Post by Ashley B. on Jun 12, 2018 1:25:29 GMT -6
Hello All,
I joined this forum shortly after having my tumor removed. I received so much comfort reading all the stories of others, and just wanted to add mine. It all started in December 2017, I had just had a Lithotripsy on my right and left kidneys. This was a preventative surgery to try to rid myself of stones prior to trying to get pregnant. After they did the surgery on my left kidney I woke up, but my feet didn't. I couldn't feel them, they felt asleep, dead. Slowly the loss of feeling spread to my knees. After three weeks I called my kidney doctor and told him my symptoms to see if this was a common side effect of this surgery. He confirmed this was not at all linked to the surgery, or typical anesthesia. From there he told me I should see my Family Physician, and possibly a Neurologist.
I went to see my Family Physician, he did blood work and told me that I was vitamin-d deficient. I asked him to refer me to a Neurologist and he refused stating he could do more in office testing before sending me to a specialist. When his nurse called to tell me that the blood work came back normal other than the vitamin-d deficiency I asked if he wanted me to do a follow up appointment. She told me there was nothing in the notes to indicate that. I was frustrated and didn't feel like that doctor was taking me or my symptoms very serious, so I made an appointment with a Neurologist. After I went in for my initial appointment he ordered a nerve test, and an MRI of my brain. Nothing came back too bad on the nerve test, even though I couldn't feel the needles they were stabbing into my legs. And the brain scan came back normal as well. He told me to come back in three months if nothing improved, by this time I couldn't feel from my waist down. I saw this doctor in the end of January.
In the mean time my symptoms got worse and worse. I was not able to feel anything with my legs, and slowly that was creeping up into my waist, and then up into my chest. I went to many chiropractors, I changed my diet, I tried to exercise more. When I changed my diet, I felt more energy but none of my symptoms subsided or got any better. When I tried to exercise I would get discouraged because I couldn't pick my legs up to run anymore. Another symptom I had at night was that I felt like bugs were crawling all over my legs, even though I couldn't feel them, so strange. I was prescribed Gabapentin by the Neurologist for the "Restless Leg Syndrome" I was experiencing at night. By March I couldn't feel anything from my chest down. I was starting to pee my pants a little sometimes, and could hardly walk up stairs, I also couldn't push when I had a bowel movement. I felt like all the organs in my stomach were drooping. I thought maybe the peeing and the drooping organs were just part of having had a baby a year earlier.
Finally I made another appointment with a new General Practitioner. When I called the office the receptionist told me that if I felt any heart issues with these symptoms I should go straight to the ER. Up to this point I had not felt any heart murmurs. That night I felt my heart racing, and then skipping a beat. I don't know whether this was a side effect of the tumor, or just my stress level from thinking I had MS, or Guille-Barre syndrome. Anyhow, because the heart irregularities, I went to the ER the next day. When I went in I was put on the backburner for 10 hours. They have to treat people who are bleeding and in severe pain before people that are numb obviously. I told them I wasn't leaving until they did a spinal tap, because no one was helping me. They told me they spoke to the on call Neurologist who wanted me to do a spinal scan. I told them I would do that, but that after nothing showed up I wanted a spinal tap to help find out whether I had MS or Guille Barre.
I went in for the MRI, which was very uncomfortable because I had a braid in my hair. It was about an hour in the machine, and when I was done the MRI tech was unusually nice to me and asked if I had kids etc. I could tell something was different, and that she had perhaps found something. A few minutes after I got back into the room the ER doctor came in and told me that my spinal chord was being compressed by 92-98% by a spinal tumor. At that time they believed it was a Schwannoma. They were surprised I had walked in to the ER, and at that point I could hardly walk so I was surprised too. I had almost fallen down the stairs the day before carrying my 20 month old son. I was having to tell myself to lift my limbs, and sometimes was having to lift the fabric of my pants to move my legs. The worst part was that everyone around me just thought I was crazy. Even though my family and husband were so supportive and kind, I think they were just at a loss of how to help before we went to the ER. Anyhow, after the scan my nurse and the doctor were so much more attentive. I think my husband almost passed out after they showed us the scan. They said the Neurologist wanted to do surgery on my as quickly as he could fit me in his schedule. He wanted to do the surgery two days later, and so I was admitted to the hospital.
The doctor came in and explained the risks associated with the surgery. I was definitely rattled by the possibility of losing nerve function, but he said if I didn't do the surgery within a week to a month I would be paralyzed from my neck down pretty much. So surgery was in my best interest. He said that even if there wasn't any permanent paralysis from the surgery, if he had to touch the chord to remove the tumor there was a chance I would have to relearn how to walk etc. I was feeling at that time like anything would be better than the constant feeling of paresthesia I was feeling at the time.
