Mesh Dr Raz U.C.L.A

There is hope!
I have not posted here since my trip from Texas to UCLA California this past June 5th for my first consultation with Dr. Raz. I have known I should but of course mentally and physically I was exhausted once I returned home. Unfortunately my little dog had stayed in a kennel for four days and he was very sick, so another expense and the worry of getting him back on his feet took more time and energy. Fortunately Beaux is now his old loving little self. Of course he will not be going back to that kennel in Houston and I have already found another out here in the area I live that belongs to Beaux’s vet. So that hurdle was jumped and conquered. Once that was over, I was faced with paperwork that I had to do which took me back to the time this mesh sling was placed into my body. To do it I went into a world of financial costs and the deep mental pain and anguish that this implant has caused me over the past two and a half years. The paperwork was unavoidable and a complete mental and physical struggle to complete but that too was accomplished. Then it was time for me to work on getting my mind back into the world of the living, therefore I avoided writing this blog.

Please understand I am completely aware that women out there are relying on the information I provide, but also understand that I am like you. I am racked with the physical and emotional pain from a mesh implant. My blog reaches many, many women who need understanding, help and answers. Sometimes all they need is someone to believe that their symptoms are the cause of their physical breakdown. I do believe you. I do know the hell that this product has caused in your life. I have listened and read thousands of stories, so bad that you would believe I made them up because how could they be true? How could this wonderful country allow the mutilation of women’s bodies of a product that no testing was done except on us. If you think about it, how can they test mesh bladder slings? You cannot put a sling into a rat now can you? So we are their guinea pigs. We are the women of the world who are left to suffer and be ignored. So when you read this blog, understand that mine and almost all the other mesh blogs are written by women victims of bladder sling mesh. If they or I do not answer you immediately either by email or phone call, understand it is because we too are suffering just like you and have good and bad days.

Now to my consultation visit with Dr Raz.
If you are like me and have to make a decision to travel to see this doctor at UCLA, you will have a few hurdles to jump first. First there is the financial side of doing this whether or not you have insurance or Medicare like me. I just became eligible this past  1st which is why I used my acquired knowledge by women who have gone through this ordeal and chose to go to Dr Raz. To fly and cover the other expenses I sold my older car to make it happen. Not a lot of money but a way for me to make the first two trips. I could no longer drive and although it was paid for, it still cost tax and insurance and sat in my driveway getting older. So it had to go. I am telling you there because I was raised in hard times and my mother would constantly say “Where there is a will, there is a way”, so first you must find your will and then find a way to get help.

Wheelchair assistance.
I have flown many, many times of the past forty plus years and completely understand there are always added cash expenses than you planned. None of my former flights compared to flying as someone who is no handicapped. That is a hard word to say or write, because before this sling surgery, I was healthy and enjoying life. But to face it is the only way you can make this trip without avoiding so much pain and discomfort. My complications are many but they have changed me because I can no longer walk very far and I am always in pain. Yours may be pelvic related and if so, please request wheelchair assistance because there is a huge amount of walking to do in airports. If you have any complications you have to admit to yourself that you need help and do it. This is not a time for vanity.

Once I made the flight reservations, I tried to book wheelchair assistance on line. It proved difficult, so I dialed the Airline 800 number and did it over the phone. The lady assured me that every step of the way there and back on my trip, this would be taken care of. It was. So once we arrived at the Houston airport I told a porter outside the airport door that I needed this assistance and he asked me was I able to walk inside the door and sit and wait? I was so he showed me where to sit while he got on his radio to call for my wheelchair. If you cannot walk at all, they will bring it to your car or other method of transportation. When you see someone coming with a wheelchair, raise your hand to flag them down.

Travel light. I took a small carryon suitcase so that I would not have to wait for baggage claim. Everything you do to help yourself is important. Once in the chair I was wheeled through past the other passengers waiting for security clearance and the wheelchair attendant helped me through the process. Like I said, if you have pelvic pain do not try this alone. Give in and ask for help. The attendant wheeled me to the gate I was flying out of and made sure I was settled close to the front where the airline people would see me, then I handed him his tip and he left with the chair. If you cannot walk at all he will stay with you and help you get on board.

Tips.  This is always a difficult subject and rarely addressed and the Airline does not tell you that wheelchair assistant attendants rely on tips for wages. So as there is no guide line to how much the tip should be. Because I could help myself a small amount, I allowed $5 each time an attendant helped me. I planned on 6 times in all because of flight connections once each way, so I put six $5 bills in my purse on hand for tipping.

Taxi’s, Shuttles, LAX Airport and UCLA.
I was so very fortunate to be met at the other end by a lovely lady who has helped both me and many other women around this country because she had her sling removed by Dr. Raz. We had spent a year talking over the phone, discussing the best way to help women and we became lifelong friends. Once down on the ground at LAX, the wheelchair attendant asked me which direction to go and my daughter took directions over her cell phone of where to meet this lady, so he pushed me there where she was waiting with her car. Had she not been there I would have taken a taxi to my hotel at UCLA. I tipped my attendant just as I was getting out of the car. If you can climb up into a shuttle it is the cheapest way to go. However, if you are like me and cannot climb up steps or are in so much pain when you bend, take a taxi. You cannot skimp when it comes to adding more pain on yourself. After my consultation appointment, when we left the hotel to return home, we took a taxi back to the airport and to help you I asked how much a shuttle each way cost. It was $16.00 per person each way, so it would have cost my daughter and me $32.00. The taxi cost $46.50 so with tip I paid $50.00. So allow $100.00 for this expense. You can also rent a car but I am afraid you will have to call and ask questions because I do not have that information.

