((((AMY)))))
I am in shock of what you went through today. My heart cries for you my friend. If I were closer, you would not have to worry about anything. I would take care of you and your girls. We are here for you all the way. I send you big big big hugs. I was going to come home and call you if you had not responded. I had to run errands and I was worried all the time. We love you MC.
Daily Kitten Chat Forum » General Chat
any news from mollycat?
(366 posts)-
Posted 2 years ago by cricketsmama #
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I am so sorry to hear that you had a rough time with it. Please know that you have to continue and take care of yourself. You must care for yourself. I know what it feels like to be the pin cushion. It took 7 times to get an IV in for transport. It blew by the time I was in Lubbock. It took 3 more sticks. I had to have blood drawn every 8 hours for 48 hours. My arms from the elbow to fingertips are still bruised--that nice yellow color now. I also ended up having to have blood drawn from my feet and they are normal now but where all bruised.
You have a severe neurological problem. It is going to get worse before it gets better. They say that the symptoms will continue to get worse. Have you read the information on this from the Mayo clinic. They are pretty good--actually the best with the highest success rate. They say it takes 4-6 weeks to recover from this surgery. My only experience with neurologists (daughter under pediatric neurologist since age 3 and TIA) have been fairly positive. I really believe you must feel comfortable with your neurosurgeon. Please if you do not feel comfortable work with your insurance company and find one you do feel comfortable with.
MC having the prayers and thoughts of TDK don't really put someone on the couch with you. Having someone you know and trust with you would be ideal. I wise more than anything you had someone to be with you. You have my prayers always, I just wish it was so much more.
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Thanks I have reviewed all the mayo clinic info. I took a job with them at one point and then they lost the "funding" for the job. I still respect them tremendously. I must say, SM, that I can't imagine where I would be right now had I not found you guys. You have propped me up when I have needed it most. Again, my thanks!
Posted 2 years ago by mollycat71 #
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{{{Mollycat}}} Hang in there, sweetie! This is an ugly question, but did they reschedule the second scan? Your doctor may need it to completely diagnose your situation....
If it is rescheduled, make sure that you INSIST on having someone (Doctor, IV nurse, or tech) who is SKILLED in starting an IV do the setup....I, too, have been turned into a 'pin cushion' (because of small veins) by 'less than skilled' hospital personnel; tell them at the outset that you have had problems before, and they have "two sticks", then you want to see the doctor!!!!!!!!!! Pitch a fit, if you need to, to get someone who is skilled to handle your setup.
Wish I could be there to help you and the girls through this.... {{{MC, Betty & Wilma}}}
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MollyCat, sweet friend... I am just now finding this. I'm sorry. Today has been a day of trials and one that you should not have had to face alone. As a nurse, I can only say that I am glad that there was one who recognized that you needed more than a bandaid. I wish so much that I could have been there with you and that we were closer. You do need someone to be sitting on that big sofa with you. If you look closely though, I think that you will find that the sofa is actually very crowded.
Well, my first thought is that you need to be in a specialty clinic. Of course the Mayo Clinic comes to mind. Somehow it seems that the health care team there is not generating a lot of confidence on your part, or trust. And at this point, trust is imperative. You MUST be a part of the health care team. You know that. And so far, it would seem as though you are not. I am certainly not making judgment on your neurologist there. But you are having to act as your own advocate, and that shouldn't be the case. You should be involved on the decision making team. You should have input into the treatment plan and the outcome goals. It just doesn't sound as though that is happening. On the other hand, I know that it is far to easy for those of us who are not involved to say, "Well, go somewhere else". That is often times far more difficult than one might think. However, in this case, you MUST have confidence in your doctor. It is imperative. If you cannot sit down with her, express your fears, your concerns, your hopes for a treatment and resolution, then very likely this is not the right doctor for you.
It is easy to say "Go to the Mayo Clinic"; "Go to Scott and White"; go...... but the doing is sometimes hard. You have a life to arrange, plans that must be made, a job that must be attended to. If there is ANYTHING that we can do, you know that we will. I would tell you to come here and live with me, but truthfully, our hospital sucks and the doctors aren't much better. Not an option, really, because of that.