Once I found out it was a tumor some other symptoms that I had started to make sense. I had a muscle in my back stretching from my shoulder to my spine right where the tumor was that was always sore. Sore to the point where I couldn't sneeze, or laugh, or drive long distances. I thought that I had injured it sleeping while I was nine months pregnant, and then would re-injure it every time I would breastfeed after my son was born, I also had a small car accident where I figured the muscle was aggravated further. I just figured it was a pulled muscle that would never get better, but this whole time it was connected to the tumor. The night before surgery they put a j-wire in the site where the surgery was to be done, so that the doctor would know specifically where to cut apparently. That pain was comparable to contractions during labor, they put the wire right in that muscle that had been aching for the last two years. Up until then I was very optimistic about the whole thing, but the pain was so severe after they put in the j-wire my confidence was waning.
The next morning I went in for surgery, I came out of anesthesia and was in the worst pain I had ever felt. Pain medication didn't help at all. I couldn't relax or get comfortable enough to even sleep. The nurses said that I should try to walk as soon as I could to see if there was any damage. The doctor came out after the surgery and told my family that he'd had to peel the tumor away from the chord, so there was no knowing if everything would come back normal. A few hours later I stood up and walked and felt the floor under my feet for the first time in three months. I cried tears of joy that I could walk and feel my legs again. I could push when I went to the bathroom, even though I didn't want to because of the pain in my back. I felt the strength of my core again. The only things I could not feel were my left breast, and my left armpit. If that is the only permanent damage, I'll take it. So for a few moments I forgot about my pain while I said a prayer of thanks for modern medicine, doctors, nurses, our 5 senses, and so many other blessings.
The first week of recovery was really tough, I was told to wear a brace and not sleep on my stomach. I wasn't supposed to lift any more than 5-10 lbs. I had 17 staples in my back and my back was soooo sore. I hated being on pain medicine and tried to stop taking it after the first week, don't ever do that. I ended up being on it full time until week 4, and then would take it periodically after that when the pain would return. It was very difficult to turn over in my sleep most of all. I'm a side sleeper and so rolling from side to side was very hard. I always felt like I was hurting my healing when I would roll from side to side. I also had for the first week and a half the worst tailbone pain. I could hardly sit, in addition to my back being so sore. I was told that it was the nerves starting to come back to life in my lower body since those were the nerves that were out of commission the longest. I didn't lift my arms above my head really or stretch or anything for at least two weeks. I was so nervous I would hurt myself or the wound.
I got my staples out after 10 days, that felt like someone was plucking huge painful hairs out of my back. My pain subsided VERY slowly over the next several weeks. At six week I finally felt like I was sleeping much more comfortably and rolling wasn't hurting me quite as much. At seven weeks the pain returned while I would sleep, and some. It lasted for about a week and a half. I stopped feeling any major back pain at about 2 1/2 months. At 3 months I started physical therapy and my back pain is back with a vengeance. I am sure it is because those muscles have atrophied and are being built back up. In addition to the pain I started having shock headaches in the back left part of my skull that would come every 1-3 minutes, they have been happening for the last 3 days and are slowly getting farther and farther apart. I had an MRI today to make sure everything is healing ok and rule out spinal fluid leaks. I will wait to see what the doctor says, but I am nervous to resume physical therapy if that is what is causing the headaches. In my post op appointment with my doctor, he told me that the tumor was not a schwannoma as originally thought, but that the report showed it was a meningioma.
I went through periods throughout my undiagnosed symptoms, diagnosis, surgery, and recovery where I was very depressed. Typically I fight depression with sunshine, and exercise, and I wasn't able to do that very well for the last six months. I think going through this can be very discouraging. Anything that alters your lifestyle, or limits your bodily capabilities can really affect you mentally. I think not just with depression, but with anxiety, and hypochondriac type issues. I think the things that helped me most are God, and trying to be grateful each day for the small amounts of progress I was making. What a miracle and blessing to have this type of modern medicine available to us. I went to Hawaii at around 7 weeks post surgery and felt the sand for the first time in 5 months, these little things would bring me happiness and hope in my recovery. I would watch the video of me walking in the hospital and crying because I could feel my legs.
My religion brought me so much comfort throughout this process if you are interested in finding out more about your unique spirit, or need uplifting messages while you are healing check out http://www.lds.org. Once again I am so grateful to have found this board, and gained so much comfort from hearing about other peoples experiences. If anyone every has any questions about my journey please feel free to reach out to me, I would love to talk with a fellow spinal tumor warrior.
