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MRI Results

Posted , 8 users are following.

Hellsfairy
Hellsfairy

Hi guys, I've just hade the results back of a recent MRI scan, and it is showing blood vessels compressing the trigeminal nerve. I have an appointment with my neurologist on the 18th of next month to discuss trearment. I know a few of you have had MVD surgery, and I think this might be the route I will go down. However, I am 63 years old, and have had polio(so anaesthesia is not as straight forward as usual). Any idea how long you were under the anaesthetic? Plus is MVD the only, barring exceptions, longterm solution?

Many thanks

Lynn

0 likes, 25 replies

25 Replies

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  • Stupid1
    Stupid1 Hellsfairy

    Posted

    Hellsfairy,

    Which ever procedure please let your whole family decide on what procedure u have. Get phamplets that has all procedures info from ur neurologist, then go to doctors who does each procedure and talk with them, dont do like I did go to neurosurgeon and he says MVD can't be. One after other procedures have been done. I had my MVD surgery done on July 27 2016, was suppose to be in hospital 4 three days, well I got out on August 8, 2016.

    I have double vision and numbness on rihgt side of my body, and wish I had tried other procedures b4 MVD.

    I was in perfect help and was walking 12,000 steps a day, it took me almost 2 months to get out of bed.

    I am back to walkin with my walker, I use a walker now, because of the double vision.

    Seeing two of everything horizontally is exhausting,

    Check out other procedures with family members b4 u let any doctor do anything to you.

    Maybe I am that worse case scenero wwho things go wrong with, but my advice to u would be that u

    look back on this forum and read what happened to me after MVD surgery.

    Now I will say that I am allergic to all sort of meds and I do have allergy to anaesthesia and this could maybe something that affected but my neurologist and other doctors they all say no.

    Read my story and some others, MVD is not for everyone,.

    My shocks stopped so far, but I still get slight pain in my gums every day.

    I am not trying to lead you away from MVD surgery, but know this decision is between family members and the after effects is the family.

    Whatever procedure u decide to have come on forum and let us all know how it went, it will help others determine their procedures.

    Walking my 12,000 steps with this waker and my numb thigh, leg and labi and my firever double vision. I will never stop walking it is my get away time. My hubby really hates driving me to and from the malls. LOL

    Anyways the numbness is moving up right side of my body every day and I am not going to let it stop me from walking. I believe GOD is working it out for me(us).

    My neurologist has scheduled another MRI for my head to try to find out why I have this numbness and where it is coming from.

    Dr. Kevin Wood, he is who sent me to Dr. Phelps the neurosurgeon, and was very upset to find this surgeon had done surgery without informing him of date and time.

    Dr. Kevin Wood talks to me because my surgeon won't. As for my neurosurgeon, Dr. Jeremy Phelp he says he has released me and he will not have any others appointments with me.

    Dr. Jeremy Phelphs, says I should go to my primary care doctor and she needs to help me with my problems that started developing while I was under his care in hospital.

    Yes, this numbness started while in hospital, neurosurgeon didn't take care of it when I was in hospital, not even after I was out. Had it not been for my neurologist I would not have known that I had a stroke during NVD surgery.

    This is but a bit of my story.

    This is y I will forever advise other TN suffers to check out other procedures b4 choosing this very invasive brain surgery. MVD is brain surgery, use it as a last resort.

    My neurosurgeon sent his P.A., Lee Langley into my room and she kept asking when did I want to go home, I kept asking when is numbness in my thigh and then my labia going away Langley, she always said, "raise your legs, bend ur toes, make toes like a bird," that was it."

    I am finished voice texting for today so have a GOD day.

    God bless

    us and keep us and give us peace

    • Hellsfairy
      Hellsfairy Stupid1

      Posted

      Many thanks for your reply. I am so sorry to hear what you have been through, my heart goes out to you my dear. I will definately take your advice about what I decide to do next.

