Surgery 6/27 at SBI - update

[jerseygirl]

Hello, everybody! Just wanted to post an update - 3 weeks.
My eye issues are much better, almost good. I could drive but am a rightie and right side barely works. I walk unassisted by myself already 6 days but unable to type yet. I can point and click already but my handwriting is terrible. I remember that the first time I did everything with a left hand for a long time. I hope that this is not going be that long.

My speech impediment is a lot less, almost nonexistent since yesterday. Therefore, my trigeminal numbness is a lot less as well. I hope it goes away completely just like the surgeon said. My mood oscillates depending on how I do and what progress I get for the day. I would post more if not for the right hand.

Completely forgot that I have no headaches!

     Eve 

[eugd]

Great, glad you are recovering on track, speaking of mood oscillations, I was an emotional wreck a few days after my surgery.  I was watching a Monk marathon the weekend I came out of the hospital and was balling tears for no apparent reason, and then it stopped.    Good luck hope you recover quick…

[jerseygirl]

Eugd,

It must be the steroids. How much did they give you? Also, when did you start driving?

        Eve

[krbonner]

Great to hear from you Eve!  Rest often and I'm sending lots of hugs!

Katie

[neal r. lyons]

Nice to hear from you Eve!  My trigem nerve issues diminished a great deal also which is expected.  I had the Translab surgery on june 22 at House.
     My facial nerve right has recovered little since the surgery so my right eye requires periodic moistening.  Otherwise I'm  treating it all with time.
     Congrats on the absence of headaches!   Any progress is good and it sounds like it's happening!  Good for you!  Best wishes-Neal

[eugd]

I started driving highway with in a month, I was lucky with no vertigo, so turining my head did not effect my coordination or visual feilds.

[jerseygirl]

Thanks everybody who responded. It does not help to have a type A pesonality: I want things now. I thought that the first time tought me a lot of patience! I guess not. Neal is right, of course. Whatever progress I get is in the right direction and it is all good. On the positive note, I can type with my right hand just very slow. However, my progress with trigeminal is nil today.

Congratulations to Neal re: his progress with trigeminal and facial!

        Eve

[Obita]

Hello there jerseygirl!!

AN recovery and my personality did not mix at all either. 

Good luck Eve, Kathy

[jerseygirl]

Hello,

Update -6 weeks. No, I am not completely recovered as the surgeon predicted but I made good recovery. I can see the light at the end of the tunnel. My right side is much faster and coordinated, in fact my balance is coming back and no more blurry vision. I walk by myself, of course but slower than usual. My handwriting exists; it is slow and bad but at least it is there. My trigeminal numbness is less but it is better or worse  and when it is worse, my speech impediment comes back.

I did suffer a setback - a little pooling underneath my incison so it is round 2  of antibiotics. I did get a headache when I had  elevated temperature (98.5). Usually, my temp is 97. Headache was completely relieved by Alleve. I just wish the first time it was helped by that! On Monday, I will speak to Dr. Wisoff of NYU who put in the first LP shunt in 1988, may be I need a revision. I will also see PCP. My surgeon looked  at the pictures of my incision on Tuesday and said it was good. However, when nurse there heard of a fever, she immediately continued antibiotics and requested shunt evaluation.

No more PT with weights for me and no more acupuncture! I will keep everybody posted.

                                  Eve

[Michael R.]

Jerseygirl,

Congratulations on your recovery. You have come a long way in a short time. I am working on my sixth week as well and still have a great deal of neck pain. Massage helps but is short lived, so I'm trying acupuncture this week. Did you feel the acupuncture helped?

Michael
 

[jerseygirl]

Michael,

I feel that acupuncture helped but I have different issues: trigeminal pain. Other than that, I am getting something new every day either walking or balance but I am not fully functional yet. I do not know if I made quick recovery, just a consistent recovery. I guess I am not 25 anymore and it is my second time. In addition, my previous tumor was huge.

