Mollycat update


This topic contains 56 replies, has 32 voices, and was last updated by Avatar of WillowandWindismom WillowandWindismom 5 years, 7 months ago.

Viewing 30 posts - 1 through 30 (of 57 total)
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  • #26394
    Avatar of mollycat71
    mollycat71
    Participant

    Cricketsmama thought it might be a good idea that I start a new thread so no one misses this info. I think she is right. I went to the neurologist today and was checked for my “new problems with my foot clawing up”. She immediately got out her prescription pad and wanted to increase all my meds. I said “NOOOOOOOOOOOOOOOOOOOOOOOOOO! No More! I don’t want to be in this drug coma anymore!” I already take 16 Neurontin a day in addition to all the other meds I am on for my headaches and they are NOT WORKING. She seems to dismiss the whole thing and I ask if it might have something to do with my CM. She looks at me and says “What Chiari Malformation?” I say in return “The ONE YOU diagnosed me with 8 years ago!” She acts completely clueless and has no idea what I am talking about. She keeps asking me if I saw her for that. I said YES and that I have the films and the radiology reports at my house stating I have a CM. I remind her that we have discussed this being part of the reason my headaches are so bad! She is still clueless. She goes thru my whole file with me (ITS HUGE) and NOWHERE is there mention of a CM. NOWHERE! She asks me when and where I got these CAT/MRI tests done. I told her and she told me to sit tight while she goes and tries to pull up the reports. Then there is a knock on the door and she pokes her head in “May I bring in my student?” Sure, why the hell not? They both have a really glum look on their faces. She holds up the reports and says “These change EVERYTHING” It appears that your Cerebellar tonsils are hanging down out of your skull and are just exposed.” We need to get tests run IMMEDIATELY to see if there is a change in the status of these and if they are being choked off by the spine and your skull. (Sounds lovely doesn’t it?) I have a EEG tomorrow which measures brain waves/activity and another MRI immediately. She said that she will have the name of a “specialized neurosurgeon” for me tomorrow as this is a very specialized surgery. I started crying then as the enormity of the whole thing came down on me. She put her hand on my shoulder and very geniuinely said “We’ll get through this together”. I knew that meant they were talking about cutting my head, skull, and brain open! I am having a hard time wrapping my head around that one! Please please please keep me in your prayers. I AM REALLY SCARED! I keep crying thinking about it.

    #407578
    Avatar of jymberry
    jymberry
    Participant

    Oh Mollycat that sounds terrifying! I know I’m not the only one here who hopes that everything works out for the best

    #407579
    Avatar of mollycat71
    mollycat71
    Participant

    Jym, actually that really means a lot to me. Each individual wish means a lot and I appreciate every one!

    #407580
    Avatar of WillowandWindismom
    WillowandWindismom
    Participant

    You know that we all love you, MollyCat. And we are all praying as hard as we can. I know that you’re scared – I wish that there was one of us near by to be with you. But we are there, even if you can’t see us.

    #407581
    Avatar of cricketsmama
    cricketsmama
    Participant

    MC, you have lots of wishes, prayers, white light, positive thoughts. You are our family and we are here for you girl!!!! If you need to talk ever…you can call me…shoot me an email and I can give you my phone number…((((HUGS))))

    #407582

    Mollycat…..I am so sorry. At least your doc figured out what is going on and hopefully remembers your orginal diagnosis. Please know that you are in my prayers for a positive outcome from your tests tomorrow. I will be thinking about you. When you get all this cleared up, just think how much better you are going to feel. Cry all you need Mollycat. Get that out of your system so you can go full steam ahead and tackle this issue. Just in case, here is my virtual shoulder to lean on.

    {{{{{{MC}}}}}

    #407583
    Avatar of katthays
    katthays
    Participant

    MC, I am praying for you, we all are! I posted more on the original thread….we all are pulling for you. Just get through these tests for now. I am praying for a positive outcome for you!!!!!

    #407584

    bump

    #407585
    Avatar of Moonshadow_NZ
    Moonshadow_NZ
    Moderator

    Sending lots of Healing Energy and Positive Thoughts to you MC. At least your Doctor has woken up to your condition and things are moving ahead. Cry all you want as it’s a great stress reliever, know that all your litter mates will be here to support you when you need it. {{{hugs}}}

    #407586
    Avatar of GreatDane
    GreatDane
    Participant

    Saw this on the other thread. I’m so sorry, Molly. It IS scary, but as Tina reminded us, also think how much better you’ll feel afterwards.

    Are you near any otehr TDk’ers who could help with the kitties?

    Instead of putting them up with the vet, you may try a petsitting service so they get to stay at home. It would most likely be cheaper than paying the vet for boarding.

    #407587
    Avatar of 2 Popoki
    2 Popoki
    Participant

    Huge hugs and positive energies for MC…

    #407588
    Avatar of mollycat71
    mollycat71
    Participant

    My closest littermate is DaisyMew. The girls aren’t superclose to anyone or my family either. Kinda alone here.

    #407589

    Mollycat, Please know that you are not alone. Even if we can’t be there in person, we are here, just a quick click away. Keep us posted about the appointments tomorrow so that we will know what to do next.