Hotels.
When you book your consultation with Dr. Raz, they will mail you a packet to your home. Part of it will be medical forms you fill out and hand to his assistant doctor once you are in the examining room. The other part will be a list of hotels with phone numbers. You can look them up on line and call and ask questions. Most of these hotels are in close proximity to Dr Raz office and if you are healthy enough, you can walk. If not they do have shuttle service or you can take a taxi. I stayed at the Tiverton House Hotel which is very near his office. They have a great do it yourself breakfast so you do not need to worry about food before your appointment.

What else you can do to help your appointment run smooth.
First and foremost, if you have a copy of your hospital Operative report, take it with you. They will so appreciate you did this because they will not have to order it and wait to see it. Save handing it over until you are in the consulting room. Second. Take the time to do a quick list sheet to help Dr. Raz understand your case. I do not mean a long letter with all your symptoms. State date the implant was placed inside you. Type and make of sling. Any surgeries you had after this date. Include those operative reports if you have them. Any prescription drugs you take. I do not take any, but I listed the drugs I have had allergic reactions too. This will be a quick view list that will help Dr. Raz understand how he can help you.

Last but least.
Please do not worry what his assistant training doctor states/says to you. He/she will examine you first and ask you questions about your mesh. My friend had warned me not to worry about what she asked because Dr. Raz will define everything. He is the one with the knowledge and he knows what is wrong with you. His assistant will take cues from him. I forgot to inform my daughter of this fact and when the assistant doctor mentioned something that was nothing to do with mesh and asked if I had back problems before, I stated no and did not worry. My daughter was upset because she knew it was the mesh and nothing else, so my friend calmed her down about it.

Dr. Raz.
I have seen photos of him and the women I have spoken to that he has helped, adore him, so meeting this man was an honor. I was surprised when I noticed he was a small man and quite unassuming. You would think he has an ego as big as the moon but if he does, he definitely does not act that way. It was amazing to be asked informative questions by him and not be made to feel belittled, or telling lies and was stupid. That was a breath of fresh air. He knew it was the mesh and I did not have to prove it to him. Thank God! After his examination and a test to see if what he suspected was correct, he hugged me (He is a hugger) and told me we would set up a date for surgery. He walked me through to the office of a lady who does this and I waited patiently for her to look dates up and put me in the system. When I go back I will have tests to see how the mesh has attached itself to my organs, nerves and muscles and the surgery the following day. October 11th and 12th. Yes, it is a long wait. But wait I will to give myself the best chance at survival and a new life.

Understanding this is important.  Dr. Raz does not promise he can fix you the way you were before you sling surgery. He will tell you he believes he can help you and give you a better life. This is because we are all internally broken. Do not be angry when your recovery after removal surgery takes so long and you are in pain. Rest and take the time your body needs to heal from this surgery and go with the flow. Deal with anything else later.

The following blog will give you all the details about Dr. Raz, tests you need and questions to ask along with so much more.
http://meshangels.com/2012/05/taking-a-break-from-mesh

I hope this blog has helped you understand Dr. Raz and the next step of your journey to a better life.
With love, support and hope.  Linda

56 Comments

  1. Kim Plunkett

    This was such a well informed blog and I actually plan on doing the same with my blog and Dr after I heal more from my removal. I am glad I was not the only one who thought of this. I am glad you mentioned about he will not promise to “fix” you as my dr said the same thing that is something important to understand. Just like not being upset or angry at pain or recovery time albeit hard as it is.

    One question I have because you mentioned it and this is something I have been putting off due to my recovery as well as the fear of painful memories is about having to go back through your finances and papers. How painful was it for you? This is something I have to do as well but have to try to go back like 8 years through paperwork,receipts and old blogs and I know it is something I have to do but. I fear the pain emotionally and mentally that it may bring. How did you cope with it?

    Thanks for sharing. I love to read your blogs.

    Reply
    1. lavalinda

      I must admit going back into the memories of when I had the first surgery and all the ensuing please I made of “Please believe me, it’s the mesh” to my doctor, plus the finances that broke down because all of this was so terrible. So I told myself to first sort it into piles, then give myself a break for a few days. Then I went through the piles and did a simple spread sheet with date and total of payment in each group, hospital, dr, pharmacy, and each type I needed to address. I did one stack a day then switched back into life now. Then when they were all done, I began to think of all the times over four month post op that I made a two hour trip to see the dr and looked up mileage on Google. I also counted up the trips with parking because it was $10 a time down town. Then I thought about other out of pocket expenses such as walker, walking stick and all the other things I did not keep receipts for but had to buy. I was told they do not expect you to have all your receipts so do not worry. You are putting an estimate together so don’t fret over all this. I did everything in stages so it took a month, but I had to force myself to go back to it to finish. Believe me it was a struggle. No one else could do it for me so I had to persevere. I am glad I did it all before my removal surgery, so I can concentrate on recovery and not be stressed out like this.

