Who had an endoscopic retrosigmoid surgery???, pls!! I have many questions!!!

[Arasha]

Hi everybody,

This forum is great!!!. I would like to find  someone who had an endoscopic surgery, we can help eachother.  It has been 39 days from my operation and have many questions.  It is difficult to contact my doctor because I live in Ecuador and I had my surgery in USA; anyways, it is better to find the answers from people who are experiencing my similar situation.

Thanks for your help and my best wishes for your recovering,
Gloria

[jerseygirl]

Gloria,

I had an endoscopic retrosigmoid surgery but mine is a second one on the same tumor done in 1988. I will be happy to answer your questions. Even though we got different outcomes (mine no doubt related to the previous surgery), my understanding is that endocopic surgery in general means less or no tissue destruction (much less pain everywhere - in my case no pain), reduced surgery times (less chance of stroke, CSF leak, meningitis,etc.) and reduced hospital stay (less chance of MRSA and medical errors). It is also easier on your loved ones!

As far as the tumor removal goes, you can get absolutely the same outcome as with traditional surgery - the most common are severed hearing nerve and  facial as well as trigeminal  issues, less common are hemiparesis (weakness and partial paralysis on AN side), difficulty speaking and swallowing, all related to the brainstem compression by the tumor. Surgeon's experience matters - the more, the better. No surgery is unfortunately is a guarantee, that is why we all panic before the surgery.

It is great that  you are active on the computer and asking a lot of questions! I am sure this is a scary time for you and your loved ones! If there is anything I can do to help - let me know. You can also e-mail Roxy and Matt and send a picture; Dr. Shahinian will review it and will answer - I have done it. This way you bypass time zones,surgeries,etc and can go out because you don't wait for his phone call.

                    Eve

[Arasha]

Hi Eve,

Nice to hear from you, thanks for your reply.  At least with the endoscopic surgery I had only a very small cut and didn't need to shave too much Well, before the surgery I was worried only about that, but now I know that I should have more things to be worried about.  At the present I have facial paralysis with all the things that it implicates (eye, mouth, etc etc.) I was not expecting this, there are sometimes that I feel miserable, Dr. Shahinian told me that my face will come back, but it is easy to say don´t be worried while I am looking my ugly face at the mirror and I don't want to see anybody until I get well.  Do you know when can I expect my face like before?? I noticed that I can hear a very little bit - almost nothing- with my AN ear and I am wondering if it will get better or worse with the time.  To email Matt it doesn`t work because he just does not answer or if he does it is 15 days after I email to him, I think they are very busy.  I can call him but I don`t want to have a big bill every month.

The noise of my AN ear makes me grumpy, it doesn't leave me alone, did you experience this?. and...the dizziness.....uffff big deal, I can not go anywhere, is it maybe the reaction  because I am walking and my body is healing?

Thanks in advance for your support,
Gloria

[jerseygirl]

Gloria,

I understand your worries and desire to be alone while your facial nerve heals. Usually all surgeons say that the immediate time after surgery predicts the outcome of the facial nerve at 1 year time. That is, if your facial nerve is perfect right after surgery but slides south on days 10-12 right after steroids are discontinued, it will be perfect at a year's time. How was your facial nerve right after surgery and how many days of steroids did you get?

Also, surgeons can tell that if they have done the same thing to the facial nerve but patients recover differently. One recovers completely and the other one recovers only partially. Nobody knows why in the minority of patients the facial nerve works when stimulated but the face droops while in another patient the facial nerve is severely damaged but the face itself works. Just remember, statistics are on your side if your facial nerve could be stimulated right after surgery and your face looked good! For me, nothing happens in less than 3 months. This is the time I become barely functional. I had facial issues after the first surgery right after the steroids were discontinued and got a huge improvement in 3 months, less improvement at 6, 9 months and a year's time. My face became perfect looking at 2 years, when no surgeon was looking. However, these are just my numbers. Some people recover in a few weeks and some people take many months. A minority will take years to recover.

If you can hear out of AN ear, that is very good! Anything at all is better than nothing! You can probably amplify it and get a regular hearing aid. I have lived with single sided deafness for over 19 years and have to get a special hearing aid (Transear or BAHA) which were available for just a few short years. Nothing was available in 1988 when I had my first surgery. You can find out what hearing is left after surgery by visiting an audiologist and having a hearing test.

I hope I answered some of your questions!

         Eve

[ixta]

Bienvenidos a la Equadoriana~!
No creo que la Roxy trabaja alli donde SBI, Matt creo que si.
Yo mande las fotos de mi cicatriz cada semana y me receto medicina desde lejos Shahinian porque vivo en Seattle.
Alli donde la forum Microsurgical options se puede ver mi post. Y si Gloria, he tenido problemas con ellos en cuanto a email, telefonos etc. Estan super ocupadisimo y el doctor solo tiene 1 asistente! Matt! Hay que usar Diez por lo menos con el Dr! Mas se puede hablar/escribir español con el porque es puerto riceño.
Matt es lo mejor de hablar y email. Es super pendiente. (cuando hay tiempo) Hay que dejar to cuerpo sanar del trauma del cirugia, espera unas meses y descansa porque de tener nervio causa el cuerpo de sanarse mas lento.  Mi cara fue paralizado un rato, un año despues la cirugia, tengo un partecito que no siento, pero por lo menos puedo sonreir, y lagrimar.
Me costo unas 3 meses de lagrimar-y fue durante una luchalibre con la esposa, di cuenta que estaba gritando y llorando y empeze de ser alegre- por los lagrimas!

