Thanks Helen. Right now that pain seems far away. At times I thought I was not living a viable life. But this summer was actually not too bad. My older daughter had a baby on June 20 and I was awash in baby-love. After that we had the most perfect stable sunny warm weather just about right through to my surgery. I was fairly active and happy all summer. Also my hospital had me taking quite a bit of iron as ferrous fumerate + vitamin C pre-op. A lot of people came rallying around me and so I went into the surgery in a kind of celebratory mood. The timing was perfect. I had pure faith in Dr. Gooderham. There is a large Christian community here on my island and although I am Buddhist and a lapsed Anglican, they prayed for me continuously for many days, in fact they are probably still praying for me now. It just felt like a bowlful of love. I am still basking in it.
How are you doing?
Helen said:
Wow Bella. What an operation. Well done I’m so thrilled for u that these problems have been delt with properly. I hope yr pain will ease fully once this recovery is done. You must have been in so much pain. Sending my love xx
Yes, Deej, it’s strange how intense the feeling of “what if they don’t find anything” is. I those willies too. And now, reading the surgical report I feel vindicated somehow. Although I know cognitively that TN could come roaring back anyway. Emotionally I am so relieved I could float away.
How are you doing?
Deej said:
Bellalarke, it’s so wonderful to hear you are doing so well!! I was also so relieved to hear they found issues with the nerve, actually nerves when I had surgery. I think that was my worst fear going in - What if they don’t find anything??. Hope you continue to improve daily!
Thanks Tiffinie. Yes, knowledgable surgeons for sure…and it is a nice little bonus when they are young and rather dashing in a quiet way!
How are you doing?
tiffanie said:
Congrats!! Hugs! High- fives!! Each day and week will be better than the next. Just keep that in your “head” heehee! No pun intended!! It really is a relief to be in capable hands. Knowlegeable doctors make ALL the difference in the world!! So happy that you are in the mend!! Tiffanie
WoW Bellalarke, No wonder the pain you were in! Sounds as though you had an excellent NS! I'm so pleased to read your uplifting post. So nice of your friends to help out in so many ways! You deserve it! Take advantage and take care of YOU! I pray for your continued well being and hope that your recovery is smooth.
I still feel so fortunate to have had the MVD with no complications. One day at a time my friend, thinking of you with warm thoughts ( despite the 8C temp outside here) lol
Please keep in touch,
(((( hugs )))) Mimi xx
Hi Mimi, yes, it was a three ring circus in there. Once one got triggered they all responded by the end of the day. The worst came in the last nine months or so with the hemifacial spasms, my face got so contorted. They didn’t really hurt physically but emotionally it was horrifying. I’m confident that part is over.
I’m praying for your continued recovery as well. For all of us.
(((( Big Hugs))) right back at you-
Bellalarke said:
Mimi said:
WoW Bellalarke, No wonder the pain you were in! Sounds as though you had an excellent NS! I’m so pleased to read your uplifting post. So nice of your friends to help out in so many ways! You deserve it! Take advantage and take care of YOU! I pray for your continued well being and hope that your recovery is smooth. I still feel so fortunate to have had the MVD with no complications. One day at a time my friend, thinking of you with warm thoughts ( despite the 8C temp outside here) lol
Thanks Tiffinie. Yes, knowledgable surgeons for sure...and it is a nice little bonus when they are young and rather dashing in a quiet way! How are you doing?
tiffanie said:
Congrats!! Hugs! High- fives!! Each day and week will be better than the next. Just keep that in your "head" heehee! No pun intended!! It really is a relief to be in capable hands. Knowlegeable doctors make ALL the difference in the world!! So happy that you are in the mend!! Tiffanie
Bella, I'm doing great. I still haven't decreased my meds any further (down to 1/2 the dose I took before MVD) but they seem to be relieving the TN 2 symptoms I have left and I have my brain back! It's awesome to have the ability to think clearly again at work. My husband thinks I should probably work on keeping my mouth shut a little more now though - HA! Before I didn't care enough about anything but getting through another bad day and now I have interests in EVERYTHING again. I'm back!! So glad to hear you are continuing to improve too!
