Post by abd26 on Sept 21, 2013 7:28:34 GMT -6
In April of 2013 my husband was experiencing numbness down his left leg as well as struggling to urinate or have normal bowl movements. He also has a reoccurring pain in his rib cage that he was having treated at the chiropractor for months. My husband assumed that the other symptoms were due to a disc he has reduced 18 months earlier…he assumed that it was re-herniated. Our chiropractor finally decided that this “rib issue” should be fixed with all the treatment my husband had and did a routine physical exam on him. As he ran a tool up his left foot my husband’s toes curled in the wrong direction. The chiropractor suggested that this indicated a spinal cord issue and suggested my husband ask his orthopedic surgeon to order an MRI of his upper back. He wrote up his findings and gave a copy to my husband to give to his Orthopedic Surgeon.
The surgeon read the report…did the same exam and ordered the MRI. 3 days later we got a call from the doctor’s office telling him they found a mass on his spinal cord and he needed another MRI of the area with contrast. This was a Monday and the new MRI was scheduled for Wednesday. Needless to say we spent 2 ½ days being numb, scared and I looked up every horrible scenario on the internet (HUGE MISTAKE). I found out that most spinal tumors were secondary tumors from another cancer….I was a wreck and trying to hide it from my kids and be strong for my husband. At this point my husband and I hadn’t told anyone about the tumor. We didn’t want to share our news yet…that would make it too real.
On the day of the MRI we arrived at our Orthopedic Surgeon’s busy office only to be met with a staff that was waiting for us. Really? They are always busy and we were always waiting. This time was different and I could tell by the look on their faces that they were aware of the situation and as concerned as we were. My heart sank. As my husband went in for the MRI I went outside and cried…and called my big sister. I cried and told her what was going on. I told her she could call the rest of the family but I didn’t want any phone calls. I didn’t want advice and ideas and thoughts about what we should do. For some reason I was sure that we needed to carve our own path through this medical nightmare. Truly our only consulation was that this wasn’t happening to our kids. They were fine.
Once done with the MRI they told us that we were not to come back on Friday to get the results (as once thought) we were to go get some lunch and come back in an hour. (That REALLY freaked us out!) So after an hour of stirring soup and sipping water we went back to talk to the surgeon. He admitted this wasn’t his area of expertise but he thought it may be a benign schwannoma and he was kind enough to contact the head Neurosurgeon at his hospital to talk to us that day. We accepted, went over to his office and waited 5 hours. We weren’t angry we were grateful that we’d get an opinion right away. He confirmed our Orthopedic Surgeons thoughts but said where this tumor was located controlled my husband’s respitory system so it needed to come out soon. He told us this wasn’t a typical surgery. We were not going to find someone who did this type of surgery every day and we should do our homework and get a second opinion. The next day I set out on a mission to try and find the doctor who was going to save my husband.
We live close to Chicago so there were many options. I did my homework, called doctors I knew to get recommendations, made appointments and did more research. We were offered private airplane rides by family and good friends, immediate appointments to Mayo Clinic in Minnesota by friends with connections and much more. I had this theory that when the right doctor came along there would be a sign. I am by no means a “Bible Thumper” but I am a believer. I have faith. This was one of those times I needed God to carry me…and I truly tried to remember that. Throughout those days my niece, who is an audiologist with a hospital in northern Illinois, gave me the name of a Neurosurgeon who specializes in spinal tumors. She got his name from the ENT surgeon she works with. He even told her that if his mother got the same diagnosis that’s who he’d send her to. I researched that doctor and he was in fact on the “Top 10 Best Neurosurgeons” list I had found online. That was a good recommendation but I needed a sign. I needed 2 different people to recommend the same person and then I’d know that was our doctor.
Rewind a day or two and one afternoon I found this site. I’ll be honest, I only read pages 5-10 and it scared the hell out of me. All I saw was everyone’s pain, a life of Oxycontin addiction and bad news. My husband came home from work that day and asked what I was reading. I told him “No way” was he reading any of this. He needed to stay in his positive male “I’m in denial” world.
Then one magical Saturday morning the sign I was waiting for appeared. I woke up early (truth be told I was hosting my son’s middle school play cast party that night….50 preteens eating pizza in my house…yeah…I was SO up for that?!) I decided to revisit this site but start with page 1. There needed to be a sign in here somewhere. One person who had a positive story. Someone who could give me a sign. I found it that morning. I read Annette’s story and saw that she mentioned northern Illinois. She had written her post 3 years prior but she left her email address and I was desperate. I wrote to her, told her our story and asked 2 questions: Who was your doctor and what hospital?
Three hours later I saw a response from her in my inbox. As I opened the email I screamed out loud. The doctor and hospital was the same one my niece had recommended! There was the sign I needed! I called my niece immediately. She called her friend the ENT who called the surgeon and in an hour the man was calling my cell phone telling me he wanted to see my husband on the following Tuesday.
I was convinced this was our doctor right when I realized he hadn’t blocked his phone number (later I would find out that was the kind of doctor he was…amazing!)