    HUGS, BIG HUGS

    #407590

    Thank God you spoke up about the CM, MC!! I’m so glad you are getting follow up with another specialist. Do you have any friends who can help you out with the kitties and with your recovery? I’m very hopeful now that your doctor is up to speed that you can get through this quickly with great results. {{{{hugs}}}}

    #407591
    Avatar of GreatDane
    GreatDane
    Participant

    Molly when I volunteered at the tennis tournament and was only home 5 hours every night, a friend of mine offered to come give Bobby his pill every day. Bobby didn’t know her and the boys aren’t used to visitors, but it worked wonderfully. Even if your friends or neighbors don’t know the girls well or at all, it could still work.

    Please keep us posted on everything. How’s the headache?

    #407592
    Avatar of mollycat71
    mollycat71
    Participant

    Oh GD, the headache stinks! Like I told the neuro, I just want to pop my eyeballs out! They hurt so bad!

    #407593
    Avatar of GreatDane
    GreatDane
    Participant

    Awwww, headaches are the worst! Mine are much improved since last week. Between the meds and caffeine withdrawal last week, I screwed up every night when I settled the register – my head hurt so much, I couldn’t do anything!

    #407594
    Avatar of SoxsMom
    SoxsMom
    Participant

    Yes this is scary, but you must get it taken care of and the sooner the better. Please know that you have your name on my teams prayer list. Prayer can help lift you.

    Next, did she tell you the name of this specialized neurosurgeon? It is time to check this person out. Make sure you know background information. If you don’t have information and feel uncomfortable you may want to see if you can switch to another neurosurgeon.

    Last, you need to be able to find a way to relax so that your stress level isn’t overwhelming. No need to add a blood pressure issue to the mix. This is probably hard–for me I would be a basket case, but you are handling things well. Find something you enjoy doing, and do it every day–find time!

    It may not seem like it because TDK isn’t standing right there–but believe me you are not alone. We are with you in spirit and thought.

    #407595
    Avatar of mollycat71
    mollycat71
    Participant

    I know you guys are! I felt you guys with me when I said “NOOOOOO! No more meds!” That was unlike me, it was like the force of all the TDK’ers were there behind me pushing me! Something just roared up in me and made me speak up. My parents always taught me to respect people in positions of authority (MD’s included) and not speak up. Funny how that sticks with us as adults. I am supposed to get the names of the neurosurgeons tomorrow when I go in for the EEG.

    #407596
    Avatar of AZDEBRA 5/27 & crew
    AZDEBRA 5/27 & crew
    Participant

    MC, prayers and positive energy out to you on the doctor’s visits and tests. Hope that your doctor has woken up to her initial diagnosis and now the very important follow-up with these tests and new doctors. {{{hugs}}}

    #407597
    Avatar of cricketsmama
    cricketsmama
    Participant

    MC…doctors are not gods and you can speak your mind and discuss what you need and want. It’s hard..My mom was the same way..whatever the dr said goes..they put on their pants just the same as us and they may know a bit more but they need our input for them to help us. I am proud of you for speaking up!!

    #407598
    Avatar of mollycat71
    mollycat71
    Participant

    You think I’d know cause my dad was a dentist but still it is hard for me to do it! LOL

    #407599
    Avatar of bethany
    bethany
    Participant

    oooh heck didn’t she read your chart before she saw you? usually the doc walks in with some info on you , and your lists of dx are usually somewhere on the chart… anyway , i am glad she is getting you set up with a neurosurgeon , and it will all be okay.

    what you are going through is scary , and you are feeling is very normal. you are not alone , we all love you and are here for you. i am so glad you spoke up about your meds. not enough people speak up and say noo !! you’ve got guts !!

    lydia and i send you love and hugs and many prayers. please keep us update on what the tests say. wilma and betty have allready been on the phone with lydia and they are watching you closely. (((((hugs))))

    #407600
    Avatar of kittymom
    kittymom
    Participant

    MC, you are soooo stressed right now. Do you have anyone who can be an advocate for you, as you progress thru your tests? Someone who is there to help you question the doctors when you get the results of your tests???

    {{{MC}}}

    #407601
    Avatar of SoxsMom
    SoxsMom
    Participant

    Kittymom I think you are right! MC you should take someone with you. They could give you the support you need to deal with a horrible crisis.

    #407602
    Avatar of mollycat71
    mollycat71
    Participant

    I don’t have anyone here. That makes it tough. Anyone I know is a co-worker and of course they all work when I do. I wanna pluck WWM out of Texas and take her with me! Windi and Willow can play with Betty and Wilma!

    #407603
    Avatar of kittymom
    kittymom
    Participant

    {{{{{{{{{{{{Mollycat}}}}}}}}

    #407604
    Avatar of SoxsMom
    SoxsMom
    Participant

    Oh MC I wish that we could send you WWM. Please stay strong and do not agree simply because you see the Dr. as an authority figure. I have done this and it costs big time! Please remember to ask for time to think things through.

    #407605
    Avatar of Shelley
    Shelley
    Participant

    Oh MC, I am so sorry to hear this–I wish I could be there to take up some of the burden for you–I would be in a heartbeat if my hubby weren’t going through his own medical issues–I swear if I didn’t remind him to look at his calendar every day he would miss half of his appointments!! In the meantime I will pray for you. Hang in there honey, we are all behind you!!

    #407606
    Avatar of Meowzers
    Meowzers
    Participant

    Mollycat, my prayers are with you to resolve this, and I send healthy healing vibes to you.

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