      Reply
  2. BETTY

    Wonderful information. Thanks for doing this for all meshies.
    3 months to go and you will be better. I will agree with you that after the surgery there is deifnitely a recovery time. I am much better now that the mesh is out. You will be too and that isosmething wonderfulto look forward to.

    As you said Dr Raz gives youa better life.

    Reply
  3. Kim

    I wish I had done it before my removal surgery but I was unable to, now I have tons of questions to answer, as well as the years of stuff to dig up and look up. I am glad you mentioned that they do not expect you to have receipts for everything because since mien was done so long ago, I KNOW I do not have the receipts for everything. The bad part is when I started having seizures, my file system got thrown out the window. That was in 2008, now everything is in 3 or 4 20 gallon plastic bins, and when I say everything, I mean everything from things that needs to be shred like junk mail, to my sons school stuff, to stuff that needs to be thrown away to stuff I need and that is gonna take time. As you said you are the only one who can do it, so it all falls on me. I also have years and years of journals that I was told would be needed but of course not all of them are about the mesh, I think that is going to be the hardest part albeit the easiest for me at the same time. I say the easiest because it is something I can do in bed and does not require leaning over or anything, but hardest because I have to read and actually go back to the time that everything was going on and remember my feelings. I know this is gonna be hard and it is something I MUST do, but I don’t know how I am going to do it. Too bad you or any of my other TRUE friends I met through this horrible thing does not live closer to me who knows what to be looking for who can help.

    I wrote and asked about this here in your blog since I feel this is also something that is important for others to know. They may be like me and not sure how to get started or how to handle the stress and emotions and just scared to get started, if you know what I mean. I feel like every step in this process we take is important and that we all need to be empowered with the best knowledge we can from legal stand to consults, to insurance, to what we may need before surgery, during surgery and after surgery and even knowing how the surgery can affect you afterward.

    That was the biggest problem I had, I was not prepared of how the surgery would affect me after, therefore when it became a bigger issue than I thought or imagined I found myself into a whirlwind of emotions and depression. I am still there but I find that there are a few more good days than bad now. I plan on writing about this in my blog when I feel I am healed enough so it does not come as much as a surprise or shock to others as it did me.

    Then again everything we have been through with this horrible stuff we never really was prepared for. We all thought this would fix our problems, we never thought we would be put through the hell that we are being put through psychically, emotionally, mentally or financially. As you stated, we were the guinea pigs, we were the testers weather we wanted to be or not.

    You have a lot of GREAT information here and I am proud of you for putting this out here. I am so glad we met.

    Reply
  4. Pingback: A Trip to See Dr. Raz at UCLA | Mesh Medical Device Newsdesk

  5. Kathleen

    Great information on this post as well as the “break” post. To get all the other “stuff” done, Pandora helped! It really distracted me from the “pain” of the whole process. Take breaks and come back to it. But then FINISH!!! even though all of this is an ongoing process, it is cool to be in charge again. Take your life back and know the mesh cannot hurt (or soon will not be able to) hurt you anymore! I think it is really important even though we still all have so much healing and restoring to do is to take our lives back. Dont live in the woulda coulda shoulda! That is bad and I have really had to fight that! Don’t be afraid to standup for what you believe in and yourself. Yes, there will be good and bad days! Perserverance is the key! Don’t give up no matter what. 🙂

    Reply
  6. DIANNE IN FLORIDA

    I want to personal again thank you and Linda H. for talking and e-mailing me in this situation with my mesh. You two have been my GUARDIAN ANGELS, during this journey. If it wasn’t for your blog I would have listen to my gyno about the mesh as of towhereihe physicallly LIE to me that he removed all of the mesh including the arms. You gave me the COURAGE to demand to ask the questions again if he did remove it completely. Well you know the whole story. Thank heaven for your blog and God gave me the knowledge to find it. My journey is almost over thanks to you and Linda H.

    LADIES, please don’t give up. READ every word of this blog, it will help and give you hope to get back to normal, depending on how serious your condition is.

    Reply
  7. Michele Evans

    How do I know if the cramps and pain on my right side near my pubic area is from my mesh surgery? I do not want to go back to the doctor who put it in yet I experience pain all the time and would like a diagnosis. I have been to the emergency room many times and they check for cysts and kidney stones. I never mentioned I thought it could be the mesh but they also never considered it. I told doctors that I had the surgery. Would they be able to see the problem? I have had MRI’s to see if I had any cysts burst………would they see it then? I am not sure what to do but I was up all night with pain that can not go away after taking 6 Advil at one time. I will probably end up in the emergency room again but I feel like they think I am a head case. I want to stress that I am an AVP for a large financial institution and have not missed one day of work due to the pain. I am not someone looking for financial gain, a free ride or anything, I just want the pain and stress to go away. I have not felt good for a long time. Can you tell me who I could see in Pittsburgh PA to check my mesh?