You need to rest and then take some dedicated time to decide where you go from here. We are all here for support, for love and maybe for some sound advice. TL especially is well versed in this situation. Me... here I am only a nurse and I have no knowledge of the condition that you are facing. But, I will tell you this. You are important to me, I have come to love you and I will do whatever I can. You just tell me.
Posted 2 years ago by WillowandWindismom #
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MC, been thinking about you...just had another thought for future reference should you ever need another IV. Usually the best IV people are the anesthesia docs or the nurse anesthetists. Be obnoxious if you must and insist that they call one of these folks for any IV in the future.
WWM is so very right. It is so easy really for any one of us (myself included) to say "go elsewhere". It is so incredibly difficult to make these decisions for ourselves especially when we feel most vulnerable, when we are scared. Just remember that you as a patient always have the right to request a second opinion or to request a referral to a tertiary hospital. I am not going to tell you to go elsewhere, but I will concur that you must have full confidence in your care providers and know that there is good easy communication. To me , it should be a given, but sadly not always true, but a health care provider who truly cares , will want to be your advocate.
The only thing that I will say strongly, and please forgive me for this, is that, if (and I am praying not) you do need surgery, I must honestly tell you once again that this is the kind of surgery that is best done at a tertiary hospital. I pray that you will have the strength, endurance and ability to think clearly in the midst of this very frightening time. For what it's worth, we are all here for you, at least to support you every step of the way. God willing we will also be here to celebrate you return to good health very soon.
BTW, please get that Baskin Robins ice cream tomorrow :)Posted 2 years ago by Tigerlilly #
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TL is so, so right about the IV's. Honestly, that was never my strong suite, and I worked on a surgical unit! I would try twice. If I couldn't get it, then I would always call anesthesiology. They can get a stick first try. But you have to stand up for yourself and demand that. It's stressful enough with everything that is going on, and you certainly don't need to be stuck repeatedly and have veins blow.
TL, I do so agree about the type of hospital where one would go for surgery of this nature. You want to really check out how many surgeries has the neurologist done of this type? How many cases has this hospital done of this type? What is the track record of the hospital? Chicago is huge and should have outstanding facilities available.
Once again I am just so frustrated that none of us are closer to you, MollyCat. Geographically, I mean.
Posted 2 years ago by WillowandWindismom #
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mollycat you are a hero in my eyes. you have plenty of family who love you, and thats us . i wish i was there to start your iv , i just saw your post on the brusies, i usually get then first stick. i'm sorry you had to go through that. molly you have to email me your address, so i can send you cheerful cards , lydia allready has a card picked out for you , betty and wilma. lydia is such a silly kitty !! get some rest tonight and curl up with 2 kitties who love you !!
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Mollycat! What a tough day! I told Lady Coco and Sophie Dorothea about it and they joined me in sending you our prayers and wishes for healing and strength. Sophie put her paws on my shoulders and gave a gentle headbutt and nose press to let you know she cares.'
P.S. Were they {doctors, that is) able to ease the pain from your headaches?
You'll be in out prayers tonight.
Posted 2 years ago by GizzysAuntie #
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(((((Mollycat)))))
Posted 2 years ago by Cat talk rules #
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Mollycat...I have so many awful things going on in my life right now,but, my stuff seems so unbelievably trivial when I see what you been thru this last 24 hrs. I too am sending {{{HUGS}}} & Prayers to you. I'm sorry you had to experience such incompetence & that you had to go it alone. If I could be there right now to help you & your furbabies,I would be there in a nano second.
Hang in there & know you have friends. -
Mollycat, I am so sorry you are enduring such a terrible trial and doing so without anyone physically there to be with you. But many hearts and prayers are and I hope they bring you both strength and comfort.
I can only echo the advice of many others in highly suggesting you ask some tough questions about the surgeon, the hospital, the number of such cases they have dealt with, the frequency they have done so, their success rate, etc. And be willing to get an immediate referral to seek a second opinion in an expedited emergency timeframe, as your present neurosurgeon so radically dropped the ball a year ago and continued to do so for an extended time until you up and made a fuss.
