Dear Family and Friends
Thank you all for your love and support. Below is the diary and latestet updates about Lisa, you can e-mail lisa at firstname.lastname@example.org if you want to send her a message
Please check site after 7pm daily for updates
THE DIARY OF LISA'S ACOUSTIC NEUROMA
On the 28th of August 2009 our world changed. Lisa was diagnosed with an Acoustic Neuroma (This is a begnin brain tumor, found in the skull base region of the brain).
Lisa's tumor is 3cm in size and is causing pressure against the brain stem. There is no local expertise in SA to perform surgery.
After a long investigation process, we found the International Neuroscience Institute in Hannover Germany.
Friday 2nd Oct 2009
Jeremy and Lisa left JHB to fly to Hannover Germany, said our good bye's to family
Saturday 3rd Oct 2009
Arrived in Frankfurt @ 5.20am
Lisa was body searched in every cavity at the Airport, because the alarm went off when she walked through the metal detector and told to "STAND LIKE A HORSE" so that the German mama could check under her feet.
Took a connecting flight to Hannover and Checked into hotel
Sunday 4th Oct 2009
Spent the day relaxing and exploring the city
Monday 5th Oct 2009
Woke-up early this morning 6am had breakfast together and packed Lisa’s bags.Arrived at the INI (International Neurosciences Institute) at about 8.15pmThe weather was nice and fresh like a typical South African Highveld winters morning.On arrival we filled out some preliminary forms and where sent up to the sixth floor to admissions.The INI building is amazing we took a glass lift to the sixth floor. It felt like we were on the Star Ship Enterprise, all the doors open automatically and everything is Hi-tech deluxe!!! The only thing that is missing are a few Klingons and Captain Kirk.Once all the paperwork was completed, we met with the first Dr. this was an Anaethetist, who asked Lisa many questions and explained about all the drugs, pipes, tubes and wires that will be used during and after the operation. Lisa then checked into the Ward, her room is more like the Hilton Hotel than a Hospital (See Pictures). The only thing that gives it away is the bed. Even the food is fantastic, not your typical Hospital food.The nurse then came to take blood do an ECG, temperature, blood pressure and all the other usual hospital tests. Nurses are super efficient. (German Robots)Mandi, Lisa’s sister arrived at the hotel she flew in today from SA she has been amazing and a great support. Lisa is lucky to have her as a sister. I (Jeremy) went to fetch her and bring her to the INI at around 10.30amA Neurosurgeon Dr Pirayesh came to see Lisa and spent about 1-hour answering all questions and explaining the operation in detail, he also did a full examination on Lisa.It was then off for x-rays and a CT scan. More tests followed…..this time it was hearing.Later in the afternoon another Neurosurgeon came to introduce himself, he again explained the procedure and any other questions that we had. He confirmed that the operation would be done tomorrow morning early. It takes about 4-6 hours for the surgery.At 6.30pm this evening Professor Madjid Samii, the Guru who will perform the operation came to visit Lisa’s. His reputation precedes him and although he is not a big man (physically) he definitely fills the room and has a presence and very large personality, with over 4000 of these operations performed, he assured us we have nothing to worry about.Lisa is relaxed and we are all ready for the big day tomorrow. It’s now in the hands of the surgeon and in G-ds (Hashed) hands.
Tueday 6th October 2009
THE BIG DAY
Mandi and I left the hotel at 6.40am this morning; it was dark cold and raining. We arrived at the INI and went up to Lisa’s room. Lisa was getting dressed into her hospital gown and putting on tight elastic stockings, one for each leg. This is used to prevent thrombosis, during surgery. Lisa took her pre-op medication and within 15min it started to take effect. At 7.15am the nurse came to fetch her. Mandi and I gave her a big hug and kiss. Mandi and Lisa recited the Shema, (Jewish Prayer) after which I read a Mi Shebeirach for Lisa and went with her to the lift which takes the patients from the 2nd Floor (The wards) to the OR.It was very hard, to let her go. She was now in the hands of Hashem (G-d) he will guide and give Professor Samii the skill to operate and complete the surgery successfully.I went back to Lisa’s room. Mandi and I now wait…………………………….A BIG BIG thank you for all the messages and support that we have received from around the world, it TRULY makes this Journey a lot easier.