    Reply
    1. lavalinda

      The only person I know that could tell you is Dr. Raz, but by what you have said, you are going through what millions of other women are going through. Tons of tests and no answers. You yourself know the answer and yet because of all the dismissal, you don’t believe what your body is telling you. None of us are looking for financial gain and yet women are treated this way every day when they go to doctors or emergency rooms for pain. However, most women by the time they finally get help have lost their great job and career and are financially devastated. They then need money to get surgery, but they will never receive much, so this is not about money. It is about an implant that is taking away women’s lives.
      No one in your area can help you. I have a lady who went on like this for 8 years from your area who got so bad, she almost died. They opened her up and closed her up again because she was so bad. I told her to go to Dr. Raz. She did and he saved her. Please go to him. You deserve to get well.

      Reply
  8. DIANNE IN FLORIDA

    To My Meshee Sisters,
    PLEASE listen to Linda and the rest of my meshee sisters that have been to Dr. Raz, I have been through TWO operations since November 2011. My first one was to do a COMPLETE BLADDER SLING REMOVE, SO I WAS TOLD AND lied TO BY THE MAN I HAD BEEN GOING TO FOR over 30 YEARS AND lied to again, all he done was a PARTIAL REMOVAL, IN OTHER WORDS – just to remove the mesh he could see. I questioned him at my last visit again and as he was walking out of the examing room I DEMANDED AN ANSWER TO MY QUESTION – and his body languaged changed so fast as he turned around and looked me dead straight in the eyes with his nurse standing there and he said ” I MIGHT HAVE LEFT IN THE ARMS/ANCHORS AND SOME OF THE MESH IN.” Don’t waste your time and money, PLEASE call and make an appointment with Dr. Raz. I did. After I thought I could rely and trust on the DOCTOR, that I had been going to for over 30 years. IF I would have listen to LINDA and read her BLOG I would have traveled to California and I would have been on my way to being well and just ONE operation not two just to use as a bandaid to fix the pain. What ever you have to do to get the money to see Dr. Raz, whether it be to hold FUND RAISERS in your community, GARAGE SALES DO IT. It will be worth it to you and your body………and you won’t be go thru the pain that I went thru after my two operations. LINDA K. and LINDA H. my GUARDIAN ANGELS I thank you both for helping thru this journey.

    Reply
  9. Pingback: NON Mesh Bladder Repair Surgery « Bladder Sling Surgery

  10. simone

    RE COMPROMISED IMMUNE SYSTEM
    Hi, I am Linda’s sister in the uk. I had bladder repair surgery 32 years ago the old fashioned way without mesh and it is still good.
    However, when the Uk introduced routine cholesterol tests 12 years ago I was given a Statin called Lipobay and took it under protest. Three months later I was so ill with muscle problems, chronic fatigue and such bad brain fog I could not name a kettle in front of me. I went back to the doctors several times and was told it was not the drug, but I was lucky as over 100 people were reported to die from it, the drug was withdrawn, but there was no compensation in UK so I knew I had to fight back myself. At the time I was a qualified Nutritional therapist and chef and taught Therapists, but had to stop teaching and shut down my business to take a year out. I could not walk more than 5 minutes and slept 20 hours a day. As there was no treatment I embarked on my own supplement and nutrition programme which may be able to help anyone with a compromised immune system. Here is what I did in the hope it may help some of you,there are no contra-indications, but if you are worried about any of this please seek advice from your physician
    DAILY -I take a good vitamin & mineral supplement, a good probiotic, Aloe Vera as natural anti-bacterial and anti-inflammatory, and I use Arnica Gel rubbed into any aching muscles, instant relief.
    I found a fairly new at the time life-saving supplement called NADH, it is the No 1 co-enzyme as it puts energy back into your body at cellular level, I took 2 a day for 2 years, and revert back to it if i have a relapse through picking up a bug, it helps energy levels and muscle pain.
    I altered my diet, became vegetarian as unless meat and poultry are organic they can have organisms or antibiotics. I replaced it with soya products but fish is good, especially the oily kind like salmon.
    It is important to still get good protein to rebuild the body.
    Yeast can become really bad in the gut especially with a weak immune system, and at it’s worst can cause leaky gut, so I removed as much yeast products as possible. ie; bread, pizza, alcohol, vinegar products, I had to make soda bread but there is much more ready made products now.
    Avoid using any anti-perspirants – only use aluminium free deodorants
    I hope this may help some of you. I am ninety percent fit now and just have to cope with rare relapses, I still teach part time and go line dancing.
    Above all – give yourself permission to take time out for yourself to get well, and make a plan to do one little thing each day so you feel as if you are achieving something, say read a page of a book or ring a friend, it helps to feel you are taking those baby steps to making progress.

    Reply
  11. Concerned Daughter

    Thank younso much for writing this blog. My mom had bladder surgery last march where they put mesh in. She told her Dr. She didnt want it in but he said he wouldnt do the surgery if not. She had been batteling uti’s constantly. Right after surgery her body started rejecting the sling. She would constantly be in pain, and Im not sure if this is related but she started having issues with her heart. She would wake up in the middle of the night and her heart would be racing. The dr’s ran all sorts of tests and never could find anything. Her heart is fine. I think it somehow has to be related to her bladder surgery but I dont know how. I started doing some research and that led us to the Mayo Clinic in FL. We went for a consultation in February and the Dr there at first didnt want to remove it. After he did several tests and saw that she had a prolapse then he decided he would do it. The surgery was in march, it was robotic. She was in surgery for about three hours. He fixed the prolapse and removed most of the mesh. They were great at the Mayo Clinic and so helpful. But now 5 months later mom is still having problems. I had to quit my job to stay at home and take care of her. She is at her witts end. She was so sick yesterday that I started doing more research and came across your blog. It gave us hope. She is dehydrating because she goes pee so much and then it causes her heart to race. She doesnt take meds her body is higly sensitive. She takes lots of supplements. She is 55 years old and for the most part up until her surgery she was healthy. She use to be very active and walk two miles each day. Now shes lucky to walk three times a month. She has no energy. Her life is going down hill fast. We are desperate for help. I do what I can for her but Im desperate for her to be normal and be able to enjoy life again. Please help us.

