Surgery

I had surgery on 7/31 and an now reporting in for other members to know what happened to me.

I feel that I have been incredibly fortunate in that my TN was diagnosed almost immediately and that it was managed pretty well on medication for two years. Nonetheless, the medications (gabapentin and oxcarbazepin) had to be increased over time as I had "break though" pain. It reached the point that the side effects were getting dangerous. I had increasingly low sodium levels and some confusion, imbalance etc. Surgery was recommended. I explored both gamma knife and microvascular decompression.

In my situation, MVD seemed to be the best choice. It was more difficult that I thought it would be at first and I was pretty helpless for the first week. I had an excellent support network though and very gradually over the next few weeks I improved. I am almost back to normal at this point. I am weaning off the medications very slowly. My balance is still a little "off" but it is still improving. They explained that during the surgery nerves are exposed to iar that normally would not be and so it takes them a little while to "settle down".

In general, if your general health is excellent and you have an excellent neurosurgeon, you may want to consider this. I would be open to chat about this if you have questions.

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!

My surgery was at 7:00 in the morning. After recovery they brought me to the ICU for 24 hours. I was pretty nauseous and sick during that time. They did another CAT scan to be sure that the teflon strip was in place. and then I was transferred to my room. I had so many tubes (IV's, catheter, etc) and that was a surprise. The next day PT cam in to get me up. I was so weak and dizzy that I could hardly even sit up! My whole body shook. They left and returned the next day and then I was able to dangle my legs. I was in the hospital 4 days and each day I could do more but I still needed a walker for balance.

I had a morphine pump but they told me that I didn't use it enough to warrant a narcotic pain medication when I was discharged so they told me just to use Tylenol. I was very lucky and never had bad headaches. I live in a colonial house with all the bedrooms upstairs. For one week I was either in bed or in a Lazy-Boy on the second floor. My husband brought me meals. I never lost my appetite! Going downstairs was problematic for me because of the dizziness. Every day I tried to do a little more. My daughter came to help with the first couple of showers (I was forbidden to take a bath) and to wash my hair. After two weeks I went back to the doctor and the stitches came out. I was still using the walker at that point for balance. Very slowly, I am weaning off the medications. I slept every afternoon for 2 hours or so as well as 9-10 hours at night initially. I am back to normal. My advice is to listen to your body and take recovery slowly. I think that if my husband was not so supportive I would have pushed to do more and it would have been a problem.

What hospital is your friend in NY using?

Dixie said:

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!

I know she said the hospital is in the Manhattan area and the surgeon's name is Brown. Does that information tell you anything? When I talk with her today, I will ask her the hospital.

Julie said:

What hospital is your friend in NY using?

Dixie said:

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!

I was just curious. There are wonderful hospitals in Manhattan. It is so important to trust your surgeon, don't you think? I had my surgery at Northern Westchester Hospital in Mount Kisco, NY. All the rooms there are private and my husband could stay with me. I always feel so vulnerable when in hospital so having him there was good for me.

Dixie said:

I know she said the hospital is in the Manhattan area and the surgeon's name is Brown. Does that information tell you anything? When I talk with her today, I will ask her the hospital.

Julie said:

What hospital is your friend in NY using?

Dixie said:

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!

How great that your husband could stay in the room with you! I am not expecting that, but didn't ask. I agree ABSOLUTELY that one must trust her surgeon completely. I did a lot of research on this TN site and read members' experiences before deciding to go to Johns Hopkins and see Dr.Ben Carson. I know in my heart that he is the best for me. I live in the middle Florida Keys and the traveling is an issue, but my health, my future, my LIFE are the most important considerations. My longtime friend who is a retired Registered Nurse (she and I worked on open heart surgery teams together in Miami) is going with me as well as my "significant other". Any information that tells me what I can expect postop, would be so helpful.

Thank you so much,

Dixie

Traveling so far to go to surgery must be difficult. You partner will be your main support. Just take your time.