LATEST UP-DATE 3.30pm
Its 3.30pm, we just got word that the surgery is finished and over. Lisa in now being moved to the ICU. There are a few post-op tests still to be done. Lisa is sleeping. They are going to wake her up and do what they have to do. Post-op process Its 3.30pm, we just got word that the surgery is finished and over. Lisa in now being moved to the ICU. There are a few post-op tests still to be done. Lisa is sleeping. They are going to wake her up and do what they have to do. Post-op process takes approx 2-hours. Once this is done we will then be able to see her for the first time.
Post-op Tuesday 6th Oct 2009
I have just popped out of ICU to give a quick update. Lisa is out of the surgery and will stay in ICU for the next few days. She is complaining of terrible headaches and dry mouth, this is normal. They are giving her pain medication. She is very drowsy. We have not seen Prof Samii yet as he is in another surgery, he will be visiting later tonight. Once we have spoken to him we will have a good idea if he was able to preserve her facial nerve function and other functions and if they managed to remove the entire tumor. From what Mandi and I can see, there does not seem to be a visible facial pausey at this stage, but it is early days. Her hearing we do not know about at this stage.
The good news is that the doctors in ICU did tell us that all went well with the surgery and there were no complications or problems.Thank you everyone for your wonderful emails and sms’s. I have saved them all for Lisa to look at. She will read them in the next few days once she is out of ICU and reply to everyone personally. All the wishes and prayers that we have received have made this journey a lot easier. Thank you!!
I am now going back to ICU to wait for the Professor and to be with Lisa. More info to follow tomorrow
Wednesday 6th October-A NEW DAY
The weather today is beautiful by Hannover standards 18C partly cloudy with a bit of blue sky and a slight hint of the sun. That is enough about the weather what about Lisa. Well if the weather is good today, so is the news about Lisa.Last night Mandi and I returned to the ICU, Lisa was out of surgery and complaining of terrible headaches, that is all she can remember. We waited outside the ICU to talk to Professor Samii, he was in another surgery. We are amazed as to how this 73 year old man keeps going. An absolute magician and guru. At 8.45pm there was a flurry of activity Professor Sami walked in from his 3rd Surgery that day. He was speaking to a family of a patient that he had just operated on and saved the man’s life (This man had apparently 5 weeks to live). Then it was our turn Professor Sami came to sit down next to us on the small green sofa and said the following.“I had a very fascinating and interesting surgery today with Lisa, we came across something which very rarely occurs, her tumor was not an Acoustic Neuroma, but a Facial Neuroma, and this is why it took extra 2-hours for surgery as this is a more complicated tumor to remove” (Surgery was about 7-hours)Professor Sami went on to explain to us that this tumor grows on the facial nerve in the brain. The facial nerve runs up the spine though the “brain” and into the ear in the same opening parallel to the acoustic nerve (VII & VIII). It is one of the most complex nerves in the body and comprises of about 15 fibrous strands. It controls very vital facial functions such as the eye lid, lip movement etc. When Lisa had the MRI it was possibly difficult to differentiate between the nerves because the two nerves are so close to each other. Facial Neuroma are very rare. What causes them..?They don’t know? I am so glad that we made the decision to come to Germany as THIS type of operation and “complication” requires the best of the best. This I believe we achieved.In order to preserve the nerve during surgery and prevent Facial Palsy, the Prof had to work very very carefully and slowly to remove the tumor as the nerve runs though the centre of the tumor and not on the outside like an Acoustic Neuroma.Most surgeons would have removed the nerve completely and done a nerve graph. This then leaves the patient after surgery, deaf in the one ear due to the surgical approach used and with a facial palsy. In Lisa’s case the Professors concern was to save the nerve which he did achieve. His surgical approach is different to most surgeons, which he has pioneered. The patient is operated on in