Gee Bella, that was some operation to go through, you are a great lady and very upbeat, it gives us all a lift to hear of the success of it, wishing you well now and a pain free future, sending love to you. xxx
Bellalarke said:
Here I am at 10 days and my sister took me on the ferry then drove me to town to get my stitches out. Feels great! I can hardly wait to wash my hair tonight. Only one little problem...I was so excited to be out I forgot all about the two staples on the hairline on my forehead. Can you believe it! Going to ask around if one of the retired nurses on the island can do it so I don't have to go to town again tomorrow or the next day. (Now here's another laugh, I had an auto- correction on the last sentence that read retired "neurosis" on the island...probably the entire population!)
Had a whirl around the grocery store too and wanted everything in sight-:) I've been eating like a little piggy. Friends have brought food and goodies. Others have chopped wood. One friend came with a whole laundry basket of cedar kindling.
And this morning found a rat who met his maker in a trap another friend set yesterday. (My dear old cat was put down middle of June and it didn't take long for a rat to make residence in the garage). Terrible the things that make me gleeful.
On the whole I feel great. Still soreness around my magnificent incision and scar - and yes, I love showing it off and getting the reactions. I still have other feelings of tenderness and numbness, occipital and scalp still not great, throat and ear a little sore but not killer, so on the whole I am optimistic. For a person with the triple whammy: V, VII, and IX, I know that the best that can be done for now has been done. The next weeks and months will tell more the of the story.
I also got my surgical report today. One the one hand it is extremely gratifying and relieving to see in print that "there was a loop of super cerebral artery indenting the trigeminal nerve near the root entry zone" and "an anterior inferior cerebral artery branch contacting the VII/VIII complex from below as it coursed more superficially. Arachnoid bands were taken down. There was a small branch running toward the brainstem for this, which could not be taken. The vessel was freed of all arachnoid adhesions over a long a distance ...pledges were placed between stem ... To hold it away from the VII complex. This was effective ...the more proximal artery was Tisseeled to the petrous bone to ensure there was no kink. . Looking inferiorly at the lower cranial nerves...there was a vessel coursing between the lower cranial nerves, although it did not appear to have a bend in it, and as it was coursing between the rootlets it could not be taken away from the nerve contacts. The decision had been made preoperatively not to peruse dissection of the glossopharyngeal nerve. At this point we felt the the V nerve, as well as the VII/VIII complex was well decompressed. ... There were no intraoperative or immediate postoperative complications. The patient tolerated the procedure well." On the other hand I know compressions are not the be all and end all of cranial nerve pain. br/>
So there it is! Like the vessel coursing through the lower cranial nerve rootlets, this whole process from the first piercing ear pain through the misdiagnosis and the scans and tests to finding the right neurologist, the trials and errors or medications, and then like a breath of fresh air the easy consultation with the neurosurgeon on August 6th - is embedded in my conscious life - who said he'd schedule me in sometime between the middle and end of September and by god that's just what he did. No disappointment and waiting. Here it is September 30th and I am on the mend with a realistic expectation of how the future might unfold.
Finding this group in February kept me going through some intensely bad episodes. I am so grateful to everyone who has dropped a line or share their experience along the way.
Hi Gearodin, Thanks so much for the good wishes. It’s so strange how this whole surgery turned into a totally uplifting experience for me and my family. My pain outcome is uncertain but I have excellent doctors to work with who are willing to go forward. My head still hurts in the incision area and I’m still experiencing other issues but I am optimistic that its going to be so much better than last winter. And having this surgery is one big fat load off my mind! Wishing you the very best in your journey with TN.
Keep Heart
Bellalarke >
gearodin nic gearalt said:
Gee Bella, that was some operation to go through, you are a great lady and very upbeat, it gives us all a lift to hear of the success of it, wishing you well now and a pain free future, sending love to you. xxx
Bellalarke said:
Here I am at 10 days and my sister took me on the ferry then drove me to town to get my stitches out. Feels great! I can hardly wait to wash my hair tonight. Only one little problem…I was so excited to be out I forgot all about the two staples on the hairline on my forehead. Can you believe it! Going to ask around if one of the retired nurses on the island can do it so I don’t have to go to town again tomorrow or the next day. (Now here’s another laugh, I had an auto- correction on the last sentence that read retired “neurosis” on the island…probably the entire population!)