      Take care x

  • Valkyrie
    Valkyrie Hellsfairy

    Posted

    Greetings Hellsfairy,

    please consider asking your Neurologist about Gamma Knife Surgery. Its much safer. I have heard that MVD sugery is permanent for some but 3-7 years is the general estimate. Gamma Knife releif is permanent for some but generally lasts from 3-5 years. Both procedures can be done again or you can have one done and then the other in most cases. Please question your Neurologist fully about these and the other procedures available. Dont just immediately take what they offer without grilling them thoroughly. I was immediately offered MVD when I went to one Neurologist even though they could see no blood vessels against the nerve and the Radiologist who did the MRI had quietly put in his report that he thought it could be the large meningioma that was causing the pain. I went to a different Neurologist who noticed that remark and who recommended Gamma Knife. He said he would do both the nerve to desensitise it and also the meningioma. Had the Gamma Knife and I am currently pain free and gradually reducing the pills slowly. Get lots of info and ask about the effects your other health concerns will have during the surgery. The first surgeon I spoke to about MVD said my heart condition would not be a problem so i rang my Cardiologist who did not agree that this was the case so follow up if you can. Ask your GP too if you have had the same one for a while. Information is the key so question everything. I wish you good health and a pain free life. Please keep us in the know. We are all interested in you.

    • Hellsfairy
      Hellsfairy Valkyrie

      Posted

      Thank you so much for your valuable information, I shall make sure I do plenty of questioning before deciding on any treatment.
  • Tnhurtsme
    Tnhurtsme Hellsfairy

    Posted

    atleast there is a possibility to be fixed i can't even do it without cutting the nerve because my neuralgia is neuropathy it hurts sometimes i cant stand this monster im trying a new drug called amitriptyline but ive been on it two days an haven't noticed anything

    • wanganui
      wanganui Tnhurtsme

      Posted

      You need to give amitriptyline at least a month to see if it will help.How does your neuropathy present itself? Sometimes I think I have neuropathy rather than tn2. What's this about cutting the nerve? Sounds drastic....! Hugs!

    • Tnhurtsme
      Tnhurtsme wanganui

      Posted

      im on oxcarbazepine an gabapentin an amitriptyline because the pain is so bad if i dont take oxcarbazepine. my pain is a throbbing stabbing electric shock burning, pressure in my face on leftside it sucks really bad with out my medication
  • mallory22442
    mallory22442 Hellsfairy

    Posted

    As far as I can Learn if you are not too old to be put to sleep this isthe most long lasting proceedure. I am going to have this surgery Oct 6,2016 at mayo Clinic which is rated the number 1 hospital in nuerosurgery
    • Hellsfairy
      Hellsfairy mallory22442

      Posted

      Thank you Mallory.  It's not so much my age(63) it's more my tolerance of anaesthesia that is my main concern, especially if it's a more lengthy procedure. I wish you all the best for your upcoming surgery!

  • army183
    army183 Hellsfairy

    Posted

    Hello again Hellsfairy!

    What a saga you've been through and what a series of both positive and contraindications we've seen on this forum. All this re-emphasises the need for careful research before taking the MVD plunge.

    Like you, I've recently had a high quality MRI and this showed a "beautiful" compression of the nerve by an artery on the left hand side (my side for TN1, which I've had for about 3 years). I'm a hot case for MVD and that will give a permanent solution in most cases. But we've seen some problems on here about that. Are you on the Trigeminal Neuralgia Association membership? If so you can scan the huge forum database on this subject and that will help you with a considered opinion. Also, their phone helpline is really excellent and one of the medical consultants on the association is a neurologist with direct experience of TN.

    You can find them just by looking for TNA on google. As you're in the UK (and living in god's country, you lucky girl) you may well have been in touch with TNA already.

    My neurosurgeon and his team seems to be quite switched on re MVD and also comparisons with the other less-invasive interventions. Having a good team of experts to discuss your case with is very important. I hope you get some further good advice from them, including a full risk assessment for MVD which will help you decide. I know this is not a very common condition but there is quite a good national and international database now which all the consultants have access to. Ask your team for a full assessment about this, it will help you all decide what really is the best for you.

    Good luck

    Keep safe

    Big D

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