a semi sitting like position. Before coming to Germany and making our decision I looked at the different surgical approaches. Each one had risks and complications, but I went with my gut feeling. What a relief!! Lisa’s face looks good considering how extremely delicate the facial nerve is and the work they did on it in the brain for so long. Remember all of this is done looking though a microscope, with very small surgical tools.A very small “skin” of the tumor was left around the nerve. This will have to be monitored but is not a cause for any concern as it might or might not grow back and is extremely slow growing. Lisa’s tumor must have been there for at least 20 years before it presented symptoms.From my research, this operation and condition had no guarantees, no reliable statistics and certainly you would not come out of surgery without paying some price. Considering all of this and the fact that there is no more pressure on Lisa’s brain stem, the tumor has been removed, Lisa’s facial nerve has been saved and POSSIBLY she still has some hearing in her right ear which I am confident about. THIS IS A VERY GOOD OUTCOME BARUCH HASHEM!!!!!!!!!!!!!!!!! Back to the weather, if the weather was an indication or a sign this morning…….it was a good one!I am writing you this update while I site at Lisa’s bedside, watching her sleep, she is still feeling nauseous with a headache, but this is normal and will pass in the next few days. She is looking good and very peaceful. At 12pm today she will be moved from ICU to her hotel like room (I am a bit jealous as her bathroom is bigger and better than the hotel I am staying in).Now the recovery starts. The physiotherapist will be visiting her today to get her up and going.More to follow later today……………………………….
Thursday 8th October 2009 Day two after Brain Surgery
First the weather report. Hannover had a big storm last night with lots of lighting; it’s raining, cold and overcast, it seems most of Europe had weather issues looking at the news. I am sorry I did not update the website last night. When I got back to the hotel room and sat on the bed that was it I was out. I think I have been running on adrenaline for the last few days and today it has hit me. Mandi is also feeling a bit tender today, so she has taken a taxi into town to go and relax do a bit of shopping (retail therapy) and take some time out. I am here with Lisa. Mandi and I have both developed cabin fever.Yesterday was a wonderful day because Lisa was out of surgery, out of ICU and in her room and awake with all her senses intact. She was still in a lot of pain yesterday, headaches and dizziness, but this will eventually pass.It is still a very weird feeling seeing her awake and talking, considering that she just had brain surgery. I think today the reality of it all has just hit us.We left the INI last night at about 8pm just after Prof Samii and his party arrived. He’s like the pipe piper there is always a group of people following him. I refer to him as “The king of Op” as he is like the rock star of the medical world with a gang of groupies following him wherever he goes. You can even buy a signed postcard with his picture on downstairs in reception. On the serious side the Prof seemed very happy (and confident) with Lisa and “ALLES IS DUS GOODE” (Excuse the bad German).Today brings a new day with new challenges. Lisa did not have a good night and could not sleep even with medication; I think it is very uncomfortable for her. She has a big bandage around her head covering her ears. She looks like the dude from Aladdin. She was complaining that she is very hot. This would be the case as her head is bandaged and 80% of body heat is lost though the head. She also has those designer hospital stockings on her legs, they are also very thick and hot.This morning Mandi arrived at the INI after her morning walk in the rain from the hotel first. She is a lot more energetic that me, I prefer to go by car (We hired a car). I got to the hospital around 9.10am. Lisa is now fast asleep, we have left her to sleep as she needs a good rest, as she has not really slept for two days now. She looks very peaceful while she is sleeping and I promised her I would not take any pictures of her while she is sleeping. I tend to do this from time to time and use the pictures for blackmail purposes. This time I will give her a break.I am still amazed at how perfect her face looks, while I watch her sleep. It’s truly a miracle.It is getting close to noon, today will be a big day, because once Lisa wakes up we are going to get her out of bed and get her moving. The physio came to see her yesterday a lovely lady named Esther. She got Lisa sitting yesterday and moving her legs. Today I think she is going to be a little bit stricter, more German like, which is a good thing as Lisa needs to start moving, she will be coming at 12.30pm. Will update everyone later this evening. the nurses have just arrived, it looks like they mean business today