    Reply
  12. DebC

    This post was very helpful. I’m so excited to be able to go see Dr. Raz in a few weeks. I need to travel alone from NY, so I really appreciate all this info!!! THANK YOU THANK YOU!!! =) You are an angel.

    Reply
    1. lavalinda

      You are very welcome. We have enough stress to deal with so we do not need to add more when we travel.

      Reply
  13. Kit McIntosh

    Hi, I was wondering if anyone can help me with this question. I have had 4 pelvic repair surgeries and none have held well. Could anyone tell me if they have gone to Dr. Raz and he has repaired a cystocele using the “crisp” method which I see on the UCLA website. Do anyone know of a Dr. who using thigh or abdominal fascia to do repairs (no mesh). Thank you.

    Reply
    1. lavalinda

      Dr Raz uses the old methods of fixing pelvic prolapses and does exactly what you are talking about. I know women who have had reconstruction done by him after mesh removal.

      Reply
  14. Susan

    Thank you for the information. I have severe Interstitial Cystitis and urinary retention from a botched urological surgery years ago. I am in severe pain and am in the bathroom 60 times per day. I have to wear a foley cathedar just to leave the house and am disabled. I have an appointment Feb 27 of 2013 for my Initial consult with Dr Raz. I am traveling from Indiana. I have to wait on my income tax to come up with $2,000 to be able to travel to UCLA about 3 times (which is why I have to wait until Feb). I too, also suffer from frequent yeast infections. I am going to try GNC’s probotic and the marshmellow root you metioned in your other article. Though our symptoms our different, this blog you wrote has been helpful to me. I was considering asking Dr Raz to take my uterus out upon bladder removal but after reading your story, I think I would like to keep it in. The reason I was considering it is because my bladder and uterus are fused together. But maybe he will be able seperate them to spare me the rest of complications.

    Reply
    1. lavalinda

      Don’t think about anything until you have been to him. He is a master at what he does. Many women have done fund raisers by asking others for help. You should look into it. Your story is awful but hopefully things will get better for you. Without the probiotic and marshmallow root, I am not sure where I would be. Sometimes self help is all we have.

      Reply
  15. Tamsyn

    So glad to have found this blog. I am a single mother of two in Canada. Where half te doctors don’t even know how to read the ultrasounds to see the mesh properly yet. I am going to try and find government funding to get me to Dr. Raz. I refuse to waste my time on anyone that doesnt have a clear solid answer on removal of my mesh. It needs to come out bottom line ! Thanks everyone for sharing. It gives me strength
    Tamsyn xo

    Reply
    1. lavalinda

      I understand your concern and I will pass your information on to another Canadian woman who is working to change things to get you to Raz. Most doctors heere do not know how to reand them either. It is very sad.

      Reply
    2. Lisa

      Tamsyn-I am also in Canada, had partial mesh removal 6 months ago and the pain has returned as the arms were not removed. The surgeon said it is too deep in the tissue for him to remove. Did you see Dr. Raz? If so were you able to get any type of funding from our government? I do not have a benefit plan and unable to work full-time due to this pain.

      Reply
      1. lavalinda

        I know two Canadian ladies who recently had their mesh removed by Dr. Raz and I am going to put you in contact with one of them.

        Reply
  16. DebC

    Hi Linda,

    I wanted to share here that I did go to my consult visit with Dr. Raz a few days ago. He said he is going to be able to help me, and thinks he will be able to remove all the mesh and that will help alleviate, if not completely alleviate, my pain. =) Bad news is, he is booked solid & it will be months before I will be able have the surgery. Still, I am so relieved.

    I know I don’t have to tell you what a relief it was/is to have a doctor that finally understands mesh complications and the severe groin/hip/leg pain I’ve been experiencing, AND is actually able to do something about it – meaning he knows how to remove the mesh. That is just so HUGE for me. I’ve been to so many other doctors over the last several months who just didn’t know what my problem was and would send me to the next doctor, or told me it wasn’t possible to remove the mesh that is down in my thighs – when that is the part that is causing my pain. I traveled from NY to UCLA to see Dr. Raz, and, it was a very worthwhile trip.

    This blog post was such a help with all the travel tips, etc. I read it, and re-read it over and over. I’d like to reiterate how valuable using the wheel chair assistance was. I don’t think I would have made it without that. Having the $5 tips handy also was helpful. I did feel a little funny being wheeled around.. but, I also had a crutch with me – which was a little cumbersome but, actually was helpful because it helped make it pretty obvious to people I had a problem, and they were more willing to help. Normally, I’m a very independent woman, but this time – I needed help – and as you said it was not a good time for vanity… or pride.