May I also suggest two possible resources to seek out support from -- first, believe it or not, your insurance company should have a patient advocate you can ask to speak with and get involved in helping you get a true team pulled together that are fully communicating with you and each other so that EVERYONE has full information and is on the same page with your full inclusion, understanding, and consent of everything being done to and for you. Secondly, every hospital I ever dealt with over many years of getting treatment for my parents had a patient advocate on staff, usually an experienced nurse/social worker. You can ask to speak with the advocate and get them involved in helping you get full control of your treatment.
May God truly wrap you closely in His comfort, care, guidance, and grace and extend His care to your furbabies.
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Mollycat, I don't know what to say. What a day you had. My thoughts and prayers are with you during this time. You have been given very good advice from your friends here and I hope that gives you some peace. Take care. (HUGS)
Posted 2 years ago by Lynn from PA 6/8 #
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MC, I'm just sort of echoing Tigerlilly and WWM here, but have you checked with University of Chicago? I think their neurology department is highly respected. They are also close to you. I don't know if your insurance is affiliated with them though. The more I think about your doctor the angrier I get. How could she have dropped the ball so badly? Prayers and hugs for you. Rest up, and do some research on your options.
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On the subject of IVs, the last time I had an MRI with contrast, when the tech came in to put the IV in I said, "I'm probably going to swear at you" and he asked "Why?". "Because this is going to hurt", I said, because the previous time it hurt like ****. "Oh really?" he said, and by that point the IV was in and I'd never felt a thing. He said he used to be an EMT and had to learn how to insert IVs in the back of moving ambulances, so anything else was easy.
My point, and I think I have one :), is that there *are* good guys in the healthcare system, it's just hard to find them sometimes. It helps to speak up, and it sounds like you're doing a super job of that, Mollycat {{{MC}}}
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I have a seminar today on stress reduction and anxiety. Ironic huh? Well, who knows, God works in mysterious ways!
Posted 2 years ago by mollycat71 #
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Sleeping was lousy, snuggled girls. Head hurts!!!!
Posted 2 years ago by mollycat71 #
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Oh My MC I am so sorry to hear of your very bad day. My prayers are with you, and hugs, hugs and more hugs. Hang in there you sound like such a very strong person!
Posted 2 years ago by BoogerMercurysMama #
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MollyCat, what is the plan for today? What is next?
Posted 2 years ago by WillowandWindismom #
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Yes as I said on the other thread please ask the MD how many cases like this they've done lately and their success,it is not a rude question. There are many very good hospitals in Chi town like Rush or any large teaching hospital.
When I broke my back they took me to a community hospital and they were amazingly lackadaisical about my symptoms which included ascending numbness from my feet to my waist. I called a Dr I trusted,a neurosurgeon and he told me to get myself transferred to University of Miami immediately and when I got there they put me on spinal precautions and discovered that the previous hospital had misdiagnosed me with a lesser injury. I have no doubt that I'd be a paraplegic in a wheelchair had I not got transferred.
I'm not saying that to scare you just to make sure you get the necessary care,there are many very good hospitals in that area. Please keep us informed so that your TDK medical/Nursing team may advocate for you. If you get really frustrated with them there and need someone else to talk to them I would be glad to. That is what I do as a nurse and that is what I'm doing for my parents and friends.
We'll make sure you get through this,try to relax and take a deep breath.
[[[[[[[Big gentle hugs]]]]]]] -
Molly, I am just catching up on all of this. ((((MC)))) I am so sorry for all that is going on in your life right now. When my friend Pooh tore her achilles tendon and was non-weight bearing for 8 weeks, she was able to get home care providers to come in. I am not sure if your finances will allow it, but they were fabulous. They fed kitties and changed cat boxes, cleaned house, did laundry and fixed her meals. Another option for cat care is to call your vet and see if they have someone they recommend that can come in every couple of days and help you keep up with B&W. You are in my prayers.
Posted 2 years ago by KYKAT 12 23 #
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I've been thinking about MC today too. I did look at the Mayo website on Chiari Malformation. I was encouraged by their section on how the surgery works. Apparently the brain itself is not operated on; basically they are just making more room for the brain.
