Questions about preparing for surgery

Was there anything you wish you would have done beforehand? Any questions you would advise asking the neurosurgeon? I was thinking about freezing a bunch of meals ahead of time for the family to have easy meals while i am recooping. I just want to be prepared. I was also thinking of some other stuff. I know its not something that is discussed outwardly, but I know that anytime you undergo surgery, you run the risk of not making it out. Did any of you prepare a Living Will or anything like that? I have 5 children at home and I just want to make sure I have my ducks in a row. Any advice would be so appreciated. Thanks.

First off, don't feel stupid, crazy or weird. Surgery is a scary thing to think about + being on the drugs we're all on, etc = none of what you describe during your appt. surprises me. It's OK that you were spacey. Personally, I would not worry about your Dr. not liking you, etc. Keep in mind too that neurologists/neurosurgeons are uber-intelligent beings and sometimes I don't think they have the best bedside manner. My Dr. was/is super duper blunt about everything and it almost upset me a bit because I'm very emotional and like to be communicated in that manner — but he was there to do his job, and he did it successfully.

I totally understand you wanting to get back to NY as soon as possible — you really do feel better when you're home. However, they won't discharge you until they are ready to. I would say there is no way that you could drive yourself that far (well drive anywhere, for at least 10 days or so — its too hard to move your neck to see anything + you don't feel very good for a week or so). Secondly, I don't know if I could have sat in a car for that long to get home. The drive from my house to the hospital to my house is about 12 miles and it was OK, I don't know if I could have gone much farther than that. I felt nauseous for probably 5-6 days, I quit barfing after 3 but I still felt sick for a few more. I don't imagine you can take a train either — I mean really, you aren't going to want to do anything except be in bed sleeping for a week. Going to the bathroom is about all the walking you are going to do.

Also, I would see if you can schedule some friends or relatives to come be with you for at least your first week round the clock. You are not allowed to lift anything for 6 weeks — so you can't do laundry, bathe, make food, etc alone. People always love to help out so really, I would just see if you could get some friends to be your "handlers" as I referred to it as for at least a week, round the clock.

I think if they release you from the hospital after 3-4 days, it would probably be better to stay in a hotel close by for a few nights. I also don't think they would release you on your own either — they asked me who was going to be with me at home, what my living arrangements where like, how far away the bathroom was, if I had to go up and down stairs etc. Luckily my house is 1 level and the bathroom is 10 steps from my bedroom.

I hope this helps — I'm sorry to sound like a Debbie Downer ... please don't hesitate to message me if you have any other questions. I am so glad you are moving fwd with surgery!! It's totally worth it — after 7 1/2 weeks I feel AWESOME. You will too!


nonchiaro said:

Hello All and Jessica, you do have a lovely smile,

My name is Stephen and my MVD is scheduled for this Wednesday, the 21st.

As the day approaches, I’m getting more apprehensive.

My consultation took place March 1st. I was in Philadelphia the night before. My surgeon is on our “recommended list” for New York and seems to be the only surgeon in NY that has a web link listed in blue aside his name <and if anyone has experiences with this Dr., please share; thank-you>. My appointment took place at 8:45AM. I couldn't sleep well the night before. My sodium and chloride level were sub-normal <per blood test taken a few days prior and discovered later that day>. I was taking 900mg. of Trileptal and 1200mg. of Neurontin with little 150mg. Trileptal kickers as needed (which I did take that morning when I felt electrical whorlings in my jaw <my TN is very responsive to stress>). I awoke at 2:00AM couldn’t get back to sleep , got up and dressed and left Philly at 3:00AM.

After a lot of coffee and tasty Great Neck, NY bagels, I arrived in his office for my 8:45 consultation.

I was worthless. So totally spaced-out. The doctor had me walk a straight line as the police would have you do in a DWI stop. I didn’t do well. I would have been arrested. Then he had me subtract 7 from a 100, repeatedly---something that I could do surprisingly well/fast in more normal life and after I was stopped in the mid-fifties, he told me, “you missed one.”

He asked me to accompany him to his office which I did, leaving my list of written questions in the examination room. And I knew this and did not stop and excuse myself but continued onward with him.