We winter in Florida. In Fort Lauderdale. Your timing is perfect in that you will be back in paradise for the winter months! Good luck. If you have any more questions, I would be happy to talk to you. Each person is different though. One thing I should mention is that they seemed concerned about hearing loss as well as facial droop. They did attach probes to the top of my head to monitor this. My face did not droop but it did feel funny to me for a few weeks. It is fine now.

Dixie said:

How great that your husband could stay in the room with you! I am not expecting that, but didn't ask. I agree ABSOLUTELY that one must trust her surgeon completely. I did a lot of research on this TN site and read members' experiences before deciding to go to Johns Hopkins and see Dr.Ben Carson. I know in my heart that he is the best for me. I live in the middle Florida Keys and the traveling is an issue, but my health, my future, my LIFE are the most important considerations. My longtime friend who is a retired Registered Nurse (she and I worked on open heart surgery teams together in Miami) is going with me as well as my "significant other". Any information that tells me what I can expect postop, would be so helpful.

Thank you so much,

Dixie

Do you have hearing loss?

Julie said:

Traveling so far to go to surgery must be difficult. You partner will be your main support. Just take your time.

We winter in Florida. In Fort Lauderdale. Your timing is perfect in that you will be back in paradise for the winter months! Good luck. If you have any more questions, I would be happy to talk to you. Each person is different though. One thing I should mention is that they seemed concerned about hearing loss as well as facial droop. They did attach probes to the top of my head to monitor this. My face did not droop but it did feel funny to me for a few weeks. It is fine now.

Dixie said:

How great that your husband could stay in the room with you! I am not expecting that, but didn't ask. I agree ABSOLUTELY that one must trust her surgeon completely. I did a lot of research on this TN site and read members' experiences before deciding to go to Johns Hopkins and see Dr.Ben Carson. I know in my heart that he is the best for me. I live in the middle Florida Keys and the traveling is an issue, but my health, my future, my LIFE are the most important considerations. My longtime friend who is a retired Registered Nurse (she and I worked on open heart surgery teams together in Miami) is going with me as well as my "significant other". Any information that tells me what I can expect postop, would be so helpful.

Thank you so much,

Dixie

Do you have any hearing loss?

Keep in touch and when you winter in Ft.Lauderdale, make a trip to the Keys and see the real paradise!

No hearing loss, thank goodness!

We have only been to Marathon. I would love to go further down the keys. Maybe next winter.

Dixie said:

Do you have any hearing loss?

Keep in touch and when you winter in Ft.Lauderdale, make a trip to the Keys and see the real paradise!

Duck Key is about 8 miles before Marathon so you need to stop for a visit!

As I mentioned, keep in touch. I may have more questions for you!!

I wonder when I can put my contact lens in? Was your face swollen immediately postop? I drink a lot of coffee and Mountain Dew for the caffeine and probably will have a headache just from caffeine withdrawal. I mentioned to Buddy this morning that I'll ask them to give me some Mountain Dew, IV--ha, ha.

Oh yeah! I forgot that I did have caffeine withdrawal headache. You can get back to regular diet within a day if all goes well. If I had to do it again, I probably would have weaned down the coffee prior to surgery. I wear glasses so contacts were not an issue but to tell the truth, the glasses were problematic because the bandage went around my head and I couldn't easily fit my glasses on . I wound up taking one of the "arms" off my glasses for a few days. Even after that my glasses bother me. Contacts may be better because even if your face swells your eyeballs don't, right? I was pretty black and blue on my neck too. They had to detach muscle in my neck but then they reattached it. I jokingly said to the surgeon later that he beat me up in there!

Dixie said:

Duck Key is about 8 miles before Marathon so you need to stop for a visit!

As I mentioned, keep in touch. I may have more questions for you!!

I wonder when I can put my contact lens in? Was your face swollen immediately postop? I drink a lot of coffee and Mountain Dew for the caffeine and probably will have a headache just from caffeine withdrawal. I mentioned to Buddy this morning that I'll ask them to give me some Mountain Dew, IV--ha, ha.

