working. In Oct. 2008, I really felt I couldn’t do the best job at this point. I felt that it was unfair to my employer.
    Well the presnt, I spend alot of time in my room at my Parents Home.I think about suicide every day. I see Dr. O’Reardon every 2 Weeks and Dr. Bhati. They are always acessible by phone. As God is my witness BeliI
    My financial position is not great. I am waiting for possibly being accepted Medicaid. I have zero in Savings. As I reread this passage I feel more like a Failure. Let’s face it who wants to say at 51, I am living with my Parents.I am extremey appreciative that I have a place.
    I love my Parents dearly, but it isn’t .
    easy for either one of us.Dating, in fact social.Situations are. almost non existent. I wish I could say “That was then, this is now’and end with a Happy Ending, like a Child’s Fairytale.
    Believe me I wish I could handle a Job and a private dwelling.I take all my Meds daily. I realize I am fortunate to have a Place to live.The Demons won’t leave me alone. They came with me! All the best to all inhabitants in the DARK,Tara

    • Denise says:

      Tara,

      Just want to say that I still remain hopeful that you will find something to take away this horrible pain.

      You are not a failure, if anything you’ve done very will in very difficult circumstances. There are a lot of people out there who would be considered successful but they have not had to battle with what you’ve had to battle with every day.

      Denise

      • Tara says:

        Dear Denise,
        I sincerely appreciate your kind words.It is difficult for me to think of myself as anything but a failure. But thank you so much for your encouraging wishes. It means alot.

        Tara

  • Tara says:

    Yes, I still feel suicidal every day. I feel desperate for the pain to end. I sleep alot.
    DBS was considered my last chance.The special Doctors and their awareness, compassion and talent,has made me feel comfortable.
    Back to the thesis. I have never felt pressured,or rushed, or that I had to follow a regimated protocol. Dr. Bhati,& Dr. Connolly always interested in my reactions, I feel extremely Blessed. Dr O’Reardon can really see your pain. One Day at a Time, But now it is 1 Hour At a time.Prayers and good wishes to those that understand the DARKNESS

    • Denise says:

      Tara,

      Your doing a great job of updating this site considering everything you have been through and are still going through.

      I’m sorry it’s the DBS is not helping you yet. I did hear of somebody who didn’t respond until at least six months after the stimulators wre turned on so there is still time.

      I’m keeping my fingers crossed for you. Who knows, it may be that they just haven’t found the right spot and the right parameters for you yet.

      Denise

    • Denise says:

      Tara,

      One more thing, you can tell just by the way you talk about him, that your Doctor is a very compassionate man and it’s good that you have him to keep encouraging you to keep trying.

      I know from my own experience that with depression and anxiety, that you completely lose all hope and sometimes it helps just for somebody else to believe that things will get better for you even if you don’t believe it yourself.

      Denise

  • Tara says:

    Denise,
    I hope you can keep up with my scattered pieces.
    My main objective was to dispel any feedback about the DBS that was, negative.
    The other crucial feature, is any discomfort I
    may feel whether with the programming,or interview Dr O’Reardon or Dr. Bhati are extremely,
    receptive to all my emotions. The minute I feel uncomfortable, the settings are changed to a better range immediately. Meds are changed as needed. After the Settings are changed You must wait 1/2 Hour to insure you are tolerating the new settings. I have a tremendous Medical Team. Yes I am not happy with my lack of progress

  • Denise says:

    I’m sorry to hear that Tara has not yet experienced any improvements from the DBS.

    Are the Doctors really going to see if they can optimise the settings for Tara or do they have to follow a rigid protocol whereby they only change the settings as and when the protocol dictates. This seems to have been the case for other recent trials for DBS for depression. I get the impression that there is a procedure that has to be followed and that each month the settings have to be changed to specific parameters and these are the settings that are applied regardless of the patients feedback.

    Denise

    • Tara says:

      Dear Denise,
      I appreciate your comments.My experience at the University Penn. has not been a rigid course of directives.Truly when you arrive for
      your visit, You are greeted warmly by
      Sarah and Murat, Part of Dr.O’Reardons
      exemplary Team,
      The next step is an hour interview with Medtronics via web cam

  • Denise says:

    It’s now late January and there hasn’t been an update. Will there be an update soon?

    Denise

  • herb says:

    Dear Tara,

    I wanted to take this opportunity to thank both you and Maiken Scott for this very important effort to educate and share with others the potential of this newer neuro-modulation treatment option for MDD (Major Depressive Disorder).

    As a very, very long-time support person and caregiver of more than 4 decades to my spouse I am well aware of the heinous nature, pain and anguish severe depression deals it recipient.