Had a whirl around the grocery store too and wanted everything in sight- I’ve been eating like a little piggy. Friends have brought food and goodies. Others have chopped wood. One friend came with a whole laundry basket of cedar kindling.
And this morning found a rat who met his maker in a trap another friend set yesterday. (My dear old cat was put down middle of June and it didn’t take long for a rat to make residence in the garage). Terrible the things that make me gleeful.
On the whole I feel great. Still soreness around my magnificent incision and scar - and yes, I love showing it off and getting the reactions. I still have other feelings of tenderness and numbness, occipital and scalp still not great, throat and ear a little sore but not killer, so on the whole I am optimistic. For a person with the triple whammy: V, VII, and IX, I know that the best that can be done for now has been done. The next weeks and months will tell more the of the story.
I also got my surgical report today. One the one hand it is extremely gratifying and relieving to see in print that “there was a loop of super cerebral artery indenting the trigeminal nerve near the root entry zone” and “an anterior inferior cerebral artery branch contacting the VII/VIII complex from below as it coursed more superficially. Arachnoid bands were taken down. There was a small branch running toward the brainstem for this, which could not be taken. The vessel was freed of all arachnoid adhesions over a long a distance …pledges were placed between stem … To hold it away from the VII complex. This was effective …the more proximal artery was Tisseeled to the petrous bone to ensure there was no kink. . Looking inferiorly at the lower cranial nerves…there was a vessel coursing between the lower cranial nerves, although it did not appear to have a bend in it, and as it was coursing between the rootlets it could not be taken away from the nerve contacts. The decision had been made preoperatively not to peruse dissection of the glossopharyngeal nerve. At this point we felt the the V nerve, as well as the VII/VIII complex was well decompressed. … There were no intraoperative or immediate postoperative complications. The patient tolerated the procedure well.” On the other hand I know compressions are not the be all and end all of cranial nerve pain. br/>
So there it is! Like the vessel coursing through the lower cranial nerve rootlets, this whole process from the first piercing ear pain through the misdiagnosis and the scans and tests to finding the right neurologist, the trials and errors or medications, and then like a breath of fresh air the easy consultation with the neurosurgeon on August 6th - is embedded in my conscious life - who said he’d schedule me in sometime between the middle and end of September and by god that’s just what he did. No disappointment and waiting. Here it is September 30th and I am on the mend with a realistic expectation of how the future might unfold.
Finding this group in February kept me going through some intensely bad episodes. I am so grateful to everyone who has dropped a line or share their experience along the way.
Deej, that’s really great to hear. Getting our brains back is aim! Wonderful you can function well at work and that your interests are kick- started again. Ha about your husband indeed…maybe he could learn to keep his thoughts to himself-
I’m still on full compliment of meds until my follow-up but sure look forward to that clarity of mind. Although interestingly, my brain did make a big adjustment to the gabapentin around the end of May and I have not be so foggy but man, I am still slow.
Big Cheers for Being Back!!!
Bella and Deej, so happy to hear you are both doing so well. Bella, you’ve been in my thoughts and prayers. I haven’t checked in too much recently but you have been in my thoughts. I have been feeling so much better I have been getting out more, enjoying life again. …I hope you are too!!
Hi Kathy; Hi I Elstep
Lovely to hear from both of you. Kathy I’m happy to hear you are getting out more. I remember when you went to your daughter’s soccer (?) game and you were so happy to be out, I’m still waiting for that but I know it will come.
I am learning my limits- tried to much last week so spent a few days face down…
My sister left on Monday and now I am alone but lots of friends and neighbours checking in to help out with housework. It’s very peaceful here this time of year so I am enjoying the view. Oh funny, just as I writing that a float plane took off in front of my house…what a racket! This is the Canadian Thanksgiving weekend coming up and a family who have a cottage down the inlet from me always arrive in their little yellow plane. Really, it’s quite endearing.
My biggest challenge seems to be keeping my mind off all the things it wants to do because I am not ready! So there is some restlessness to contend with…I knit a plain little baby hat on round needles and even that was too much.