If I reduce my caffeine intake, I'll sleep all day!! That is a good idea to remove one arm of your glasses so you could fit them on your head. What is this about detaching a muscle in your neck?!!! Tell me about that.

Dixie



Julie said:

Oh yeah! I forgot that I did have caffeine withdrawal headache. You can get back to regular diet within a day if all goes well. If I had to do it again, I probably would have weaned down the coffee prior to surgery. I wear glasses so contacts were not an issue but to tell the truth, the glasses were problematic because the bandage went around my head and I couldn't easily fit my glasses on . I wound up taking one of the "arms" off my glasses for a few days. Even after that my glasses bother me. Contacts may be better because even if your face swells your eyeballs don't, right? I was pretty black and blue on my neck too. They had to detach muscle in my neck but then they reattached it. I jokingly said to the surgeon later that he beat me up in there!

Dixie said:

Duck Key is about 8 miles before Marathon so you need to stop for a visit!

As I mentioned, keep in touch. I may have more questions for you!!

I wonder when I can put my contact lens in? Was your face swollen immediately postop? I drink a lot of coffee and Mountain Dew for the caffeine and probably will have a headache just from caffeine withdrawal. I mentioned to Buddy this morning that I'll ask them to give me some Mountain Dew, IV--ha, ha.

I don't know much about it. He told me the next day that he had to do this and that it might be sore. I didn't think to question him because I had so many other questions. The Lazy-Boy chair that we have provided just the right amount of support and it healed quickly. BTW, I found that listening to audio books helped to pass the initial week or two. It was better than reading (which I love).



Dixie said:

If I reduce my caffeine intake, I'll sleep all day!! That is a good idea to remove one arm of your glasses so you could fit them on your head. What is this about detaching a muscle in your neck?!!! Tell me about that.

Dixie



Julie said:

Oh yeah! I forgot that I did have caffeine withdrawal headache. You can get back to regular diet within a day if all goes well. If I had to do it again, I probably would have weaned down the coffee prior to surgery. I wear glasses so contacts were not an issue but to tell the truth, the glasses were problematic because the bandage went around my head and I couldn't easily fit my glasses on . I wound up taking one of the "arms" off my glasses for a few days. Even after that my glasses bother me. Contacts may be better because even if your face swells your eyeballs don't, right? I was pretty black and blue on my neck too. They had to detach muscle in my neck but then they reattached it. I jokingly said to the surgeon later that he beat me up in there!

Dixie said:

Duck Key is about 8 miles before Marathon so you need to stop for a visit!

As I mentioned, keep in touch. I may have more questions for you!!

I wonder when I can put my contact lens in? Was your face swollen immediately postop? I drink a lot of coffee and Mountain Dew for the caffeine and probably will have a headache just from caffeine withdrawal. I mentioned to Buddy this morning that I'll ask them to give me some Mountain Dew, IV--ha, ha.

Sorry, but what is "BTW" ?

Julie said:

I don't know much about it. He told me the next day that he had to do this and that it might be sore. I didn't think to question him because I had so many other questions. The Lazy-Boy chair that we have provided just the right amount of support and it healed quickly. BTW, I found that listening to audio books helped to pass the initial week or two. It was better than reading (which I love).



Dixie said:

If I reduce my caffeine intake, I'll sleep all day!! That is a good idea to remove one arm of your glasses so you could fit them on your head. What is this about detaching a muscle in your neck?!!! Tell me about that.

Dixie



Julie said:

Oh yeah! I forgot that I did have caffeine withdrawal headache. You can get back to regular diet within a day if all goes well. If I had to do it again, I probably would have weaned down the coffee prior to surgery. I wear glasses so contacts were not an issue but to tell the truth, the glasses were problematic because the bandage went around my head and I couldn't easily fit my glasses on . I wound up taking one of the "arms" off my glasses for a few days. Even after that my glasses bother me. Contacts may be better because even if your face swells your eyeballs don't, right? I was pretty black and blue on my neck too. They had to detach muscle in my neck but then they reattached it. I jokingly said to the surgeon later that he beat me up in there!