In sum, I did not make a good impression. My most cogent question, repeated a few times, was: “what question should I have asked, but didn’t.” If you ask me, this is a lousy, stupid question under the circumstances. It neutered me of my proactive opportunities to speak up for myself and ask what is important to me.

What I am about to say may sound crazy, but I rue that consultation for I fear that the surgeon’s passion and motivation may not be as great as it may have been, had I been my more normalish self. I know I am misguided in my apprehensions. I know there isn’t any sliding scale of exactitude based on how likeable or admirable you present yourself in a consultation. But all neurosurgeons are human and, being human, I know at times one person may stir an extra something in my endeavors opposed to another. I wanted to be that stirrer. Instead I feel the dolt.

Here is my question…I have read many a story about post-MVD experiences. I would like to return to Philly, PA from Mineola, NY. I would like to return as soon as possible. Is there anyway in your experiences that you might see a post-surgical MVDer drive 135 miles upon his 3rd day/2nd night release…or maybe 3rd night/fourth day release?

Oh yes, on top of all my insanities, this:……I am alone. Please no boo-hoos.

If the consensus is: no way!

Can you see me taking a train back to Philly? An AMTRACK train?

And finally, exhausting my options…in your experiences, could you see me hiring a car and being driven down to Philly?

Thanks for your any responses.

And yes, per the 1st part of this message, I know it is all in my head. All in my head.

Thanx everyone

Hey Victoria —

My pain is also on the left side of my face — and glasses do bother me. I quit wearing contacts a few years ago because they bothered my eyes. I tried all types of brands, but they just never were comfortable. The glasses I have now are even larger frames than the ones in my profile photo — they are those plastic hipster frames and they sit heavy on my face. The do bother my sinus but contacts bug me more. Anyhow, I actually has a LASIK consult on Monday so now I'm just trying to figure out how to pay for that. I'd really like to get that done and just be done with glasses all together.

Stay strong — don't give in to fear. I know how hard that is. I have the quote "the secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly - Buddha" above my computer and I read that several times away. This the card we were dealt, and however much it sucks — this is our life. Re-prioritize, take care of yourself, love yourself. Find things, do things where you can see your body as a safe place, where it has no longer betrayed you. I do yoga, I hyrdrate, I nap, I say "no thanks" a lot, I take long hot baths, I let my house get super messy ... none of this will be permanent. We will all find a solution to feeling better.

Whoa, sorry for the emotional rant but I'm feeling great today and I want to share that hope. Never give up. Pain free and drug free ... you will be there soon, I know you will.

HUGS, Jessica


Victoria Swan said:

Jessica yu look very happy in your photo such an inspiration to us,,, can I ask does wearing your glasses or did make the pain worst or bring on an attack !! I wear contacts and when I do have to wear my specs it bring on the pain,,,alo were you able to wear them after ur op ?seems a funny question but that is worrying me as I won't be able to see with out them ,,,,, it's good that you are honest about the op and give all the detals that's what we need to here.
Tinah, I two worry that an MRI scan will find nothing and that will leave me desperate again at the moment I feel I have hope, I also dread not being cured,, and most people's pain is on their right side where as mine is the left so I worrie mine is won't be able to be fixed,, you have a very long drive,, I thought mine was far I have 4 hour round trip to go don't have to pay for my op as it will be on the NHS but then I can wait up to 18 weeks to get it done. I am taking my husband and 18 year old daughter to my appointment so they can back up how thisthingis effecting my life and with any luck I can have my op sooner,,,, and you asked if the pain is getting worse each day and mine is the pain breaks through my meds. , I am on 450mg a day I can't take any more they are making me vey sick at the moment, and I get so drowsy and confused and I have to go to work and teach which I must say is also getting harder to do but I'm going to keep going I have a two week break for Easter in 2 weeks .. We must keep strong as in a week we will both be seeing out surgeons and will be on the way to being pain free xx

Thanx Jessica, I took your advice and booked a pleasant looking hotel very close to the hospital for 5 nights after being released. I even have a couch where I can blob-out when the maid comes to change my linens and I have a little fridge for my pudding...ok, maybe jello...alright, for guests...I'll stock some beer and soda.