Day 2 Thursday 8th October 2009 Afternoon to evening
Esther (Physiotherapist) arrived as I was finishing the update from the morning. This time she came armed with a nurse and it looked like they meant business. Firstly she got Lisa to sit up on the bed and took out an ice lolly made from water in one of those Tupperware moulds. She rubbed it on Lisa’s back a few times; I think this is done to wake-up the nerves.Esther then brought out her pirate patch as she called it; this is placed on the right eye the side of the brain which was operated on. It helps prevent dizziness, by covering the eye.The nurse Anjke and Esther assisted Lisa to stand and they slowly walked her (or in German-Marched her) to the bathroom.They assisted her to wash and use the loo, when they were finished. Lisa was assisted back to her bed. She felt a bit dizzy but this was a good start. “I will be back later “Esther said in a quiet but firm voice “This time we vill make her walk out the room”Lisa’s lunch arrived, just what she likes, tomatoe soup and pasta with tomato sauce. Her appetite is definitely improving and she ate quite a bit. After lunch Lisa fell asleep.Mandi arrived back from her town trip; she had brought lunch for the two of us. We ate and Lisa slept.Awhile later Esther arrived back; I was sitting at the end of the passage. Esther said I must stay there and Lisa will walk to me. A few minutes later Esther, another male nurse and Mandi come down the passage (about 20m long) with Lisa and her pirate patch. They assisted her to walk while they carried the machine which supplied the medicine to the drip. The corridors inside the ward are like a mini autobahn, every now and then if you sit for a while you see patients walking up and down at different stages of recovery, some are fast some are slow and they are all carry electronic drip machines.After her walk Lisa went back to her room and slept. This was another milestone on her road to recovery; it’s quite amazing seeing her walking 2 days after brain surgery, that’s how good they are in this place. Around 3pm in the afternoon one of the neurosurgeons, in-charge of the ward came into to see Lisa. It was time to remove the head gear; this made Lisa very happy as the bandage is thick tight, hot and very uncomfortable. Once removed, he then removed the large “plaster” dressing covering the cut in Lisa’s head. The cut is +- 100mm long and about 50mm from the centre of the back of the head. All the hair in this area was shaved away. Once Lisa’s hair grows back the scar will not be noticeable. The cut was very clean and neatly stitched, the Dr was happy he checked for swelling bleeding etc and then put on a new dressing.We discussed Lisa’s progress and how much longer she would need to stay in the INI. The Dr gave us the following information.Lisa would stay in the INI for a period of 2 weeks post op and would then need to stay in Germany a further 2 weeks before it’s safe to fly home.This means that Lisa will only be coming home on the 3rd Nov.Mandi decided it was time to put Lisa in her own PJ’s, she had officially declared the “designer hospital gown” the one where the whole world can see your rear end, out of fashion.Lisa was complaining that she was very hot in this gown; we dressed her in her PJ’s and helped her get back onto the bed. I got a brush and gently combed her hair. Lisa for the first time since the surgery was starting to look like her old self again. She definitely felt a lot better.Before we left for the evening we had another visit from the “King of Op” (Prof Samii) he came by on his ward rounds to see how Lisa was, he was happy.It was the end of a busy day for all of us, Lisa was tired, she took her pain medication and went to sleep. Mandi and I headed out, drove around a bit and found an Italian restaurant we had dinner, got back to the hotel. I was exhausted, Mandi was tired, and that was the end of this day.