    I also stayed at the Tiverton… and, it worked out well. It’s older, and since it’s affiliated with UCLA hospital, it sort of reminded me a little bit of a hospital…. lots of sick people there… but, it was very clean… and nice… and, the shuttle service to and from UCLA was great… and the staff was very nice. When I went down for breakfast, I decided to bring it back to my room and a staff member offered to carry it back for me (since I was alone and using a crutch). The room was comfortable enough… clean and spacious, if not “new”. I had a standard room with 2 double beds in it… but it still had a small fridge, a little desk, a big chair, plus blow dryer, ironing board, etc. There’s also a Library, computer room, and laundry – that I didn’t use – but, might use when I go back for surgery in a few months.

    It was too bad they didn’t have a restaurant right in the hotel, but there are vending machines, free breakfast, 24 hour coffee, and since there was a fridge I bought a salad after my consultation at UCLA and brought it back with me to the room for later. There was some little “Cafe Grill & Pizza” place right near Dr. Raz’s office at UCLA where the shuttle drops you off. I had a ceasar salad there before my appointment, and it was so good that after the consultation, I went back and got another salad to go and brought back for dinner later. They had all kinds of other food there, though… so, anyone going there – keep it in mind.

    Anyway – thanks again for this blog. Keep writing and sharing! =)

    Reply
  17. DebC

    Oh – one more thing… Dr. Raz actually explained things to me and said things that made sense, and it was obvious how much experience with mesh complications he has. In addition, he held my hand, and looked me in the eyes, and said, “I’m going to help you. Okay? I’m going to help you”. He said it a few times… maybe, because he could tell I was having a hard time believing him after so many could not help me. But, I could tell just by the look on his face how much he cares and, I did, and do believe him… and, I am so thankful.

    Reply
    1. lavalinda

      Thanks Deb for sharing your experience with all the women out there. It will help them tremendously and they will find the strength to think of themselves for a change and go where surgery will leave them in a better place and not have so much more physical dammage. Many women have told me of their fears because they have never flown before and I want them to know that you flew by yourself for the consult. Of course I know you will be taking someone with you for the surgery date, but you should be commended by plucking up the courage to do this. Your reward was to see a doctor who understood your condition and gave you great hope for a better future. Thank you for adding the smallest of details that I did not think of such as the things the hotel provides. It is better to take a smaller bag and not have to go through baggage claim and it is good to know that they have the things on hand we all need at times. Once again thank you.

      Reply
      1. DebC

        Thanks Linda. Yes, I flew by myself. This was a bit intimidating, since it was my first time traveling as being “handicapped”… and, also my first trip to California or the West coast. I went alone for financial reasons… and because I figured I could handle it. My husband will go with me when I go back for surgery.

        Using the wheelchair assistance actually made it much MUCH easier… not only because of the pain of walking, but because I didn’t have to worry about where to go… just showed them my ticket and off we went! They were actually quite nice about it. I highly recommend anyone use this service whether they are traveling alone or not.

        And yes… not checking any bags also made things much easier. Allowing a day to travel each way also helped. I traveled out there on a Tuesday…. had my appointment on Wednesday… and flew back on Thursday. Not needing to rush, or worry about the three hour delays that came up (oh yes they did!) made things less stressful too.

        I hope this does help someone else out there…. as I know your blog has helped me! Take care!

        Reply
        1. mmm

          Hi Deb C.,
          I was wondering if you could tell me how your surgery went with Dr. Raz in January? I had the same mesh product implanted several years ago. I had part of the mesh removed in January of this year and still have groin, hip, leg pain. I have a consultation with Dr. Raz in January. I am so curious how things went for you, how long your surgery was and how long you were in the hospital. Can you share any specifics?

          Reply
  18. Kathleen

    Deb you will do well and you are in great hands!

    Reply
  19. Betty

    a great blog Thanks to you and Linda K for all suggetsions- they will help those goingto D Raz And God Bless dr Raz

    Reply
  20. Jojo

    I would like to hear from some women who have experienced bladder sling removal. What to expect? If it was successful? Would they o it again? Complications? This blog talks about going to Dr Raz but I would like to hear from women that have had surgery and now have their lives back. Can anyone provide this type of information?

    Reply
    1. lavalinda

      Jo Jo
      I just did it and if you go to a blog I wrote called A Light in a Night of Mesh Complications written on Sept 27th 2012 you will read about one woman. Others will follow.

      Reply
  21. teresa hughes

    Dear Linda

    What a wonderful job you are doing in continuing your help to other women.

    Thank you for all your help.

    Teresa

    Reply
  22. debc

    JoJo,
    I am waiting to have my sling removed by Dr. Raz. Unfortunately, I have to wait until January… but, I have hope because of the many great things I’ve heard from other women about him, and also because I had a consultation with him.

    I had a TOT sling last Feb. for SUI. I have been having groin/leg pain since then, that has become so sever that I can now hardly walk. I spoke on the phone to a woman that had the same kind of sling as I had, with the same kinds of complications, and had already had it removed by Dr. Raz. She had nothing but good things to say about him, and told me that while she was not 100% back to normal, she was much MUCH better after having the sling removed. She could walk again… something I haven’t been able to do without using a crutch and a lot of pain for months now. So, this gives me hope.