Dixie said:

Duck Key is about 8 miles before Marathon so you need to stop for a visit!

As I mentioned, keep in touch. I may have more questions for you!!

I wonder when I can put my contact lens in? Was your face swollen immediately postop? I drink a lot of coffee and Mountain Dew for the caffeine and probably will have a headache just from caffeine withdrawal. I mentioned to Buddy this morning that I'll ask them to give me some Mountain Dew, IV--ha, ha.

Dixie, it’s - by the way- xx

LOL--that is about all I know--ha, ha. I will remember that one! BTW, have a nice day--I'm still laughing to myself...

Jackie said:

Dixie, it's - by the way- xx

I am the friend that is having surgery in New York , it will be at Winthrop University Hospital, with Dr. Jeffery Brown, he is listed under the doctor tab on this site. It was great talking to Dixie yesterday...we are all in this together!!

I think I have found the doctor who will fix me, its funny, Dixie and I said the same yesterday, we both think (correct me if I am wrong) that we ended up where we belonged and with the doctor that is best for us. I had originally gone to Dr. Lim at Johns Hopkins, he had done a glycerine rhizotomy on me, but he did not want to do an MVD because I have mostly atypical symptoms. Dr. Lim referred me to Dr. Brown, who is also the head of the tn association. Dr. Brown also found a compression on my cartoid(sic?) artery and will be repairing that as well, hopefully ending the migraine headaches I have had since i was a kid as well.

You give me hope!!

Thanks, Wendy

Julie said:

I was just curious. There are wonderful hospitals in Manhattan. It is so important to trust your surgeon, don't you think? I had my surgery at Northern Westchester Hospital in Mount Kisco, NY. All the rooms there are private and my husband could stay with me. I always feel so vulnerable when in hospital so having him there was good for me.

Dixie said:

I know she said the hospital is in the Manhattan area and the surgeon's name is Brown. Does that information tell you anything? When I talk with her today, I will ask her the hospital.

Julie said:

What hospital is your friend in NY using?

Dixie said:

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!

I'm trying to cut down on my caffeine intake and am not doing well. I just slept for an hour because I had no caffeine as usual @ noontime. Well, I just downed a Moutain Dew and feel better. BTW, Wendy, that is "carotid" artery. How about that, I just used, "BTW"? Ha, ha.

Yes, Wendy, I agree, we are going just where we were meant to be.

How are you doing, Julie? Are you completely "normal"? What meds are you weaning off & are you off everything?

crashgirl said:

I am the friend that is having surgery in New York , it will be at Winthrop University Hospital, with Dr. Jeffery Brown, he is listed under the doctor tab on this site. It was great talking to Dixie yesterday...we are all in this together!!

I think I have found the doctor who will fix me, its funny, Dixie and I said the same yesterday, we both think (correct me if I am wrong) that we ended up where we belonged and with the doctor that is best for us. I had originally gone to Dr. Lim at Johns Hopkins, he had done a glycerine rhizotomy on me, but he did not want to do an MVD because I have mostly atypical symptoms. Dr. Lim referred me to Dr. Brown, who is also the head of the tn association. Dr. Brown also found a compression on my cartoid(sic?) artery and will be repairing that as well, hopefully ending the migraine headaches I have had since i was a kid as well.

You give me hope!!

Thanks, Wendy

Julie said:

I was just curious. There are wonderful hospitals in Manhattan. It is so important to trust your surgeon, don't you think? I had my surgery at Northern Westchester Hospital in Mount Kisco, NY. All the rooms there are private and my husband could stay with me. I always feel so vulnerable when in hospital so having him there was good for me.

Dixie said:

I know she said the hospital is in the Manhattan area and the surgeon's name is Brown. Does that information tell you anything? When I talk with her today, I will ask her the hospital.

Julie said:

What hospital is your friend in NY using?

Dixie said:

I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!