I told my husband that we had to keep our other appointments because this was his spine, not mine. He needed to make the decision about who was going to perform the operation.
We met with the doctor on Tuesday. He reviewed the MRI report and had 2 other radiologists do the same. He said he didn’t think the tumor (which was located on C-7, T-1 and about 4cm long) was attached directly to the spinal cord but on the outer coating. He said my husband was healthy and he was convinced he could get the whole thing out with little if any residual nerve damage. He told us the risks but also said this tumor was life threatening. My husband would die if he didn’t get it removed. He asked if we had anything big on the calendar and my husband said he was to chaperone a weekend field trip for my son. The doctor thought it was fine he went, prescribed some steroids to help with some of the numbness and said if we had any other questions we should call his cell phone. He spent 45 minutes with us…never rushing…answering all our questions and going over every bit of the preoperative, postoperative and the procedure itself. When he left my husband and I agreed this was our doctor. This was the man we trusted and we were going to cancel every other appointment and schedule his surgery for the second week in May.
The surgery took about 5 hours (he said that would be the minimum…it could be way longer…he was going to take his time) and within 2 hours I had a phone call from the OR telling me all the medical staff in the room were amazed because he was able to get out the ENTIRE tumor. The surgery went even better than expected. My husband started his recovery slowly in the hospital but once he was able to stand he took off. He never experienced any spinal headaches or infection. He was discharged after 6 days. He never used the walker or the shower chair we had gotten for him. Within days of coming home he was able to urinate and have regular bowl movements and was back to work in 2 weeks. He didn’t take anything more than Extra Strength Tylenol during the day and at night just a muscle relaxor so he wouldn’t wake up sore. I am making this sound like no big deal but if you’ve read any of the other posts you know this isn’t’ the usual recovery after this surgery. I am by no means saying our doctor is magical or will have this outcome every time. I am sharing this to give just one-person hope or a referral because our doctor saved my husband’s life but did so in a caring and kind way.
Our doctor is Dr. Egon Doppenberg. He works at NorthShore University Hospital in Evanston, Illinois. Every single person who was involved with my husband’s surgery and postoperative care was kind, caring and efficient. They not only took care of him but they made sure a very scared wife was hugged and reassured as well. Although I consider myself a “decent” writer…I have no words to describe this experience affectively. Although the diagnosis was scary and life threatening, from the minute Dr. Doppenberg called my cell phone everything that happened was a blessing. This experience was amazing. By June my husband was back at work and riding his bike. On the 4th of July he was swimming relay races with our son. I know not all schwannoma surgeries turn out this way but some do. There is hope. Other than an annual MRI my husband is done with this tumor experience. If you are reading this you either have been diagnosed with a schwannoma tumor or someone you love has. I wish you the same experience we had. Find a doctor you feel good about and trust and stay positive. I hope you have the same experience we did…amazing! I am happy to share my email address if you have any questions.
abelld@comcast.net
Good luck to you. Amy
The surgeon read the report…did the same exam and ordered the MRI. 3 days later we got a call from the doctor’s office telling him they found a mass on his spinal cord and he needed another MRI of the area with contrast. This was a Monday and the new MRI was scheduled for Wednesday. Needless to say we spent 2 ½ days being numb, scared and I looked up every horrible scenario on the internet (HUGE MISTAKE). I found out that most spinal tumors were secondary tumors from another cancer….I was a wreck and trying to hide it from my kids and be strong for my husband. At this point my husband and I hadn’t told anyone about the tumor. We didn’t want to share our news yet…that would make it too real.
On the day of the MRI we arrived at our Orthopedic Surgeon’s busy office only to be met with a staff that was waiting for us. Really? They are always busy and we were always waiting. This time was different and I could tell by the look on their faces that they were aware of the situation and as concerned as we were. My heart sank. As my husband went in for the MRI I went outside and cried…and called my big sister. I cried and told her what was going on. I told her she could call the rest of the family but I didn’t want any phone calls. I didn’t want advice and ideas and thoughts about what we should do. For some reason I was sure that we needed to carve our own path through this medical nightmare. Truly our only consulation was that this wasn’t happening to our kids. They were fine.
Once done with the MRI they told us that we were not to come back on Friday to get the results (as once thought) we were to go get some lunch and come back in an hour. (That REALLY freaked us out!) So after an hour of stirring soup and sipping water we went back to talk to the surgeon. He admitted this wasn’t his area of expertise but he thought it may be a benign schwannoma and he was kind enough to contact the head Neurosurgeon at his hospital to talk to us that day. We accepted, went over to his office and waited 5 hours. We weren’t angry we were grateful that we’d get an opinion right away. He confirmed our Orthopedic Surgeons thoughts but said where this tumor was located controlled my husband’s respitory system so it needed to come out soon. He told us this wasn’t a typical surgery. We were not going to find someone who did this type of surgery every day and we should do our homework and get a second opinion. The next day I set out on a mission to try and find the doctor who was going to save my husband.