[Arasha]

Hola Ixta,

Gracias por tomar un tiempo para escribirme.  Roxy todavia trabaja ahi, pero con ella no he tenido contacto, ella se encarga más de los asuntos administrativos, Matt es muy buena persona y sí contesta pero se tarda tanto que cuando el me escribe yo ya me olvidé qué le habia preguntado, pienso también que es porque debe preguntar a Dr. Shahinian.  El tambien me ha pedido enviar una foto cada mes para ver mi progreso.

Leer lo tu mensaje y el de Eve me han ayudado a tener esperanzas de que mi parálisis no es eterna, porque estuve pensando que sería permanente.  Por favor dime qué clase de terapia hiciste en la cara porque Dr. Shahinian solo me enseño un tipo de masaje y me dijo que la cara volverá a tener su funcion normal luego de un tiempo.  Otra cosa, tienes un implante para la audición?

Gracias nuevamente  y un gran abrazo,
Gloria

[Arasha]

Hi Eve,

Thanks again for your reply, I beg for getting my face back (I hope it will take only few weeks) I continue walking...walking....  Now I have a better idea about when can I expect my recovering, ufff too much time for a person who is unnpatient .. ME 

I felt very healthy before my surgery, just to give you an idea I run a half marathon (21 Km) before my operation, I felt just a little tinnitus and nothing else!!!

I think you are a very strong person, I can not imagine having 2 surgeries, just with this one I felt that I almost die.  Yes, Matt told me that it is soon to think about an implant, but I would really like to hear well again.  Reading stories like yours make me feel strong and are teaching me to have more patience.  HARD TEST FOR MY LIFE !!!!

Eve, can you tell me if you still have tinnitus in your ear?, also please tell me if you had some kind of therapy in your face?, Dr. Shahinian just teached me a kind of massage. What about the dizzines, do you still have it?, thanks in advance for taking your time to reply to me.

Saludos,
Gloria
     

[jerseygirl]

Hi Gloria,

All patients are impatient! Believe me, I am no better!

How bad is your paralysis? I think you should visit the section Facial Issues because everything they say there applies. To answer your question, I had paralysis after the first surgery where my lower lip sagged but it went away in a few months. I had major improvements at 3,6,9 months, then a year and 2 years. I might be wrong but facial exercises now for you are not recommended but you can do massage any time. Massage is always good for you. I have no paralysis that anybody can tell after my second surgery but I do have a "pulling and tightness" sensation in the affected cheek. Sometimes it is better and sometimes it is worse but progressively it is better. Make sure your cornea is moistened until your paralysis goes away!

Walking is great for you. It will keep you in decent shape and you'll avoid losing the muscle mass.It also trains your dynamic balance without being strenuous. I went through vestibular retraining the second time and my PT made me stand on one leg. She said that healthy people who have 2 intact vestibular nerves, dominant side is always better. My dominant side is the AN side and it was better before surgery #2! Recovery does happen! I think "normal" for you is 30 sec. Try standing on one leg every day (each one) and aim for uninterrupted 30 sec on each leg to train your static balance.

Another thing to train your balance is Tai Chi and (more strenuous) Yoga. Running also requires good balance among other things. You will absolutely run again, just give it a few months. I was also a runner before surgery #2 and now jog on the treadmill again getting closer and closer to my normal speed even though I got hemiparesis after each surgery. Everybody says that if I recovered after my monstrous first surgery, I will do it again after the second one which thankfully was a breeze in comparison. Gloria, if I can do it, you can, too! Being healthy helps tremendously.

Tinnutis drove me nuts after the first surgery for a long time. I was 25, had perfect hearing and no tinnutis. I did not know the meaning of the word but awoke to roaring tinnutis. It does get better with time, undoubtedly. It takes about at least a few months for the body to adjust to the loss of the vestibular nerve. Then tinnutis and dizziness greatly diminish. Balance training as well as any exercise also help with dizziness. Just to demonstrate to you, I had no dizziness and tinnitis before second surgery. To this day, I have no dizziness. My body completely adjusted to the loss of one vestibular nerve.

Regarding tinnitis, what makes it for me go away completely is the supplement called Ginkgo Biloba. It is a blood thinner (almost like aspirin) so be careful. I do not know if it is available in your country and it does not work for everybody. Hope this info helps!

Good luck to you Gloria and we both should be patient! It is funny how first surgery did not really teach me patience after all!

                  Eve