Treatments and drugs
By Mayo Clinic staffTreatment for Chiari malformation depends on the severity and the characteristics of your condition. If you have no symptoms, your doctor likely will recommend no treatment other than monitoring with regular examinations.
When headaches or other types of pain are the primary symptom, your doctor may recommend pain medication. Some people experience symptom relief with anti-inflammatory or pain-relieving agents, such as indomethacin (Indocin). This approach may prevent or delay the need for an operation.
Reducing pressure by surgery
Surgery is the approach doctors use most often to treat symptomatic Chiari malformation. The goal is to stop the progression of changes in the anatomy of the brain and spinal canal, as well as ease or stabilize symptoms. When successful, surgery can reduce pressure on the cerebellum and the spinal cord, and restore the normal flow of spinal fluid.In the most common operation for Chiari malformation — called posterior fossa craniectomy or posterior fossa decompression — your surgeon removes a small section of bone in the back of the skull, relieving pressure by giving the brain more room. The covering of the brain, called the dura, is then opened, and a patch is sewn in place to enlarge the covering and provide more room for the brain. This patch may be an artificial material, or it could be tissue harvested from your own leg or neck. The exact technique may vary, depending on whether a fluid-filled cavity is present, or if you have hydrocephalus. The operation takes about two to three hours, and recovery in the hospital usually requires two to four days.
Risks and follow-up
The use of surgery carries risks — the possibility of infection or problems with wound healing. Discuss the pros and cons with your doctor when deciding whether surgery is the best alternative for you. The operation reduces symptoms in most people, but if nerve injury in the spinal canal has already occurred prior to surgery, this procedure won't reverse the damage.After the operation, you'll need regular follow-up examinations with your doctor, including periodic imaging tests to assess the outcome of surgery and the flow of cerebrospinal fluid.
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Where is MollyCat?
Posted 2 years ago by WillowandWindismom #
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She is at a managing stress seminar. (How timely!) :)
Posted 2 years ago by Kitten Whisperer #
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HERE I AM! Well I am more stressed now! I figured out thru the stress seminar, I don't do well with stress! SURPRISE THERE! I am a stress eater and hermit. That was my personality type. When I stess I want to eat and stay away from other people. I tend to be anti-social and deal with things on my own. Hmm, gave me some references of good books to look at and some seminars to listen to on CD to address the issues. I also have lots of material to read. It was a lot to go thru in such a short time. A girl I work with was there and it was nice to have someone to have lunch with-Panera1 YAY! but they were out of HOT X BUNS! And....on to other things. Yes, my head still hurts like the dickens, no I didn't get my ice cream cause I ate too much at Panera for lunch. BC, I trained at RUSH in Chicago for my Master's in the Neurology Dept. Imagine how tough that was to present my grad research project in front of that group of grumpy neuro's (about 50) who got to grill me for four hours! Shockingly in the end they gave me an A-! That is tremendous for that group! I still have the video of my presentation. As for Mayo, I KNOW they are awesome and have been a source of most of my knowledge. I also have a book that is from the world Chiari foundation that really lays it on the line. From what I understand my CM is "large" and I have a great deal of my cerebellar tonsils protruding out of my skull and being squished by my spinal cord (thus the symptoms). Right now the concern is that the nasty fall and bounce routine that I did last year where I bounced and hit the chair back and then chair arms when I fell off the ladder resulted in aggrevation of the symptoms. Why all of a sudden they are looking worse, no one knows or may ever know. I think they might be considering the decompression surgery as it is seeming there is so much pressure in my head. The neuro says it is because there is too much brain and not enough skull. Thus the excess brain is being pushed out the hole the spine passes thru. Therefore, you can imagine how that hurts. As my mom said when I told her about it last year "Oh, so now you are telling me you are so smart that your brain is too big for your head?" NOW YOU SEE WHY THAT IS A TOXIC RELATIONSHIP I wish not to encourage. I love her but I don't necessarily have to spend time with her or value her opinions.
Posted 2 years ago by mollycat71 #
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But what are they doing next, MollyCat?
Posted 2 years ago by WillowandWindismom #
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