We live close to Chicago so there were many options. I did my homework, called doctors I knew to get recommendations, made appointments and did more research. We were offered private airplane rides by family and good friends, immediate appointments to Mayo Clinic in Minnesota by friends with connections and much more. I had this theory that when the right doctor came along there would be a sign. I am by no means a “Bible Thumper” but I am a believer. I have faith. This was one of those times I needed God to carry me…and I truly tried to remember that. Throughout those days my niece, who is an audiologist with a hospital in northern Illinois, gave me the name of a Neurosurgeon who specializes in spinal tumors. She got his name from the ENT surgeon she works with. He even told her that if his mother got the same diagnosis that’s who he’d send her to. I researched that doctor and he was in fact on the “Top 10 Best Neurosurgeons” list I had found online. That was a good recommendation but I needed a sign. I needed 2 different people to recommend the same person and then I’d know that was our doctor.
Rewind a day or two and one afternoon I found this site. I’ll be honest, I only read pages 5-10 and it scared the hell out of me. All I saw was everyone’s pain, a life of Oxycontin addiction and bad news. My husband came home from work that day and asked what I was reading. I told him “No way” was he reading any of this. He needed to stay in his positive male “I’m in denial” world.
Then one magical Saturday morning the sign I was waiting for appeared. I woke up early (truth be told I was hosting my son’s middle school play cast party that night….50 preteens eating pizza in my house…yeah…I was SO up for that?!) I decided to revisit this site but start with page 1. There needed to be a sign in here somewhere. One person who had a positive story. Someone who could give me a sign. I found it that morning. I read Annette’s story and saw that she mentioned northern Illinois. She had written her post 3 years prior but she left her email address and I was desperate. I wrote to her, told her our story and asked 2 questions: Who was your doctor and what hospital?
Three hours later I saw a response from her in my inbox. As I opened the email I screamed out loud. The doctor and hospital was the same one my niece had recommended! There was the sign I needed! I called my niece immediately. She called her friend the ENT who called the surgeon and in an hour the man was calling my cell phone telling me he wanted to see my husband on the following Tuesday.
I was convinced this was our doctor right when I realized he hadn’t blocked his phone number (later I would find out that was the kind of doctor he was…amazing!)
I told my husband that we had to keep our other appointments because this was his spine, not mine. He needed to make the decision about who was going to perform the operation.
We met with the doctor on Tuesday. He reviewed the MRI report and had 2 other radiologists do the same. He said he didn’t think the tumor (which was located on C-7, T-1 and about 4cm long) was attached directly to the spinal cord but on the outer coating. He said my husband was healthy and he was convinced he could get the whole thing out with little if any residual nerve damage. He told us the risks but also said this tumor was life threatening. My husband would die if he didn’t get it removed. He asked if we had anything big on the calendar and my husband said he was to chaperone a weekend field trip for my son. The doctor thought it was fine he went, prescribed some steroids to help with some of the numbness and said if we had any other questions we should call his cell phone. He spent 45 minutes with us…never rushing…answering all our questions and going over every bit of the preoperative, postoperative and the procedure itself. When he left my husband and I agreed this was our doctor. This was the man we trusted and we were going to cancel every other appointment and schedule his surgery for the second week in May.
The surgery took about 5 hours (he said that would be the minimum…it could be way longer…he was going to take his time) and within 2 hours I had a phone call from the OR telling me all the medical staff in the room were amazed because he was able to get out the ENTIRE tumor. The surgery went even better than expected. My husband started his recovery slowly in the hospital but once he was able to stand he took off. He never experienced any spinal headaches or infection. He was discharged after 6 days. He never used the walker or the shower chair we had gotten for him. Within days of coming home he was able to urinate and have regular bowl movements and was back to work in 2 weeks. He didn’t take anything more than Extra Strength Tylenol during the day and at night just a muscle relaxor so he wouldn’t wake up sore. I am making this sound like no big deal but if you’ve read any of the other posts you know this isn’t’ the usual recovery after this surgery. I am by no means saying our doctor is magical or will have this outcome every time. I am sharing this to give just one-person hope or a referral because our doctor saved my husband’s life but did so in a caring and kind way.
Our doctor is Dr. Egon Doppenberg. He works at NorthShore University Hospital in Evanston, Illinois. Every single person who was involved with my husband’s surgery and postoperative care was kind, caring and efficient. They not only took care of him but they made sure a very scared wife was hugged and reassured as well. Although I consider myself a “decent” writer…I have no words to describe this experience affectively. Although the diagnosis was scary and life threatening, from the minute Dr. Doppenberg called my cell phone everything that happened was a blessing. This experience was amazing. By June my husband was back at work and riding his bike. On the 4th of July he was swimming relay races with our son. I know not all schwannoma surgeries turn out this way but some do. There is hope. Other than an annual MRI my husband is done with this tumor experience. If you are reading this you either have been diagnosed with a schwannoma tumor or someone you love has. I wish you the same experience we had. Find a doctor you feel good about and trust and stay positive. I hope you have the same experience we did…amazing! I am happy to share my email address if you have any questions.
abelld@comcast.net
Good luck to you. Amy