I got neck pains as well but I judged them to be balance issues, so PT, massage from my husband, moving head from side to side (I don't know if you can do that)  helps eventually. In other words, I was holding my head too stiff. Second time I have no issues from the positioning on the table because my surgery was short I guess. I know I will recover now but how much and when God only knows. How is your recovery going?

             Eve

[jerseygirl]

Update - 9 weeks

Just wanted to post an update at 9 weeks. Had my MRI at 8 weeks and "no residual/recurrent AN" as well as "ventricles are normal size and configuration" . Yay! The first one is obviously important but the second one determines if one gets a shunt -NO!

I don't know why I got a pooling at the incison site at 4.5 weeks but antibiotics helped with headaches and fevers and the pooling itself is getting smaller but not completely gone yet. I am really decondishioned with headaches, fevers and antibiotics though. Fatigue has set in just in time I have to take care of my two boys - they are back from summer vacation. I am now sweating at PT sessions, a laughable thing before.

My right side in general is getting more coordinated, I and my husband can see progress. He says at the rate I am going it will be another 2 months. Not soon enough for me! I started doing 10-minute Pilates work out. It is easy and makes me feel good.

I drive now for 2.5 weeks. No problems there. I did not trust myself though. I started at my own driveway, just parking my car in the garage. Then I took the car to the empty school yard. Only then I went to the supermarket and farm. The second surgery did not add anything there.

Handwriting is bad, slow and inefficient. The bank did not accept my signature, have to show up there in person. I started OT last week, let's see if they help me recover faster than last time. I am starting Speech Therapy next week because of trigeminal numbness which is all over the place. This is new since surgery number 2. I hope it is fixable.

What is peoples' experience with trigeminal numbness?

              Eve

[jerseygirl]

Hello everybody -3 and a half months update.

Sorry I didn't post anything before but I had incredibly stressful time, not at all AN related. Last time I went to work at 3 and a half months and I remember thinking that it must be too early because I just learned how to walk to the doctors office. I walked to my 3 months appointment and my legs gave out a few times. I had to stop and rest.

Well, it is the same the second time. 3 months seems to be the magical number. My balance when standing on one leg is exactly the same on both sides but I still walk slowly, primarily because of the right (AN) side. The entire side is slower than the good one, so I think this makes me off balance. when I am sleepless, tired or emotionally upset (there were enough opportunities for those), my balance and slowness are worse. The difference between the first and second times is that I did not take PT the first time, the doctors did not give it to me.

Handwriting is undoubtedly better but nevertheless is still bad and inefficient. I type with both hands but make more mistakes with the right one.

Speech - I went to an SLP and she diagnosed me with with Flaccid Dysarthria. I now have trouble only with multisyllabic words and 
paragraphs, not individual sounds or simple words. it is improving and thank God for that. If I stay away from multisyllabic words ( 5 or more), you would never know that I wasn't speaking correctly.

Facial and trigeminal issues - between 2 and a half and 3 months, my numbness significantly improved to the point when I feel the drop running down my face. In addition, my face, tongue and teeth stopped being so numb and almlost sore. The numbness did not go away completely, though. My right (AN) eye became bigger than good eye; I put drops sometimes but I can close it completely as usual. My smile is symmetric and I can raise my eyebrows, I can blow out the candle. People do not think my facial nerve has been affected at all. That is simply not true. I am glad nobody notices but I know that there is quite a bit of dryness, both in the eye and in the mouth.

Again, my MRI is clean so far.

               Eve

[jerseygirl]

Forgot to add that I still have no headaches or pain. The pooling at the incision has resoved but even with that I could sleep in any position, including the AN side! In all honesty, this is the most exciting news of all. My husband thinks this is because Dr. Shahinian went through the existing metal without replacing it. It is a small hole. I agree, that takes care of superficial and occipital headaches as well as sleeping positon. This probably does not explain deep and cluster-like headaches. So far, I did not have these wonders either!

 
                Eve