Love to you all,
Ashley
I joined this forum shortly after having my tumor removed. I received so much comfort reading all the stories of others, and just wanted to add mine. It all started in December 2017, I had just had a Lithotripsy on my right and left kidneys. This was a preventative surgery to try to rid myself of stones prior to trying to get pregnant. After they did the surgery on my left kidney I woke up, but my feet didn't. I couldn't feel them, they felt asleep, dead. Slowly the loss of feeling spread to my knees. After three weeks I called my kidney doctor and told him my symptoms to see if this was a common side effect of this surgery. He confirmed this was not at all linked to the surgery, or typical anesthesia. From there he told me I should see my Family Physician, and possibly a Neurologist.
I went to see my Family Physician, he did blood work and told me that I was vitamin-d deficient. I asked him to refer me to a Neurologist and he refused stating he could do more in office testing before sending me to a specialist. When his nurse called to tell me that the blood work came back normal other than the vitamin-d deficiency I asked if he wanted me to do a follow up appointment. She told me there was nothing in the notes to indicate that. I was frustrated and didn't feel like that doctor was taking me or my symptoms very serious, so I made an appointment with a Neurologist. After I went in for my initial appointment he ordered a nerve test, and an MRI of my brain. Nothing came back too bad on the nerve test, even though I couldn't feel the needles they were stabbing into my legs. And the brain scan came back normal as well. He told me to come back in three months if nothing improved, by this time I couldn't feel from my waist down. I saw this doctor in the end of January.
In the mean time my symptoms got worse and worse. I was not able to feel anything with my legs, and slowly that was creeping up into my waist, and then up into my chest. I went to many chiropractors, I changed my diet, I tried to exercise more. When I changed my diet, I felt more energy but none of my symptoms subsided or got any better. When I tried to exercise I would get discouraged because I couldn't pick my legs up to run anymore. Another symptom I had at night was that I felt like bugs were crawling all over my legs, even though I couldn't feel them, so strange. I was prescribed Gabapentin by the Neurologist for the "Restless Leg Syndrome" I was experiencing at night. By March I couldn't feel anything from my chest down. I was starting to pee my pants a little sometimes, and could hardly walk up stairs, I also couldn't push when I had a bowel movement. I felt like all the organs in my stomach were drooping. I thought maybe the peeing and the drooping organs were just part of having had a baby a year earlier.
Finally I made another appointment with a new General Practitioner. When I called the office the receptionist told me that if I felt any heart issues with these symptoms I should go straight to the ER. Up to this point I had not felt any heart murmurs. That night I felt my heart racing, and then skipping a beat. I don't know whether this was a side effect of the tumor, or just my stress level from thinking I had MS, or Guille-Barre syndrome. Anyhow, because the heart irregularities, I went to the ER the next day. When I went in I was put on the backburner for 10 hours. They have to treat people who are bleeding and in severe pain before people that are numb obviously. I told them I wasn't leaving until they did a spinal tap, because no one was helping me. They told me they spoke to the on call Neurologist who wanted me to do a spinal scan. I told them I would do that, but that after nothing showed up I wanted a spinal tap to help find out whether I had MS or Guille Barre.
I went in for the MRI, which was very uncomfortable because I had a braid in my hair. It was about an hour in the machine, and when I was done the MRI tech was unusually nice to me and asked if I had kids etc. I could tell something was different, and that she had perhaps found something. A few minutes after I got back into the room the ER doctor came in and told me that my spinal chord was being compressed by 92-98% by a spinal tumor. At that time they believed it was a Schwannoma. They were surprised I had walked in to the ER, and at that point I could hardly walk so I was surprised too. I had almost fallen down the stairs the day before carrying my 20 month old son. I was having to tell myself to lift my limbs, and sometimes was having to lift the fabric of my pants to move my legs. The worst part was that everyone around me just thought I was crazy. Even though my family and husband were so supportive and kind, I think they were just at a loss of how to help before we went to the ER. Anyhow, after the scan my nurse and the doctor were so much more attentive. I think my husband almost passed out after they showed us the scan. They said the Neurologist wanted to do surgery on my as quickly as he could fit me in his schedule. He wanted to do the surgery two days later, and so I was admitted to the hospital.
The doctor came in and explained the risks associated with the surgery. I was definitely rattled by the possibility of losing nerve function, but he said if I didn't do the surgery within a week to a month I would be paralyzed from my neck down pretty much. So surgery was in my best interest. He said that even if there wasn't any permanent paralysis from the surgery, if he had to touch the chord to remove the tumor there was a chance I would have to relearn how to walk etc. I was feeling at that time like anything would be better than the constant feeling of paresthesia I was feeling at the time.