    Reply
  23. karen chirdo

    I am having surgery Oct 25 with Dr Raz. I had my bladder surgery 4 years ago. After 3 attempts to remove it with no success I was informed of Dr. Raz. I feel like this is my last chance, I am so tired.

    Reply
    1. dc

      Hi Karen. October 25th is right around the corner, so hang in there. So glad you are going to Dr. Raz. My appointment with him is in January. Every day I wonder how I can wait until then, but feel like waiting IS my best shot and will save me time, pain, and money in the long run. Local doctors will only do a partial removal, and I’ve not heard anything good about that from women who have had it done. Your comment is just one more that makes me feel like I’m making the right choice by waiting to go to Dr Raz for a full removal.

      Linda, the owner of this blog, has posted in facebook that she is already feeling better after her recent removal surgery with Dr. Raz. So, hang in there. Help is on the way!

      Reply
  24. AMPLEANNIE

    I have read with interest all of your blogs.

    I tried to call Dr Raz’s office and was stonewalled by Tiffany in admin who would not let me talk to a Dr Assistant. I live in another state and would like some questions answered before I select him as my Doctor and make a long expensive trip over.

    But I was told I have to have a consultation first. I asked if I could send my records and then have a phone consultation, then. I was told no.

    I simply would like to know if Dr Raz does not use mesh, then what method DOES he use to repair? I have prolapsed bladder, uterus, and rectum. What method do you suppose he uses?
    NONE of your comments say what you had as a repair to the mesh problem. I have not had any surgery yet, no mesh or anything and want to do it right the first time.

    If you read my comment, can you email me back at ample-annie@juno.com?
    That way I am sure to get the reply and hopefully answers to my questions.

    Thanks

    Reply
    1. lavalinda

      He does all this and more and you can email him at SRaz@mednet.ucla.edu He always answers unless he is travelling which he does often. Keep it short and to the point.

      Reply
  25. Peggy McAllister

    Thanks for the email contact. I ran into the same problem when I called ucla. just wanted some questions answered first. could not even confirm what insurance companys they accept.

    Reply
  26. Paula

    I called the number on the “Dr Raz” website. The woman acted like she didn’t know what I was talking about when I told her that my insurance was trying to prepare and “In network” claim so that I wouldn’t have outrageous copays and deductible. My insurance provider told me to call Dr. Raz and tell them to expect some paperwork to fill out regarding this. The lady at UCLA didn’t have a clue what I was talking about. Her and I got in to a conversation about what my needs were and one of them being a uterus biopsy to rule out cancer. I told her that the mesh can cause auto immune disorders and cancer. She said she had no idea. After getting off the phone, I wondered if I had the wrong phone number! Does anyone know how to get ahold of Dr. Raz’s office? This woman apparently worked for him in some way but I don’t think she is the one who I was supposed to be talking to! LOL! I have heard such wonderful things about Dr. Raz. I am looking forward to him helping me get well. 🙂

    Reply
  27. Angela Sackett

    What was her name? He has had to extend his staff even since I’ve started in August with him. If it wasn’t Jean then you need to call back and ask for her.

    Reply
  28. Jeannie

    I have a question does dr Raz remove monarc slings I have so many problems but did not find out any of this Until this mesh came out I have all the problems I had my surgery in 2005 that has been a long time is it to late to take out .

    Reply
    1. lavalinda

      Jeannie, I removed your last name so that you remain annonymous. It is NOT too late. Women who have had mesh in the for 15 years are having it removed. I asked Dr. Raz this question and he assured me it is NOT too late. They are truly experienced at UCLA and will help you. This blog is about the doctors of UCLA. Please watch the video. http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery

      Reply
  29. diane silvestri

    I had mesh surgery in July of 2012 and have had nothing but problems. Nothing like what I have read here but problems all the same. I have to urinate standing up otherwise I can not totally void. I have constant abdominal pain at the bladder site and I have recurrent bladder infections. I also have sharp vaginal pain. My doctor allowed as how “I may have gotten the sling too tight”. The fix proposed was to have another surgery to cut the sling so it is not so tight. I am not going back. Does the pain and problems get worse with time or do they show up soon and kind of stay the same? It would be hard to go to UCLA but I will if I must. Thanks for the blog and all the info.

    Reply
  30. lizzy

    I have been trying to go to dr raz but they wont work with insurance.companies.my insurance hesitates because of this issue. why dont they do this? I have coverage but am held back because of this.why cant ucla have staff to do this?I need help but I cant get it if my insurance doesnt help.doctors here have staff for this why not here?

    Reply
    1. lavalinda

      Lizzy, I understand what you are going through, so the best way is to go to your insurance company yourself and get the approval. Then send the proof to the UCLA person who is supposed to handle this.

      Reply
  31. Brenda B

    Thanks for all the helpful hints! I found Deb C story and am also from NY near syracuse. I had mesh surgery July 2011 and have been having pelvic pain, backache since surgery, pain down my thighs and hips. Its all been a nightmare! Worse the Dr that did the surgery tried to say all my pelvic pain was a yeast infection! Went to second opinion Dr who laughed at me and said it was all in my head or he said after I broke down crying in his office that I could have nerve damage and gave me meds for that, but nothing helped! My primary care just wants me on anti depressants! Which my emotional state has been the worst. I decided after reading Deb C story I couldnt take no more and called Dr Raz office and now have an appt in June. I dont have any money for all my travel expenses yet but I am going to make this happen! I want this mesh out of me! It is good to read all these stories and feel there may be some hope!!!! Thank you all for all your stories!