    I wish there were guarantees of efficacy from this therapy or any others but what I have come to learn through these many years is that there is only potential efficacy along with potential side-effects from this and others therapies and it is individuals like you, me and others who have taken of our time to share our odysseys so that others may learn to be better informed in order to make un-coerced medical decisions in collaboration with one’s trusted, knowledgeable and licensed health care practitioner while at the same time encouraging hope.

    Although my spouse participated in a different neuro-modulation therapy it is now 10 years since that initial event and it was some 36 years into her suffering that her therapy has proven truly remarkable based upon her lack of symptoms as well as my observations and subsequent reporting.

    As I have for these many, many years I can only encourage you and others to please not give up and to keep trying as best as one can as I thank you once again for sharing with me and others.

    I wish for you all the good that you would wish for yourself.

    Warmly,
    Herb
    VNSdepression.com

  • Maiken Scott says:

    This message is from Pete, who had trouble posting a comment:

    I just wanted to say thanks to all the people who’ve posted on this page – I think it’s important that people share their experiences so that we can try and learn from each other.

    I’ve been implanted in the UK study – which has actually implanted 2 separate sites – Both the Brodman Area 25 (BA25) – also known as the Subgenual Cingulate, as well as the Nucleus Acumbens. I’m now in phase 2 – which means the 1st site has been on and is now off – & the 2nd site has just been switched on and had an initial adjustment.

    So far I was actually worse while the 1st site was on, but now have had at least one “breakthrough” day with the 2nd site, and am hoping that the last adjustment will take effect and make some difference soon.

    Also – there’s a Google board dedicated to this kind of discussion

    Pete

    • Gen_Eric says:

      Can you post the link? Or give us a little more info, so we can find it?

      Thanks!

      • Gen_Eric says:

        Never mind.

        Found it!

        Now I understand why others couldn’t post a link. The url gets a ‘spammy’ warning.

        In lieu of posting it here, simply go to Google Groups and search “DBS for Depression” and it should appear.

  • Jon says:

    Sorry – Link didn’t work – So I’ll try again!

  • Jon says:

    Hi to everyone – I’ve just spent about 2 hours slogging to post a reply on here – then lost it all with some bizarre message about my post looking “a bit spammy” – What? Can’t really figure it out, as they give a box for your website address, and there was nothing else even resembling spam in my post!

    Please click on my name above which should take you to it.

    Thanks

    Jon

  • 278-005 says:

    Tara,
    In my last blog post I slammed spme of the slowness related to the protocol. The almighty PROTOCOL. I’m curious which study you are in and would love to compare notes. Feel free to contact me.

    The parkinson DBS patients all discuss the amount of time it takes to find their ‘sweet spot – sweet setting’. It may be the same for us. For now.

    Thanks for having the courage to speak out. Good luck.

  • Denise says:

    Hi,

    I hope so much that this operation works for you Tara. Deression (and the anxiety, agitation that goes with it) is like being in a permanent state of hell.

    I’ve suffered from depression since I was 17, fortunately Antidepressant medication worked for me really well when I was in my 20s but since the age of 35 it has only helped a bit.

    I’ve been keeping a close eye on this treatment therapy as an option for depression because it will be something for me to hang on to.

    Denise

  • tara says:

    Most of the Time, I feel Death is the only end to this tremendous Torment. I don’t want to hurt by devoted Dad or Extraordinary and Compassionate Doctor. I don’t believe I can endure this playing at life much longer.
    I am heartfully sorry. I will do my best. I promise everyone that was my operation throughout. Noone is to blame. It is an Illness! SEVERE!

    • Gen_Eric says:

      Tara,

      My heart breaks for you. I feel your pain, literally. I just completed a full-year of DBS. So far, so nothing.

      Yes, it is an illness: enough said.

      I admire your courage and I share your struggle.

      We kid ourselves, don’t we? We kid ourselves that we are the only ones enduring this illness. How else can we make sense of it, huh, other than that we’ll shoulder the burden of this illness to spare others the pain. I am sorry to hear that my shouldering hasn’t spared you–and–I am here to testify that your endurance hasn’t spared me.

      May tomorrow be a better day–and–may this plague leave us as mysteriously as it arrived.