Once I found out it was a tumor some other symptoms that I had started to make sense. I had a muscle in my back stretching from my shoulder to my spine right where the tumor was that was always sore. Sore to the point where I couldn't sneeze, or laugh, or drive long distances. I thought that I had injured it sleeping while I was nine months pregnant, and then would re-injure it every time I would breastfeed after my son was born, I also had a small car accident where I figured the muscle was aggravated further. I just figured it was a pulled muscle that would never get better, but this whole time it was connected to the tumor. The night before surgery they put a j-wire in the site where the surgery was to be done, so that the doctor would know specifically where to cut apparently. That pain was comparable to contractions during labor, they put the wire right in that muscle that had been aching for the last two years. Up until then I was very optimistic about the whole thing, but the pain was so severe after they put in the j-wire my confidence was waning.
The next morning I went in for surgery, I came out of anesthesia and was in the worst pain I had ever felt. Pain medication didn't help at all. I couldn't relax or get comfortable enough to even sleep. The nurses said that I should try to walk as soon as I could to see if there was any damage. The doctor came out after the surgery and told my family that he'd had to peel the tumor away from the chord, so there was no knowing if everything would come back normal. A few hours later I stood up and walked and felt the floor under my feet for the first time in three months. I cried tears of joy that I could walk and feel my legs again. I could push when I went to the bathroom, even though I didn't want to because of the pain in my back. I felt the strength of my core again. The only things I could not feel were my left breast, and my left armpit. If that is the only permanent damage, I'll take it. So for a few moments I forgot about my pain while I said a prayer of thanks for modern medicine, doctors, nurses, our 5 senses, and so many other blessings.
The first week of recovery was really tough, I was told to wear a brace and not sleep on my stomach. I wasn't supposed to lift any more than 5-10 lbs. I had 17 staples in my back and my back was soooo sore. I hated being on pain medicine and tried to stop taking it after the first week, don't ever do that. I ended up being on it full time until week 4, and then would take it periodically after that when the pain would return. It was very difficult to turn over in my sleep most of all. I'm a side sleeper and so rolling from side to side was very hard. I always felt like I was hurting my healing when I would roll from side to side. I also had for the first week and a half the worst tailbone pain. I could hardly sit, in addition to my back being so sore. I was told that it was the nerves starting to come back to life in my lower body since those were the nerves that were out of commission the longest. I didn't lift my arms above my head really or stretch or anything for at least two weeks. I was so nervous I would hurt myself or the wound.
I got my staples out after 10 days, that felt like someone was plucking huge painful hairs out of my back. My pain subsided VERY slowly over the next several weeks. At six week I finally felt like I was sleeping much more comfortably and rolling wasn't hurting me quite as much. At seven weeks the pain returned while I would sleep, and some. It lasted for about a week and a half. I stopped feeling any major back pain at about 2 1/2 months. At 3 months I started physical therapy and my back pain is back with a vengeance. I am sure it is because those muscles have atrophied and are being built back up. In addition to the pain I started having shock headaches in the back left part of my skull that would come every 1-3 minutes, they have been happening for the last 3 days and are slowly getting farther and farther apart. I had an MRI today to make sure everything is healing ok and rule out spinal fluid leaks. I will wait to see what the doctor says, but I am nervous to resume physical therapy if that is what is causing the headaches. In my post op appointment with my doctor, he told me that the tumor was not a schwannoma as originally thought, but that the report showed it was a meningioma.
I went through periods throughout my undiagnosed symptoms, diagnosis, surgery, and recovery where I was very depressed. Typically I fight depression with sunshine, and exercise, and I wasn't able to do that very well for the last six months. I think going through this can be very discouraging. Anything that alters your lifestyle, or limits your bodily capabilities can really affect you mentally. I think not just with depression, but with anxiety, and hypochondriac type issues. I think the things that helped me most are God, and trying to be grateful each day for the small amounts of progress I was making. What a miracle and blessing to have this type of modern medicine available to us. I went to Hawaii at around 7 weeks post surgery and felt the sand for the first time in 5 months, these little things would bring me happiness and hope in my recovery. I would watch the video of me walking in the hospital and crying because I could feel my legs.
My religion brought me so much comfort throughout this process if you are interested in finding out more about your unique spirit, or need uplifting messages while you are healing check out http://www.lds.org. Once again I am so grateful to have found this board, and gained so much comfort from hearing about other peoples experiences. If anyone every has any questions about my journey please feel free to reach out to me, I would love to talk with a fellow spinal tumor warrior.
Love to you all,
Ashley