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MVD surgery at UCL for TN - recovery time

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debbie48147
debbie48147

I am scheduled for MVD surgery at UCL for Trigeminal Neuralgia next month and am seriously scared. My husband of 57 had a stroke 7 months ago, my 35 year old marriage is collapsing and it is likely that I shall be facing separation and start of divorce proceedings at the time of the surgery. Can anyone tell me how long their reasonable recovery time was in order to return to work? I am self emplyed and contracted overseas with my husband so in one fell swoop will lose my income, my home and my husband. What is a reasonable recovery time to be fit enough to return to an Executive Level Administrator/PA/Office Manager role (assuming I can get one)?

2 likes, 34 replies

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  • saaz79347
    saaz79347 debbie48147

    Posted

    Debbie, firstly, i am sorry to hear all that you are going through.  I had MVD done 8  months ago.  Like other's have said accurately that each person is different. How one reacts to recovery from surgery will be different and complications that may or may not arise during surgery will affect the time out as well.

    I went in to MVD after doing a lot of research for around 1 year. During that time, after consulting with several Neurologiists and Neurosurgeons, i found that my case was not going to be solved by any other procedure but MVD.

    If things go smoothly you can expect full recovery in 6 weeks.  Mine unfortuntely did not. MVD took care of the TN pain, but i had many complications during the 8 - 10 weeks post surgery and my full recovery barring the still persistent side effects took 3 months. I can elaborate more if you like but please keep in mind that i would only be doing so to arm you with more questions for your surgeon that i wish someone would have told me pre-surgery.  By no means is my intent to scare anyone. I do realize that i am probably a rare case but what i did learn from all this is that 1. You must go to an experienced surgeon who has done at least a few of these ( i could not find one that had done my particular complication with the Basilar artery and TN nerve touching). 2. No surgery where they go into your head is ever minor ( MVD is frequently regarded as minor by surgeons). 3. Ask about after care ( my surgeons provided ZERO) I learned after surgery that they only care about the result of you being pain free from TN and any other side effects caused by surgery are treated as a price for being TN free. Please message me if you want to know more. i wish you the best.

    • army183
      army183 saaz79347

      Posted

      Thanks Saab

      What were your persistent side effects that occurred even though your TN pain had gone? Was thus double vision and/or local post surgical pain or did you have neurological deficits? How long did they last or are you still having problems.

      Thanks for your comments

      Kind regards

      Big D

    • army183
      army183 saaz79347

      Posted

      Sorry I meant Saaz, my iPhone did some autocorrection!

      D

    • debbie48147
      debbie48147 saaz79347

      Posted

      Saaz

      I have seen your response to Jill and am horrified by what you have been through.  You have my sympathies indeed. Do you regret having had the MVD and knowing what you know now, in your place, would you recommend anyone to have an MVD? Also, where was your procedure conducted?

    • army183
      army183 debbie48147

      Posted

      Sorry again Debbie

      I read UCL as university college hospital in London not as UCLA!

      So you're not in UK - the TNA is in UK but you can join from anywhere. Also. If you don't join you can still see all the posts in the many forum sessions, you just can't reply. Maybe you'll find some useful info on that site.

      Have a go

      Cheers

      D

    • saaz79347
      saaz79347 army183

      Posted

      Persistent side effects that are still present daily 8 months post surgery are - Sinus issues only on the TN side ( left eye and left nostril) allergy type burning and tearing eye.

      - Full numbness on the TN side of the face . They told me that this is a result of the partial rhizotomy they decided was needed in addition to MVD when they opened my up. They say that most of the time the MRI does not show everything as they can see once they are in.

      -Random burning, itchy/ crawling sensations under the skin. No answer for this other than the nerve misfiring incomplete sensation signals due to it being damaged. some nights this causes issues with getting proper sleep.

      -I can't eat on the left side because i have bitten my tounge  a few times as i don't feel it. Also eating chewy foods causes jaw pain. So maybe there is some muscle weakening on that side.

    • saaz79347
      saaz79347 debbie48147

      Posted

      Debbie, that's a tough question to answer. If you asked my 10 months ago i was ready for any surgery that would take care of the TN pain but all my research at that point in time pointed to MVD being the best solution with a fairly quick, complication free recovery. I know otherwise now. However, i have come to accept that once you have TN you are stuck with a give and take soltution. in hind sight i just wish that the after care was better and they were more proactive in trying to learn/ research of how they could take care of post surgery issues better rather than the " just give it time and it will probably go away" approach. I can say that if the pain ever returned i would not do a second MVD.  I can PM you about where the procedure was conducted and by who. While i am not happy at all with the after care and how the surgeons handeled my case, after being TN pain free for 9 months, i have mixed feeling about speaking bad about them. I do know that i would never go back to them. I would seak out other surgeons if needed in the future.

    • debbie48147
      debbie48147 saaz79347

      Posted

      Sorry I don't know how to pm you ! But would like to know where you had your procedure done. I am due to have my procedure done at UCL London by Neil Kitchen.

    • army183
      army183 debbie48147

      Posted

      Click on your contacts name, a little mail envelope appears, you can then mail them direct

      Cheers

      D

    • saaz79347
      saaz79347 debbie48147

      Posted

      Debbie, when you log into this discussion, click on the tab that says My account - then click on Forums - then you will see "Messages" on the top right corner under your name. You will see my message there. Let me know if you still don't see it. Good luck with your surgery. Mine was in the US not in England so rest assured my surgeons are far away from you!

    • debbie93153
      debbie93153 saaz79347

      Posted

      I'm very interested in knowing more about your experience with your MVD surgery... Just had mine done Feb 27th 2017. I'm experiencing terrible pain in my head.my hearing is Lost in the Left side which is my TN side. My surgeon says he found 2 areas where the Artery was lying on the nerve.ive never had an MRI done that actually shows this.we had 3 of them done but was told that they don't always show up. his plan was to go in and tickle the nerve...His words....He did find the 2 areas and placed the Teflon in.its been 11days now and I'm in such horrible pain. I don't feel the TN pain in my face but the pressure in my head from my ears and sound is unbearable.my head is going to explode.i See my Dr on Tuesday the 14th of March. Can you please tell me more about your experience and maybe ask my Dr some questions... Please

  • debbie48147
    debbie48147

    Posted

    Well... my pre-ops were carried out.... and at my pre-consent meeting after I had signed the paperwork, the Registrar calmly announced that my op had been put back until 5th March...,

    Which in hindsight has been a blessing as on 29th I developed a full blown head cold....

    Surgery has now been rescheduled AGAIN and the new day is 21st February... hey ho

    Let's hope UCLH in London doesn't change its mind again (at least until this head cold clears up)!

    • army183
      army183 debbie48147

      Posted

      I bet this is all part of the budget cuts (see the news about Kent healthcare trusts in Guardian and on line). They've stopped all non urgent ops until start of new financial year in April.

      I guess MVD is not urgent enough, or life threatening!!!

      Big D

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