  • tara says:

    I hope my words did not upset anyone

  • Tara says:

    To All Observers, I am so Appreciative to be afforded this tremendous opportunity of DBS. And I especially want all my Doctors, especially Dr. John O’Reardon (University of Penn) to know he has helped me tremendously and without Him and my Parents I would be in a Morgue somewhere, God Bless all of You. I hope I make it!
    Tara A. Aliotta

  • Tara says:

    Dear Sadano,
    In my most desperete hours what kept you alive when you felt that incredible inner torment
    and despair? I plan on reporting more regarding
    the “Active” Stage.
    I have 3 Totally Competent and Empathetic Doctors, Dr. John O’Reardon, Dr. Bhati, and Dr. Connolly who work so dillegently on my case.
    Honestly the Severe Depression and Agitation have exacerbated in the “Active ‘Stage. Currently I feel Hopeless!

  • As a depressive sufferer since i was 15 and living in Cape Town South Africa i would like to know more about DBS, my son is a Dr. in neuropsychology at Colwyn Bay Brain injury hospital in Wales and would be very interested in having DBS as i am 60years old would love to enjoy my grandchildren and spend my last golden years free of depression,hope to hear from you soon

  • Johnny Marr says:

    I have had this treatment in the UK and and in phase 1 of the study. The treatment has not helped me yet, despite some very promising initial results. I think that the name of the game here is patience as whilst this is new and experimental I think that it is a case of finding the setting that actually works for you. In the USA I think they go with the settings which (if any did) showed some promise acutely so hopefully your wait for a positive result will be quicker than mine currently is. Keep hpoing and keep in touch as this does look to be a powerful treatment and we are priviledged to be involved!

    • Denise says:

      Johnny,

      I know somebody else in the UK who is on the trial in Bristol. Is the trial you are participating based in Bristol?

      It might be worth you both communicating, unless, of course you are one and the same person (his name is Jon).

      When you said you had promising initial results, what were they? What did you notice?

      Also, I know that in Bristol they are targetting two areas of the brain the Subgenual Cingulate and the Nucleus Acummbens. Are they doing the same with you?

      Denise

      • Johnny Marr says:

        Sorry for the delay of months Denise! I would be extremely interested in comparing notes with anyone else having DBS for depression (especially those in the Bristol trial). Please give me a call to further discuss on (07791) 395590. Cheers!

        • Denise says:

          Johnny,

          Just wanted to say it was reall nice to talk to you on the phone. I sometimes feel like people see me as being a “Fraud” because I am able to work and also our symptoms seem very similiar.

          I will try and get Jon to contact you and if you ever just want to talk to somebody who has an idea of what this is like then please feel free to phone me on the number I gave you. Also my email address is Denise528@hotmail.com

          I will send the link to the research I told you about later on.

          Denise

  • karen says:

    I hope this works for Tara. I too have suffered/lived with depression since about age 11 also. I’ve tried every medication, Electro Shock Therapy, I have been hospitalized several times, psychotherapy, etc. I dont even remember what happy is anymore. Hopefully this works and there will be hope for all of us. Thanks for making this story public WHYY.

  • Tara says:

    Dear Sadano,
    Sincere appreciation for your kind words of encouragement. I feel like I am in the battle of my life. Treatment takes enormous time and patience.
    I was very glad to know DBS made an enormous change in your life. I will do my best to hang on to those words like a life preserver afloat in a deep and dark ocean.
    Thank you for responding so positively.
    Best regards,
    Tara

  • Brigid Kehoe says:

    Thank you so much for this. My adult child is a candidate for this surgery. . These interviews have filled in a lot of gaps. My child’s struggle has been much like Tara’s . It is difficult to walk the line between hope and disbelief that anything will ever lift the depression. Dread of what the outcome might be if unsuccessful suffuses all aspects of our lives.

  • Sadano says:

    I was in the pilot project of this experiment. Now I am doing wonderfully well, but it took a while before my doctor and I found the right adjustment for my stimulator. I did need a lot of courage and determination not to give up before that adjustment was found. I wish for Tara to keep hoping and be positive about it because that operation made an enormous change in my life and I hope it will do the same for her

    • Gen_Eric says:

      Sadano,

      When you say, “my doctor” and “settings” can you tell me WHO that doctor is and WHAT those settings are–or–how those settings were determined?

      In a study setting, I am loathe to report that the “doctors” are puppet programmers and the “settings” are predetermined.

      Can you offer some insight, per chance some hope?

      • Sadano says:

        During phase one trial, the patient was not put asleep during the operation. At a certain point the doctor try different setting, until I started to respond. 2 weeks later when the stimulator was turned on the setting was confirm in the same way. Phase one was really a try out period what they wanted to see was: would the patient respond, so the doctor was not a puppet. The doctor was changing the amplitude and turning on one electrode at a time to discover when the patient would feel better. My doctor has since pass away but my new doctor discover after a while that if I tell him something is wrong with my setting it is time for both of us to seat down, talk about it and try to adjust them.

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