I am grateful to you and the wonder of this support vehicle for my guidance.

See ya on the other side....:-) s.


Good Luck Stephen! Let us know how things are going for you! We will be praying and thinking of ya!

oh good, i think that is perfect. i even asked my husband what he thought you should do (just thinking maybe good to get outside advise from a caregiver, you know?) and he immediately said you should book a room at a hotel for several days. keep us posted!! good luck to you ... cheers!! jessica

nonchiaro said:

Thanx Jessica, I took your advice and booked a pleasant looking hotel very close to the hospital for 5 nights after being released. I even have a couch where I can blob-out when the maid comes to change my linens and I have a little fridge for my pudding...ok, maybe jello...alright, for guests...I'll stock some beer and soda.

I am grateful to you and the wonder of this support vehicle for my guidance.

See ya on the other side....:-) s.


Hi Tinah ,how are you ???im ttrying to keep positive and my appointment this tuesday is keeping me going , the pain is getting worse but I’m battling on, I just want to say good luck tommorow when u meet wight the surgeon and do let me know how u get on and. I’ll do the same , I saw aphot of the scare on here a couple of days ago which was two day after surgery this scared me a lot, I show the picture to my family and they all seemed unfased which was good, have u seen it ?.. And Jessica if you have seen the photo is that what your scare is like ?. I did think it would be smaller . Good luck and I’ll sleek soon …

here are photos of what i looked like right after surgery, then the staples out and then now, 8 weeks later ...



Victoria Swan said:

Hi Tinah ,,,how are you ????im ttrying to keep positive and my appointment this tuesday is keeping me going ,,, the pain is getting worse but I'm battling on,, I just want to say good luck tommorow when u meet wight the surgeon and do let me know how u get on and. I'll do the same , I saw aphot of the scare on here a couple of days ago which was two day after surgery this scared me a lot,, I show the picture to my family and they all seemed unfased which was good,, have u seen it ?.. And Jessica if you have seen the photo is that what your scare is like ?. I did think it would be smaller . Good luck and I'll sleek soon ....

Thank you. Jessica this is so helpful , your cut looks a lot smaller than the other I have seen I need to ask my surgeon what he will do , I just need to know what I’m letting my self in for, is the pain still at bay ?? And have u any numbness in your face, ear, ect I will feel better when I have been on tuesday I will post how I get on c
Xx

Hey girls. Yes, I am getting extremely nervous. I am so afraid he is gonna say that I am not a candidate for surgery. I have been in a lot of pain. We went to Washington DC this week for spring break and it was so painful on the drive. My husband thinks it was the altitude changes thru the mountains. It rained yesterday and I thought I would not live thru the day. The pain is getting so bad. We met a high school friend for dinner and I felt like a moron talking to her. I kept forgetting where we were in conversation and not thinking straight. She is a phsycotherepist so she knew about my meds and how they effect people, but I still felt stupid. I still don’t know the difference is between tn1, tn2, classic tn, and atn. I have read so many different things. I have the shocking lightening strikes, but I also have this constant ache in my face. Its also on both sides so I don’t know what he is gonna say. I a m on 1800 mg og neurontin which doesn’t seem like very much compared to others on here. I am j

Ugh, I am trying to type this on my phone and it is fighting me. Sorry for the typos. Anyway, I just am afraid he is gonna dismiss me like so many others have I guess. Thanks for the photos jessica you have been so good to hang in there and keep us calm. I will update you all on here tomorrow after my appt. Good luck at your appt Victoria. I wonder how Stephen did at his? Anyone know?

Thank-you Tinah 276 for inquiring about me. I had my MVD on the 21st of March. Actually, it turned out to be a MVR (R=removal). When I was opened, Dr. JAB of Great Neck, NY found two very fat veins (about 1/4 inch) intertwined about the TN in such a way that decompression was impracticable. After a scan to ascertain that the veins were in fact veins and not arteries, the two veins were coagulated and removed. I do not know all the tecnical aspects of my operation. The Dr. visited me on my bed a day later and was ready, willing and able to field and answer any question, but I wasn't "ready". I gushed happiness that he was quite pleased with the outcome <he told my sister in recovery after the operation> and I was grateful. I still am grateful, very very grateful but now I have a bit more poise and could actually ask good questions. Perhaps in another 10 days or so I will meet with my Dr. again and have a information fest.