I’m also not ready to go for a drive, the vibration is still too much. But I can floss and brush my teeth with little consequence so that is a nice little victory that of course is huge but so hard to explain to non-TN sufferers. I am optimistic. Leonard Cohen comes to mind: first we take Manattan/ then we take Berlin. I’m pretty sure that’s not what Leonard was thinking of when he wrote the lyrics but lyrics are for the taking, to make of them what we will.
I took a small stroll today and remembered to use my core to keep me safe. My mantra is: chest up, shoulders down, neck free. This keeps my head from bobbing around too much.
The surgery and the three days in the hospital are like a dream. I don’t feel any trauma from that at all. In fact I still feel uplifted by the whole experience (I’m sure the dilaudid helped- but it is far more than that. It was all the support I was able to take in. How it opened my heart. I was feeling so shutdown by the struggle to find the right neurologist to get the right diagnosis and then find such a bright and willing and matter of fact surgeon. He wasn’t one of the MVD superstar neurosurgeons. He didn’t have to be. He just had to be capable and I had no doubts.
All other wonderful people I’ve met here on the forum - those who have had MVDs, and those who do not have surgery as an option - are never far from my thoughts. Right now I ask for special prayers and good wishes for HCal who had her nerve cut last week after two MVD failures and two gamma knife failures.
Blessings to everybody.
Special Thanksgiving wishes to all my fellow Canadian TNers.
Keep Heart
Bellalarke
Sounds like you are doing amazing! I know it’s hard to look around and see all the things that need to get done or we want to do. I’m a big list maker, if I have it down on paper I can forget about it for awhile. It is crazy how the knitting can wear you out, but I totally get it!! Staying focused for any amount of time can be exhausting at first.
I can relate to the how all the love and support you get after an MVD opens your heart up again.People that I thought just didn’t get it, surprised me with their kindness.Sounds like you are in a great place:)
Hi Bella - I have been away for some time and just now saw your good news! So happy things went well for you with the surgery and hope by now you have regained some of your strength. Continued healing vibes to you for a future free from pain!
Hello my friends! I took some time away to recuperate after having family here for thanksgiving. It was a little rambunctious for me but I loved having them here and got my fill of baby love. We hung the baby’s jolly jumper from a beam, put an ottoman under him and that way I could play with him and hug him without picking him up.
So it’s been four weeks yesterday since having both fifth and seventh nerves compressed. I finally got a little spring in my step and had my longest walk yet. I’m great going along a flat area but where I live it is very hilly and I have a steep driveway. So the hilly bits are still baby steps - the second my heart rate gets up my incision area throbs! - and now I have to keep myself in check on the flat or going downhill or else I get carried away.
The area around the incision (from behind top of ear curving out and down to just below ear) is much less sore. I have pretty good neck and head movement. It is weirdly numb from just over and curving around top of ear and just about all the way down on both sides and still reacts to cool temperatures so I’m still wearing a merino Buff head tube on it. It “bleeps” if I lift something a little too heavy or reach the wrong way. So I’m trying to be careful.
I’m doing pretty good here on my own. Friends are still picking up food for me but I’ve been cooking. I ask for help with the dishwasher, etc. someone coming in once a week to clean but I really must be on the end because it bugs me that it’s not quite up to my standards…so perhaps this is a good sign! My normal neurosis kicking right back in- I find it hard not to be in charge in my own space.
So far the biggest improvement is in my three back molars - they don’t feel like they are being strangled by piano wire anymore, oh sweet relief! Also much better on the gum line. Haven’t had a HFS but still some tingling in lip. I sat with my face in the sun with a light breeze blowing!!! Now mind you I am still on full meds and it hasn’t turned really cold yet but this is promising.
Talking is still an issue if I go over my limit and don’t listen too the warning signs. This is hard because I like having company around.
So the bad news, still ear/throat pain which must be coming from the 9th nerve. Also scalp pain, which I was hoping was convergence but it might be Occipital. But now that 5 and 7 have been decompressed it’s easier for me to figure what is what. I have my follow up three weeks and my surgeon will have some answers. We’ll go from there.
All in all I’m feeling very positive about my surgery. Some energy returning.
Wishing everyone pain- free days ahead.