    Reply
    1. kathy

      Brenda, I have been reading for several months now about the horror with mesh. I am from syracuse. I do not have mesh…yet. I have severe prolapse and have had 2 repairs that failed within weeks. I am and have been suffering from this since oct. 2012. I think I have seen 35 doctors and no one could dx. Me correctly for almost a year. I hurt the pudendal nerve at the same moment I tore the lateral facia. Many of the doctors I have seen have been very dismissive, arrogant and rude. I have left offices and cried all the way home. They don’t seem to think a woman know where her organs are . Yesterday I was told my only option is a sacrolpopopexy. I am very concerned of this procedure due to the insertion of mesh and that it is affixed very near the pudendal nerve. Not sure if dr. Raz,who I have been reading about is just doing mesh removals but I need to have some other option. Dr. Saying that last repair was over-repaired and seems Noone wants to do anymore more conservative repair. I too have severe pain and discomfort bladder, bowel,rectocele,cystourethrocele,vaginal vault, chronic yeast infections, very difficult to void,possible enterocele. Did you have good results withat dr. Raz? Me and my family are trying to hang on by a thread. Do you or can you help find a doc who will do repairs without mesh and who can and will go the extra mile for those who can’t become mesh victims. Please help

      Reply
      1. lavalinda

        Kathy there is a link at the top of this blog called doctors. Some are pelvic, other hernia who can repair without mesh. However you case may need someone with extreme expertise and that is UCLA or Dr. Rodriguez all in California. I beg you do not have sacrolpopopexy with mesh as I know far more about this than I write about and women who have this done with mesh live in hell. There are procedures that can fix you but most of these doctors have no training to do them. You can get in to see Dr. Rodriguez much sooner and believe me the women who went to her say she is excellent. She was trained by Dr. Raz. Go for a consult and take your records. Here you will find her info. http://meshangelnetwork.com/doctors/non-mesh-doctors/

        Reply
  32. Linn

    I had mesh removal by Dr. Raz last week. I flew 1900 miles to get to UCLA. My travel tips would be… Carry 2 or 3 maxi dresses or skirts. They are easy to just pull up and easy to deal with that cath that will be attached to you for about a week. There is a laundry room here at the Tiverton Hotel. I also carried disposable pull up type underwear. It is easier and more dependable than pads. I prefer the cheaper loose fitting underwear. I did experience some vaginal bleeding. Also, I have a small travel pillow to sit on tomorrow for my long joiurney home. I am very pleased with my UCLA experience. Dr. Raz said that he removed all of the mesh, and I look forward to continued improvement.

    Reply
    1. lavalinda

      Linn thank you for posting and giving your take on travelling far from home. I am sure many women will appreciate your comment.

      Reply
  33. kathy

    Linda, thankx for responding. OK so today another app with doctor who now wants me to go back to dr. Barber at cleveland clinic. He says not comfortable doing anymore surgery! I said I can’t stay like this! I can’t sit except leaning on hip bone and with ice on my perineum, I can’t lay down without increase vaginal pressure. Over weekend almost went to er, but I had to do this before and they don’t do anything and refer you back to doctor. I am in terrible prolapse discomfort and these doctors are keeping me this way saying they don’t want to make me worse! I can’t get worse! Cleveland clinic doc did botox injections into pelvic floor muscles and thought that was all I would need!? It’s ridiculous. It didn’t help with prolapse which is why I went there in first place,to get a successful prolapse repair and have perineum rebuilt back up. No doctor wants to do it and I can’t live like this. I did talk with dr. Rodriguez off. But dont have app yet. Trying to get funds. I am in agony and not sure if dr. Rodriguez can help because there are several different prolapes – she is urologist and I would need to have all pelvic floor defects fixed and very afraid she may not want to see me or get involved. Doctor says my case rare/unique. I need to have these fixed! I can’t keep being sent to doctors who won’t help me and choose to push me off to using conservative bandaids that don’t and won’t take care of the problem. Thank you for listening.

    Reply
    1. lavalinda

      Kathy I know others who went to this clinic and did not do well. Try with all your have left to get out to see Dr. Rodriguez as soon as you can. If you are low income you can get a flight and you can also advertise to see if any friends or family have mileage that you can use. Beg everyone and do all you can. Dr. Rodriguez was train by Dr. Raz and she fixes all these prolapses. Maybe this will help. http://meshangelnetwork.com/2012/11/mesh-removal-no-money/

      Reply
  34. Carrie

    I have an appointment scheduled with Dr. Raz for July (soonest available). They offered an appointment with Dr. Kim in January instead. I am not sure if I should consider this. Let me know if anyone has any input on this.
    Thanks!

    Reply
    1. Linda (Post author)

      I know other women who went to her for removal and she did a good job. You can email her and ask questions about your case.

      Reply
  35. Linda (Post author)

    Carrie you can now read this blog. http://www.meshangels.com/dr-kim-ucla/

    Reply

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