I was discharged on Friday. I had booked a hotel room for Sat. the 24th to Thurs. the 29th. Thursday evening, knowing that I would be released the next morning and feeling unexpectedly well, I canceled that reservation. Upon my release, I drove my car from the hospital to my sister's home some 10 miles away. My brother-in-law drove behind me. Upon my arrival, I rested and was given a hesitant "yeah, you're driving ok" nod from my bro-in-law.

I then drove south to Philadelphia.

Perhaps my early release, my accelerated recovery is due to the Dr. never having had to fiddle about with my veins, pushing and prodding spaces between the TN and offending veins and in that process pushing and prodding the brain, the facial nerve, inner ear etc. I do not know, but this is my thought.

Because I now do not have an offending vein in the neighborhood of my TN, I do not have the normal restriction limitations on post-op activity which seem to be aimed at stabilizing/protecting the positions of the pad(s) and vein(s).

I also integrated a suggestion I found here in a message, that being: post-op motion sickness/vomiting. One message I read had the anesthesiologist adding "gravol". I looked that drug up and found more potent relatives but forgot their names. Anyway, when I spoke to the anesthesiologist in pre-op, I told him that I get motion sick if i so much as look at a carnival ride and added, "could you add something like "gravol?" and he responded, "no, I'll add XXX (a very technical sounding name) as it is much stronger" and I responded, "good idea" (not knowing what I was talking about)....the sum and substance of all this is to tell you: I had no post-op sickness. Again, not being a Dr. I can't tell you why...whether it is more proportionally the result of no manipulation near my inner ear or the anti-sickness meds, but I can tell you this: i did not feel sick. I did not vomit.

I have a lot of numbness about my ear. I have a caul of numbness over my temple. My incision site is still completely numb. In time, I suspect I will discover to what extant the removal of my veins may contribute to numbness, if at all. And if the removal of my veins does cause a numbness, to what extent my brain architecture and blood system may adapt and resupply the numbed area. The numbness about my temple is not a full numbness but a half-numbness.

Tina, I think TN1 is the newer label for Classic TGN. TN2 is the newer nomenclature for Atypical TGN. The Classic TGN evidences the periodic electrical spasms. The Atypical TGN amounts often to a constant or semi-constant non-spasmotic, lower grade pain...dull pain, dartish pain, quick ouch pains.

I want to thank all members and Red for making this site. I found this site thee most important resource. I have used your experiences to my benefit in ways I would have never thought possible.

And I'm still here. Thank-you. Be well, stephen

Stephen ,, in=m so glade all went well for you sounds like you are making a fantastic recovery.. I have my appontmwnt with a surgeon tomorrow so am hoping and prayin that he will be able to help i frll he is my last hope n=but have the same fears as Tinah.. keep up posted as to your recovery.. im in hte UK an so hoping not to have to wait months for an operation as that seems the norm

keep upi posted xx

Hooray Stephen so great to hear from you! I'm thrilled for you and so glad you were able to get home, not feel sick, etc. I find it so interesting that none of the surgery stories are the same. Sometimes there are decompressions, other times there are vein removals, sometimes there is nothing like me ... it's so complicated and really so individual. I'm so pleased that you are on your road to recovery.

I am completely off of Tegretol and just 50mg left on Lyrica. Should be completely drug free by the end of the week. I feel pretty awesome. I have some minor twingy feelings here and there but I'll take it!

I saw this quote from Elizabeth Edwards on Pinterest this morning and made me think of you ladies, "She stood in the storm and when the wind did not blow her way, she adjusted her sails." Tinah can't wait to hear about your appt. today ... Victoria, can't wait for your appt. tomorrow. Hugs to you all.

That is so reassuring Stephen! So glad to hear you are doing so well.