Friday 9th October Day 3 post-op
I woke up late 8am; Mandi was in the restaurant having breakfast. It was a fresh and crisp day, clear blue sky and the sun was shining.I arrived at the INI, Mandi was already there. Lisa had a good night, not so much pain and was more comfortable. She had eaten breakfast and was sound asleep. Sleep is very good for the brain to recover, all the medication that she was taking made her very sleepy. There was still no internet connection the storm from two nights ago had taken out the equipment and it was not fixed. Mandi and I decided that we would go to town we needed to go to the Home affairs office to get our Visa’s changed (made longer-It’s a long story). After driving into town and parking in the old city area, we found the offices and did what we needed to do. We would need to go back again on Monday to return the completed paperwork.Hannover is not a tourist destination, or somewhere that you would plan to visit, but it has some very interesting old buildings and places to see. It’s like any other European city, mixed with old and new, very busy and quite large. Hannover has a lot of hospitals and medical centers; I suppose it’s famous for that!We arrived back at the INI Lisa was awake and had eaten Lunch. She was looking good no headaches and awake. It’s amazing how each hour passes and she just seems to make leaps and bounds of progress. Esther arrived it was time to go walking. This time Lisa walked around the entire ward. This is about 150m the ward floors go around the inside of the building. Another milestone achieved. It’s quite amazing. Lisa is still off balance and need to wear the eye patch, but her progress is remarkable.After the walk (One small step for Lisa ,one giant leap in Recovery). I went back to the hotel for a short while. Mandi stayed and read a book, Lisa slept.By this evening Lisa was feeling a lot better, still a bit dizzy, but the headaches are not so bad, her face looks good, the bandages are off her head…what more could you wish for? Mandi headed back to the hotel I stayed with Lisa for a while and got her ready for bed. I helped her to the bathroom, we brushed teeth, I read her a bedtime story…….no…..I only joking and got her back into bed.Just before I lelt Prof Samii and his party of five came to visit. He walked in the room and said in a loud voice “How is my beautiful lady” (He was not wrong).Happy with her progress. He told us that he is off to China for a few days and will be back next week. Now remember its +- 7.30pm the man is 73 years old has been working the whole day and is now off to china. Whatever he is on I want some. It’s quite remarkable.As he left the room he said to me “look after her while I am away” and then he was gone.It was the end of a long day the end of a long week; I went back to the hotel, finished off the web update.
Tomorrow is another day.
Saturday 10th October 2009
Dear Family and Freinds once again thank you for your messages love and support, it has really been amazing and has made all the difference, I have read each one of your messages to Lisa. She has really enjoyed each one. Its been like opening a gift on her Birthday. Each message has been special and wonderful.
I must appologize for the rather short update today, but today I am (and Mandi) are really tired and just needed a bit of time out to relax and not think about anything to much.
I can tell you that Lisa is doing great, the Dr's are happy, all the pipes are out of her body. It is really, truly amazing and un beleiveable, we are so blessed. NO one gets off this blessed with a tumor of this nature.
I would really like to honour Professor Madjid Samii, for his amazing acheivement. I have posted a small article to give you some insight into the man on the photo album. PLEASE click on the album, click on the artical and use the magnifying glass icon on the top right of your screen to make it bigger, it takes a few seconds to enlarge and become clear. Please read this preface taken from a medical journal.
He has published over 400 papers and written more that 25 books. His CV reads like a telephone book. Enjoy the read.
More to follow tomorrow
HI ALL JUST GOT BACK TO JHB. LISA IS DOING REALLY WELL I WILL DO A BIG UPDATE TOMORROW. IT WAS A LONG,PACKED FLIGHT. SHE IS GETTING BETTER EVERYDAY, IF YOU WANT TO SEND HER MESSAGES YOU CAN E-MAIL HER OR SEND AN SMS 0825733117. MORE INFORMATION TO FOLLOW.