Well, I ended up crying a little during todays appointment. I think the stress and worry leading up to it got the better of me. But the dr is so awesome and calm. He talked me thru everything and then, get this Victoria, said he could schedule me for surgery THIS FRIDAY! Of course, I can’t do it that soon, my hubby has to get the time off and we have to work on parents coming to watch the kids, so he scheduled me for april 24. I couldn’t believe it was so soon! I wasn’t prepared for it to be so quick! I have been praisin God all day ever since! LOL! Now I am kinda nervous about the actual surgery, and hope it is successful. He is going to do the left side since that is where most of the pain is. If the right gets bad, I will have to have it done again. I am so ok with that!

Victoria ~keep us updated tomorrow! Maybe you will be pleasantly surprised and get in quick too! I will be praying for it!

Thank you Jessica so much for being so open & honest in your answers. I am going in for my MVD surgery tomorrow and just hearing your success story helps so much. I am so ready to get this done & over with and hopefully get off these meds. Good luck to all of you!

Hi Giki — I'm so looking fwd to your recovery and NEW life ahead of you!! Your friends and family (and yourself!) will be so happy with a new better version of the old "pre-TN" you. Sleep well. This will all be behind you before you know it. Keep us posted. HOORAY!! Hugs, Jess


giki said:

Thank you Jessica so much for being so open & honest in your answers. I am going in for my MVD surgery tomorrow and just hearing your success story helps so much. I am so ready to get this done & over with and hopefully get off these meds. Good luck to all of you!

Thanks, Jess! I appreciate it & will update you in a few days!

JessicaG said:

Hi Giki — I'm so looking fwd to your recovery and NEW life ahead of you!! Your friends and family (and yourself!) will be so happy with a new better version of the old "pre-TN" you. Sleep well. This will all be behind you before you know it. Keep us posted. HOORAY!! Hugs, Jess


hi Jessica,Tinah and every one ,,

just back fron the surgeon,, it went ok,, he want me to have a MRI scan to see if there is a vein over the nerve,, also said that I have some sypmtoms not typical of TN, like pain above my eye and that I get pain at night does anyone else???/ feeling a little low and worried as he said it could be something else,,, but if it is the nerve then i will be able to have the operation before the begiing of July, i did get upset as I just want this over,,, and of course i get pain at night as i always used to sleep on my left side and sometimes wake up laying on that side and then have to move,, so im left not knowing where i am and what wrong with me ........ but he was very nice,, my husband has said we will go for a seciond opion if we have to .. at least i ahve this MRI scan but need it sopner ather than later and that could take weeks to come through so will have to wait and see im not feelin very positive but am going to have a good cry as im here on my own ans then I know ill be ok,,,

Tinah such fantastic news im so please for you, get your operation done and dusted so you can get on with your life and start living again keep me posted on evry thing so at least if i do have the op im ready

lots of love Victoria xx

Hi Victoria,

Towards the last half of my TGN experience, I had more pain at night-time than any other time. Just shifting my head from one side to another would/could cause a spasm when my TN was in an excited state. When I got out of bed, I had to face the ceiling and raise my head/body at the same time. There I needed to pause and shift my whole body to the side---pivot---keeping the head and chest aligned as it was when i lifted my head. Then I had to get up and pause, pause for seconds, before i walked away....

I read somewhere that the pain we experience is greater at night when we aren't working/moving our bodies.

I would also get spasms when I fixed my blanket eg: pull it up, over and up etc. and I was then more asleep than awake. Finally, I would also get spasms from dreams when the drama of a dream would spike...not even nightmares but dreams where I was apprehensive or scared or reacting strongly towards something/someone.

Like I said, in the beginnings, my triggers were more often oral and during the day but in the later half they became movement of my head mostly when i was in bed at night.

I believe that a request for a MRI is pretty normal and routine. Mine was a "with contrast" and "without contrast". The "with contrast" part is where they gave me a shot of some traceable liquid in the crux of my arm. The MRI people also put the MRI results on a disc and gave me a copy. When I went for my consultation, the Dr. played my disc and showed me where there was a intersection of TN and vein. I didn't really understand it all but I felt reassured he saw it plainly. Good Luck Victoria. You are not alone.